Re: [rheumatic] faith and disease (off topic)

2006-10-31 15:52:50

Susan....This is a great message. I agree 100%. Depression and self pity
are
great problems with this disease. We have known for years that the mind is
the most powerful tool one has in helping ourselves. It affects our entire
immune system and how it functions. What we think is often a self fulfilling
prophesy.
Why do placebos work???? Because the mind believes they will!!! If you
believe you will eventually find an answer, eventually you probably will.
Never stop believing and trying to find the answer. Martha

caffeine and MTX

2006-10-31 05:02:28

I found this article and thought it was something to consider.
Caffeine may hinder rheumatoid arthritis drug
By Amy Norton
Last Updated: 2003-02-26 12:18:30 -0400 (Reuters Health)
NEW YORK (Reuters Health) - The caffeine provided by less than two
cups of coffee a day might be enough to dull the effects of the drug
methotrexate in people with rheumatoid arthritis, a small study
suggests.
Israeli researchers found that among 39 adults with rheumatoid
arthritis, those with the highest caffeine intake--comparable to
about one-and-a-half cups of coffee or more per day--showed a weaker
response to methotrexate than did patients with the lowest caffeine
intake.
According to the researchers, caffeine may interfere with
methotrexate's ability to fight rheumatoid arthritis because caffeine
acts on cell receptors called adenosine receptors. It's not yet clear
why methotrexate helps rheumatoid arthritis, but one theory is that
it increases adenosine production, which in turn reduces the
inflammation that marks rheumatoid arthritis.
The investigators, led by Dr. Gideon Nesher of Shaare-Zedek Medical
Center in Jerusalem, call for larger studies to look at the possible
interaction between methotrexate and caffeine in people with
rheumatoid arthritis.
Their report appears in the February issue of the journal Arthritis &
Rheumatism.
"I think the findings are intriguing," Dr. John Klippel, medical
director of the Atlanta-based Arthritis Foundation, told Reuters
Health.
Klippel pointed out that "one has to be cautious" in interpreting the
results of such a small study.
But he also said rheumatoid arthritis patients on methotrexate "might
want to consider" easing up on caffeine.
"It might be time to start thinking about limiting caffeine intake,"
Klippel said.
He noted that earlier research in animals had suggested a caffeine-
methotrexate connection, and this latest study has "taken the next
step" by finding a relationship in people with rheumatoid arthritis.
All of the study participants were recently diagnosed with rheumatoid
arthritis and were started on 7.5 milligrams (mg) of methotrexate a
week. Their symptoms and daily diets were followed for three months,
and patients were analyzed in three groups based on their caffeine
intake.
Nesher's team found that by the end of the study, participants with
the highest caffeine consumption showed less improvement in morning
stiffness and joint pain compared with the lowest-intake group.
According to the researchers, their findings suggest that a daily
intake of more than 180 mg of caffeine dulls the effects of
methotrexate compared with caffeine doses of less than 120 mg per
day.
A typical cup of brewed coffee contains around 120 mg of caffeine.
Klippel said that it's difficult to make specific dietary
recommendations based on these findings. However, he noted,
rheumatoid arthritis patients on methotrexate who want to watch their
caffeine intake might try limiting themselves to one cup of coffee a
day.

Severe Lupus

2006-10-31 02:31:29

I know a woman with severe lupus for 10 years. Labs very high - She
has had some damage to every organ even brain now she is having
problems with her bone marrow where the lupus has affected her bones.
She is completely bedridden and cannot sit up. She has been on all
the traditional lupus meds - heavy hitters. I wonder if AP could help
her given the severe nature of her disease. Anyone out there had
lupus this bad

Uncertain

2006-10-30 17:06:42

Hi to all. I am on Methotrexate and hvae been for a year now. It
worked wonders on the two swollen digits on my left hand. I realize
that psoriatic arth. is linked to psoriasis, but I have little to
none. I have been fine until lately. My right foot has been bothering
me. Sometimes the whle foot swells, but mostly the top of my foot and
toes. I went to specialist the other day and he said "pretty sure
it's arthritis"...gee thanks. Anyway he gave me three choices,
Sulfasalazine along with methro, or embral? is it? But no way can I
inject myself, and then he mentioned Remicade...that sounded scary
for sure. Has anyone else had these drugs and foot problems. Way back
when my Dr. told me that Metho would ease the arth. and stop any more
from coming.....so now, how come I have it in my foot. I am also
going to see a foot guy next week, and see what he says.
[Editor's Note: Hi Janisse. You don't say what kind of specialist you are
seeing but I hope it is a rheumatologist. It is hard to imagine a rheumy saying
"pretty sure it's arthritis". What lead your doctor to conclude you have PA?
Do you have "ugly" nails? Flaky elbows? Anything? Two of the drugs you
mentioned are used by many people here. Yes, Remicade is given via infusion,
but the frequency is only once every six weeks and many people come to think of
the infusion sessions as periods where they can get away from it all and relax.
The other medication you mentioned is Enbrel which is given by self injection.
Believe me, we were all terrified to do it the first time but for those of us
who have been injecting Enbrel or Humira for a while, it becomes second nature
and is no longer a big deal. Even little kids with diabetes learn how to self
inject, so it IS something we can overcome. However, if you can't bear the
thought, perhaps a family member or close friend would be willing to learn how
to give an injection so you don't have to do it yourself. These are potent meds
to be sure, but they help many, many people. I have lived with foot problems
since I was 16 (I'm now 55), so I understand what it is like to live with
omnipresent foot pain. Eventually, I also started to break bones in my feet
(and feet have a lot of bones!). I inject Humira once every two weeks and feel
so much better than I have felt in decades so instead of dreading injecting, I
actually find myself looking forward to it. If you really have PA, a "foot guy"
is not as important as finding an outstanding rheumatologist that you can learn
from and trust. Wishing you wellness, Kathy F.]

Lose weight

2006-10-30 13:33:48

Hi its Dazzahack again, i was if i could ask for some help.
As everybody on this group knows movement at times can be painfull
and exercise can be very restrictive but thing is i need lose weight
not much.
I would like tips on dieting and exercise whilst dealing with PA
Many Thanks
dazzahack
[Editor's Note: Hi, Dazza. One sure way to lose weight is to eat less and I
don't mean that as a joke. Try serving your regular portions and then removing
one third or one half off the plate before you take a bite. This will
immediately cut your caloric intake by a third to a half and that's a big drop.
You will still be able to eat the things you enjoy - you'll just eat less of
them. For many arthritics, the best form of exercise is aquatics. We are all
more buoyant in the pool and the lift from the water makes everything less
painful to do. YMCA/YWCAs in most cities have special Aquatics for Arthritics
programs. If you are in the USA, go to www.arthritis.org (the Arthritis
Foundation's home page) and from there you can find an aquatics program near you
if there is one. If not, they have a tape you can order so that you can go to
any pool and do the exercises yourself. Some people here are still able to do
other forms of exercise, but many of us who are "beyond that" in terms of
disease evolution, are still able to enjoy a good round of exercise in the pool.
I recently got an 80 year old aunt to give it a try and now she goes to the pool
7 days a week. We're on vacation this week so guess where I'm going later today
- yep - to the pool. It's the best I feel in life. Kathy F.]

Re: Mother of 14y.o.son

2006-10-30 11:13:48

Hi Tazchic,
I, too, feel so badly your son was misdiagnosed and has such an
agressive form of pa. I have the mutilans subset which is the severe
damaging type and can quickly destruct bone in a flare. My hope is
that your rheum will treat his pa as agressively as it is acting.
There are so many more medications available now than when I was his
age. I think having it as a teenager was the hardest for me. It' s
hard to be different at that age. To give you some hope, I was able
to finish school and college(university) and work full time for
years. Also, I have been able to accept the illness although it sure
took awhile and I didn't want to talk about it as a teen. Please let
us know if we can help with information or in any other way. Perhaps
your son would at least lurk here if he doesn't want to post.
best,
Marti

Re: [rheumatic] To everyone who sent me emails....

2006-10-30 03:15:30

Jennifer,
What disease have you been diagnosed with? The fact that all of your
tests come back negative would indicate that you do not have RA and
that Minocin may not be right for you. Your first step should be a
solid diagnosis. Get second and third opinions, even if that means
paying out of pocket.
I too have experienced a lot of joint pain with negative labs. My
fourth doctor finally diagnosed my condition as polymyalgia rheumatica (PMR).
I too live in SoCal (Irvine), and will be pleased to share my
experiences with you by phone. Please call me. I will send you a
separate email with my contact information.
Sincerely, Harald

To everyone who sent me emails....

