Rheumatic

Cat, you are so right! I am also amazed at the suffering, strength and
compassion I find here. You are also correct, I don't feel inspirational but I
do feel inspired. Thanks for the reminder. Cheri
catwright <catwright@...
Sitting here this lazy Sunday morning, just reading over new messages
and, as always, am just overwhelmed by the strength & courage that I
see exhibited here. I feel an odd mix of being aghast at the ways
this disease can strike and the treatments required, while at the
same time, complete awe that you all manage to endure it yet still
find it within yourselves to reach out and help someone such as
myself.
I'm betting that the majority of you do not FEEL the least
bit "inspirational," but YOU ARE ... and I just wanted to say a big,
big, THANK YOU.
God bless,
Cat

Hi,
i personally have not needed any replacement surgery yet, but may i
please try to reassure you.
last year, here in vancouver, i was in a rehab hospital - arthritis
ward. at any given time there were about 20 of us. about half were
surgery patients receiving rehab/physio etc. after a replacement
surgery - mostly hips and knees. a year and a half ago my dear
father also had his disintegrated right hip replaced. he was 81
years old at the time. in every case there were no complications.
at the hospital i saw about a half dozen surgery patients for a week
before their surgery - saw their swollen knees, etc. and had physio
at the same time as them. i saw how much pain they were in, and how
immobile they were. they then went to a different hospital for their
surgery and were back 2 days later, to start their physio/rehab
treatment. it was positively amazing how quickly they were back up
on their feet, walking, albeit with a walker, but day by day their
strength and stamina returned. everyone swore by the surgery and had
no regrets whatsoever for having it done. they all said the
difference before and after was like night and day. i am no longer
afraid of replacement surgery, if and when i need to go down that
road. another thing, the age of the patient didn't seem to make much
of a difference. modern medicine has come such a long way and it is
miraculous what a replacement can do for you.
it's normal to be apprehensive and nervous - who wouldn't be - but
PLEASE, try to erase what that vindictive person told this board.
here is just one case out of how many more where she hurt one of us
with her nastiness. thank goodness kathy had the smarts to block her
from affecting us any longer.
the very very best of luck to you, susie. i will be thinking of you
and you will be in my prayers.
gentle hugs,
karen

Karen,
I would purchase brand name Minocin made by Stiefel in Canada. Please
see my web page www.tmgp.com/minocin.htm
Sincerely, Harald

---
Hi Cheri,
Thanks so much for your message about the hip replacement. I'm
trying to get into the "positive thinking" for my surgery...I'm
getting scared which is always natural I guess. I've had two hip
surgeries-one this last March and it didn't help, with my age-43 the
Dr. didn't want to do a total hip replacement and put in screws and
plates-it didn't come together in the healing so I'm back to surgery
again. I've been using a walker and wheelchair so my hope is walking
with a cane. I still have the PA in my knees and ankles but not too
bad. My Rheumy said last week he has given up on me-he is very
compassionate and I cried in his office-he felt bad and said he
mostly was giving up on himself with the enbrel and arava not helping
me at all and he wanted me to go to someone else (another Rheumy) for
a second opinion. He thinks I have something else along with my PA,
but wasn't sure. I keep praying something will work.
Thanks again and God Bless, Sue.

Hi Crystal --
I have been getting by on Tylenol since I was dx 3 years ago. I used to take it
occasionally but lately have been taking a lot. My rheumy says I can take as
much as I want over the dosage because my liver is fine so far. I got the
arthritis version and the 8 hour version. It really helps. The arthritis
version is 650 mg. I was taking only one 8 hour but now I often take 2 of the 8
hour and then take the arthritis version in between if I really need help. Ask
you rheumy how much you can safely take.
Good luck, Cheri
Turrelle LaMere <turrelle@...
survival mode indeed. today i understand why sometimes karen posts in just
lower case. today it really hurts to push on the right shift key because my
pinky seems to be flaring something fierce. bending it to hit that shift key
is just a little too much today LOL
and to everyone else, my rhumy said that as an alternate pain remedy i can
take tylonol, but I haven't found it to be working...any other suggestions
for over the counter relief?
Love and light
Crystal

Hi Gang! Geoff here.
Over the years there has been, and will doubtless continue to be, a lot of
controversy over "Big Pharma" and their influence on our lives. People
decry manipulated tests, a paid-for FDA, and all sorts of other factually
accurate issues, while on the other side they decree those complaining as
being over-reactive, fanatical, and prejudiced. There is room on both sides
for both sides, as those arguing switch sides often.
However, there is one overriding question -- who has the juice? Is the USG,
or the multinational pharmaceutical giants? These two leading paragraphs
from the AP's Business Wire yesterday really should put to rest any question
of who controls whom. Parents of autistic kids lost all doubt sometime ago.
START
--------
WASHINGTON - Early signs suggest this year's record supply of flu vaccine
could exceed demand, and the potential financial blow to the drug industry
could diminish its interest in serving this market just as the U.S.
government tries to prepare for a possible bird-flu pandemic.
Public health officials and academics who met Thursday at a conference to
discuss seasonal- and bird-flu preparation urged the government to commit
billions of dollars more toward its bird-flu outbreak response plan. Some
worry that without adequate financial incentives from the government, the
drug industry may not make the up-front investments needed to ensure its
readiness in the event of an emergency.
---------
END CLIP

Does help if you can spell

Hang in there, Susisue. Things will get better.
-Allison
=====

Sitting here this lazy Sunday morning, just reading over new messages
and, as always, am just overwhelmed by the strength & courage that I
see exhibited here. I feel an odd mix of being aghast at the ways
this disease can strike and the treatments required, while at the
same time, complete awe that you all manage to endure it yet still
find it within yourselves to reach out and help someone such as
myself.
I'm betting that the majority of you do not FEEL the least
bit "inspirational," but YOU ARE ... and I just wanted to say a big,
big, THANK YOU.
God bless,
Cat

I'm using xanthum gum. It makes it a bit lighter. Good luck. It will
never have the texture of wheat!
Ks Di

Dear Group,
I just wanted to say one last thing on the Brenda/Bjorn situation. Then
hopefully we can put it all behind us. First of all, thanks to all of you
for supporting me. As usual this group is just wonderful and comes through
when you are down or feeling low. it's amazing how many of us seem to
connect to each other simply from our emails. It's a wonderful thing we
have going here. I guess that's why the whole situation was so upsetting to
me at the time.
I also wanted everyone to know what a great moderator we have, even though
you probably already realize it. Kathy stopped the "hateful" response that
was sent to me from this person, and has been on top of the situation from
the very beginning. We are so lucky to have her for our moderator and I
just wanted to say thank you again Kathy. It could have been a much worse
situation and as usual she stepped in and took care of things and all of us.
I've been in a few groups before and no one has come close to Kathy's caring
and thoughtfulness. I know I'm embarrassing her, but it's the truth.
Thanks again Kathy! You are great! Love, Fran
[Editor's Note: You're right, Fran, I AM embarrassed. In any case, thanks for
the salute. You're the best! Love, Kathy F.]

