Rheumatic

Maggy, you need to know the name of the test to interpret the results. When
you go in to see your doctor next, ask for a copy of those test results.
I always get copies for my files of any tests that are run.
Ethel

When I was on 25 mg of MTX, it was taken over 2 days. In my case, I chose
Tues and Fri so that there was always some MTX really active in my system.
Kathy F.

Allison, if you want to know why your rheumy is doing something, the best
thing to do is to ask him. My guess is that although you believe the MTX is
working, the fact that you continue to have breakthrough pain suggests that it
is
not working as well as it should. That's probably why the rheumy is already
thinking ahead to the biologics. Although perhaps you are doing fine on MTX,
he may believe that you will do ever better on the other meds. I'd have a
discussion with him about this since YOU have the greatest say over what is done
to your body.
Kathy F.
<< started MTX in May. Every two months, I see the
rheumy. Every visit, he increases my dosage. I'm up to
8 pills (20 units) per week as of this week. I'm not
sure why he keeps pushing my dosage up so fast.
I do seem to get "accustomed" to the dosage after a
few weeks, with some breakthrough pain and stiffness,
but much less fatigue and other side effects.
I have a suspicion that he wants to move me to
biologics. He's mentioned it as an option, on the
insurance company's condition that I "fail" on less
expensive treatments. The thing is, I think I'm doing
just fine on MTX.
Unless I have a bad flare when the temperature drops,
or unless there's something going on in my spine that
he's not telling me, I'm not sure I want to do
injectables.
PS: Hi, Shelly! I'm in Kansas City and visit St. Louis
often.
-- Allison

I am going for an MRI -Monday on my clavicular joint. I have swelling in
my collarbone and intense pain there and up the left side of my neck.
Just thought I would let you know that you are not along. My rheumie
said that pain in the collar bone area is typical for PA. Also she said
some times there is pain in the chest wall area.
Hope we both find relief soon. I am already on Enbrel, Arava, Prednisone
and MTX.
Joy

Hi Michael,
You can send to my private email at cadlard@... - however,
if it's a request for life stories, you might like just to ask the
group direct as many have put their life stories on
rheumatic.org/medhist.htm
Chris.
(moderator)

---
Hey Dawn,
I am really happy you got your Enbrel-I am still waiting after a
month of getting my prescription from my Dr. I guess Medicare won't
pay for it after I was told by my Rheumy that it would and my
husband's insurance won't pay for any injections. I have been so
depressed. My feet, hands, fingers, hip, etc. hurt so bad. I called
the company that makes Enbrel-I guess they sometimes let people use
it free as a test person, but they told me they already had enough
people. I was hoping to feel better so I could stop using some of my
pain meds. I cried all day for the last few days just being upset.
Why does this medication have to be so expensive-- $1500 a month!! I
am happy for you though.
God Bless, Sue.

If you are denied disability and have no other income you will qualify for
Medicaid.

-Hi Lynda,
sorry you are hurting so badly! Good Luck with the hurricane.
thinking of everyone in Jeanne's path. If this keeps up Martin's joke
about the weathermen only posting warnings for GOOD weather might
come true...
marti

Hello everyone,
One of the great benefits of a group like this is that you are made
aware of what is happening in other parts of the world. This means
that you can be armed with lots of questions when you get to see your
Rheumy -
So armed with lots of your info, I asked the rheumatologist on Friday
last what he knew about Enbrel in Australia and I thought some of the
other Australians would like to know.
Turns out it is here but is not as yet approved for PA on the
pharmaceutical benefits scheme. He told me that, in my case, he would
certainly be prescribing it if it were as I have such a bad reaction
each week to the MTX. However the good news is that it is expected to
get that approval in the next six months.
He could prescribe it now but it would cost around $20,000 per annum
which is a H U G E!!! amount of money. I think I'll just continue
with my weekly nausea attacks for another 6 months.
I was also interested in what Marti had to say about Fibromyalgia as
it would seem that I have passed the Trigger Point test with flying
colours and therefore am an official Fibromyalgia sufferer -
Loved the analagoy of peanut butter and Jelly!!!
Hope this bit of information assists some of my fellow Aussies -
Sue

Check the rheumatic.org website and you can read those case histories
Den and Skip

Hi everyone
My name is lynn and i live in england, It is so uplifting to read the
success stories and so so helpful to read all the tips. advice etc.
I was dx with diffuse sd 6 years ago and one year ago i developed fascittis
sd in my thighs .It is where the skin looks mottled and rock hard like wood.
( in fact to be precise it looks like cellulite gone horribly wrong!!!!!)
This is where the sd goes deep into the connecttive tissue compared to sd
involvement in the skin ( which i have in the rest of my body) and myotitis
muscle involvement )
Is there anyone put there who has the fascitiis sd , or knows of anyone, does
the appearance of the mottled effect ever go ???
thanks
Lynn
I. ionstanciu <ionstanciu@...
hi Ivory,
thank you for your uplifting message. please give me your doc name and phone
number. i have had ra for 21 yrs and i am at the end of my rope
thanks,
anna

Sonya,
Some other members of this group had good practical advice. It's good that
you have a lawyer; it just makes the process easier. I know several young
people with less disabilities than you that are on disability. Don't take
it personal that you got denied the first couple of times. They
automatically seem to reject everyone's claim at first. Maybe they hope you
go away. Worrying won't help the process whatsoever, so try to let go of
it. Just deal with the process step by step...and don't forget to breathe.
Take care,
Ute

hai,
My name is sikandar reddy..Iam a international
student in Fresno,CA.This is my first semester in
USA.Just before coming here, i was diagnoised with PA.
i feel stiif in elbow,shoulders and neck and sometimes
in legs...
When i had psoriasis, that was the first time i came
to know there is something like psoriasis and again
the same with PA..
I brought medicines from my home country and iam
taking pills of indomethcin and 2 other pills...
If i want to take a health insurance with psoriasis
and PA, what would be the best one?
I dont want to discuss this problem with my friends
and others..I know u understand better since we are
all in the same boat..
I want to apply for Driving license from DMV..Can i
know what will be the difficulties in driving..and can
we really get licence, etc..Iam planning to learn
driving and please tell me, can we still go thru with
all this and have safe driving..
It's good to hear ur mails and I feel there are people
who understand me...
Please advice me about what i should be doing..
thanking you
sikandar

Hi Lynn,
I am currently on Jordan Rubin's diet- the forty day plan. Can I just say- it
has changed my life! I had NO energy whatsoever and have been referred to by
my family as "part of the couch" for a long time now. Many symptoms like sore
throat, swollen lymph nodes, intolerance of hot weather and bright sunlight,
muscle pain...all GONE within the first 4 days. It is very high in fat which is
the opposite of what was recommended to me by doctors- most of the fat comes
from the coconut oil- but I suspect that's where the energy's coming from. I'm
actually back on the treadmill after 2 yrs of complete inactivity. I'm
basically only eating the most digestible and utmost nutritious foods- like
berries,
salmon, goat's milk products, steamed veggies- and saving my body the energy
and work of having to digest things that aren't worth it in what they are
giving back. I feel like a human again.
However, for the first 3 days every time I ate I had to take a nap afterward.
Day four the energy kicked in and has been here ever since!
Emma

Welcome Sikandar.......As always we are sorry for the reason you found it
necessary to look for support but you sure came to the right place. I don't
know the answers to the insurance question but I feel you should definitely
continue with your plans to drive and anything else that you want to do.
Your condition will tell you when you are overdoing it. My hands hurt when
I drive so I use a steering wheel cover that has bumps on it. The bumps
help me turn the wheel without the need togrip it too hard. I am 55, work
full time and keep a very busy life style which increases my pain but keeps
my mind in good shape so I think it is worth it. Best Wishes, Cheri