2006-10-29 23:37:42

Thank you so much. Your words of encouragement mean a lot to me. I
am undx, but have had waxing and waning joint pains for a year.
This time they've gone on for 5 weeks but are slowly lessening
again. My tests all come back neg. My doctor thinks I'm crazy
because there's never any swelling or redness and virtually no
stiffness. I had a terrible Parvovirus infection last year when my
kids all got Fifth's Disease. I took that joint pain in stride
because I knew that it often happened to adults who got it. It's
just that it never seemed to go away and now it's getting worse, not
better. Ihave an appt with a rheumatologist tomorrow and I'm afraid
she'll roll her eyes and dismiss me as well since there's nothing to
observe to "prove" I have serious joint pains... I'm sorry... This
all sounds so lame compared to your real dx and pains, but I'm a
mess after a year of this roller coaster. I'm crying because I'm
sick and tired of being sick and tired. I'm sick of being offered
Paxil and Lexipro rather than pain relief. It's so hard to be
looked at like a liar when you go for help. I have three kids who
have had to ride this nightmare out with me and right now I see no
end. I saw on line that I could order Minocin from online
drugstores and as crazy as it sounds, I'm tempted to do it and treat
myself since no one seems willing to help me. Please, if you read
this and can offer anything.. please write me. I'm not just a fake
person on the internet. I'm a real person who really needs some
help. Has anyone had joint pain that presented in a way similar to
mine and had to go through not being believed or given any pain
medication or treatment? I live in SoCal. If you know a doctor
anywhere in SoCal, tell me where to find him/her. I'll make an appt
today.

Kathy is the BEST!!!

2006-10-29 14:00:53

Dear Janet and Kathy,
Janet I can't agree more with you on Kathy. I've only been in 3 other
support groups, when I was trying to figure out what was wrong with me, and
I can tell you some of the moderators are really stinkers. Kathy is a great
person, with super knowledge, and a kind heart and a tremendous amount of
compassion. We are so lucky to have her and I feel bad I haven't thanked
her enough. So THANK YOU KATHY! Love Fran
[Editor's Note: Hey, now, STOP IT!!! Thank you, Fran, but you are clearly one
of the guiding forces of this list that helps to make it what it is. You are
one of the leaders that people look to when it comes to setting the tone of the
list and you are quite the role model! A list is only as informative and as
supportive as its CONTRIBUTORS make it and every single person who posts helps
provide all the list members with something they need - and sometimes it is just
knowing that "I'm not the only person in the world that feels this way and that
has these weird things happening to me". So let's turn the kudos in the proper
direction - towards all of you who post! Kathy F.]

Re: [rheumatic] Does the antibiotic therapy really work?

2006-10-29 05:03:58

YES!! YES!! YES!!! After many years of standard treatment I was
discouraged, deformed and in major pain. I felt AP was something that sounded
logical and felt I had nothing to lose. How I wish I had found it sooner. I
have
been on Minocin for five years now and have done wonderfully. Bloodwork is
normal and I have NO PAIN AT ALL. In fact the only thing I am really angry at
is myself .....for listening to my rheumatologist who told me it would never
work and I was kidding myself. If I had stayed with her I would probably
now be in a wheelchair!! Martha

Re: [PsoriaticArthritis] Sulphasalazine thank you

2006-10-29 01:00:56

Hi Billie,
I'm another Canadian, but I mostly lurk. :-)
Re: the mouth sores. Kathy is right about taking folic acid. Also, if the mouth
sores are a problem even with folic acid, your RD can prescribe folinic acid and
usually that'll take care of it. I think most people are fine with just the
folic acid, though.
As far as choosing between sulfphasalazine and MTX, I was on them both at the
same time so I never had to make that choice; but statistically it seems that
MTX has a higher success rate than SSZ. On the other hand, SSZ does tend to have
fewer side effects, but for me personally I know that the MTX side effects are
generally fairly easily-handled, so if I *were* choosing between the two I would
go for MTX just because of its track record. Just my two cents.
(BTW, I'm still on MTX after almost two years, but the SSZ was short-lived for
me; I'm a rare case where its side effects were worse for me than the MTX side
effects were. So just another point: everyone's different, and you never know
what will work for you!)
Tracy

Sulphasalazine thank you

2006-10-28 23:26:44

Thank you all for your response to my question. I'll make the
decision as to which drug to use sulph or MTX (or is it MXT?)and am
going to suck it up and start next week. Have been hiding from this
thing far to long (10 years now) and unfortunately it didn't
disappear. (don't we wish). I'm leaning towards the MTX, although
it will change the frequency of "happy hours" with friends. I'm
concerned about the mouth sores, but the sulph can cause anxiety so
it seems, and that is another problem. Gosh, it's like choosing
wallpaper - too many choices - lol. Thank you for this site = it's
great to know we are not alone and to have such a vast store of
knowledge at hand. I'm from Canada, by the way. Seem to have a lot
from Australia and Great Britain (or are they the most verbal
ones)!! Just kidding. Have a great day.
Billie
[Editor's Note: Congratulations, Billie, on reaching a major milestone - the
decision to take a powerful medication to help you combat a powerful disease.
Please be sure to take folic acid with the MTX as it will help reduce the
likelihood of mouth sores. I had them early on when I first started on MTX but
they didn't last for long and MTX initially helped me feel tons better. You are
correct in your observation - our British, Australian and Kiwi members seem to
have been given the gift of gab but I guess that's what happens when you wear a
bejeweled tiara for so long. Take Martin, for example... LOL. Kathy F.]

Re: [rheumatic] I just started the AP 2 weeks ago with 200mg a day for a week then 100mg a day.

2006-10-28 14:04:19

Hi there,
It is not unusual to get worse before you get better. Read about
"Herxheimer reaction" in the protocol at
www.rheumatic.org
It actually can be a good sign because it shows that AP is working. I
have RA. I initially got worse and then slowly stated to improve. I did the
two step forward -one step back routine for a few years with the flares
becoming less sever and spaced further apart. Now I have only minimal
symptoms, off and on.
200mg a day may be too much to start. We generally recommend to start
50mg Monday Wednesday Friday and slowly work up from there to avoid a too
severe Herx reaction.
Take care,
Ute

Lumbar Spine

2006-10-28 09:34:08

Hi Rachel
I am presently in physical therapy receiving traction as you describe.
I have an awesome rheumatologist as well as orthopedic physician. They seem
to think the pt is helping the herniation but aggravating the degeneration.
Also had a MRI of my knee and the orthopedic is looking at the films later
today and is going to call me. Possibly going to try Synvisc again, which
helped before.
Will keep you posted.
Barb

Laughter is the best medicine

2006-10-28 09:11:04

Here are some very funny videos.
Be happy they are not you.
http://www.my-funny-stuff.com/accident/index.htm
Tom

mum of 14y.o.

2006-10-28 00:26:37

Marti,thank you.How old were you when PA first went BANG? How did
your parents 'help'? He's been great.When he was put on Prednisolone
(a few weeks ago),anger reared it's head. In a way it was good
because he had been so accepting and calm up till then.When they
iniatially thought it was a form of bone cancer, Owen was unnervingly
calm.I felt 'ripped off' for him.His attitude was "it's only my
foot,not an arm or leg or my head".But last Thursday when he saw the
Rheumy, it was all a little bit much.He just wants to get the
methotrexate injections over with, so he can try and get his life
back.I think,up until then, he thought 'it'would be fixed/cured and
go away.
Arcoxia isn't available in Australia, and Arova is restricted, for
use when metho fails.
Joining this group was the best thing I've done.I've already
learnt tonnes.And when the time comes for my son to ask Questions, if
I don't have the answers, I know where to send him to find out.THANK
YOU ..
Leanne in Tasmania

Re: [rheumatic] Mayo Anyone?

2006-10-27 20:55:31

I went to Mayo. I have several autoimmune diseases and some other issues. It
was not a pleasant experience for me. I spent every day for about two weeks
waiting in those giant waiting rooms to see doctors who didn't seem to care the
least bit about the patients coming to see them.
It was an exhausting experience and very costly. My doctors at home had been
sure to have all the tests they could think of done before I went, so my file
would be complete.
The Mayo doctors wouldn't even look at the results. They insisted on
repeating every single one of the test themselves. Then they decided that they
really
couldn't offer anything better than my regular doctor was already doing.
Just one example of the waiting: I had an appointment at 7:45am and didn't
get to see the doctor until afternoon. How can any doctor be that far behind at
that time of the morning?
They just expect you to sit and wait and be tested and tested.
It was a complete waste of my time, energy, and money. I would never go back.

Re: [rheumatic] loosing faith in rhumatologist

2006-10-27 07:32:01

Mia, you might want to read some of the stories on www.rheumatic.org of
people with your diagnosis who have used the low dose antibiotic therapy
successfully to see if you would like to try it. Information concerning the
therapy is also on that webpage. There are doctors in your state
experienced in the use of this therapy and I would recommend you make an
appointment with one of them. They are in Philadelphia, Allentown, Leola and
Pittsburgh. Let me know if you want their contact information.
As for the Sjogren's. I had that problem too. The antibiotic therapy
seemed to solve that problem as well as the RA.
If you are using eye drops, I suggest you try Dwelle and/or Dakrina
available from www.dryeyezone.com. I have found them to be better than
anything sold in the local drug store.
Hopefully others on this list will share their experiences with you.
Ethel

Re: [PsoriaticArthritis] mum of 14y.o.

2006-10-27 07:31:29

Hi Leanne,
I hope they can now manage to arrest this for Owen. I just didn't realise
that people could be hit as devastatingly quickly as he has been. He really must
be wondering what he has done to deserve this. I'm not surprised he is
angry.
The good thing is that he has got you there behind him to help him cope with
the inevitable changes there will be in his life.
I hope he can get all the help he needs and deserves from now on.
Take care,
Martin

"Other MTX side effects?

2006-10-26 23:17:55

As I have increased my dose to 20 mg per week, I have been concerned
about side effects that might occur. Has any study been conducted for
sexual side effects, loss of sex drive or ED?