I put my left hand out and then it feels to them they should only take my
fingers in a light grasp. It works for me every time. Then there is no need
to explain as a lot of women do this.
cooky

survival mode indeed. today i understand why sometimes karen posts in just
lower case. today it really hurts to push on the right shift key because my
pinky seems to be flaring something fierce. bending it to hit that shift key
is just a little too much today LOL
and to everyone else, my rhumy said that as an alternate pain remedy i can
take tylonol, but I haven't found it to be working...any other suggestions
for over the counter relief?
Love and light
Crystal

Sue, this is the place to share your hopes and fears. I'm so sorry you have
been feeling so bad lately. My mom had a hip replacement and she said she felt
better when she woke up than she had for 5 years so let's hope that is how it is
for you. She also recovered quickly and has been getting along very well with
it for almost 10 years now. Granted she has never been a very physically active
person but she and we are really glad she did it. I hope yours goes as well and
does you as much good. It sounds like you have enough problems right now. What
is the eye thing? Is it PA related? I ask because I am beginning to have eye
issues.
I send you a huge hug, Cheri
susieesue <susieesue@...
Hi Everyone,
First I wanted to say to Fran-good job with seeing through
Brenda/Bjorn-I thought it when Bjorn first posted...she/he really
does need help and I hope they get it. I have been afraid for my
surgery for my hip replacement after Brenda slipped into a "coma"
after hers...so if that wasn't true about her surgery/coma she has
caused a many night for me without sleep and with all sorts of
worry. I really pray that she gets the help that she needs. I had
to go through more tests with my pre-surgery worrying about the coma-
EKG, etc. I have told my Dr. about my fear and he told me that it is
rare, but he can't tell me that it won't happen. My surgery is Dec.
6th.
I hope everyone has been well-this awful weather change here in
Michigan-back up in the 60's has worked awful pain with my PA. My
Rheumy said he has given up on me and wants me to get a 2nd opinion
because the Enbrel and Arava has done nothing for my PA. I can
barely see out of my left eye and my spinal area is killing me awful
with pain. I have a eye Dr. appt. this week.
Sorry this is such a depressing message. God Bless, Sue.

Thanks Maureen about the suggestion of the pain patch. I see the Dr
on Dec 8th. and might ask him about that. I talked to my pharmacist
yesterday about the pre mixed enbrel and he said a couple more weeks.
You need to get re-approved for it, they just don't change the
prescription. He said to make sure and talk to Dr to get the approval
before you need more.
You are right. There are some areas on the thigh that hurt with the
injection and other areas that I don't even realize the needle is in
my leg. I once hit a vein and it swelled and bled like crazy. At
first I thought it was a reaction to enbrel but the nurse said that I
just hit a vein and not to go back near that area again. I find the
shots much easier in the stomach.
I also think the "frozen peas" idea is priceless. I can't remember
you posted it, but it was very helpful advice.
Hope you have a good day
Pat

Hi Fran,
I would love the website, i don't take any extra supplements except
for folic acid because there is so much on the market, it cofuses me.
I would like to try the magnesium. It still amazes me that pain
affects so many different parts of the body. I feel as though I did a
full aerobic workout and all I did was walk a little. I just wish it
shaped my body like an aerobic workout :).
Thanks Pat

Thanks Lynda! After the past 2 months I'd take anything that wasn't painful.
Cyndi2pak@... wrote:
Laurie, living outside Rochester, NY....almost...I said almost 50.
Laurie-
Don't worry too much about turning 50. I did it in May and it is "almost . .
.I said almost" painless! (LOL)
Blessings and Peace,
Lynda (in Ohio)

I had my big toenails removed after they started curling down into my nail
beds. For about six months afterwards, my young son would warn anyone who
came into our house, "Don't get anywhere near my mom, her toes hurt!"
I almost knocked a co-worker down the stairs as I was coming around the
hallway and she was coming up the stairs--because I thought she might step
on my toes.
Life is much better now--but is was "survival mode" in those days.
Ks Di

Hi Cat,
When we've taken unofficial polls on this board it seems stress can
affect the pa and the p but not always the same in everyone and not
always at the time of the stressful event(s). A flare can come some
time after experiencing a stressor. I noticed our last newsletter had
an article about stress and MS: you can substitue psoriasis and
psoriatic arthritis for MS and read the article.
Can we help with any of the language or abbreviations we use?
MTX= methotrexate
p=psoriasis
pa=psoristic arthritis
fibro=fibromyalgia
SI=sacroilliac joints
anything else?
best,
Marti

Buddha statue..Karma...VERY funny!! but still painful!
I have steel toed boots, but I don't usually wear them in the house LOL
I used to have a pair of Birkeys, wore a hole right through the sole, I did!
Crystal

PHEW! I'm glad that's "all" it was. And, being overweight myself (but
LOSING!!!), I was aghast one time to read my doctor's write up on one
of my disability insurance forms about how my "fatty liver" prevented
her from prescribing certain meds. Ewwwuuuu that hurt!!! Made me feel
guilty or something!

Dear Maureen, I'm glad you have a doctor that understands that fibromyalgia
can need narcotic medication to control the pain. I've run across so many
doctors and people who just deny the whole problem and the whole disease.
My daughter who has fibro really bad takes Vicoden for her pain and I wonder
if the patches would work better for her. I know when I took Vicoden I had
awful highs and lows with it. I'm on a time released 12 hour morphine pill
now that keeps me even and I never have the lows or highs anymore.
Sometimes I even forget to take it. I"m so glad you finally found something
to help you. Thanks for sharing that and I'm going to pass it on to her
ASAP. Thanks again, Fran

Hi,
I've been following an "alkaline" diet for the last several months.
The ONLY grain that is alkaline is millet. But when I bake with it
things come out dry-ish and crumbly. Do either of you have any hints
for baking with millet flour?
THANKS!!
Christine Tsan

Hi all,
Ok, i'm going to add my few bits here...
i was a very active member of this group last year and then lapsed -
death in the family, etc. etc. but Marti, bless her heart, brought me
back on a week ago and it's like a lifeline has been cast out to
me....
when i read "the post" i was aghast at the venom it contained, but
only read and absorbed, and didn't comment (which is so unlike me -
lol!) because i did not feel it was my place to comment.
i read message after message supporting fran's take on the issue so i
decided to look back, and learn abit about this brenda/bjorn. i went
through close to 1000 messages, searching out posts from and
regarding her. every one of hers was self-centered, full of self-
pity, and frankly, i believe i am a very caring person but it was
enough to tax the patience of a saint.... every, and i mean EVERY
response to this individual was supportive - most of all dear fran
who has put herself out in support of each and every one of us time
and time again.
mary's post a few back spoke of us all being strangers, but are we
really? we might not know each other, per se, in the physical sense,
but i don't know about the rest of you, but this board is a place
where i feel safe - safe to bare my soul because we are all the
same. it doesn't matter if we are young, old, male, female, white,
black, yellow, or red, we all suffer from this asidious disease
called pa. we didn't ask for it, it found us. but we are strong and
we keep strong by supporting each other and sharing. so be that as
it may that we are strangers, we are in fact a family, sharing
together. brenda/bjorn threatened us. we have little enough energy
as it is, yet caring people worried about her - which of course
caused stress - and this happened because the group cared. that care
was violated by a very caustic and sick individual.
i wish to thank one and all for all the love, caring, sharing and
hugs we all give out and receive. where would we be without each
other?
God bless, each and every one,
love, karen