Hello, we too have recently been to the Rheumy.Now, for a 14 y.o. to
qualify for PBS Enbrel, Owen needs to have been on mtx for 12 weeks
or has 4 major joints / 20 small joints involved. Isn't it terrible.
As if your life isn't difficult enough, you now have to hit "goals".
It's funny, we were only just wondering how much Enbrel would cost if
we paid for it ourselves, my gawd! That much...
Thinking of You
Leanne

The MRI results are back and I don't have a pinched nerve. It did
show Osteoarthritis and joint deterioration which we already new but
not pinched nerve. So now it's back to the family doctor (internal
medicine) to continue trying to find out what is causing the
numbness in my arms, hands and fingers. I can't hold on to a
magazine to read without my hands and arms going numb and I also
drop a lot of things. It gets very discouraging.
I have had the carpel tunnel test done and no carpel tunnel and now
the MRI and no pinched nerve. Does anyone know what else could
cause the numbness in the arms, hands and fingers? Any suggestions
to take to the doctors would be appreciated. I do have swelling in
the wrist from the arthritis but was told that wouldn't cause
numbness.
Thanks
Dick

Hi everyone,
Last week I spoke of increasing problems with PA, and in a message
stated that I'd just dumped ice water on myself by accident...well if
that was only the worst thing that had happened that day. Later, at
the board meeting, we were preparing to review the next fiscal year's
budget, and we distributed the one for the prior year that I had
copied and brought in error...my boss (the director) was
embarassed...I felt like crying (did on the way back). I've been
making so many mistakes at work.
One of my co-workers started a conversation with me as to why I'm not
applying for disability (her husband is disabled with FM). When I
went to apologize to my boss he wasn't very sympathetic. He too asked
why I don't go on disability and just do billing for my husband's
business (does he want me to screw up our business too??!). He told
me that other people are having to pull my weight around here and I'm
unable to do the work in the job description, blah, blah, blah. I'm
not ready for disability, I'm only 44, have children to raise and put
through college. The PA could improve any day now. I don't think
anyone who doesn't have it can understand how some moments you can
feel good and then the next moment fatigue and pain hit you like the
meteor that drops on people in the new migraine med commercial.
So, as a compromise for now, I'm going to be working 5 days a week, 7
hours per day instead of trying to do 4 - 9 hour days. Ususally by 2
p.m on any given day, I'm about ready for the pain meds, heating pad
and recliner, but they frown upon that routine here in the office,
can't imagine why.
To top it off, I had a annual phsyical with my gp and have to see him
again next week due to "everything is elevated"... blood sugar,
cholesterol, liver panels, etc. The liver panels I don't understand
as the I see the rheumys vampire's every 4-6 weeks and it's all been
normal up to now. In addition, tomorrow I'm having a 24-hour ph
stomach acid test and get to have a tube through my nose to my
stomach. The young ones at home are horrified at the thought of this
test and won't want to be seen in public with me. I've had GERD for
years but looks like all the NSAIDs are doing a number on my stomach.
Wow, what a vent, feel better already being able to write it all down
and send it to this wonderful, compassionate group of people I call
friends. Suggestions, advice and jokes are welcome :)
Warm blessings,
Jane

Interesting point Geoff, but I'm not sure what you are suggesting. I fully
intend to go on with life now that I am doing better. As long as we continue to
monitor our conditions and continue with the management plan that got us into
remission what more do you suggest? (Other than really good disability
insurance) =)
Emma

Arthritis caused inflamation in and around the elbow can subject the
Ulnar nerve to compression and cause Paresthesia (numbness, burning,
etc.). Before my symptoms settled into my hands and feet, I was sure
I had carpal tunnel too. The Ulnar nerve symptoms went away after a
few months, but before that my hands and arms would fall asleep,
especially when I folded up my arms at night in bed. My nerve
conduction tests were fine too. They also MRI'd me looking for TOS
(Thoracic Outlet Syndrome). I even used arm splints at night for a while.
Steve

Perhaps this would qualify as a quibble, but prednisone actually only
suppresses the production of adrenal corticosteroids, and only a portion of
them. The level of suppression is directly related to the length of time as
well as the dosage.
Less than seven days is significant because the predisone must first be
metabolized in the liver into a form that can interact in the adrenal gland.
The various chemical reactions that occur in both the liver and the
adrenal take some time, and the build-up of metabolites does not begin to
appear at levels significant enough to chemically alter normal adrenal
function within a week's time span. That is why most physicians tend to be
more comfortable with prescribing prednisone for less than one week.
Less than 7.5 is significant because many of the side effects are
established (from trials) as concerns at dosages
not even noted for longer term use at <7.5
Jeff

Dick,
What meds are you on? I know a few times I have had numbness and it was due to
some of the medication I was taking and I didn't think of it right away because
it was one of the unusual side effects.
Denise Axelrod

In a message dated 9/24/04 11:25:23 AM GMT Daylight Time,
heatherfitz@... writes:
Hi everyone - I recently started taking sulfasalazine and MTX. I
woke up today with a very large bruise on my inner thigh (about the
size of a peach). I do not remember banging into anything and it's
a rather odd place to have hit anyway. The area is sore and getting
larger. I looked on-line and everything I have found says to call
the doctor is you have "unusual bruising", but I am not sure if this
qualifies. Has anyone else ever run into this?
Thanks-
Heather
Dunno Heather, what was it you ran into? Lol
I don't actually suffer from bruising but I have noticed that anytime I bump
against something it seems to hurt more and for longer. Maybe I am just
imagining it. I don't know.
Take care,
Martin

Jane,
Well, I don't have any suggestions, advice, or jokes, but what I can offer is
some positive vibes and prayers your way that you start to feel better soon.
You sound like one strong lady, hang in there!
Denise Axelrod

Hi everyone,
I just found out that my insurance will cover my Remicade and the
nurse from the Oncology Center where I will be getting it infused
called yesterday to set up my first treatment.
How do you know when it is time for the big guns? I know I can
benefit from the Remicade (if it works) with my fatigue, joint pain.
I know I will be able to keep up with my 3yr old and 9yr old better
and be able to exercise easier and be easier to get along with. I
am just so afraid of the side effects. Having young children means
having every virus and bug come through our home. Do I really need
to do this yet? I already have a handicap placard for my car when I
can't walk. I already have closed the door to many of the things I
enjoy....walking, playing flute, being social with friends, etc. I
am sick and tired of being sick and tired. Sheesh!
Well, on Monday at 8:30am I will have my first infusion of
Remicade. I hope this will give me some of my old life back. Sorry
for rambling. Sigh, I just needed to get this out.
Thanks for listening,
Ann

Though I don't get a chance to post much here most of you regular folks have
seen me post that I don't like living here in Minnesota, where our family is
stationed due to my husband's active Army service. We have been praying that we
could get approval to move to Fort Sam Houston in San Antonio, TX. as my family
lives in the state of Texas. Well......just yesterday we got the approval and
will have orders burned in 5 to 7 days with a report date of December 1st. With
the leave time that Glenn is allowed to take in conjunction with a move this
means that we will be able to be home by Thanksgiving, therefore meaning that
our whole family will be together for the holiday's, making it extra special
since it will be the first holiday season with our infant daughter! We are so
very, very thankful that our prayers have been answered! :) I am, of course, a
little stressed about changing doctors yet again, but hopeful that things will
go smoothly as Fort Sam Houston is where the Army trains all their medical
personnel so there will be many doctors on post to choose from, which makes
things easier when dealing with military insurance. In addition to that I will
be able once again to get all my medications for free instead of having to pay a
co-pay at a civilian pharmacy. I pray that our house will sell quickly and we
won't have to live in limbo for too long and that I don't get a flare during
this whole process. My rheumy upped my Enbrel dose to 3 shots so I'm in the
process of getting the insurance to pay for it. They limit me to 8 vials per 28
days. Hopefully they will approve this quickly so I don't have to deal with
this fight in addition to moving too.
Denise Axelrod

I hear you. I can't offer a lot of advice, but I certainly can identify with
how you feel. My husband is so immune to my illness, he doesn't even pay
attention if I do say anything.
His whole family has the philosophy that if you would just get up and do
things, everything will be fine. Just be well and quit bothering us.
It can sure get depressing. I really send you my heartfelt best wishes.