Re: [rheumatic] Is this Group still active?

2006-10-26 11:04:18

Cheryl, I notice you have just joined the group and we welcome you. You are
wondering if you missed any posts. There are over 1700 people subscribed to
this list which use to be very active until a few years ago when we had some
people join us from another group whose objectives were different from ours.
It caused quite a stir with subscribers scurrying into the 'woodwork', and
things have not been the same since.
These people have formed their own group but now it seems when people do
post on this list for or with information or needing support, responses for
the most part are made privately. This has been a concern to the moderators
and we would like feedback from the group as to whether you still value this
list.
Ethel

Research Study: Older Adults' Perceptions of Clinical Trial Research

2006-10-26 09:04:22

Are you over 49 years of age? If so, you are invited to participate in
a research project regarding older adults� perceptions of clinical
research. Your contributions to this study will lead to development of
knowledge and tools that could benefit researchers working in this
area. If agree to participate, you will be asked to complete a set of
questionnaires, which will required about 30 minutes of your time. You
may also be asked to fill out the same questionnaire 3-6 weeks later.
You will not be asked to identify yourself.
If interested or wishing more information, please go to:
http://www.sfu.ca/~phchou/
With Regards
Ben Chou
phchou@...

Re: [PsoriaticArthritis] Uncertain

2006-10-26 06:21:37

Hi Janisse,
I can certainly identify with the foot pain. I am surprised that anyone
would tell you that any of these drugs would stop the PA getting any worse. That
could well be the case with most of the people taking it, I don't know, but I
wouldn't have thought they could guarantee it. I see Kathy has already given
you good advice so I can't add anything to that.
Good luck in the future with everything.
Martin

Two questions

2006-10-25 21:24:44

1. Has anyone ever had to send outdated Enbrel back to tradeout for new Enbrel?
If so, how did you do it?
2. For the women, do you notice your flares are worse during your period or am
I just odd?
Thanks,
Rae

Re: mum of 14y.o.

2006-10-25 16:45:05

-Hi Leanne,
I was 10 when the pa started but it really went BANG at 14, same as
your son. My mother was a huge help. Mostly she encouraged me to
pursue normal activities and didn't treat me as an invalid. She was
always quick to stand up for me if there was a problem and she
pursued the best treatments she could, taking me to mayo clinic which
is a big well known medical center here. The one thing we didn't do
was talk a lot about it. I don't know if this was because I just
couldn't deal with talking about it but looking back I think it all
seemed bigger in my head until I was able to talk. A group like this
would have been great.
Clearly, you are a great mother. You are taking the time to learn
about the illness and want to help your son in whatever way you can.
there is a whole grief process when diagnosed with a life long
illness. It goes up and down until acceptance is reached. I think
this process is especially hard for a teenager to grasp. Teens feel
invincible by nature. I am SURE the family goes through their own
grief process and especially the mothers!
We are living in a hopeful time for pa. After years of the same few
medicines they are developing new ones quite quickly now and learning
more about how the disease process works all the time.
It is a strange thing to say but it might have been easier if he had
a small cancer that could be removed by surgery.
great to have you here,
Marti

Mutual admiration society

2006-10-25 10:35:17

Hi all,
Just wanted to chime in in agreement with all the compliments. We
have a great, warm group and the humor brightens my day. Kathy is
doing a great job and Janet....don't forget yourself...LOL! Your
medical knowledge really helps us all. Guess we could all be wearing
tiaras...:)
Thinking of the folks in Ivan's path.
take Care,
Marti

Re: [PsoriaticArthritis] Two questions

2006-10-25 02:04:30

I am not currently taking enbrel however to you second question, yes symptoms
see to get worse right before starting my period and while i am on my period. I
have asked my Rheumy about this but have not gotten an answer about this.

thanks/question

2006-10-25 01:42:55

Hi,
I want to say that I also appreciate the feedback, support, and
information I gained from members of this group. I wasn't aware of
the group in its previous incarnation, but I have benefited quite a
bit--thank you to those who organize it.
ew
and now I'll ask a question: has anyone noticed that when certain
large areas of the body (such as a knee) are cured with the minocin,
the toes and fingers are the last to improve? This is my experience
and I'm wondering if it is typical. I am not enjoying even the 50mg
I take twice a week, and wonder if I could do even less--say 25 mg
twice or three times. . . . any ideas?

RE: [rheumatic] Mayo Clinic- Rochester

2006-10-24 10:31:41

Hi Pat, I have to say, my experience at Mayo mirrored yours.
Den and Skip

RE: Pain at night?

2006-10-24 10:19:55

Dear Martin, I'm so sorry you were so miserable last night. I hope you can
sleep in this morning and wake up without pain. I know that's not real
likely, but I can hope for you.
Why is it at night everything seems to hurt more? I know you said you had
rain and maybe that was all you were dealing with, but for me at night the
pain is so bad I could cry sometimes. Maybe my defenses are weaker since
I'm tired from the day or just the fact that everyone else is asleep and I'm
left dealing with it alone? I just wondered if anyone else noticed an
increase at night? I do have it bad when I wake up of course, but normally
that lets up once I get my pain medication down.
I saw my pain doctor yesterday and he put me on Gabitril for the neuropathic
pain I'm dealing with. Has anyone ever tried this drug? He acted like it
was similar to neurotin, but doesn't have the same side effects. (Neurotin
was simply too strong for me, and I could never take it.) He also thought
it might help me sleep at night. I did seem to sleep better last night as
well. Though I do have a headache this morning, but that could be from all
this hurricane news again...lol.
He is also sending me for an MRI of my lumbar spine and my neck area. Plus
a bone density test since the last one I had was over 2 years ago. So at
least he is trying, though I do miss my regular doctor. This is the new
doctor at the clinic and my regular pain doctor said he wanted someone else
to look over my case with a new set of eyes. I am happy with the new
doctor, but I really did like the other one too. I guess I should be just
glad for the first time, I have two doctors that I like so well. I just
wish everyone in pain could go to my pain management clinic. They are so
compassionate and professional. They never make you feel bad for being in
pain or treat you like a drug addict.
Well Martin, I wrote to say I'm sorry you are feeling bad and instead talked
all about myself. Really nice, right? Sorry about that and I hope things
are better this morning. The rain does bother me too, but it can't be to
bad or I would be dead from all the rain we have had here in Florida lately.
Anyway, take care of yourself and I hope things are better today. Does a
heat pad ever help you?
Love, Fran

Re: podiatrist

2006-10-24 00:04:16

Sue, I've been wanting to get a pedicure, but my poor old flaky
deformed toes cause me embarassment. It's probably the best thing we
can do for our feet. I'm gonna go for it!! And thanks for the
encouragement
Billie

vacuuming

2006-10-23 19:20:58

Hi everyone
Just wanted to say... in regards to my treatment
plans...
The one thing I took very seriously was when the
physio told me NO VACUUMING hehehehe
It works for me :-)
Take care
Rosee

Pain at night?

2006-10-23 16:25:32

Hi Fran,
Sorry to moan but I didn't have a good night at all. I didn't realise it at
the time but when I sent that mail out I was actually not too bad compared to
the way I ended up. Then I had to get up at 08:00 this morning. I had to
drive to Dundee and back yesterday. It was 2.5 hours up and just under 2 hours
back (90 min break in between) so I guess that and the weather was what caused
the problem. Serves me right for feeling so smug recently because I wasn't
too bad
I don't know why it is but I certainly do struggle more at night time for
some reason.
While I am on. Anyone had this problem? (If I can manage to explain it)
While driving home last night, every time I took a deep breath, I felt as if
something was moving at the top of my rib cage. (couldn't quite tell if it felt
like a rib or something in between two ribs) Does this make sense?
And before you lot start I don't want anyone advising me to stop breathing.
Lol
Thanks for your good wishes Fran. Hopefully things will improve again soon.
Good luck with your upcoming tests.
Take care,
Martin

Re: [PsoriaticArthritis] Mutual admiration society

2006-10-23 10:06:52

In a message dated 9/11/2004 7:00:59 AM Eastern Standard Time,
mlw402@... writes:
Just wanted to chime in in agreement with all the compliments. We
have a great, warm group and the humor brightens my day. Kathy is
doing a great job and Janet....don't forget yourself...LOL! Your
medical knowledge really helps us all. Guess we could all be wearing
tiaras...:)
Thinking of the folks in Ivan's path.
Aw shucks, thanks for the compliment. I really think your contibution to
the group is wonderful as well. I don't know what I would do without you
all. You make my day. We are all parts of a puzzle here and without one
piece you would not have a picture. Wow, how poetic I am getting.
Again, I agree everyone in Ivan's path, be safe.
Janet

Unlikely help with shots

2006-10-23 03:03:19

I inject Enbrel.3 vials a week....not long ago my eleven yr old
granddaughter thought she might need to learn how to do it...she was soooo
serious about maybe needing to know it someday when if I wasn't able to give
them to myself. She did it like a pro. Last weekend I asked the four year
old GD if she wanted to give me my shot (It was the 2 vial day). She wanted
me to show her how...and she watched as I gave myself the first one. Then
she started to hedge on her giving me the second one...."I might hurt
myself!" She wasn't worried one bit about hurting me! Lol
She ultimately gave me the shot.or at least about 90% of it.the rest sorta
shot across the room. I had a big bloody spot where it ripped through the
skin a little...I thought she'd be all excited about being my "nurse", but
she scooted on off and probably hasn't given it another thought since then!
All of this to say, my amateur caretakers didn't hurt me the slightest...but
then I have a real thick layer of tummy to stick it in!
Liz T