Hi all -
Just a thought, but I have found a way of finding a less painful place
before injecting my Enbrel in my thigh. I rub, rather strongly several areas
on my thigh with the alcohol patch that comes with the kit. There are
definitely some areas that are much more sensitive to the pain of the stick
and by doing that, I almost always find a place that I cannot even feel the
needle as it goes in. I know it sounds crazy, but it really does work!
On the same vein (no pun intended) isn't it great news that Enbrel is
finally coming out with a pre-mixed once a week dose! I hope it becomes
available here in Tennessee soon.
For those with Fibro, after going through probably 15 different meds to take
the pain and flu like symptoms away, my doctor and I have finally found one.
I wear a Durgesic Patch 50 mg. I tried 24 mg and it didn't do much. This way
I'm not continually popping pain pills and just change the patch once every
3 days. It is Fentynl and yes, it is a narcotic, but I have gone off the
patch several times for short periods and have had no withdrawl effects
other than the pain gradually coming back. Just a thought in case you are at
the end of your rope with the Fibro pain.
Best of all of life's good things to you,
Maureen

Mary:
I had to giggle a little when I read your post. No disrespect, but it
reminded me of a time when my 16 year old son's friend (who they all call
'Quido') came down with cancer of the liver and needed a transplant. My mom
(gramma) was talking to my son one day trying to reassure him about his
friend. My mom being the devote Catholic that she was said that she would
pray for his friend. A couple of days later, my son calls my mom and says
to her that he figured he better tell her his friend's real name (which was
Jason) so when she prayed for him God would fix the right person. He was
worried that some person in Puerto Rico would be getting better and he
wouldn't know why. I guess the reason I found your post a little humorous
was that whether or not Brenda really existed, someone out there named
Brenda was reaping the benefits of your added prayers. Maybe no prayer go
unanswered, but no prayer is wasted. Jo Ellen

hi, I have also had the "fatty liver" dx from my Dr. I had an ultrasound, and
extra tests etc. The problem is that in rare cases, it can turn to
cirrohsis..the non alcholic kind. This is as I stated RARE!!! very rare. One
thing I did was to start taking Milk Thistle. This is an herb, and according to
Europeans.....it is the Liver toxification to end all be all!!! I talked to my
Pharmacy, they say it does not contraindicate with any other drug. I of course,
can't tell you this is the way to go...I can only tell you it has worked for me
and gone a long long way in lowering my liver enzymes.
good luck
annie and the pugherd

Ouch! Been there, too, a couple of times. My "first
time", I stubbed my toe on a concrete Buddha statue.
(How's that for karma?)
I wear my Birkenstocks (clogs or sandals) almost all
the time now. I call them my "steel-toed clown shoes"
-- the front of the toe bed sticks far enough forward
of my toes to protect them from most of my clumsiness.
Keep your feet up and hang in there!
-- Allison
=====

Thanks Cheri, that means a lot to me and I know it does to Kathy as well.
It's nice to know that people support you and what you are trying to do.
Take care of yourself and keep in touch. Love, Fran

Pat, I sure do have sore muscles and I usually blame it on an altered gait. My
thighs get really sore as do my calves. Of course you probably should talk to
your doctor because I have recently learned that cholesterol lowering statins
can cause the same kind of problem. But, back to your question, I do think that
an altered gait causes problems all the way up to my neck. I just bought a pair
of Brooks walking shoes and it is amazing how it has corrected my gait and eased
my walking pain but I can sure feel it in other areas. I suppose I will have a
lot of discomfort until all my muscles adjust, if they will.
Good luck, Cheri
pfried520 <Pfried520@...
Hi Everyone,
Just curious if anyone else experiences this. My left knee is very
painful and my gait is not right. Now my calf muscles especially in
the left leg are killing me. Do the muscles get affected because I am
trying to compensate for the knee pain? I am limping alot more these
days but am trying to walk a little more also so I don't stiffen up
so much.
Thanks
Pat

There is no doubt that stress causes onset of symptoms and increases ones
that already exist. My last three years of major PA started six weeks after
my father was diagnosed with pancreatic cancer. The minor episodes before
that were: pregnancy, thyroid cancer, etc.
The problem is--stress is hard to relieve. I couldn't just not worry about
my dad or extended family. I love my teaching profession. I already had
three children when I was diagnosed: "Sorry kids, turns out it just isn't
going to work out to be a mom after all" :)
What can be done is to find ways to live the same life with less stress:
yoga or meditation, counseling, making "you" time a priority.
Ks Di

Hi Everyone,
Just curious if anyone else experiences this. My left knee is very
painful and my gait is not right. Now my calf muscles especially in
the left leg are killing me. Do the muscles get affected because I am
trying to compensate for the knee pain? I am limping alot more these
days but am trying to walk a little more also so I don't stiffen up
so much.
Thanks
Pat

Hi, I try to read all the posts and by the time I do that, I don't
have time or energy to post! LOL.
How many of us has involvement of the sacroiliac joints? My left
one is my main problem right now!
Meds I am on now:
Azulfidine (arthritis) - helps pretty well
Avandia (diabetes)
Propoxyphene (pain) works good so far
Skelaxin (muscle relaxant)works good so far
Activella - (hormones) - yup I'm an old menopausal lady! LOL
Folic Acid - (am about to start MX)
Singulair - (asthma) - works good
Combivent - (asthma) - works good
Uniretic - (blood pressure) Just diagnosed, just been on it 4 days
Urispas - (bladder spasms) works great
Nexium - (reflux) works great
Drugs I am about to start:
Methotrexate - (arthritis)
Remicade - (arthritis) (or is it Remicaid?)
Synthroid - Hypothyroidism (just diagnosed)
I am a walking pharmacy! All these drug cannot be good for a body!
This is a great group! Thanks for being there. If I can help
anyone in any way just let me know!

Ladies! You are both priceless and I hope you can keep on keeping us informed.
I don't reply very much to what either of you say because you both say it so
well I don't feel there is anything I can add. So, occasionally, I feel the
need to let you know how much I value you. So please take my silence on some of
the subjects as confirmation that I, at least, feel you covered the subject with
your usual gem-like quality. I'm with you in spirit and any other way that
really counts. Most Sincerely, Cheri :-))

In a message dated 11/19/2004 5:51:40 AM Eastern Standard Time,
heatherfitz@... writes:
How desperate do you have to be to steal
medication from someone who is sick???
Hi Heather,
I am so sorry that you have to go through this at a time when stress
unfortunately aggravates our illness. I would be very angry also when someone
who
probably knows of your situation and knows you need this medication still
steals it. Just remember that what they sow they shall reap and they will pay
for their actions.
Janet

Hi Linda: I haven't had this particular procedure -- it is
relatively new. The procedures I have had were the more "tried &
true" that've been around for years and years.
The SPARC procedure is minimally-invasive and about as stress-free as
a surgical procedure can get. It can be done using light sedation,
epidural (or spinal), or -- if you of your surgeon prefer -- general
anesthesia. Doesn't even require incisions -- the sling is placed
using needles. Wouldn't even require an overnight hospital stay
(barring complications, of course).
MY concern would be the foreign material that comprises the sling,
that being polypropelene. I have a pelvis full of cadaveric fascia,
mesh, suture material, and screws and am terribly concerned since
I've begun reading up on PA. A patient with a chronic, inflammatory
disorder that affects the connective tissue may not be the best
candidate for placement of such materials. There is ALWAYS a risk --
even for a "normal," healthy patient -- of
rejection/erosion/infection. I do not yet know what the
ramifications of any of this might be, but it's certainly something
that I intend to cover thoroughly with the rheumatologist, once I get
in there. I'm really, really concerned about this -- my own tissue
is so weak (it was discovered intraoperatively that I don't even
form "normal" scar tissue) that if the mesh were removed, my pelvic
organs would be seeing daylight again. I cannot even bear the
thought!
Just food for thought; at the very least, probably something for you
to discuss with your doctor.
Warmly,
Cat