Don't be anxious--the infusion is simple, painless, and results are
amazing. SAy goodbye to pa, fatigue, etc. and be thankful insurance
pays. I've been on Remicade 1yr+ and it truly is a miracle drug.
Good luck!

Hello all,
I have been away from this group for awhile due to taking care of my mother
in law during Hospice care.
I have had and was diagnosed with arthritis about 40 years ago. I was
diagnosed with Psoriatic arthritis when I was in my 30's. I'll be 57 in
December.
I've tried all the drugs..............currently I am taking mtx, 7 tabs
weekly, Bextra every day, Prevacid for my stomach daily, folic acid daily,
also bp med, and two weekly injections of Enbrel. I had remicade infusions
for about 4 to 4 1/2 years but the doseage just didn't do the job any
longer. I also take a muscle relaxer each evening.
I am still working full time. Need the paycheck and of course the
INSURANCE. BUT, I cannot see that I will be able to continue to do so
until SS wants me to retire. I have an appointment with my rheumy tomorrow.
I would like tohear about anyone experience with SSDI.
Thanks
Nancy in PA with PA

Hi all,
I am usually a lurker but after joining some time back i have since
moved on to several different meds. Its now been suggested I take
Methotrexate along with my other meds (azulfidine/tolmetin) and I
had hoped I'd improve before that but haven't. Like most others the
energy level I lack along with the pain have not improved and I have
grown tired of watching my 75 year old mother having more energy
than me!
If I could I'd like to hear how methotrexate has improved or
affected others and if they had side effects that made it not worth
it or made it worth it. How long most had to take it and does it in
a sense put the PA in remission.
My next course of action is enbrel and I don't know if the insurance
will cover it.
Thanks for your replies!
Tam

-Hi Dick,
I'm sorry I can't remember your meds. They traced numbness and
tingling in my hands and feet to remicade. I know other meds cn case
neuropathy as well.
Hope you find an answer,
Marti

Hi Maggy,
I absolutely sympathize with you. I am also a mom of 2. My son was only a
year or two old when I was diagnosed with RA. It is hard to take care of a
family with this darn disease. Do what you can when you can. That's all
you can do. Things do get worse before they get better. The fatigue is
part of the RA and for me the Mino made it worse in the beginning. It may
help if you take the Mino Monday Wednesday Friday. I took 100mg that way in
the beginning and when I wasn't having any reaction to it we went to 100mg
twice a day MWF. That's when I started experiencing what you're feeling.
It took a good six months before I can say that I felt better but after that
I just kept feeling better and better. The Celebrex will help and when you
start to feel better and get things under control you can get off of it. I
took Vioxx for at least a year in the beginning. Now approximately 6 years
later I have to remind myself I have RA. You will get there too. It may
not seem like it now when you're feeling miserable but hang in there it's
worth it! By the way, the kids are no worse for wear 6 years later because
mom had to take it easy sometimes.
All the best to you,
Dee

Lina,
Your posting really hit me ! When I was first diagnosed I was 37
and felt like I was 98. I will never look at old people the same
way again. When I first went to a Reumatologist I cried through the
entire visit. I was so depressed and I truly felt I was dying. By
the time I left I was on antidepressants, Vioxx with a plan for MTX
and possibly Biologics. Looking back, (8 mths. ago now) I'm still
not convinced that I wasn't dying. I don't work full time but I do
work a very demanding part-time job and have 3 kids.....at the time
of diagnosis they were 7,5 and 1. My day basically never ended and
I felt like a failure at everything I needed to do.
Now to the positive..........ENBREL!!!!!!! After messing around
with MTX for 5 mths., my doctor put me on Enbrel and my life has
made a dramatic turnaround. Today was the first day that I had even
a hint of the ankle pain....it lasted about 1 hour. Other than
that, I've been 100% pain FREE since early August. (I almost
enjoyed today's discomfort....a little reminder of how far I've
come). I never thought a drug could do such wonders but it has.
There is no reason for you to be suffering and I'm wondering why
your doctor would let you continue in such agony. Have you called
them? You have to try something different. The most amazing thing
about Enbrel was how fast it worked.....within 2 wks. I felt almost
cured. I know that isn't really the case but I'm at a point where I
can forget about the disease. You deserve the promotion....wouldn't
it be nice to start your new job/promotion pain-free? Go to your
doctor and demand another drug. If that doctor isn't receptive find
one who will be.
Good Luck..........stay in touch.
Good luck with the promotion.

I have read in several sources that it is good to take Vit. C or NAC
whenever you take Tylenol to counteract potential problems for the liver.
Linda

Hi Jane,
I don't have any good jokes but from the way your posting
read.....I'm sure you do. You really made me laugh...you have a
very dry sarcastic sense of humor.......I LOVE it. It helps when
dealing with PA !
Mary

Hi Everyone,
I'm happy to report that the rash seems to be gone....some mild
scars remain but vanity was thrown out the window long ago so who
cares about that.
I finally got in to see a dermatologist. Before going in, I had
done some research on the guy. I found that he had done a couple
interviews with Psoriasis Connections (I think that was the name)
and had also been quoted in an online health piece for ABC news. In
both he sounded incredibly knowledgeable about PA and P in general.
As I walked in the door to his office I was happy to see the
name "Psoriasis Treatment Center of Central New Jersey" on the
door. I was convinced that God had brought me to this man.
OK.....here's where the story takes a turn. After waiting a full
hour, I got in there and he spent a total of 5 minutes with me
before walking out the door. I literally had to stick my half naked
body out the door to ask him if I should get dressed.....which of
course he said yes. During the 5 min. I showed him the remains of
the rash...some still relatively active. He said he thinks it's
probably bug bites to which, b/c of the Enbrel, my body is over
reacting. Geez......I'm a pretty neurotic cleaner.....that would be
alot of bugs. I pressed him a bit. I mentioned the great
information that the people in this group had shared with me...about
initial itchy Enbrel reactions and the possibly of psoriasis flares
(Guttate or other). His reaction was, and I do quote, "that's a
bunch of bull s---".
To be fair, he did say the next time one starts to come in right
away and they'd do a biopsy. I had some when I was there so I don't
really get that. He also found 2 freckles which he said
were "nothing" but he wants to remove so I guess I shouldn't
complain.
The guy asked how long I'd been on Enbrel but didn't ask one other
question about how I'd been diagnosed.......symptoms.......nothing.
In driving home I realized we hadn't discussed my prior problem with
psoriasis ...not a single bit. He didn't look at my scalp, elbows,
nothing. He basically cut me off every time I got going. Oh well.
I went to him b/c I wanted someone closer to home. He ended up
being 1/2 hour but the old derm. was only 1 hour and she was
incredibly thorough. Trial and error I guess.
Thanks to everyone though for all of your help though. Despite what
Dr. Bagel said, I know it wasn't bull s---. Until he actually has
PA or has been on the Enbrel....I'll go with this group.
: )
Mary

Hi all! Welcome to all the new members!
Sorry for being so '"flaky". pun intended :) I had quite a flare up the past
week. Typing was out of the question. I have been trying to catch up on on my
email. My head is swimming from all the information.
Thanks for all the answers regarding MTX dosage. I was told that here, in
Japan, it is limited to 10mg a week, because Japanese bodies are "sensitive to
medication" and apparently, even on this low dose, 97 people died in Japan last
year from MTX side effects.
I was really interested to read how other countries view illness. I really
think that the Japanese "suffer quietly" way sucks!
Yes, my husband (Japanese) is clueless! He is, however, very adamant about
getting me the right medicine and treatments, only if it is to shut me up. LOL!
He even does the baby's night feeding now. YEAH!
Thanks again everyone!
d

Hi Groups,
I am writing to seek information about the dosage of
erythromycin used to treat sojan's symdrome (the dry
eyes, mouth, etc). Does AP also apply to this
disease? IF it does, what is the normal dosage? I am
asking the question for my mother who lives in China
and never heard about AP treatment and no one believes
in it.
Thank you very much for the help.
Nan
Don't know how to send a email.
--- Ethel Snooks <emsnooks@...