Re: Uncertain

2006-10-22 17:39:43

I am seeing a Rheumy. But, everything goes so fast at his
appointment. He is in a teaching hospital and most of the time he is
teaching his flunky than paying attention to me. This all started
swith just two digits on my left hand...all swollen and Vioxx or
nothing else would work, so my family Dr. sent me to the specialist.
I have very minor psorisis and not all the time. Nothing major at
all. But becausue the swelling was located only in those two figners
that is what he told me. So he put me on low doze Methotrexate and
then kept uping it. I am not on eight every week. Everything has been
great up until a little while ago with my foot. I have bad feet to
begin with, poor arches etc. and should wear better shoes and
inserts, and not walk around bare feet. Mostly it is the bottom of my
foot near the toes that hurt to walk on....
Perhaps I should call my specialsit and insist on a one on one
meeting with him, without the intern there. I don't know...I am at a
loss. I came home and just cried with frustration.
Thanks
Jan
[Editor's Note: Hi again, Janisse. I'm glad you are under the care of a rheumy
but your rheumy needs to pay attention to YOU when you are in the room with him.
My rheumy is the head of Rheumatology at a teaching hospital in NYC and yet he
has never spoken to a student in front of me. He makes my visits all about me,
which is as it should be. He takes the time to answer all of my questions. It
sounds to me like you need to find a rheumy that puts YOU first, last and only.
My original PA pain way back when I was a teenager began in my metatarsals (the
balls of the feet) just like you. It has only been since I've been on Humira
that I have days when I don't feel pain there at all. In fact, since I swam
yesterday and used a jacuzzi at the spa, I actually played 9 holes of very bad
golf this afternoon. I am sore, but not as sore as I used to be in the
pre-Humira days. So, you CAN be helped, but the first and most important step
is getting the right doctor to work with you. Where do you live? Maybe another
member has had good experience with a rheumy in your vicinity. Kathy F.]

Pain at night?

2006-10-22 14:01:41

Dear Martin, You are right, you sure don't want to give up breathing. That
wouldn't help at all. You didn't say if the thing that felt like it was
moving hurt? I'm betting it did or otherwise, it might have been strange
but not a big deal. I've had painful ribs so often it's unreal and have
often thought, ok this time I broke one some how. Yet I never have. I've
also noticed that my sternum can ache and hurt like crazy if someone presses
on it. (Not that we walk around pressing on each other's sternums around
here...lol.) It sound like a inflamed tendon or muscle. AS far as it
moving, was it like twitching? I get that a lot from the muscle actually
being in a spasm and sometimes it does drive you crazy.
If it still bothers you on Monday I would go get checked out at the doctor.
You can developed so many lung problems on these arthritis medications we
take, and that is the last thing you want to deal with. I also think things
hurt more at night because there isn't as much to distract us from the pain.
Our defenses are down, we are normally exhausted from dealing with this all
day long, and it just gets to be too much at night. I noticed when my
parents were ill and I was taking care of them, the nighttime was always the
worst. So it is probably that way for all sorts of diseases, not just PA.
Not that it helps us any to know that.
Well I hope it goes away for you. I've noticed sometimes these strange
pains pop up and then are gone a couple days later and I never do figure out
what they are or what caused them. This disease is just hard to figure out
and each day is such a challenge. Have you ever taken a sleeping pill or
calmative at night? Sometimes that helps. I know it's easy to get used to
them and then they don't even work, but sometimes they can make a big
difference. I hope tonight you fall asleep like a baby (though I don't know
why people say that, when my babies fought me constantly about going to
sleep...lol) Take care and feel better soon. Sincerely, Fran

Re: [PsoriaticArthritis] vacuuming

2006-10-22 12:26:59

Rosee,
It worked for me to,until the dust kicked up my Asthma and
Alergies........just isn't fair when you live with a war going on inside ya!
Thanks for the Smile,
Hugs,
Carol M. in CA

this sit is really necessary!!!!

2006-10-22 08:41:29

Hi,
I love this site and noticed it decline a long time ago. It was when they
came out with all the new meds for rheumatoid arthritis.They were developed
and the pharmacies started selling them on TV and in adds in books. Yes they
work. So people use them and have good years after so many bad ones. When
they die from the drugs people think its because of the RA and don't
question the drugs because they helped their loved ones have so many good
years. They don't look for alternative therapies anymore.
Also there are a lot of practioners out there who are actually using
antibiotics. Not like Doc Brown but they do start people out on them. So
there is no reason for anyone to seek out this site since their own doc gave
them what they wanted and of course it did not work.
The other rheumatic site took a lot of people also. Why?? Is it set up
better? I don't know...I never even actually went there to see it.
I personally give any answers I have straight to the people who write. I
have been chastised enough over the years and I got tired of it. I also sent
other info as well as other people did (recipes, jokes, stories,etc) and
people only wanted the facts...well now there is just facts and there are
not a lot of them. We just say go to rheumatic.org and its printed out. If
we talk about things we did to tweek the RA people complained we were not
doctors and had no right to say things not formed in stone.
I am not angry(I somehow always sound like this on paper) I love this site.
Its been my home for 9 years and I would be sad if it was not here. I am
alive because of it.
thank you...all of you!
cooky
RA and fibro 9 yrs IV's 7 yrs

leanne

2006-10-21 19:41:48

Marti,
What is it about 14? And yes, we've weighed up the Cancer scare
versus PA. For about the week before Owen's surgery, we went to a
very dark place.It was like a concrete truck reversed onto our
heads.After surgery they said that they think they got it all.He
didn't even have his stitches out before another toe started to swell.
Now both big toes and 4 others are up, plus the Lthumb and a spot on
his spine.Where does it stop?
Well, Owen knows about this group, and I thought he'd collapse
with embarassment, he didn't. He asked me later,if he felt like it
could he have a look and chat.Now, that's great.
On a positive, through this ordeal,I've met the most
witty,loving,wonderful people. People we thought were friends avoided
us, they didn't know what to say-so they said nothing.Others,who i
didn't really know, have gone out of their way to be there.It's like
the group, what a breathing space itis to have a group of 'been
there, done that'people who care. It makes you think how truly lucky
I am. The strength of character shows.
i often wonder, if it's this aggressive now, will it always be
this way for Owen? are his flare-ups going to 'eat him alive'?
Most thankful
Leanne

RE: [PsoriaticArthritis] leanne

2006-10-21 19:17:51

Dear Leanne,
My daughter doesn't have PA and she hasn't had to endure anything like an
amputation, but she has been ill since the age of 14. Up to that point in
her life, she was a typical teenager and constantly on the move. On her
14th Christmas we got her a pair of new roller blades and we thought she had
come down with the flu. It turned out she never did wear them or
roller-skate again. She has a really bad case of fibromyalgia. I took her
to all the top specialists in our state and finally ended up at an All
Children's Hospital. For a while, they thought she had a heart condition
and she had to wear a heart monitor for about a week, due to her chronic
chest pain. It turned out the muscles around her ribs and sternum were
inflamed. We weren't happy with the diagnosis but of course we were
thrilled it wasn't anything "fatal". The problem is like PA, it is chronic
and something she deals with everyday. She is now 21 and looking back I can
tell it has made her more compassionate, but she has given up so much in the
process.
We had so much trouble with the school system that she eventually dropped
out at the age of 16 and got her GED. Before we got that desperate we tried
home schooling, tutoring, phone class, internet class and nothing really
worked since she just became more and more isolated. Once she got her GED
she immediately enrolled in our local community college at the age of 16,
and it worked really well. In high school, the only thing they cared about
was attendance and since she had a hard time getting up in the morning they
constantly were threatening to fail her. It was so frustrating since she
was a straight A student and they knew her health condition since we had all
the forms filled out from our family doctor. It basically turned out that
they simply couldn't make accommodations for her problems and I know I had a
legal case, but at the time that was the last thing my daughter wanted.
She recently just moved out of the house and is finishing up her last years
at the major university about 40 minutes from home. We got her a nice
apartment so she could take her dog and cats. (By the way, the best thing I
did was buy her a dog that was all hers. They have been bonded together
since he moved in and I don't think she would have made it through that
rough time without him.) It has been rough since there have been times when
she is in too much pain to even get her own groceries. My husband and I
just find a way to drive over and do it for her. She has only been out of
the house about 2 months now I guess, and it has been rough on all of us. I
know in the long run it will be the best thing for her since living on your
own is part of growing up and you need it to find your independence.
My heart breaks for your son. It is hard to face PA at any ago, but it is
just so wrong when children are sick. Society doesn't expect them to be ill
and neither do their friends. The best thing your son has going for him is
you. It sounds like you are a wonderful Mom and will do what ever it takes
to help him find his way. It's so important that he doesn't feel "weird"
for being sick, and what ever you can do to keep things as normal as
possible will help. Please feel free to write me anytime. I hope for
Owens's sake that the worst is over with and now that they know what they
are dealing with he will get better with the right medication. Some of the
new drugs on the market are just wonderful.
Take care and don't lose hope. It sounds like he is in the middle of a
horrible flare and surely it can't go on forever. Don't forget to take care
of your self and your husband. It's real easy to lose sight of everything
else when your child is ill. I think I did it all at one point in the past
years..lol. You are in our prayers. Love, Fran