Laurie, living outside Rochester, NY....almost...I said almost 50.
Laurie-
Don't worry too much about turning 50. I did it in May and it is "almost . .
.I said almost" painless! (LOL)
Blessings and Peace,
Lynda (in Ohio)

Hi all: I've noticed in several of the posts comments being made
about stress exacerbating PA. Can someone explain this?? Does it
worsen psoriasis ... or joint involvement, also?? I'm just so
ignorant about all of this and I apologize for endless questions. Am
trying to learn all I can merely by reading your posts but -- and
this is not a criticism; merely an observation -- it seems almost as
if a language unique to experienced sufferers is spoken that I just
don't yet "get."
I do have a very high-stress lifestyle ... is this something one
should seriously take a look at and consider changing?? I mean, can
it make the difference between good health, or bad?? It sounds
almost as if PA is a bit like lupus in that it may flare, at times,
while at other times, one might experience a remission. Is this
true?? (Am finding it a bit curious that one week after first
hearing the words, "PA," I've developed conjunctivitis again ...
haven't had it since January ... stress, indeed!)
Warmly,
Cat the PA Dunce

In a message dated 11/18/2004 1:04:08 PM Eastern Standard Time,
catwright@... writes:
I co-manage/moderate a support website for women with POP,
and am presently working towards an RN degree.
Hi Cat,
More power to you. I was so close to my RN degree and this nasty illness
took toll of me. I dropped out of nursing school with 2 semesters to go. I
then took some online nursing classes and came so close but not the brain fog
is so bad that I stopped completely and lost all interest.. I also know I
could never be on my feet nursing any longer. All I can say is if you can do
it, then go for it.
Janet

denise,
welcome! welcome! welcome! if support, understanding, shoulders to
cry on, information to glean, hugs to receive, are what you are
looking for, my oh my, you have come to just the right place. i
think i probably speak for the majority - if not all of us - when i
say that this board is what keeps us sane sometimes and is definitely
MY lifeline.
i look very much forward to getting to know you - and from one who
writes books :( - yours wasn't too long at all! lol!
again, welcome,
karen

Dear Group,
Brenda/Bjorn (one and the same) has been banned from this group. She has a
sickness that has nothing to do with this group and needs that we cannot fill.
For those who pray, please ask that she be given help for her emotional illness.
Kathy F.

Bjorn, I really don't see how you can say no one cares. I went back
thru the messages and found many. I did notice there was 2 weeks
between the updates. I am sure there was many people wondering what
happened. We read a message from you mother about being in the
hospital waiting for an operation and being so depressed. We were
left to wonder what happened. Then we get your update. I was glad to
hear from you, just to know that your Mom was alive. I am sure you
and your family are busy. But a line of any kind of news to let
people know how Brenda is doing would have been nice. I also think
you should know people don't always respond to every email. It is
not that people do not think about others. I read every email that
comes in and I tell myself I will go back and write something in
response and more email comes and I keep reading, but when it comes
time for me to talk to God, I ask him to take take of everyone I
have read about that day. Sometimes I name them by name and
sometimes I don't but he knows who I am talking about. You and your
mother have been in those prayers. I wish you and your well.
Elaine

Dear Linda, thanks for the support. I just reached the end of my rope on
that one...lol. Have a great day. Love, Fran

Heather, I immediately passed your e-mail message onto my daughter. She is a
drug sales person for Pfizer in their animal health division. Her van
advertises her product on the side and she makes jokes about "selling drugs"
when people ask what she does for a living. I have told her repeatedly, to keep
it quiet, and worry constantly about this very issue. When drug dependent
people are seeking drugs, they do not care what kind of drugs....they just steal
them. So thank you for your vent message and I hope it instills in my daughter
more caution.
Linda in Poulsbo, Wa.

As usual Fran...very, very well said. Thank you.
Linda in Poulsbo, Wa.
Dear Brenda or Bjorn,
I find it very interesting that you and your Mom are so much alike. You
write like her, you spell like her, and you blame other people for your
problems like her. First of all, this group has gone out of their way to
worry and care about your mother. WE all still do hope she is better and
getting better each day. No one has ever accused me of not being
compassionate for someone's pain or problems. I always do my best to reach
out to everyone I can. I do have problems when people expect more than they
give or constantly criticize other people when they need to look into
themselves to find the answers to their problems.
Both you and your mother, when she is "healthy" enough, need to talk to a
counselor or a psychiatrist about not getting your personal needs met. It's
obvious you both expect more from this support group than we can give. As
far as I know, since I've joined this group, you are the only one to
complain about us not caring enough. I think it's time to stop the games
and take care of your own personal problems.
I am very sorry for you. I think anyone who has to go to this extreme to
get attention has problems larger than PA. I wish you the best Brenda or
Bjorn, which ever one of you wrote today. IF I'm wrong on this subject I
apologize, but I feel like you have been playing head games with our group
for long enough. Since we can't obviously satisfy you or met your needs,
get some emotional help as soon as possible. Hopefully, then you won't feel
the need to write these kind of letters anymore. They can't make you feel
good about yourself or your mother, what ever the case may be. Hopefully,
with help and time the future will be brighter for both of you, if that
truly is the case. For what it's worth, this is only my opinion and I
can't speak for the entire group.
Sincerely, Fran

kathy,
how simply wonderful is your message... and you are so so right. if
we ask about each other's personal lives it is only to get to know
each other better.... because we care and support each other.
bless you kathy for stating the obvious - although it took your post
to so eloquently put it into words. perhaps we should ask some
leaders of this world to visit.... ;)
karen

To everyone who so kindly wrote me about the ultra sound on my liver...yeah. It
is just a "fatty liver" and no permanent damage. Thank you again to everyone on
this list for your support. Linda in Poulsbo, Wa.
P.S. I am going to look up "fatty liver" on the internet and find out more
about it! Being a bit overweight, the whole sound of "fatty" anything is rather
awful!

In a message dated 11/18/2004 12:54:06 PM Eastern Standard Time,
fran@... writes:
I try and stretch it out as
much as I can because it feels like the muscles are getting used to that
position and don't want to move. I don't know if it means the disease is
progressing or not. All I know is it hurts. I have it to some degree on my
toes as well. I wish I could be more help.
HI Fran,
I hope you are feeling better from the injections you have had. I am also
getting the muscles in my toes curling up. I think it may be due to the
fibro, How has the Arava been helping you? Sorry I don't write long posts
but
my attention span stinks lately.
Janet

Thanks Pat for support us. It had just gone on too long and I hope it's
over. I hated to do it, but I didn't think we were "helping" who ever it
was that was writing at all, by buying into the game. I really do hope she
gets some help and realizes she doesn't need to do this sort of thing to
get our attention. Thanks again, Fran