Hi Groups,
I am writing to seek information about the dosage of
erythromycin used to treat sojan's symdrome (the dry
eyes, mouth, etc). Does AP also apply to this
disease? IF it does, what is the normal dosage? I am
asking the question for my mother who lives in China
and never heard about AP treatment and no one believes
in it.
Thank you very much for the help.
Nan
--- DEBBIE GIBSON <Debbullwinkle@...

Hi Adriane and Jane,
Just read both your recent posts. Just shows you both ends of the
scale and how other peoples attitudes towards your illness can affect
you.
Adriane, your employers have been great, treating you in exactly the
way a modern company should be treating there employees. Trying to
help in any way they can to make it easier for you to be able to do
your job.
For you Jane, on the other hand it is not so easy, having employers
who are more or less telling you that being in constant pain and
feeling stiff is no excuse when things are not quite right. I can
only imagine how you are feeling about that right now. Them acting in
the way they are is only going to add more stress to you every day
you are in there, due to the added pressure.
Luckily my employers were more like Adriane's than yours in that they
tried to help me in any way they could and I still felt the pressure
because I didn't want to be doing less than the other Techs.
I hope your change in hours helps you and I hope your doctor can sort
out your other problems soon. Also, look into what going on to LTD
involves. You should be able to speak to someone from HR in
confidence. When it was first suggested to me as an option, my first
reaction was to dismiss it for more or less the same reasons as you.
Obviously we will have different circumstances but it has worked out
not too badly for me so far. Less money coming in but we are finding
that we are having much the same lifestyle as we were.
Adriane, you will already have had your operation by the time you
read this so I hope it all went well and you will have as good a
result as you seem to have had with your right hand.
Take care of yourself both of you.
Martin

Hi Nan,
Although not diagnosed with Sjogren's I believe I can add it to the list of
autoimmune disorders I have the pleasure to deal with. I have found the AP
to be helpful; 100 mg a day everyday. I've been doing that for a year in
April. I also take acidolphilus daily (I use Enzymatic Therapy Pearls).
Another product that I think has been tremendously helpful is Biotene. They
make toothpaste, gum, mouthwash, etc. I've been using it for over a year
and shared my results with my dentist. I noticed last month when I went for
a cleaning he now offers samples of the Biotene product line! I purchase my
products from Costco; Walmart also carries them. The toothpaste 'should'
run around $5.00 a tube, same for the mouthwash. I have seen it at Health
Food Stores for $9.00 and that's why I'm providing some alternatives for
you. I find that type of gouging unacceptable.
I hope this helps. El

Hi Denise,
That's great news for you and your family. Hope the sale of the house goes
smoothly and you are settled in in no time.
Take care,
Martin

Hi Ann,
All I can say is that I have not yet been given the opportunity to start on
any of the biologics yet but when they do ok it (Which I hope will be soon) I
will go for it. I have a nine year old son
but...................sometimes..............A man's gotta do what a man's gotta
do! (and woman. Lol)
I might just lock Stephen away into quarantine every day when he comes home
from school.
I'm sure he won't mind if it is helping his old dad! lol
Hope whatever you decide, things get better for you in the future.
Martin

Hi, Serena,
Sally in L. Rock here.
Thanks for your reply-I do know the generic or chemical name of Plaquenil and
did ask the druggist if it was pill form and it is NOT listed in the Pill
Book-strange as it is pretty commonly prescribed for RA. I have a list of the
ACR (Am Coll of Rheumatology) Guidelines for Tx of RA and the meds-dosing, side
effects, efficacy, that someone from this group posted, thank God!
I'd LOVE to come up your way-Hubby & I even bought a little pkg for cheap for 2
nites, 3 days but, as usual, this d--- disease is giving me fits and don't know
if I'll be able to travel.
I know just what you mean about the pain, Serena-it is scary, depressing, etc.!!
I'm going to my GP on Jul 17 and if this Bromelain (pineapple enzyme) does not
get the swelling down, then I'm asking to switch from mino to doxy (or whatever
he suggests) or trying the brand name, ridiculously expensive mino (if I can get
it) and trying Plaquenil. I HATE that we have to be as leary of the meds as we
do of the disease!! BTW, I asked my eye doc last week if Plaquenil eye problems
were reversible (as lit. states) and he said "NO"-but that he'd rather see me on
Plaq than steroids.
I can't stand any more crippling and just in the past week my left thumb and
back of rt hand have swollen badly (even with steroids bumped up) and am afraid
they, too, will be forever crippled-BUMMER!!
Sorry about the back fusion surgery, Serena-YIKES! That had to be SCARY!!
Hang in there!
After while, Crocodile....
Sally in L. Rock

Hi Tam,
Nice to hear from you. I am on the maximum dose of MTX doesn't appear to be
making much difference a few months back they added Ciclosporin to the mix
but apart from an initial improvement to my P, it has not done too much either.
Having said that though, plenty of people in this group are very happy with
what MTX is doing for them so why don't you give it a try. I can also report
no side affects while on the MTX pre Ciclosporin. (I tend to feel nauseous
since starting the latter)
Hope it works for you.
Martin

Thank you Ethel!!! Always good to review.....Debbie

Congratulations on the move! I haven't posted in a while, but I
remember back when you were moving from AZ to Minn. I live in San
Antonio, and I use Tricare also. Currently, the military system will
probably not be able to accommodate you, but don't worry. Right now,
because of the situation in Iraq with so many military wounded and
being treated in San Antonio, Brook Army Medical Center (BAMC) is
working overtime, plus many of their medical staff is currently in
Iraq.
But, many of the Tricare patients go to the Arthritis Diagnostic and
Treatment Center. I go to Dr Mosbacker, but they have 6 or 7 doctors
at the center. Long story, but I went to him on my own, without
realizing that this facility was one of the referrals that Tricare
has. This center has some very good doctors there.
I also take Enbrel, but you won't be able to get it from the military
facility here. I order mine thru the mail order (Express Scripts),
but my husband gets a lot of his medicine thru BAMC.
I am originally from San Antonio, but was gone a long time, and just
returned 6 years ago. I love it here!! The weather has been
beautiful this week--high of 80, low of 70 today, and even better
this weekend.
Sandy

El, Thank you very much for your advice. Do you take
100 meg daily of Minocin or Erythromycin?
Since my mother can't get Minocin, is Erythromycin OK?
Nan
--- ehgooding <ehgooding@...

I take 100mg of minocin daily; I am not familiar with erythromycin. Sorry.