Re: [rheumatic] Is this Group Still Alive? My two cents

2006-10-21 06:57:38

Thank you for writing about the group. As a new subscriber, i noticed that they
are few people waiting to encourage us babes....
I am fighting hard for this AP, want to take it as Dr Brown's AP, but my
rheumy wants me to take 200mg everyday, and the generic at that. I am going to
pay out of pocket for the real thing and take it 3 times a week, at only 100 mg.
As a former nurse, i know hoe hard it is to fight for patient's right. Please
keep encouraging us, we need it, I've just started the fight, after 12 yrs of
RA, going down, down.
Sltfain@... wrote:
This is definitely a trend with this group - that rather than posting to
all, people are posting back privately. It is a terrific loss to me as I had
written in and asked to see all the feedback received from the poster whose
tests were now negative and she wanted feedback on how to continue.
My tests for SD are now all negative. I am at a crossroads on whether to
continue the Minocin, discontinue the Minocin, do occasional clindymycin iv's
or just what. This was a real bummer that no feedback was posted to the
group as a whole.
This list has been my lifeline in the past and it remains valuable to me but
terribly dead and truthfully, because of that, of much less use to those
beginning the journey who might have come here to just read.
I hope this note will spur everyone to set that reply to ALL instead of the
individual sender Sandra

Re: leanne

2006-10-21 01:36:02

-Hi Leeane,
I'm trying to refrain from being sarcastic about your docs because
they obviously made an honest mistake and did what they thought was
right...but ...duh...I guess they did get all the cancer since there
wasn't any there to start with...:(
I don't think your son's pa will be this aggressive for the rest of
his life. Often some of the very first flares are the worst ever
especially since people are put on meds afterwards. Many people
report the first flare in any joint seems to be the worst and that
joint may flare again later but not quite so badly. My own experince
is I have periods that are better . I've never really been 100% pain
free but the pain and swelling are definietly up and down. when you
talk about he extent of your son's current flare it makes me wonder
if short term (key word short) prednisone would help calm it down.
Many docs believe that the damage takes place due to the inflmmation
and this might help prevent further permanent damage. anyway...your
rheum is the best judge of this.
I'm so glad our group is helpful and your son is encouraged too..:)
Best,
Marti

New and hurting

2006-10-20 19:41:59

Just been to the doctors, complaining about my very stiff and sore
elbows,and he suspects that along with my mild psoriasis,I may have
PA. He sent me for blood tests, and I should know for sure in two
weeks.
I am not a happy camper. I have been suffering for years with Asthma
and allergies. I thought that the psoriasis was also along the lines
of allergy, when he explained that Asthma and allergies are one line
of disease and p and pa are another. Yikes.
I am stubborn, and have had aches and pains over the past 6 years or
so, and just thought it was because of my physical work, so I didn't
see the doctor about it. Now that I can hardly work, as my well,whole
body hurts and is stiff and sore and swollen. Even sleep is
difficult. The doc has given me a perscription of Vioxx, and said
once my illness is defined a regime of meds will be started.
Does anyone have any advice for this stubborn 45 year old woman?
Thanks for listening.
Alice

Re: [rheumatic] this sit is really necessary!!!!

2006-10-20 17:39:15

Cooky,
You are I are the OLD members. Maybe WE are the problems. Maybe the two of
us need to go back to ignoring the complaints and hitting that REPLY ALL
button. A lot of complainers joined the site and you are right, it really
declined. The truth is, however, is that you and I did not ignore them and
just
keep on treking. I am sitting here in remission and cannot get a simple
answer on what to do now that I got here with my SD. I am ready to jump back
in
and be there if you can be, too. Your recipes and suggestions which some
might consider Off Topic were so instrumental to me when I was there not
knowing
what to do with that new life style I had been given. We all had some
really great times then. Lets go back there. The gripers can leave. Sandra

Re: [PsoriaticArthritis] New and hurting

2006-10-20 11:31:53

In a message dated 9/12/2004 9:38:00 PM Eastern Standard Time,
alice_peters2002@... writes:
Does anyone have any advice for this stubborn 45 year old woman?
Thanks for listening.
Alice
Hi Alice,
Welcome to the group. I don't think you are stubborn. Many of us
including myself went through the same thing you did. For about 10 years or
more I
suffered with pains on and off all over. My toes would swell and then go
down. My wrists hurt and then a few years ago it started in my knees. I even
went to a rheumy years ago and the jerk never made the diagnoses and I had
psoriasis all over my elbows and knees. I wasn't diagnosed until about 2 years
ago when I I was in a full blown flare with all the joints in my body aching
and now I am still trying to find the right combination of meds. Hopefully
you will find the right meds and feel better like many on this board.
Janet

RE: [rheumatic] thanks/question

2006-10-20 06:01:16

For some reason, and I'm sure there is one, the fingers and toes are always
the last to improve. Hang in there and be careful about cutting back too
fast. Remission isn't always easy the second time around.
Dee

Re: New and hurting

2006-10-20 00:39:45

-Hi Alice,
welcome! sorry about your possible diagnosis. Being stubborn can be
an asset if it turns out you do have the pa. You have found a good
group with knowledgeable, compassionate people to help. sounds like
your doc is on top of things. did he/she tell you that there is no
definitive blood test for pa? It is diagnosed from symptoms and
ruling out other illnesses. A test for inflammation(sed rate or C-
reactive protein) may indicate pa but is not a specific test for it.
Most of us see a rheumatologist for treatment. In general, they have
the latest info on things.
let's see...someone brand new to it all...psoriasis.org is excellent
for info. You can start learnng about the different meds used and
think about what approach you would like to use personally. Also, the
archives here are very helpful. I'm sure others will have more
advise..
Hope the vioxx helps some while you are waiting,
good luck,
Marti (stubborn 47 year old woman...lol!)

Reply-To has been changed

2006-10-19 16:07:51

Dear all,
I have changed the default for replies to go to the group, rather
than privately. Hopefully this will improve the atmosphere of the group.
I now have ADSL2+ to my house, so I'm getting my server repaired and

the group

2006-10-19 11:56:44

When I come across info I think might stand a good chance of being applicable to
the group, I will forward the info. Other than that, I don't have much to say.
Some of you may recall that in less than four months my extremeties were
straightening, I had less swelling therefore less pain and as a result better
movement. Plus my skin was not so painful. To me, the Minocycline was
miraculous. I tell people about it whenever there is an opportunity. People
prefer to follow their medical deity(md) :-((
My head felt like it was being squeezed sometime after I began the Minocycline.
The next visit to the rheumatologist, my BP was 150/100 rather than in the usual
range of 110/70-124/80. She told me I needed to stop. At the time, I did not
know that my optic nerves should have been checked to see if this was a side
effect or actually benign intracranial hypertension (BIH). I lost it all and
just continue to get worse. Dr. Chiu recommended I not take tetracyclines at
all. I tried erythromycin for a year and that did nothing for me.
Four years ago, the primary physician left and the new fellow did not want to
have anything to do with the RA. He referred me to yet another rheumatologist.
Last visit he started talking about Enbrel. I said no, no way. He turned and
looked at me and said, then why are you coming here. I explained the reason.
During the visit I asked for pain medication and he told me I would need to see
my primary for that.
Well, last week I had an appointment (four years later LOL) with the same
primary physician. I went over the whole scenario with him and asked him to
please refer me to a physician who could write an Rx for pred. and a pain med.
He said he could do that, and he did.
One of the nurses from home health has psoriatic arthritis. Last year, she was
unable to walk for six months. Se went on Enbrel. She had a patch of psoriasis
on her left ear which she rubbed, developed an infection and had to be on two
potent antibiotics. Then she caught a cold and was treated immediately with a
strong antibiotic. She worries about lymphoma.
The ulcer I have had on my foot since Dec. 2003 had cellulitis which was
difficult to heal. I went through several antibiotics. If I had been on
Enbrel, I'd be dead! The wound is finally healing, down to 1cm x 3.8cm.
I think I increased the Minocycline dosage too quickly but I would have needed a
knowledgeable and supportive physician to try again.
Denise
Pray the Rosary

fran

2006-10-19 08:54:12

Driving would be a great way of expressing freedom.We took Owen Go-
karting a little while ago.Unfortunately Owen couldn't put pressure
on his feet, so he lasted a whole 3 minutes, but thats just for
now.I'm sure it will get better.
A healthy, active teenager is something we take for granted.It's
part of being a teenager to think the world (and life) is against
them, and having chips on their shoulders.But, when they're dealing
with life-long conditions, they have a genuine right to be angry.I'm
34 and feel 'ripped-off' for them.but he's hoping to play football
next year, that's his goal.Our Rheumy knows this and says it's his
goal then, to have Owen on his feet for next year.Pain or no pain-
that's it.A few bones in his feet are already eroding, but hopefully
we can avoid more amputations.The last one-from the first symptom
till it was destroyed- took 2-3 months.We've got our fingers crossed.
Best wishes to you and your family
Leanne

Re: [rheumatic] Reply-To has been changed

2006-10-18 16:25:38

My concern is sometimes people want to email things privately.