Hello to everyone. I've been lurking off and on for a week or two
and decided to jump in and introduce myself and offer thanks to
everyone - your postings have been so comforting to read and provide
a incredibly comforting perspective that someone living with PA
needs!
I am 44 years old, living with P since I was 7. The P was bad until
my teens and subsided to a minimum.Wasn't diagnosed with PA until
five years ago when the P attacked my hands and feet and I started
complaining of joint pain. Finally a new primary referred me to a
rheumatologist who was well versed in PA. In hindsight I probably
had PA since my 20's, triggered by a car accident/back trauma. For
years I was being treated for torn muscles, etc. Now that I am in
the hands of a great Rheumatologist I feel much more in control of
my life - but a life that had to radically change! A huge flare of
my feet put me in a wheelchair for about two months and I was told I
had to seriously think of giving up my teaching position (computer
teacher standing all day!) and various other volunteer activities -
definitely a type A, driven personality - needing 'to mother'
everyone and everything, except myself. Hard to do but I in the past
five years I've resigned from teaching, set up a Virtual Assistant
practice from home (easier to work with all the PA related setbacks
that occur!) I was diagnosed with Fibromyalgia as well. The good
side is I have an incredible husband to support me through all this!
As for the posting on meds - here we go:
Relafen - anti-inflammatory
Methotrexate
Prilosec - stomach problems caused by steroids, etc.
Ultracet - pain
Sonata - to get to sleep (fibro)
Zanaflex - to stay asleep (fibro)
My rheumy wants me to move onto Enbrel as my joint involvement is
getting worse but I am exploring Dr. Weil's alternative therapies
until the New Year to see if they make a difference. If not, it's
Enbrel in January.
My apologies for the long posting - that's what I get for not
posting before!! Lastly I want to thank all here for your posts -
they have helped to clear my mind and reassure me that I'm not
alone. I hope to be able to do the same in the future!
Denise
Blue Bell, PA

Geez...I can't believe I was complaining about nail filing...today I kicked
my roommates booted foot with my bad toe while we were in the kitchen...holy
MOLY! I sat in my room and cried for a few minutes cause it hurt so much. He
didn't even feel me kick him at all.
I'm thinking of getting a pair of steel toed slippers...
This disease brings a whole new meaning to 'stubbing your toe'. I thought it
hurt before..wow..
Makes me glad I work a sit down job today.
love Crystal

A good message board is one where the members feel connected in a positive
and affirming way and all of you have helped to create that environment. We
would be lost without you, too!
Wishing you wellness,
Kathy F.
In a message dated 11/19/2004 5:43:51 PM Eastern Standard Time,
Pfried520@... writes:
Fran and Kathy,
Fran: I couldn't of said it better my self and totally agree with
Kathy when she said what a caring person you are. Something isn't
right here, and I too hope Brenda/Bjorn find get the help they need.
Kathy: you are so right that everyone on this group is so supportive
and non judgemental. This is a wonderful group and I would be lost
without you all.
Pat

You have hit on something very significant, Karen. If we were to survey
this board, I bet we would discover that we are black, white, Asian, Arabian,
Hispanic, Christian, Muslim, Hindu, Jew, European, African, Middle Eastern,
North and South American, old, young, gay, straight, married, single, chubby,
thin, male, female and NOT ONE of those differences matters here because we are
united in a desire to help one another. We ask not what each other is - we
ask what each other needs. What a gift it would be if our leaders could find
their ways to this simple path.
Kathy F.
In a message dated 11/19/2004 5:44:57 PM Eastern Standard Time,
missionblondie@... writes:
we are all in this together - one group of people from every walk of
life, from all over the world who share the trials and tribulations
of this odious disease together and it is very uplifting and
empowering - to me in any event.
take care, cat, and write soon on how you are managing,
i'll be thinking of you....
karen

Fran and Kathy,
Fran: I couldn't of said it better my self and totally agree with
Kathy when she said what a caring person you are. Something isn't
right here, and I too hope Brenda/Bjorn find get the help they need.
Kathy: you are so right that everyone on this group is so supportive
and non judgemental. This is a wonderful group and I would be lost
without you all.
Pat

cat (sorry - lower case rules today... :)
the verse is lovely and made me immediately think of this board -
imagine how warm we would all be if we were all lying there
together....
i too was the superwoman - i did it all - and yes, i have raged and
raged at how my body has let me down and sabotaged me - but i
positively refuse to let it take away my spirit.... it is, of
course, our most important asset.....
we are all in this together - one group of people from every walk of
life, from all over the world who share the trials and tribulations
of this odious disease together and it is very uplifting and
empowering - to me in any event.
take care, cat, and write soon on how you are managing,
i'll be thinking of you....
karen

Awww, thank you, Karen. As a former "tough, independent-type," I've
learned (the hard way, as usual) just how much I DO need the help of
others. It's humbling when one has been accustomed to being the
STRONG ONE -- the one that everyone else turns to ... the one that
carries the burdens and solves the problems -- to realize what a
needy little heap you really are! It is a wondrous thing to me how
people genuinely do have such power to bless the life of another, and
it usually requires very little effort, truly.
Funny thing, but I've had to deal with a whopping amount of anger at
my own flesh. I'm sure everyone here can understand what it is to
feel betrayed by your body. It is frustrating as hell to have a
strong, vibrant spirit held hostage by a body that does not
cooperate.
Apologies for getting too preachy, but a favorite verse(s):
"Two are better than one,
because they have a good reward for their labor.
For if they fall, one will lift up his companion.
But woe to him who is alone when he falls,
For he has no one to help him up.
Again, if two lie down together,
they will keep warm;
But how can one be warm alone?
Though one may be overpowered by another, two can withstand him.
And a threefold cord is not quickly broken."
Ecclesiastes 4:9-12
Warmly,
Cat

Dear Lakethundermom,
may the earth open up and swallow me whole if i ever complain
again.... my oh my you have been through so much... and yes, i
understand the feeling of 'aloneness' you expressed - i always use
imagery and have so often felt like i was alone on an island... this
board is a godsend - i always feel all these warm hugs all around me
whenever i come on line.
... sorry for the lower case today - me ol' fingers and wrists...
well, we all know, don't we :)!
Karen

Thanks Kathy for always knowing just what to say. Love, Fran

Hi everyone!! I was just writing because I am all of a sudden in
terrible pain! For a while now, a good month or so, I have been
feeling pretty pain free..on a scale of 1-10, maybe a 3 or 4... But
this past weekend, I am at about an 8 1/2 right now. My elbows are
just killing me--along with my shoulders, wrists, fingers and
knees... I have also noticed that my scalp is just TERRIBLE! It has
become really thick, and scaly.
Is this a sign for me to get prepared for a flare up, when my scalp
starts to get realy bad?
I am tkaing 4-5 tylenol arthritis at a time, plus my vioxx and it
isnt helping right now...I'm not sure what else to do to make the
pain at least ease up....I have a call into my doc, so I will hear
tomorrow..but, man...it is pretty bad!
Thankfully the pain in my sacoryliac isnt bad right now..but
everything else is just killing me...
Any input would be great. If it does coincide, then I will be sure
to note the severity of my scalp and maybe prepare as I feel it
getting worse.
Thanks!
Dawn

Gloria,
What's your vitamin D level ?
What's your PTH level before treatment?

Arthritis Support

-Hi Tracy,
the 2 hand surgeons I saw did not recommend joint replacements. They
said they just didn't have good enough results with the smaller
joints as with a knee or hip. They were both conservative type docs.
I have met 2 people who had finger joints replaced, both with RA.
One was very happy some 20 years later and the other was unhappy as
her fingers returned to their disabled use in several months.
I know you always make good decisions for yourself and pick top notch
docs. I am very interested in following what you decide and how it
all turns out for you!!
good Luck!!
Best,
Marti

--- just wanted to stir up the think
You accomplished that. I understand much better now. You explain
things well. I was curious because when I was at Mayo I asked the pa
specialist if he saw any future for us in stem cell transplants and
he said NO. When I read the article Michael provided for us it
caught my interest. Thanks for your explanation. Good to have you
back. :)
Marti

fyi--Humira is on this list.
LeAnn & furbrats Blossom & Meriko who are no mail for a while.