Hi Nancy, I applied for SSDI in July of 2002 after having my first knee
replacement and was denied. My doctors told me to get and attorney and file and
appeal and request a hearing before an administrative law judge. My hearing was
1 year from the date I first appled. The judge awarded me the SSDI after
questioning me for almost an hour. I was 48 when I applied. I also live in PA.
Feel free to e-mail me privately if you like at Goldiesmom12@.... Maureen
Nancy Rambo <njr1651@...
I have been away from this group for awhile due to taking care of my mother
in law during Hospice care.
I have had and was diagnosed with arthritis about 40 years ago. I was
diagnosed with Psoriatic arthritis when I was in my 30's. I'll be 57 in
December.
I've tried all the drugs..............currently I am taking mtx, 7 tabs
weekly, Bextra every day, Prevacid for my stomach daily, folic acid daily,
also bp med, and two weekly injections of Enbrel. I had remicade infusions
for about 4 to 4 1/2 years but the doseage just didn't do the job any
longer. I also take a muscle relaxer each evening.
I am still working full time. Need the paycheck and of course the
INSURANCE. BUT, I cannot see that I will be able to continue to do so
until SS wants me to retire. I have an appointment with my rheumy tomorrow.
I would like tohear about anyone experience with SSDI.
Thanks
Nancy in PA with PA

Full details are available on a press release issued
by Merck and posted on the vioxx website:
http://www.vioxx.com/
Apparently, this time there was a real, controlled,
three-year study that showed an increased risk of
heart attack and stroke after 18 months of use.
-- Allison
:
=====

hi all,
just saw this morning on cnn that the makers of vioxx are no longer
going to sell it because of the worries with the heart.
i never would have seen the report but my kids had a 2 hour delay
because of fog and i was flipping channels and came across the
press conference.
i guess that answers the debate about whether it is dangerous
or not, when the maker of a medicine pulls it.
i am sorry for those it did help, it always seems when you
find a med that works, the side effects can kill ya!
have a good day,
susan in ohio

-
Hi Nancy,
I hate to be a person with bad news, but Disability from the
Government is VERY hard to get. I had to go to all sorts of Drs. and
I have a broken hip and use a walker plus a wheelchair along with my
PA. I was lucky the lady that was working my "case" was retiring and
she got tired of hearing from me and finally let it go through. I
think why it is so hard to get now is that it has been abused. I
hope this is too much of a "downer" but I was shocked by the way I
was treated by their Drs. They don't understand PA at all.
God Bless, Sue.

Thanks, EL. Best wishes. Nan
--- ehgooding <ehgooding@...

_CNN.com - Arthritis drug Vioxx being pulled - Sep 30, 2004_
(http://www.cnn.com/2004/HEALTH/09/30/vioxx.withdrawn.reut/index.html)
I saw this on tv this morning. I only took Vioxx very briefly a long while
back.
Lynda

Hi all just heard on CBS on the Early Show that there has been an
international recall on Vioxx.
Margaret

gee i never knew about vioxx has it been pulled in canada also, i went and seen
another doc yesterday, my family doc is off on sick leave. i asked him about
vioxx, oh just take it . its rmours to get a good drug off the market. well
after reading rhis morning, he lied to me im reaaly scared what can happen to me
ive been on the drug since this last febuary,what should i do . HELP PLEASE ERIC
LEE
[Editor's Note: Please: CALM DOWN, Eric. Vioxx has been used by 84 million
people since it was first authorised for use by the general population. The
risk that an individual will suffer a heart attack or stroke related to Vioxx is
VERY small. Talk to your regular doctor when he or she returns. You should
discuss alternative treatments. Any decision about which drug product to take
instead of Vioxx should be made in consultation with your physician based on an
assessment of your specific treatment needs. If you feel that you have heart or
stroke issues NOW, then report to your nearest emergency room. You were not on
the drug for very long. You WILL cause yourself some real problems if you don't
calm down and start to think rationally. If you have been under regular medical
care and your heart, blood pressure and other vital signs have been OK, there is
NO reason for you to be concerned. Virtually every member of this list has been
on Vioxx or some other COX-2 inhibitor at one time or another. People are not
dropping dead like flies. Only a minuscule percentage of those taking Vioxx
have been affected. The odds are with you. Kathy F.]
susieesue <susieesue@...
Hi Nancy,
I hate to be a person with bad news, but Disability from the
Government is VERY hard to get. I had to go to all sorts of Drs. and
I have a broken hip and use a walker plus a wheelchair along with my
PA. I was lucky the lady that was working my "case" was retiring and
she got tired of hearing from me and finally let it go through. I
think why it is so hard to get now is that it has been abused. I
hope this is too much of a "downer" but I was shocked by the way I
was treated by their Drs. They don't understand PA at all.

Aleve is all i take. I take the generic kind.

Hi Jean -
You sound exactly like I did about 2 years ago. Thankfully I had a boss who
was kind and understanding and did everything legal he could to keep me
working. My job wasn't physical - I was in charge of travel for the top
execs of a large chemical company here.
First I went to part time from 40 hours to 30 hours. Then I went on flex
time. My boss understood that I could wake up feeling ok or feeling rotten.
If I felt rotten I didn't have to start my hours until noon or one o'clock.
That helped too for awhile. Finally it got so bad that everyday that I
worked I would come home from the office in tears from the pain. I was
taking Lortab and that didn't even begin to touch the pain. I went through
mtx, gold shots, remicade - nothing was helping. Finally, one night I came
home and just basically had a breakdown. I just couldn't do it anymore. I
never did go back to the office. I ended up in the hospital because my
electrolytes were way out of balance and that was awful.
Thankfully I am getting disability from the company that I worked for which
is about 60% of my salary and has helped tremendously. I filed for SSDI in
February 2002 and never even got a denial until JANUARY 2003. It was
ridiculous. They kept sending me to their doctors which did no good at all
as far as I could see. At least one of the doctors said that as well
documented I had everything )previous treatments, doctors etc) that he saw
no problem in me getting it the first time around in spite of my YOUNG age -
I was 54 at the time! Well I did get turned down and hired a lawyer just
because I couldn't take the pages and pages of forms to fill out again.
Well, I ended up filling out a bunch of forms anyway. If I am turned down
this time, I think the lawyer will be worth it, just to give me pointers on
how to answer questions from the judge and what questions to anticipate.
That is if I ever hear from them again! I filed again in March and still no
judgment. I did get a note from SS that they hadn't received my records from
the Eye Center and I needed to call them and have them send them.
(I also have cataracts - had surgery on the first eye in March and a 2nd
surgery on the same eye a month later because my vision is so bad in it. I
could see before I had the surgery and now my vision is terrible. I won't
let them touch the other eye until the first one is straightened out!)
I have 2 boys in college too and it has really put a stress on us. I try not
to feel guilty because I know in my head that it isn't my fault - but that
is not what my heart says.
Keep your chin up and don't let your boss give you a hard time. There are
laws about that kind of harassment in case he doesn't know it!!
Take care and write to me anytime,
Maureen in Tennessee

Dear Everybody,
I take 100 mino MWF for my RA for two months (have RA
for three years) and right now in the middle of flare
up--both of my elbows, knees are swelling and my right
hip is sooo painful that I can't walk. I take
predineson for rescue, and celebrex 200 meg two times.
Detox bath and Lemon water don't seem to help.
Should I add Mino and other drugs or what should I do
to deal with the flare. I am very miserable and don't
see hope in front. Friends, please help me to
clearify my situation.
--- MRSROSE2000@...дµÀ:

How is your ASO (anti streptolisyn O) titer?
Maybe you need anti strep medication - ampicillin
(penicillin based medication) to clear the strep, or you may have some other
infection in your nose, gums, throat, teeths etc (UTI e.g.). Check for any
infection - chronic - that would not be sensitive to mino
Anna

Hi, Chinese? person!
Sally in Little Rock, Ark., here.
Stay on the mino, Celebrex and Prednisone, PLUS try Arthritis Tylenol (or a
generic) and a muscle relaxer (like Robaxin-must be prescribed) and work up
SLOWLY to the full minocin dose. You WILL get better!
We know the pain is hellish-been there, done that!!
Good luck!
Pamper yourself and let others take care of you, if you can!
Sally in L. Rock

Anna,
Why made you think that I have strep infection? I had
before but amoxpiccillion helped clear that.
now i don't feel that I have any infection in this
area. I have enver had ASO tested. Does nornal CBC
blood test include it or where should I ahve it done?
Thank you for your sincere help.
--- ionstanciu <ionstanciu@...