RE: [rheumatic] Enbrel injection

2006-10-18 15:22:11

Wish I could give you an intelligent answer but I don't have any experience
with enbrel. There were some people that subscribed here that did take it
but I don't know if they're still members.
Dee

group

2006-10-18 15:20:59

I one from way back and was very active with posoting. Probaly seven years
or so. Unfortunately the AP was not for me and after five years I sustained
great joint damage. I only email privately since my experiences are not all
positive and some messages need to be handled only with the person. I still
read the posts to see how the "old timers" on the AP are doing, and still
email several at their personal addresses.
I wrote some of the ex-members from an old list that I had and asked it they
still were on AP and how they were doing, and never heard a word.
Leslie

Re: [rheumatic] Ethel

2006-10-17 23:56:09

Hi Jan, it worked just fine. Lynne G.

SoCal Doctor

2006-10-17 22:46:44

Try Robert Franco out in Riverside.
Geoff

group

2006-10-17 14:59:10

Hi Leslie;
I joined in 1998,have Scleroderma,doc said I would die within the
year.HA! I am doing just fine thank you,about 98% normal.Had to get off
the MTX and could not do it until I got the Celiac and vit.D controled
then the AP kicked in just fine. Lynne G.

Re: [rheumatic] New Here

2006-10-17 13:10:30

Can I ask what your sed rate is? I am wondering what is an extremely high one.
Mine has been staying at about 90 and my doctor doesn't seem disturbed by it.

RE: [PsoriaticArthritis] Cleveland Clinic

2006-10-17 06:48:38

Dear Leanne,
Don't give up on all the hospitals just because of my experience. Like you,
I had only heard good things about the Cleveland Clinic, and part of me
didn't even want to tell anyone how the trip actually went. I knew though
that it wasn't right to tell people it was great when it was a lousy
experience. On the positive side, I've only heard great things about Mayo's
and I guess that's where I should have gone in the first place. I let my
insurance coverage decide where to go and that's never a wise choice.
I would hate for Owen to miss out on someone who might help him just from my
experience. There are probably people who do just great at the Cleveland
clinic, though I doubt it if they saw the three doctors I did. I'm sure the
main office or main hospital is probably top of the line. They are actually
rated number 1 in heart surgery here, so maybe I just chose the wrong field
to see them about.
As far as throwing one hell of a stink, I guess part of me still wonders why
I didn't complain more than I did at the time. Looking back, all I can say
is I was in a state of shock and of course pain. I kept thinking if the
"experts" feel this way about me, maybe I am to blame for all my problems
and I've gone about this all wrong from the beginning. Once I got away from
their environment I realized just how wrong they were. I'm writing them a
letter now, and I"m sure it will be a sort of therapy before it's all over.
Thanks for being so supportive and I hope Owen is doing as well as he can.
I've thought of him often and hope and pray his road is easier in the
future. Love, Fran

Re: [PsoriaticArthritis] Autumn has arrived

2006-10-16 23:13:36

Hi, Annie.
I'm in Kansas City MO.
-- Allison

Yoga as exercise

2006-10-16 16:22:53

Exercise is hard for many of us, but I'd like to share
something that works for me: Yoga.
I firmly believe that if I had NOT started Yoga when I
did and stuck with it as long as I have, that I would
be less mobile and less flexible that I am today.
I took five months off while suffering through a big
flare and starting my MTX treatment; I could barely
get out of my chair, I was so stiff!
I've taken the same Beginners Yoga class over and over
for the past six years. I was lucky enough to find a
well-trained teacher who has overcome her own physical
limitations and who helps me find alternate poses that
work with my limitations. She's worked with me through
swollen digits and frozen hips; through spinal flares,
muscle spasms, and blinding headaches. She realizes I
yawn NOT because I'm bored, but because I need the
oxygen.
There are some very basic things that I can't do (I
STILL CAN'T touch my toes!), and probably will never
be able to do, but the things I can do continue to
amaze me. I often get stuck with my hip in a odd
position, or limp out afterward, but by the time I get
home I feel like I've had a really good massage.
I moved into an Absolute Beginners course before and
after the five-month break mentioned above. It was
taught by a woman with fibromylagia -- and she was
such a flexible and perky 40-something that we never
had a clue about her disorder until she mentioned it.
I also experienced a bad teacher who was too young and
too inexperienced to realize that she was hurting me.
I left the class in tears about midway through the
series did remainder as "makeups" with a teacher I new
I could trust (the fibro lady).
If you're in Kansas City, I'll be happy to pass along
my teacher's contact information.
If you're somewhere else, look for a Hatha or Ansuara
class for beginners, or for beginners with physical
challenges. Check your local health centers and senior
centers for special yoga classes for arthritis
sufferers.
There's also something called "Chair Yoga" -- basic
strength and flexibility poses that can be done
seated, or using a chair for support.
As with anything, your milage may vary, and you'll
want to clear it with your doctor before you start.
-- Allison
=====

Insurance Question

2006-10-16 12:37:56

I am currently changing all our medical insurance and wondering if anyone on
this list has Medicare and Tricare (military) insurance coverage. If so, I
would like some feed back on how well it works, any problems, etc. Thank you so
much. Please feel free to email me privately. Linda in Poulsbo, Wa.

Snowy

2006-10-16 00:35:05

Hi all, Yes autumn is here. Soon it will be winter, as it is
starting to snow.....from my head!!! Sheesh. I never made the
connection before with the weather changes and flare ups! Wow
I use tar based shampoo which helps my scalp, and have tried it for
my ankles, but it doesn't work as well. Does anyone have any
suggestons!????
Thanks, have a great day everyone
Alice

Re: [PsoriaticArthritis] Insurance Question

2006-10-15 17:31:40

Linda,
I have TriCare, but its active duty TriCare not retired TriCare and I think that
makes a difference.
Denise

Re: [rheumatic] juvenile RA/need doc in ny area

2006-10-15 16:48:01

You could try Dr Eichenfeld in New York City(6 years ago he was at Mt.
Sinai). He was not using antibiotics when my daughter was diagnosed but I have
heard that he was treating someone in conjunction with the Dr. in Boston (can't
remember his name). There is a Dr. in NJ but he won't treat children under the
age of 16. We used Dr. Brown in PA but that's a bit of a drive from New.
About 5 years ago I spoke to a Dr. in Manhattan who was willing to continue the
protocol set up by Dr. Franco (California). If you want I will go back and
find the name. Unfortunately he had no experience with it was just willing to
monitor and prescribe.
I know of another parent that has a NJ Dr. but again this doc is just
continuing treatment set up by Dr. Franco. If you want I will ask for that name
and
see if they can help.
Laura

RE: [rheumatic] Minocin Help

2006-10-15 07:44:58

Hi,
Yes you can open the caps and put it in apple sauce. Minocin unlike
tetracycline can be eaten with food.
cooky

Re: [PsoriaticArthritis] Yoga as exercise

2006-10-15 04:08:57

Hi Allison:
All I can add is everything you say has been exactly the same for me. In fact,
I really believe it helped me stay in remission as long as I did ~ and I too am
now "back in a beginners class" after my flare...
Karen
Allison Stein <darkart42@...
Exercise is hard for many of us, but I'd like to share
something that works for me: Yoga.
I firmly believe that if I had NOT started Yoga when I
did and stuck with it as long as I have, that I would
be less mobile and less flexible that I am today.

RE; PREGNANCY AND MEDICATIONS

2006-10-15 01:54:21

I have Psorisis and psoratic arthritits Can any one please tell me
the risk of taking certain medications in pregnancy has i have just
found out I am pregnant (9 weeks and un-planned). my doctor has
said it is okay to continue taking all my medications but would not
tell me the risks of taking them.
I have currently being taking Sulfalasine for three months which
has not helped at all yet x6 500g tablets a day, Vioxx,
Dihydracodine, and i recently was given three steroid injections one
each in my ankles and one in my hip area (this was before I knew was
pregnant) I also have to take Lansoprasole for gastric problems
associated with the vioxx if any one knows any information on any of
these medications and associated risks in taking them could you
please let me know I have currently stopped taking all my medications
I was also on methotrexate 3 months ago
Also dose any one know if you can contiune with ubv treatment for
psorisis as i was due to start treatment for it
Thank you sara

RE: [rheumatic] Minocin and NSAIDs (24.06.06)

2006-10-14 14:57:00

Hi Ken,
The theory is that you need to decrease your imflamation so AP can work. So
you should take something. BUT some (I should say most) NSAIDS can cause
swelling or fluid retention. I went thru quite a few before I found one that
did not do it to me. Amazingly it was taken off the market about 2 years
after I stopped taking it because it was causing deaths. So you need to
observe yourself for one that is good for you.
There are a lot of natural antinflams that you could use. Curcumin is one of
them (otc) and bromelin (OTC). They are listed on the rheumatic site and I
am sure others will post to you with their suggestions.
hope this helps.
cooky

What else can I eat? Just eat fish and veggies since the AP.

2006-10-14 10:10:08

I have Polymyositis. I've been on Minocycline for about a month + and
I had a flare up that took me to 3400 CK and 24 Adolese in the
beginning. Now I've came down to 1700 ck and 17 Adolese. I've only
eaten fish fruit and veggies...Is there anything else I can eat that
won't slow my progress or make things worse? It's not that bad but I
just want something diffrent...and could I eat regular once a week?