Just wanted to let everyone know that I spoke to my cardiologist's office
today. I go there due to a problem with high lipids and do not have heart
problems. They told me to quit the Vioxx and he called in a prescription to
the
pharmacy for Bextra. I think I tried it once and it was not as good as the
Vioxx but I will try again. I also put in a call to my rhuemy and I am
waiting to hear from him as well. I would like several opinions but right now
I
don't think I am going to take the Vioxx.
Janet

Dear Marcus, thanks for the info and the email. At this point I'm willing
to try anything. I just had another cortisone injection in my knee last
week and it is hurting already. I think mine is due to water on the joint,
but my doctor thinks it's more osteo related. I think it's PA related since
it happens when everything else flares up as well. So I will buy your
medication and I'll be sure and let you know if it helps. How long was it
before your Mother noticed some improvement in her condition?
It's a really hard condition to get rid of since it kills you to exercise,
and it's hard to lose weight when you can't move. Plus I've been on
prednisone for almost 3 years now and that of course has added weight I
didn't need to deal with. So I can sure understand her situation.
Your back and disc problem sounds so miserable. I have lumbar disc disease
and then a compressed disc in my upper neck area. Both of them drive me
crazy from time to time. My main problem is bone spurs. I seem to attract
them like crazy. I also have a bad bone spur in my knee joint which I know
only adds to my pain.
I've got a swimming pool in my back yard and haven't been able to swim all
year. My problem has been the heat. I also have a condition called
Erythromelalgia where my skin turns red and burns like crazy. Even in the
cool water, which feels so good on my joints, my skin starts turning red and
burning. I should swim at night but I have been too fatigued until just
lately. I've started Arava about 5 weeks ago and it has really increased my
energy level. I have problems sleeping with it though, so someday I'm up
all night and sleep all day.
Anyway, I'll order it and give it a try. You are right on Pain Buster
2...lol It does just help the muscles. Take care and I hope your back is
better soon. Love, Fran

June, sorry you are having such a difficult time. I don't know about the
measles, mine started after a really bad fall. I lost a lot of hair when I
first took arava, then it started to grow back, I quit taking arava (had a
bit of a rebellion) and when I started on it again my hair fell out all over
again. I too got sick Saturday morning, may phone the doc. Why does all
this happen on holiday weekends. I hope you feel better soon. Cheri

Thank you for posting this, I'm making a copy right now. Maybe my
family will understand, what I've tried to explain for the longest
time......................Carl

Just a short contribution about pedicures - I too was very embarrased
at first but since I started having them a couple of years ago - I
haven't lost any toenails (the psoriasis under the nails used to mean
that I frequently lost nails which was quite painful) and he seems to
be able to scrape out a lot of the dead skin which minimises the
discomfort.. My nails are also very strong - sometimes I think he
almost needs a chainsaw to cut them but he is a lovely round
Argentinian who just laughs at my malformed toes and nails.
So I agree with Cheri - Just think of it like a trip to the dentist
except it doesn't hurt half as much and the results are almost as
good.
Sue from Aus

Hi A. I live in Canada and our drugs are the same as your's,just the
price is very different.If you are considering buying from here I think
you should check the bulletin board at www.roadback.org It seems U.S.
customs is seizing meds at the border.Lynne

Hi, Why do I feel worse on the day of taking minocin?
I feelbetter the next day.
Does anyone else have the same experience?
Thanks. Nan
--- Dee Levine <ljdsll@...

Hello,
My 16 year old daughter has recently been diagnosed with limided
systemic sclerosis, Scleroderma. I stumbled upon the information about
the Antibiotic Protocol and would like more information on the most
current use of this treatment. Any infomation will be greatly
appriciated.
Cheryl

I switched to Celebrex because of the recent studies. The Wall Street
Journal had a article that said Kaiser may stop precribing the drug.
As far as I know I don't have any heart problems.

Hi Mary,
Are you on the AP? I don't know if it was the minocin or the herxeimer but I
experienced some periods of oversensitivity and crying. I found that having my
best friend to "vent" to really helped a lot and kept me sane. If he wasn't
around I wrote everything down that was stressing me out and then ripped it up
and threw it out. It helped. I found Judith Orfloff's book Positive Energy
helpful as well. Good luck and hang in there! These periods seem to come and
go...
Emma

Hi Tam,
I am a 43 year old male. I was diagnosed with PA 3years ago after 1-2
years of pain and various other reasons for it(bad knee, lose weight,
not enough excercise). After being diagnosed, I went 6-9 months
trying various NSAIDs that my Rheumatologist prescribed. Most had
little to no effect, none worked. My rheumy & I agreed to try MTX.
I started a 10mg a week and within 2-4 weeks, most pain was GONE,
slowly my sausage fingers and toes returned to normal, and by week 6-
8 was normal. I never had side effects, still don't. It's now, 2.5 -
2.75 years at 10mg and I have had few flares of stiffness or pain,
but they usually are brought on by my overdoing it, or at times of
stress. And they last only a day or two. I may need to up my
dosage at some time, but not likely for now.
There are a few negatives, NO alcohol. bi-monthly blood testing. And
I likely will need to have a liver biopsy in the next 12-18 months.
There is no question that I made the right decision for me. I went
from constant pain, several sausage digits, barely able to walk, to
99% Normal.
Stay Well,
David

Dear Sandy, I think Kathy said it all in your recent email. The only
suggestion I have is, if you can't afford to fly first class, and who can?
You can always ask to sit behind the first class section near the exit
doors. Normally there is extra leg room there and you don't have someone
crowding you in front. It's great if you have to stretch your legs. The
seats aren't always available, but it's worth trying to get them. Good
luck. I hope you have a great trip. Love, Fran

Hi Tracy,
That's interesting. I didn't even know they could replace finger joints. I
have three candidates for that operation. (Two on the left hand. One on the
right)
Thanks,
Martin

Hey, welcome. My name is Leanne, I'm a mum of 4 in Australia. My
eldest, Owen (14y.o.) has aggressive PA. Go ahead and be depressed,
you now have a cyber community who'll support and understand you.
You children sound wonderful. As you've discovered, they can be
far wiser than most adults. And you're right, it's very hard for
others to understand, but we're all here for you.
You're in my thoughts, I hope you have a good day.
Leanne

Hi Sandy -
Fran did you some good advice, the seats directly behind the first class
seat (called bulkhead seats) normally are not exit rows. However if the
plane that you are on it is an exit row you could be endangering yourself
and the other passengers by sitting there - especially the window seat. I
worked in the airlines for years and the exit row door is not that easy to
open - especially when you and everyone else is in a panic. You might want
to ask the person who checks you in which row would be most comfortable for
you. Who knows, if you are really nice - they may give you a complementary
upgrade to first class, which I did to many people in out situation.
Don't sit in the row directly in front of an exit row either. You can't
recline those seats and that might be uncomfortable.
I would call the airline first and see what kind of seats they have. They
can pull up the aircraft seat configuration is and go from there. If you
think you are speaking to someone inexperienced. don't be afraid to ask for
a supervisor.
Take are and I hope you have a safe trip.
Maureen from Tennessee

You mentioned that it is possible to do some yoga positions even if bed bound.
Are there DVD's or a paperback to follow?
TIA
Denise
Pray the Rosary