I just got home from standing line for 2 1/2 hours to vote, and boy are my
legs sore. I didn't eat supper beforehand so I was ready to pass out. Next
time I am going to take advantage of early voting, which I didn't know was
an option. I thought it was only for absentee, but I guess not. I am
heading to bed. Jo Ellen

Hello Leanne & Owen
We have exchanged a message or two before. I am in Melbourne. With my experience
of PA since being a teenager, and my training as a teacher, counsellor and
priest, perhaps I can be of more help to you than the other way around. Owen
must be dealing with a huge sense of grief for his lost childhood (if not yet,
then it is to come). I know what it is like to not be able to do most of the
things my peers were doing and feeling old before my time.
I spent my high school years on crutches, not being able to play any sport, and
therefore not fitting in with many people at school at all. Young teens feel
different enough without having an odd illness as well.
I have worked with many children and young people with illness or disability of
some sort or other. I am a foster parent - the only work I can do at present. I
have just been asked to take on twin 13 year old boys with cerebral palsey. The
jury is still out on that one.
Does Owen ever use msn or ICQ ? Perhaps we could chat. My msn address is
skruff16@... and my ICQ number is 118208597
Please keep in touch.
Greg.

My derm wants me to start backing down on the Enbrel dosage to see if I can
handle that.
My question is- has this worked for anoyone out there on Enbrel? After the major
flare that
I went through that got me on the Enbrel I am a little concerned about backing
down the
dose and having another flare up. He (derm) says to give it a try and if it
doesn't work to
go back up... easy for him to say, he doesn't have put up with the pain and
swelling if he
is wrong!
Tom in Anchorage
btw did I mention that it was zero degrees in Ancorage today!! brrr

Hello Tracy.
I'm Leanne. We live in Australia.
Welcome to the Group.
My son got diagnosed with PA in September this year. It's really
aggressive, and like you, so far no medication is slowing or calming
it down. He's just about to have his 8th methotrexate injection, and
besides mouth ulcers, it hasn't helped either.
But, it will be okay. We all just need to find a bit of patience
(impossible, I know) and wait until the right combination is worked
out for you. Take a big deep breath, and try and rest as much as you
possibly can.
My thoughts are with you
Leanne

The benefits from eating healthy are endless. And, according to Dr.
Nicholas Perricone, who was a guest on the Oprah Winfrey show, mentioned
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berry is one of the most nutritious and powerful foods in the world.
MonaVie Inc., a network marketing company started in 2004, launched on
January 8, 2005. The company was formed to market a wellness product,
the Açai Amazon Berry, in the United States, Canada, Puerto Rico,
Singapore and Australia. With 10 times the antioxidants of grapes and
twice the antioxidants of blueberries, the Brazilian Açai berry is
considered to have the best nutritional value of any fruit on Earth.
MonaVie is a new Açai fruit health drink and opportunity which is
taking the world by storm, and is becoming known as the most beneficial
fruit in the world. In addition to the Açai berry, it's
scientifically formulated with 19 top super fruits from around the world
and has been known help bring insulin levels down in diabetics, help
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To view actual product testimonials, click on the link below:
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info@... <mailto:info@...
http://www.mymonavie.com/visionary

Article from today's Los Angeles Times. This will
help many of our members save money!
U.S. TO ALLOW CANADIAN DRUG IMPORTS
The government will stop seizing pharmacies'
shipments and instead conduct sample tests.
By Lisa Girion, Times Staff Writer
October 4, 2006
The federal government plans to halt a
controversial crackdown on discount drugs mailed
from Canadian pharmacies to U.S. customers,
removing a significant hurdle to Americans buying
cheaper medications from abroad.
The Department of Homeland Security, which
operates the Customs and Border Protection
agency, disclosed this week that it would halt
confiscation of Canadian drugs Monday and instead
conduct random sampling to identify counterfeit and unsafe drugs.
ADVERTISEMENTPopular medications such as Lipitor
and Fosamax can be 30% to 80% cheaper from Canada
and other countries, surveys have shown. But the
U.S. government was confiscating as much as 20% of the shipments this year.
The move reverses a policy that began last
November around the time enrollment began for the
Medicare drug plan. U.S. officials said the
Canadian shipments had been confiscated out of
concerns about the drugs' safety, but consumer
advocates and others contended that the crackdown
was an effort to limit competition in the
pharmaceutical market and force seniors to sign
up for new Medicare plans and pay higher prices for drugs from U.S. pharmacies.
The new testing policy may be a response to
criticism that the government has offered little
evidence for its safety concerns about foreign mail-order drugs.
The change comes as millions of seniors on
Medicare drug plans were expected to hit the
"doughnut hole." That is the gap in coverage
created by Medicare law that requires enrollees
to pay the full cost after their total annual
drug spending exceeds $2,250. Coverage kicks in
again if annual drug expenses hit $5,100.
As a result, many low-income seniors were
considering going without needed medications
through the end of the year, advocates said.
The change in customs' practices "could have a
huge impact," said Jodi Reid, director of the
California Alliance for Retired Americans.
"People were concerned that they might not get
their drugs because they were getting seized,"
Reid said. "This does open that option again for
people who were trying to figure out how to get
their medications to manage their health at a price they can afford."
One Central California woman whose blood pressure
medication was seized a few months ago said she
was relieved that she might not have to worry about that at least for now.
"I hope that it continues because so many people
are in need of the ability to purchase
maintenance medications and life-sustaining
medications at more affordable prices," said the
woman, who asked that her name not be used. "Some
of these medications are $3, $4, $10 a pill."
Although it is illegal for individuals to import
pharmaceuticals to take advantage of price
differences, the Food and Drug Administration
historically had turned a blind eye to personal
purchases of nonnarcotic prescription drugs from
places such as Canada and Mexico in shipments of
as much as three months' worth.
That changed Nov. 17 when customs began a quiet
crackdown on foreign mail-order drugs. By some
estimates, more than 40,000 packages were
interdicted. Canadian mail-order pharmacies said
seizures jumped to a peak this year of 20% of
their U.S. shipments, up from 3% to 5%. They said
seizures declined after the crackdown was disclosed in media reports.
Seniors complained that they were failing to
receive needed medications, and members of
Congress who favor the importation of cheap drugs
for senior constituents criticized the agency for
failing to adequately warn people of the crackdown.
Late Monday, customs officials sent an e-mail to
some members of Congress that it would be
abandoning the seizure policy. Instead of the
broad effort, the e-mail said the agency would
sample and test mail-order medications for
counterfeits and ineffective ingredients on
"randomly generated days throughout the fiscal
year." The analysis, it said, would help
determine the source countries of problem drugs and shape future enforcement.
A Homeland Security spokeswoman would not discuss
the change in policy, but she issued a statement
saying, "While we are reversing this policy,
[Customs and Border Protection] remains
committed, in cooperation with the FDA, to
protecting the American public from unsafe and
ineffective medications. We will be focusing our
resources to best protect the American public."
A spokeswoman for the FDA said the agency had no
comment because it had not been officially informed of the change.
One Canadian mail-order pharmacy said U.S. orders
had dropped 30% this year because seniors were
signing up for Medicare plans and had been scared
off by the increase in seizures.
Bill Pigden, a spokesman for Winnipeg,
Canada-based CanAmerica Global Health Services,
said that the pharmacy already had seen orders
pick up as seniors fell into the so-called
doughnut hole, and that he expected that trend to
increase with the change in seizure policy.
Sen. Bill Nelson (D-Fla.) called the change a "huge victory."
"For nearly a year the White House has been
punishing seniors for filling their prescriptions
at lower Canadian prices," he said. "Now it looks
like the government is getting out of the
business of harassing these consumers."
In Congress, political momentum in favor of
allowing personal importation of prescription
medications is building. House and Senate
Republicans recently reached an agreement that
would allow Americans to bring a 90-day supply of
drugs across the border from Canada. But, in
negotiations over the language of the Homeland
Security spending bill, the conferees stopped
short of doing the same for medications purchased via the Internet.