Is my new Dr a quack?

2006-10-14 00:26:22

Hello again!
I forgot to ask about my new Dr. I went to this new Dr on Sunday and again
today. He has no experience with PA and keeps trying to convince me that I
might have RA. He says that he is not saying that I don't have PA only that it
might be RA. Oh, and for those who don't know I live in Japan and this is a
Japanese Dr. So, today he prescribed meds for me. MTX 10mg a week (same as
before) and Voltarin SR 37.5mg a day and Mucosta (stomach med) once a day. Is
he trying to kill me? Is he an idiot? Or am I too suspicious? I thought that
MTX and Voltarin interact with each other?
Please advise!
Also, in Japan the maximum dose allowed by law for MTX is 10 mg a week. Does
anyone know what it is in the US?
thank you!
d

I am alive!

2006-10-13 22:41:53

Hi everyone!
Sorry for dropping out of sight. We had a long holiday weekend here in Japan
and my son (9 months) has been sick. Took him to the Dr. this morning and got
some medicine. He is sleeping now so I am using this time to catch up on email.
Autumn... I wish it was coming. We are still having the hottest summer Japan
has had in 10 years with horrible humidity. I would just like it to be below
80. Humidity has always got me worse than the cold.
Thanks for the advice everyone!
I now have a long list of brand names for shoes to try out thanks to you!! I
am also going to give pilates a try. And I am considering some sort of beauty
treatment as my feet are very ticklish and I am not sure how I would handle a
pedicure. I like the pampering idea. I have gotten a bit frumpy since the
baby.
Allison, I love yoga too. I do "AM Yoga" by Gaiam, while I can't do
everything, I do what I can. It has made a huge difference.
I am a bit jealous of Jane whose husband "does everything". My husband is soooo
the opposite. I have to tell/order him to do most things. The Japanese way is
"if you ignore the problem it will go away". So, if I ignore my pain it will be
gone. Japanese also believe that verbalizing your pain or suffering is very
selfish. If I complain ( this also includes and noises, grunting, wincing,
crying etc.) it will make other people aware of your problem and therefore
uncomfortable. And that is so selfish.
Funny story....I told my husband how glad I was to have joined this wonderful
group. I said that I was happy to meet other people with PA. My husband said
to me "Why would you be happy that other people are sick?"
I will try and keep in touch more!
d

Re: [rheumatic] What else can I eat? Just eat fish and veggies since the AP.

2006-10-13 16:17:28

Hi, I have Dermatomyositis(skin involvement) which is similar to Polymyositis.
The only things that I changed in my diet was cutting out trans fats; ate fewer
carbs and sugar. I was dx in oct94. Started AP jun98. Reached control/remission
Spring 2000.
HTH
Carol_DM _Canada

Re: [PsoriaticArthritis] Is my new Dr a quack?

2006-10-13 09:32:27

Hi d,
Don't know about the US but the maximum does for MTX in the UK is 25mg.
Take care,
Martin

hi there .. physio

2006-10-13 05:56:06

hi to all out there
as of last week i started physio and hydotherapy.. today i started
occupational therapy as well
been on vioxx for the past month and ive been reading your posts on
vioxx...
i had my hip put back into place .. with the person who does it for
me telling me off for not coming sooner.. ive havent seen him for
two three months.. been to cold etc.. and construction works where
he is .. is hell.. you avoid going unless you need to..
any way after the masssage and hip re aligned i still hurt.. in
fingers feet ankles .. my arms are like dead weights.. hopefully
the excerises will help in losing some weight . need to be 5 or 6
kilos = 11pounds
any way i will catch you all later ....
laura
xxx

to Martin

2006-10-13 00:39:04

Hi Martin,
This message really doesn't have anything to do with PA, but you are
the first person I have met that is Scottish. My ancestors were
Scottish and everyone in my family said that you never seen anything
until you've seen the Scottish temper; well my family I guess is
notorious for it and I found on the internet when I was doing my
family tree another cousin that lives in California and he is known
for his Scottish temper also!! My husband always says "whew wee!!!"
when I get angry!! Just wondering. I love reading your messages-you
and Fran always get me to laugh-I still haven't gotten over Fran's
story about the "store riders"-I always think of that when I need a
good laugh.
God Bless, Sue.

Re: [rheumatic] Docs in Toledo, OH area?

2006-10-12 11:48:04

Hi Jenny,
Here's our list of Ohio doctors.
Chris.
David L. Bowman, D.O. (GP 1977)
227 E. Loudon
Loudonville, Ohio 44842
P: 419- 994-5581
Dr. Castlebury (oral and IV)
Castlebury Clinic
2132 West 25th St. No listing in AMA or phone directories
Cleveland Ohio. Second office in Richmond Heights, OH
P: 216-771-5855, 440-460-1880
Rebecca D. DeVillers, D.O.
299 Main St. West
Ashville, OH 43103-1532
P: 740-983-2594
William D. Mitchell D.O. (IM 1955) chelation IV clindamycin
10401 Sawmill Rd. suite 10
Columbus, OH 43065
P: 614-761-0555
Cynthia Taylor, M.D.
19654 North Cross Trail or is it 2026 Murray Hill Road
Strongsville, OH 44136 Cleveland, OH
Thomas Henderson, M.D. (RHU)
3533 Southern Blvd. Suite 3750
Kettering, OH 45429
P: 937-296-0015
Dr. Marilyn Agee
Family Physicians
5300 Harroun Rd. Suite 201
Sylvania, OH 43560
??? P: 419-824-1100
John B. Taylor, M.D. (RHU)
Lakeland Medical Building Suite 306
25701 Lakeland Blvd.
Euclid, OH 44132
P: 216-261-0113
Cynthia Taylor, DO Recovered from RA after using AP on herself.
6688 Ridge Rd. Suite 1405 prescribes oral, and arrange for IVs
if pushed
Parma, OH 44129
P: 440-843-3694
Avis Ware,
Cincinnati, OH.

Re: Is my new Dr a quack?

2006-10-12 11:42:42

In Canada, the recomended max dose of MTX, I believe, is 25mg per
week. At this level it is usually injected because of the redused
absorption levels of orally taken MTX at this dose.

Re: [PsoriaticArthritis] Re:Don't overdo things

2006-10-12 00:52:32

Mary,
Thank you for your sweet email. It is slow but I think each shot brings me
closer to healthy skin. With 85% coverage tho it will take some time. However,
now I found out no matter how much better one feels do not take it as being a
cure. I have suffered bad with my bones and muscles so bad over the week end.
I also came down with a kidney and bladder infection. Had not ever had one in
many years. Not sure if the infection is from the Enbrel or just happened. I
have decided not to take my shots tomorrow because of the infection plus the
Cipro XR I have to take. I was prescribed Cipro XR for 3 days and each pill
cost $10.00 each ! I go back to doctor next Tuesday to see how and if the
infection is gone. Thank you so much for your well wishes. Blessings, Zoella

Re: [rheumatic] ap dr

2006-10-11 17:15:59

Hi Emily;
I know that Dr. Krop in Toronto is very good.I used to live in the
Niagara area but have now moved near Ottawa.Finally found a wonderful
doctor here. Lynne/ Scleroderma

Watson brand minocycline

2006-10-11 14:53:55

Hey, you have really made me curious on the brand of mino that I have
been on for at least 4 years. I called my pharmacy and asked what
brand I have been on and he said "Watson". I then asked if they had
the real minocin and they said "no", we only have the generic. I
really have done pretty well on this brand and maybe someone could tell
me had to get the real stuff or should I just continue on this brand.
I have changed my dosages to MWF/100mg daily. I was on 200 mg's daily
for years.
Any suggestions would be greatly appreciated.
Susie in Oklahoma

»Ø¸´£º [rheumatic] Nan

2006-10-11 11:34:17

Thank you Esther for giving me a reply so soon. Now I
have an idea of what is going on for me. Do you have
TMJ problem? Thank you. Nan
--- Esther Warkov <esther_warkov@...