-Hi all,
I went to a flu shot clinic last Friday. We arrived 45 minutes early
and there were already about 40 people in line. I stood for a few
minutes and could see that I wasn't going to make it so I asked the
manager if I could sit. At first he said yes , then looked at me and
said no..he couldn't provide chairs for all. I decided to get a
wheelchair and was limping thruough the store to get one when a young
worker called to me and brought a chair over. I was embarrased. By
this time there were some 200 people in line..almost all of them in
their 80s. The friend I was with is 89. I was the only one sitting. a
nurse walked up the line weeding people who were not 65 or over out.
I looked at her, held up my hands, and said..."taking enbrel" She
said...oh please stay an get a shot. So, I got mine. As Kathy
pointed out it is importat to check with your docs. Mine had said
they wuld give me one but by the time I called they had halted all
flu vaccines and given them to the clinics.
Hope everyone can find one who wantsone,
Marti

-hi Karen,
Thanks for sharing your poem. I was very moved by it :)
Best,
Marti

Dear Denise,
Were you taking immune suppressing drugs when you got cellulitis? I know my
brother is taking methotrexate and interferonB and prednisone. I am wondering
if drugs like methotrexate and remicade make one more susceptible to cellulitis.
Thank you,
Gloria

Denise,
I got Carol Dickman's "Bed Top Yoga"audio tape long ago.. I think she has
one for chair yoga, too,. Check out
http://www.stretch.com/bedtop.htm
http://www.stretch.com/
I hope this helps,
Ute

With Vioxx being pulled from the market, I'm thinking about
switching to Enbrel. Can anyone please reply with some good (and
bad) stories to offer, I would appreciate it. I'm currently taking
20mg of MTX along with Folic Acid and 25mg of Vioxx along with x-
strength tylenol overnight. My P is not bad, but my A has gotten
worse over the last 2yrs. My rheumy also has mentioned that I have
developed Anklyosing Spond...? in my middle back. But it is strange
in that these usually only the upper and lower are effected.
Anyway, just wanting to see if Enbrel is as good as advertised and
might be able to help everything. Thanks.

Martin,
It would have toadily freaked me out - I'd a croaked! OK, not true, I
amphibian just a little.
Kathy

I have started to take Enbrel and have been on it for about 1month. I have been
feeling great from my Psoriatic Arthiritis, but I am still on Prednizone
probably for another month. But everthing has been good except for water
retention. I will keep you posted.
mschoedel99 <mschoedel99@...
With Vioxx being pulled from the market, I'm thinking about
switching to Enbrel. Can anyone please reply with some good (and
bad) stories to offer, I would appreciate it. I'm currently taking
20mg of MTX along with Folic Acid and 25mg of Vioxx along with x-
strength tylenol overnight. My P is not bad, but my A has gotten
worse over the last 2yrs. My rheumy also has mentioned that I have
developed Anklyosing Spond...? in my middle back. But it is strange
in that these usually only the upper and lower are effected.
Anyway, just wanting to see if Enbrel is as good as advertised and
might be able to help everything. Thanks.

Cyclophosphamide (Cytoxan) is a drug used to treat various cancers. It is
not an antibiotic.

In a message dated 8/31/04 11:31:54 AM GMT Daylight Time,
schmoo1176@... writes:
Is this a sign for me to get prepared for a flare up, when my scalp
starts to get really bad?
Hi Dawn,
Sounds like your already in one I'm afraid. I just hope you doctor can help
you with it.
Good luck,
Martin

Hi All,
Anyone know anything about this? First of all I have got to say that
my PA has badly affected my wrists, especially the right one which
has more or less seized. (Very little movement in it at all) Last
night I was putting stuff into the garage and felt something move in
my arm. It feels like a bone has gone out of place or something. It
is painful anyway but if I am holding my arm out straight in front of
me with the palm of my hand facing down,the pain is unbearable. I had
to lie in my bed last night with my right arm resting on the pillow
and with the palm facing upwards. (Not a lot of sleep I can tell
you.) The pain starts between the finger next to the pinkie and the
middle finger and spreads up my arm to just below my elbow. I can't
hold a pen or a spoon. I am using the mouse and typing here with my
left hand. I would say It feels like a broken bone but as I have
never had a broken bone it is hard to say. Any ideas anyone?
Thanks,
Martin
[Editor's Note: Hi Martin, sorry to hear you are in such pain! It is possible
that you had a small stress fracture that finally "cracked through" and now you
have a bigger fracture. Regardless of the cause, get thee to your doctor, ASAP.
It sounds like you need an Xray right away. Please let us know what's going on
- provided it doesn't become impossible to type. In the meantime, you should
probably use the RICE method - rest, ice, compression, elevation. When I've
broken bones in my foot and elbow, it hurt like hell and I sort of knew that I
had broken bones. Kathy F.]

Our internet service will end tomorrow and I don't know when our new service
will be installed. I will send a change of address as soon as I have one. In
the mean time, don't assume we will read anything you send.
Diana

Hi all
Lynn s here from england dx with diffuse scleroderma severly in my skin and
fascittis in my legs but my organs spared, even though i do have the antiobody
for renal involvement,
I have just found put that i am gluten and cows milk sensitive, does anyone
out there think that maybe this is the cause of my scleroderma? On reflection I
moved to england from southern africa ( although i was born in england but spent
the good thirtyu years of my life in south africa and after a year of living in
London obviously there was a huge dietary change from back in southern africa
where most of our food is organic, no special imported exotic foods that have
been radiated etc to keep them fresh for months on end!!)
and KEN u in the same situation as me , in fact u lived down the road from me
He he) u also bought up in southern africa and now look at u , u developed RA
about 3 years after living in london, have u been food sensitive tested?
as they say 70% of our immune system is in our gut could this not be the
reason?
any thoughts on this any one?
Lynn S
gwen4martin <gmartin4@...
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Dear Martin and Orin, I agree that anxiety does seem to go with PA, but I
wonder how many other chronic diseases have the problems we have, at least
where it comes to anxiety. I also think we need to add a keen sense of
humor to the group personality traits..lol. Everyone seems to enjoy the
humor on the site and I think it helps make us all feel more like family.
Take care. Fran in Frogville, Florida.

Yes Denise you are right about prices being increased anytime and the
problem with not signing up when they tell you to is that for every year you
do not sign up they tack on a monetary penalty. If in 4 years they decide to
revitalize this donut hole and you did not sign up you will have to pay the
penalty. I called medicare and SSI and they told me HUMANA does not have the
donut hole. I will be signing up in the next month and I will let you know
if they lied. The company even sent a person to my house to tell me this.
I did not sign up for medicare when it was first available to me because
altho my hubby was retired we still had insurance thru his company. I was
told it was the same as still working there. Six months later his payments
went thru the roof and I called SSI to apply for medicare. They told me
since my hubby was not still working I had to pay an extra $10 a month and I
could not sign up till this month(July)for it. I called them in September.
So we have been paying a big price till now. I have learned my lesson to ask
many people the same question and NEVER trust the government workers!
One other thing...I called the insurance company my hubby had that I get my
Minocin from and asked them (this was a year ago) how much I was saving
going thru the mail order ....they said the med cost 1200 for the 3 month
supply. I paid $250!!!! Enough said.
cooky

hi,E bonnie here
I found aloe vera did wonders for my stomach & digestive problems

____I've been on Enbrel since last spring. I can't say that I have had
any CONs except taht although it was better than the remicade I was on for 4
1/2 years but now appears to have leveled off. The problem as many of us PA
people know, this disease is helped by one drug or another and then after
awhile the body recalculates itself and then the medication no longer does
the job.
I've been on mtx for at least 20 years.
You mentioned ankylosing spondylitis. I wonder if that is what my rheumy is
checking me for on Wed. I've had such awful pain in my hip area. It is
much worse on my right side but once in awhile I have that pain on the left
as well. He tells me I am maxxed out on drugs and that he wanted to see
what was happening with my joints. I have a bone density scheduled for
early Wed morning and then bone scan of hip and neck right afterwards. I
know that I will be able to go back to work for a couple of hours till the
dye circulates with drinking lots of fluids and peeing. I fell on black ice
on my work parking lot almost 2 years ago and fractured my sacrum. He said
if this doesn't tell us much, that we may get an MRI. I've never had an
mri. I just know that I hurt way too much for all the meds I take.
Nancy in Penna.