It took me a while to work out 'net speak'.
I've travelled around a bit, and yes, Australian slang is by far the
funniest.
Leanne

Dear Lori,
Glad to hear you are an incredible woman. I think most of us are who suffer
with this damn disease. I can't really help you with the MTX questions
since I had a bad reaction right off the bat with it. When it comes to the
Cox-2 dance, I get really frustrated as well. First I was told, ''Oh no
Vioxx is just fine, bad studies, not relevant data...blah blah blah, Then
they took it off the market and my doctor wanted to put me on Bextra or
Celebrex. I questioned the wisdom of his decision and of course ended up
with Bextra. After trying to take it for about 2 weeks I decided to stop.
Now after almost 2 years my edema seems to be letting up. The fact all this
started on Vioxx on one ever questioned, they just wanted to blame it on
prednisone.
Unfortunately, I'm in the middle of a bad flare. My hands, knees, feet,
jaw, hip and you name it are hurting and killing me. So I got into my old
medicine chest and found an old prescription of Nalfon, that was still good,
but almost gone. I took a few pills and the pain in my hip almost
disappeared. I stopped it and it came right back. So I'm waiting for my
doctor to call in a new prescription today. I'm hoping that taking it on a
regular basis will help some of the flares and get me back to my old
"normal" self.
I'm glad you found the group and you I'll find your share of laughs here
that's for sure, and a few tears as well. Normally I'm full of fun, but my
hands are so bad it's taken away any sense of play today. Anyway, welcome
and rest assured than you aren't the only one pissed off at the injustice of
this disease. Love, Fran

No advertising is allowed on this group. If you so post again, it will be
reported to your server.

Is there a definate link.

Susan in Ohio wrote: hi,
when i started back on enbrel in may, my dermie started me on
2 doses 2x a week. he said the enbrel rep had just recently told
him that for tough psoriasis the double dose was more effective for
the first 3 months. it did work, and some has come back since
going back down to regular dose.
I am also on Enbrel two doses, twice a week and when I told my doctor I had read
on this list that it was only recommended for a 3 month use...he laughed. He
said that is what the insurance companies want you to believe, but there is no
danger/problem at all staying on the higher dosage. I also got the letter from
Enbrel today telling me that the shots are now available in the 50 mg. dosage,
so only one needle! Yeah! Linda in Poulsbo, Wa.

Karen Mississippi,
MTX definitely gave me brain fog and yes my fillings feel out too. I
blamed it(the fillings) on the prednisone at the time but it could
well have been the MTX.
Suzie

Patti from Ontario Canada. Age, 48 (in 3 days.)
Dx about 10 years ago after doing my own research and going to Dr
armed with it!
Symptoms started when I was about 13 years old with "funny nails"
and pain and stiffness in hands and neck. Now have P on elbows and
knees, very mild, nails beginning to show separation from nail bed.
PA is everywhere so won't list it, lower spine the worst!
Huge P in my family from the Irish side also many female relatives
(on same side) with Lupus.
17 year old daughter has be exhibiting symptoms for about a year :(
Patti

Thanks, Michael, for starting the thread on age and onset age of PA. Many
people who have rarely posted have responded to your interesting question.
You've really stirred up interest. Please think of some more questions!
To all who responded to Michael, thanks for jumping in. We hope all of you
feel comfortable here and among friends. Please feel free to jump in
whenever you have a question or comment for the group. This is not a PA clique
for
the few - we're here for everyone!
Wishing you wellness,
Kathy F.
Moderator

In a message dated 11/8/2004 3:32:54 PM Central Standard Time,
lina231@... writes:
Does anyone know of anyone that has experienced this? I am worried about the
disfigurement of my hands and all my joints, but what if I should be more
concerned with it attacking my more major organs?? I would love to hear any
responses or any thoughts anyone has on this subject.
Scared in Indiana, Lina
Lina - BREATHE! This is NOT the end of the world. Yes, arthritis (of all
forms) can attack your organs, but you do have some control over this disease.
Through medications (research and find out which ones are for you), and
physical activity you can somewhat control how severe your disease becomes. I
was 23
when I was diagnosed, I am now 30 and doing just fine! I can't worry about
what might happen, I have to live for today. Believe me though, I have been in
your shoes fearing the day I might be in a wheelchair or not being able to
have children. However, once I got my disease under control through activity &
Enbrel, I realized I CAN live with this.
You MUST BE POSITIVE! You MUST NOT WORRY ABOUT ANYTHING UNTIL IT HAPPENS, or
you might bring some of those things on. Your mind does play a HUGE part in
all of this.
If you want to chat, you can e-mail me directly.
Sincerely,
Tiffany
P.S. This disease causes a lot of soul searching, but step #1 for me was
getting over the FEAR!

Hi!! LOL is an abbreviation for"laughing out loud", there are a whole bunch
of different abbreviations, it might take all day to list them here :) If
ever you don't know, feel free to ask, because the only silly question is
the one that goes UN-asked. :)
Have a marvy day!
Crystal

Subject: RE: Drug for Fatigue
Dear Linda, I've been on provigil on and off for the past year. Most of
the time off. It does seem to help some with the fatigue, but Arava has
helped me more with fatigue than anything. Provigil tends to make me a
little shaky, and I already have problems with that from my asthma
medication. Also I think provigil tends to raise your blood pressure and
luckily mine has only been a high a few times, so it didn't really affect
mine. I guess it boils down to if the increase in energy is worth the side
effects and most the time for me it wasn't. Hopefully, it will help you and
you won't have the problems I did. Good luck and let me know how much you
think it helps. Take care, Fran
Thank you so much Fran for your wonderful reply. You always are so wonderful
about writing back helpful, encouraging information and I sure do appreciate it!
I took the first Provigil today. I had shopping and errands, so decided the
extra boost might help. I did not feel any different at all. As far as raising
blood pressure, I could use the boost. Mine is so low that it would be treated
as a disease in Europe! For some reason the US does not recognize or treat
extremely low blood pressure. Anyhow, that also adds to my feeling of fatigue.
I think I will only take it when I have days where I HAVE to get out and really
go. (Christmas shopping!)
I have never taken Arava. For some reason it has never even been mentioned by
my rheumy. I take Enbrel and Celebrex, and other stronger pain meds if needed.
Still hurt all the time and feel a hundred years old.
Once again, thank you so much for your reply. Linda in Poulsbo, Wa.

Sure does! Sorry, we can't stop it. They subscribe to the group, leave
their message and then unsubscribe.