TMJ

2006-10-11 09:00:39

I noticed that someone brought up the problem with TMJ. Before I was
dx with scleroderma, my dentist thought I had TMJ and it was the sd
rearing its ugly head. I had to go to an oral surgeon and had 3 teeth
cut out. I was in so much pain at that time. Then, of course, my face
started tightening. That was in 1999 and today my skin has loosened
alot and I have wrinkles....yea...wonderful wrinkles...who would have
thought that I would like wrinkles. I am very vain, however, and I
went to see a plastic surgeon (his MIL has sd) and he said "no way
would I do anything to your face". So.......hey, I'm 53 and I guess
everyone has wrinkles at that age. I'm just glad to be alive and
somewhat healthy.
Susie in Oklahoma

RE: [rheumatic] Watson brand minocycline

2006-10-10 21:55:13

Well Susie If you are doing well on the generic and your labs are down to
normal...hey why change and pay more.
If tho, you are in pain and or still have high labs and or are starting to
have other problems then yes I would try to get the brand name. If you go to
a small drug store they may not be able to get it. The biggies like Rite Aid
can order it from their warehouses and have it for you in a few days.
Yes MWF is much better.
best of luck,
cooky

RE: [rheumatic] TMJ

2006-10-10 21:06:12

Yes Susie I hate the wrinkles too. I am 59 and I use everything I can afford
to stop the sagging and wrinkles. There are a lot of good products OTC that
are good but pricy. If you want I will give you a list of some good ones.
With SD... I myself would not do plastic for fear it would make me come out
of the "remission" and scars would be even worse than wrinkles.
Wrinkles at our age are a fact of life but trying to make them less
noticeable is something we all can do.
cooky

Brain-Immune System Link

2006-10-10 14:29:49

Here is an interesting article from Newsday that gives us some reason to be
hopeful that new lines of treatment may be available some day:
LI researchers find brain, immune system link
BY JAMIE TALAN
STAFF WRITER
September 23, 2004
Long Island scientists have discovered a direct connection between the brain and
the immune system, a finding that could have implications for many diseases.
Until recently, scientists believed the brain interacted with the immune system
only indirectly by releasing chemicals into the bloodstream.
But Dr. Kevin Tracey, a professor and head of the center for patient-oriented
research at the North Shore-Long Island Jewish Research Institute in Manhasset,
found that the vagus nerve, in the brain stem, talks directly to the immune
system, which is spread throughout the body.
Once this relationship is understood, Tracey said, it could open a way to
prevent immune diseases by altering brain responses, or to treat diseases by
tweaking the immune system so that it does not over-respond causing
inflammation.
This week, Tracey hosted a meeting on the new link at the Karolinska Institute
in Stockholm. To test this direct circuit between the brain and the immune
system, Tracey devised a study to trick the brain's immune response to a lethal
bacteria called endotoxin. Normally, an animal reacts to an injection of
endotoxin by mounting a massive immune response that kills the animal as it
tries to kill the toxin. This is similar to an autoimmune disease, in which the
body's immune system goes into overdrive, attacking the body itself. Tracey and
his colleagues found that blocking the vagus nerve prevented the lethal response
to the endotoxin.
Then, they attempted to figure out how the communication takes place.
The vagus nerve is named for its Latin root "to wander." From the brain stem,
the nerve snakes all over the body's major organs, the heart, spleen, liver and
kidneys. Most cells of the immune system also are found in these organs. The
vagus nerve releases a neurochemical signal that produces an electrical current
across the nerve. The chemical, acetylcholine, floats a short distance and lands
on cells of the immune system called macrophage. When acetylcholine lands on
docking receptors on the macrophage, immune cells turn off. The result: No
massive immune response to the normally lethal endotoxin.
This is the first time the brain chemical acetylcholine has been linked to the
immune system's anti-inflammatory response. This brain chemical is depleted in
Alzheimer's disease and inflammation is often noted in the brains of patients.
Tracey believes that the brain's regulation of acetylcholine is responsible for
its anti-inflammatory properties. He is embarking on a pig study to see whether
stimulating the vagus nerve blocks inflammation.
Crohn's disease, rheumatoid arthritis, and inflammatory bowel disease are
examples of sickness caused by a wildly overactive immune system. That the vagus
nerve can enhance acetylcholine and shut down an abnormal immune response offers
hope for new treatments for many conditions, he said.
At North Shore, Tracey is bringing volunteers into the laboratory and measuring
their vagal nerve activity. His hunch is that a robust vagus nerve response will
be a sign of good mental and physical health.
Copyright © 2004, Newsday, Inc.

Re: RE; PREGNANCY AND MEDICATIONS

2006-10-10 03:49:26

there is a really good article my rhuematologist just gave me about
drugs for arthritis and pregnancy: it is called "anti-rheumatic
drugs in pregnancy' written by ann L. Parke, MD it is a publication
of the arthritis foundation. you might want to find it and read it.
also, i have recently heard thta vioxx (all nsaids, really) can
interfere with fetal implantation. hope this info helps.

anyone having trouble getting pregnant?

2006-10-10 00:22:43

i am taking vioxx and i recently found out that it may block fetal
implantation. i am trying to get pregnant and not having much luck.
my doctor recommended getting off vioxx (all nsaids) and taking
tylenol during my week of ovulation. i don't know how i am going to
do it. anybody else been through this?

Re: [rheumatic] high doses of antibiotics

2006-10-09 17:52:34

Sylvi,
The fine points of drug dosages should be left to doctors, but I
would be concerned about high dosages of antibiotics over extended
periods. Normal usage of antibiotics is to knock out an acute
infection with a massive dosage over a few days, while the AP is a
long-term treatment program which uses a relatively low dosage, such
as 100 mg every MWF, over months, even years.
The longer you have had RA, the longer it will take the AP to work.
Since you have had RA for 35 years, you will probably not be able to
see progress in only two months.
Sincerely, Harald

Re: hi there .. physio

2006-10-09 13:57:38

---
Hi,
My right hip pain started like yours-the Drs. couldn't really figure
out what was going on for about a year-they even sent me to Physical
Therapy and I had the "Therapist" sitting on my hip and right leg
bending it backward. I don't want to scare you, but my right hip
finally broke in Feb. 2002 and I have had two surgeries-going on my
third to repair it. I had a bone scan and the density was awful in
my right hip. Before I started the hip pain I was walking every day
down my dirt road with my dogs for about 3 miles-it has been
depressing ever since. I would "bug" them until they could find out
what was wrong.
God Bless, Sue.

I'm back

2006-10-09 01:17:31

Hey Everyone!
Sorry I have been slow about getting back into the conversation. We had to
deal with Hurricane Frances which unfortunately did a bit to our house. Our
house is only slightly over two years old and we have been told my two
contractors that the damage to our downstairs complete back wall is due to
faulty
building! So now we are dealing with the builder and the insurance company and
dealing with dehumidifiers. It's not fun and I am hoping they start fixing
things soon. Anyway, as for my health. I did see the Physical Therapist once.
She thought is was all muscular and not joint related. She wanted me to start
coming in 3 times a week for excercises. I went the same day to our really
good friend who is a chiro. He felt I had upset a nerve in my shoulder and said
I should not be doing any excercises as sore as I still was at that point. He
said to come back to him in a week and then I told him who my rheum. was
going to be it turns out they are good friends for many years. That is somewhat
of a plus for me. Then I went to the dr. I didn't like for my follow up from
being in the hospital. He looked at me and told me he didn't like chiros. He
then proceeded to tell me that all the symptoms I had were bizarre and that
he thought I had fibro. Well no offense to anyone with fibro but at that point
the thought of having more to deal with sent me into meltdown. So then I
called the rhemys. office and asked if there was anyway I could be seen sooner
than the middle of September because my dr. was making me crazy. The
receptionist asked me who my dr. was and when I told her she informed me that
he used
to be her dr. a long time ago and she didn't like him either and managed to
get me in the next day. I went to the rheumy. and he said no way did he think
it was fibro. and he thought my pa was good and still seemed to be in
complete remission but he said I needed to go to the dermatologist which I
already
was looking for one. He thought I had pinched a nerve somehow. I did like him
and apparently he is supposed to be one of the best in South Florida.
Anyway, after all of the dr's told me to go home and relax then I came home and
worried about the hurricane and all of that good stuff. After the hurricane
drama ended then I went to a different dr. that our friends from my hubby's
work
recommended. It is a general family practice with two women dr's. and I saw
a resident that is going to be with them for the next two years. She was
very good and very attentive. She said I do not need to come back for a year
and
just to have my one bit of bloodwork redone so they can have a fasting test.
She gave me the name of a dermatologist who is supposed to be the top one
they reccomend and I will see him in late October. I am still seeing the chiro.
I am better but I still don't feel completely normal. I don't know if it is
trying to get destressed or what. We are now watching Jeanne and we are
supposed to maybe get some effects from that come Sunday. I am still
considering
the accupuncture and possibly a massage. I am trying to quit drinking pop and
I have cut way back and I am still walking. I am having some minor aches here
and there but hopefully it will get better. By the way, does anyone know how
long prednisone stays in a body? I was just curious.
Also, as a side note I first got p when I was pregnant with my oldest. I was
in a super high stress marriage at the time. I broke out all over my face
and the back of my legs etc. I didn't get it on my arms at that time. A lot of
it cleared up after I had my daughter. I just had several random spots
including my arms but my face cleared up a lot and the backs of my legs turned
into
little spots. I was able to use topical stuff after she was born and did so
for a while and then gave it up because it was a lot of work and I didn't
like some of the stuff they gave me. Later I tried light treatments and then
very low dose of mtx. That cleared up a lot for a while the mtx. I did not like
the light treatments. Then when I got pregnant with my other daughter I got
almost completely clear. I stayed that way and felt really good until I
stopped breastfeeding. I ended up getting diagnosed with pa when she was about
2.
I then tried a variety of things as that was a horrific flare where I
couldn't hardly walk or do anything because my hands, feet, and knees were so
bad.
That is when I found out that Sulfa could make me be able to walk but it also
made me throw up continuously. I then went back on low doses of mtx. for a
long while. Then I was diagnosed with pre cancerous cells on the cervix and
they were lasered off a few times etc. and I stopped taking the Mtx. to see if
it was affecting anything. Luckily my pa has stayed in remission and I had a
hysterectomy. After the hysterectomy I felt a lot better and have had only
moderate p. since. I haven't been treating the p for about a year and a half to
two years much to the dismay of my many drs. but I think the break has been
good for me. I am going to see what kinds of things the new derm. has to
offer me and will consider trying some things and I am not opposed to going
back
on mtx. short term if I have to. I never h