Hey Tom,
I have never done this but I am very interested as I have Fibromyalgia in
addition to PA. Could you share a bit more info as to exactly how you do it and
how it relieves your muscle pain, how long you feel better. Any info would be
helpful. Also, approximately how much you paid for your personal unit.
Thanks,
Denise

Hi Jan,
I am not computer friendly and am afraid I will not get my question in
before I skrew up 3 or 4 times (smile).
Anyway I want to know how to deal with secondary infections from the MWF
protocol. I have been on Minocin since 1997. I take Difluan 2 times a week
when I need it and of course acidophilis. I get secondary sinus infections
at least every other month. So then I am also on an antibiotic for this
infection. Of course Ethel thinks I should detox and maybe someday I will
(grin).
I would appreciate you asking him this question for me. Thank you.
cooky

Hello,
Can seronegative RA change to positive or vice versa or is it stable?
Thanks!
Pat

Hello,
Do sero-negative and sero-positive values change from one to
the other or are they stable?
Does anyone have a reference that mentions this?
Thanks,
Pat

Hi Dave,
It makes all the difference when you have a doctor that seems to know what
he is talking about. My doctor is going into retirement within the next couple
of days so I am a bit worried about who I am going to get next.
Great that the Bextra is working so well for you and at least you now know
just how well it works! lol
Cheers,
Martin

Dear group,
On behalf of Steve and myself, I want to say 'thankyou' to all of our
friends in this group who sent messages of condolence for our loss of
Janene. We are so very unhappy and lonely without her.
Some of you asked how you could help - there is one way - please keep
an eye on the group for a while for me and make sure all queries are
answered.
God bless all of you,
Chris and Steve

I have been using Enzymatic Therapy acidophilus pearls (purchased at
vitcost.com or swansonvitamins.com for about $19.00 for a 90-day supply) for
several years and have not had any yeast issues. I believe others on this
list have used other products that may cost less and are also reported to be
effective but I use the pearls (they do not require refrigeration). El

my mom had slipped into acoma 2 weeks ago whe nthey were going to do hip surgery
on the rite hip for the osteo is eating her joint up, im her son bjorn just
posting to let u know what happened ... she had a small blood vessel ruptue in
her head. she is lucky to be alive,,, she is doing okay.. i will try to post
again soon,, thank you bjorn,,, her son

Dave,
I take 20 mg once a day.

Hi there,have you checked out the possibility of gluten and dairy
intolorances.I have a fabulous AP doctor who was extremely sick herself
with chronic fatigue and fibro.It took her years to get better but today
she is just fine and her mission now is to help all of us.She says that
about 70-80 % of people with any chronic disease has gluten densitivity
or outright Celiac.Blood tests are not very acurate but you can test
yourself by going to www.enterolab.com.They will send a kit,you send
back a stool sample and they will send you the results by e-mail.I did
not think I had a problem but when I got the results I nearly passed
out.Trouble with these sensitivities is that we do not realize we have a
problem until too late.Read about it at www.celiac.com. Lynne SD

Hi Everyone,
I have been working in special education classroom for the last five
years. Last year was hard and I used all my days. Now it is November
and my sick leave is already gone. The doctor has me out on leave
until Dec 1.
I feel lucky because I work with such a wonderful group of people.
The principle refuses to accept my leaving the position. She has a
sister with MS and she knows that working helps keep us sane. She
also knows as time goes on we get less reliable. But she wants to
hang in there with me. The classroom teacher and other aide arranged
for someone to bring my family and I dinner each night. They want me
back as soon as I feel better. The teacher said she would do my job
if I just want to sit and teach. I am an aide and have to restrain
and change diapers, do inclusion time with the kids etc... I feel so
blessed to be working with such a great group of women.
Of course I want to do what is fair. They really need someone who can
do the job, but they make it difficult to leave. I have PA,
Fibromyalgia, Degenerative Disk Disease, and osteoarthritis. Between
muslce relaxers, sleep medication, vicodin, enbrel, etc.. I sometimes
have a hard time just thinking straight and the pain never goes away.
The point is that there are people out there who can be very caring
and helpful even though they can't understand what it is like. I
don't know how much longer I can work but want to try again in Dec.
My doctor has already listed me as disabled, I am thinking if
anything maybe I can cut back my hours. I have one year to go to
finish college, I am 45, and I will have my psych degree and either
go for teacher certification or school counseling. It is just hard to
know if there even is a "working" future for me. I just know I have
to get my degree, I have been working on it since the 1980's.
Sorry this is so long. I just want everyone to know that there are
people out there who care despite not having the disease.
Pat

I use a TENS unit (electrical stimulation) on my back & neck. It has
actually helped me cut back on pain meds sometime. I just have to grab the
tens
unit at the very start of my pain.
It is weird the way it helps.
Love & Prayers
Karen

Hi Lost,
My MD told be about the www.theroadbackfoundation,org. There I was
connected to this group and therefore did not take the toxic
medications you mentioned. My knee hurt terribly for 18 months
before using minocin (as recommended by the roadback site) and
eventually it got better (it was diagnosed via biopsy as inflammatory
arthritis) without all the toxic drugs the rheumatlogist wanted.
Most of the people who contribute to this group have had some kind of
inflammatory arthritis or related disease, so they are speaking from
their own experience about what works for them. The people who are
selling things typically get ejected from the list. If you are
interested in objectivity for natural remedies, you could find an
excellent naturopathic doctor to help you. Many sell supplements, so
I would be careful about people prescribing things they sell. Some,
however, are quite honest, and sell things they believe work. I've
found that many of the more sincere practitioners do not charge the
100% markup over cost, but will supply patients with just enough
mark-up to cover their time in placing orders.
When doing research for products on the internet, I try to avoid
commercial sites if possible and go to sites marked org.
ew

Debbie, are the pads to be worn only one night? Patrice
_____

RE:
Also, the weight gain every month is true also. Do you think it
is because we cannot move around like others or is it the medication? I have
taken Humira and now on Enbrel again and I truly think it makes me just keep
gaining and gaining. I think I will get a job this year as Santa.
Janet
Dear Janet, I had to laugh at your Santa joke. I agree with you that the
weight issue is a real nightmare after being sick so long. I know most of my
problems have been a combination of the medication like prednisone, but also not
moving is probably my biggest downfall. The sad thing is I know I feel better
(at least that's what I tell myself) if I did move more. It's just hard to do
when it hurts to do anything at times. just yesterday I was squeezing some glue
into another bottle, now that doesn't sound like a huge job, but this morning my
arm and elbow are so sore I can hardly stand to touch them. It's just doing
things that you haven't done in awhile that really seem to kill you with fibro
or PA for that matter.
I had the epidural injection in my neck on Monday and so far it's not made a
big difference. From what I understand most people need at least 2 shots before
they feel any relief. Knowing my body, I"m sure I'll need all three. I also
have so many sleep problems it's a nightmare just thinking of going to bed
anymore. I find myself just putting it off as long as possible because I know
when I wake up (usually in 2-3 hours) I'll feel worse than when I went to sleep.
How are you doing with the sleep apnea machine? I feel like a complete failure
on that issue. I haven't sent the machine back, but I probably should. I have
no idea if my insurance company will keep paying for it when I'm not even using
the machine. I didn't use it once in past 2 months. Let me know how you are
doing and maybe you'll inspire me to keep trying. It just seems like too much
to me to deal with when I already feel like the night is complicated enough.
Anyway, try not to worry about gaining the weight. Hopefully once you feel
better, you'll start doing more and it will come off more easily. That's what
my family doctor actually tells me, which is sweet considering how most doctors
are about weight control. Take care and talk to you soon. Love, Fran

What is NAC?

Hi Pat,
Sounds to me like those who work in special education
really are special people. What a caring environment
to work in.
I know what you mean about hanging in there to get
your degree, my b.s. took me 22 years, and I finally
graduated in year 2000 at age 40. It was worth the
effort, and fortunately PA didn't attack until after I
was finished.
Rest and heal as much as possible. I'm out of sick
time too, but don't have any other options right now,
so I'm looking forward to the 10 days off at
Christmas.
warm blessings, jane

Dear Chris,
I just wanted to add my condolences to you and your family for your loss of your
precious daughter.
I am praying for you and your family. May God grant you comfort and peace
during this difficult time.
Sincerely,
Lisa Johnson
Sparks, NV
Chris Adlard <cadlard@...
Dear group,
On behalf of Steve and myself, I want to say 'thankyou' to all of our
friends in this group who sent messages of condolence for our loss of
Janene. We are so very unhappy and lonely without her.
Some of you asked how you could help - there is one way - please keep
an eye on the group for a while for me and make sure all queries are
answered.
God bless all of you,
Chris and Steve

The injectable form of Methotrexate is much easier on your liver. I took
the oral form (pills) initially. After 30 days my liver enzymes were high
and I experienced frequent dizziness. I was symptom free after changing to
injections.
-Steve