Hi folks -
New member here. Am enjoying your discussions. PA for about 6 years -
age 47. My psoriasis was mostly in remission when my arthritis symptoms
began - just an occasional small flare-up, so it wasn't obvious to
doctors. First symptom was pain in the SI joints - but my doctors just
couldn't figure out what it was. Then a sausage digit finger. No one
sent me to a rheumatologist because my SED rate was normal and I didn't
respond to PREDNISONE (which, by the way, made me VERY ANXIOUS, and I'm
told often doesn't help PA, but clearly does with some). All the doctors
understood was osteo and rheumatoid. Finally went to a hand surgeon who
assured me it was probably an infection and said there was no need to see
a rheumatologist. He felt we just needed to do surgery and biopsy to
determine the infection. Although I really did need the surgery, the
surgeon was visibly embarrassed afterwards because the tissue was
definitely a rheumatic problem - sent me immediately to a rheumatologist
who diagnosed my case in 5 minutes. (My grandfather had ankylosing
spondylitis and I was covered with psoriasis in my teens.) The x-ray of
my SI's just confirmed what she knew. Had the same surgery on one finger
of the other hand two years later. Hit me hard and fast - spine, hips,
hands, shoulders, etc.
I use vioxx, methotrexate and, most recently, remicade. Was initially
terrified of medications, but am grateful for them now. Remicade has
changed my life. Sulfasalazine caused depression and fatigue. Only
found that out when I had to get off all immune suppressants due to a
chronic sinus infection. When off the methotrexte, sulfasalazine and
remicade, I immediately experienced more damage to a finger joint. Am
glad to be back on my medications (except sulfasalazine - and now I'm
wondering about vioxx). Also actively use alternative health practices
like chiropractic, energy medicine, etc. Wheat & dairy aggravate my
psoriasis and I get a rash from tomatoes, so among other things I limit
my diet - but this is apparently not the cause of my PA. I hope that
someday I will have been able to more completely address the root cause
and be able to decrease meds - but as with us all - live with the mystery
and keep plugging along with the ups and down and all that we know and
don't know.
About FINGER JOINT REPLACEMENTS: After my second hand surgery I sold my
big old guitar and just kept my smaller one. The professional guitar
player I spoke with said he had his knuckles in one hand all replaced (I
think due to osteoarthritis) and they seemed good as new. I regularly
work with a wonderful hand therapist so I asked her about it. She told
me that with psoriatic arthritis it is very rare to do joint replacements
because of the severity of the joint damage with this kind of arthritis.
She said there's usually not enough solid bone around the joint to attach
the replacement to. As usual, however, it must depend on the individual
person and their unique symptoms. I will be curious to hear how things
go for you with this joint replacement question.
best wishes -
Kathryn

i have been on Enbrel for a little over two months now after having a total
medicine failure
and about the worst episode of pa in my life. It has been nothing short of a
mircle drug for
me (knock on wood). After one injection I could bend all of my major joints. I
still have
some trouble with my neck at this point but I am hopeful it will clear up too.
Good luck,
Tom
in alaska

My name is Tara and i have been suffering with PA, psoriasis and
Ankolysing Spondyloysis for apx 8 years. I began to show symptoms
after a debilitating case of Shingles. It is no suprise that I have
developed an autoimmune problem, my mother has had lupus for almost
40 years. There are at least 8 members of my family with autoimmune
problems and arthritis. We have traced the PA and psoriasis back at
least 3 generations.
I am currently not on any medicine except for occasional anti-
inflammatories. I try not to take much due to side effects and the
effects on the liver.
I just keep going. I try to eat right, vitamins, exercise,
meditation and positive attitude(now only if that would take care of
the pain as well). My worst problems is the AS in the spine. It is
in my entire back although all of my joints are effected. Forget
heels and dress shoes!!! I have lost alot of my strength. I am still
active although I had to give up sports.
I am wondering how many of you have other family members effected by
autoimmune disorder?
My hardest problem dealing with this is the misunderstanding that we
all look healthy not only if that reflected what we feel on the
inside!!!!!
Feel well all!!!!

Hi Marti and all!
I am going to see my regular doctor on the 8th and rheumy on 11th. I am going to
make an appt with the cardiologist my dad goes to also. However, since not
taking vioxx, I have been horible!! I cannot move my fingers and my little toes
feel like sausages about to explode!! I am so upset at this that I took a vioxx
today. I am not going to take it everyday, however when I feel i need it i am
taking it until i go on the 8th!! This is rediculous! I will let everyone know
what is up with the doc. So far I called them both and both said they are not
backing down from prescribing it, that the study is so far fetched and just
based on a small grouping. I dont know who to believe now! I am so frustrated
and I have a horrible flare going on, my scalp is terrible, my arms and legs are
gross. This is the last thing i needed!! Ah! of course..... Why me!!! the famous
or shall i say infamous saying around here?? Well it is sure great to know I am
not alone! Thanks for writing Marti!!

Hi Tara and welcome,
Before I go on, I've to say that as I read the Email each day I listen to
Planet Rock on the Internet. Guess what is on at this
moment...................................? Yes, you guessed
it............REM's Everybody
Hurts!...................You better believe it! I hear everyone say. lol
I think we should make it our theme tune!
Anyway, enough of that. Too much hilarity in this group sometimes! lol
Sorry Tara, as I was saying welcome to the group. There certainly does seem
to be a family connection. For years when I was asked did anyone, past or
present, suffer from P or/and PA, I always said no. I have just found out
recently that I have cousins on my mothers side who have P. I also have a
nephew
who has Crohn's Disease.
I know what you mean about giving up sports too. I spoke about this
recently. it is one of the hardest things about having this disease.
Half the battle though is having a positive attitude and you sound as if you
have. Hope you can get some help from the people here. It is a very good
group who can give good advice or just a shoulder to cry on if that is what you
need.
Keep in touch,
Martin

---
Hi Tara,
I also have several family members with autoimmune diseases-all on my
maternal side. My Mom had P on her forehead-I'm lucky I guess to
have it on my scalp and it is hidden, on her side almost everyone
lived only to be in their early 60's, including her.
God Bless, Sue.

Since my arthritis showed up in Jan '05, I've been less active than
normal. I already had a spinal fusion due to scoliosis when I was 16.
My back is weak from 20 years of dealing with a fused spine. Since
the arthritis in my knees and hands, I've been 'down' more than 'up'.
Recently I started having sciatic pain and then one day BOOM - my back
totally went out on me. I had severe pain for a few days. My doc
gave me a big steroid shot that took the inflamation away and got me
back to work. My question is, has anyone with RA or similar disease
had this happen? I'm not sure if it's arthritis from RA or from my
scoliosis or from being inactive this past year..... any imput is
appreciated. I'm in P.T. now.
Too young to be in this condition!!!! But too blessed to be
depressed!!!

I wanted to write and ask if anyone has experienced this symptom that my husband
is having a tough time with right now. He has an overwhelming pressure in his
body. He carries this with him everyday as do a lot of you I'm sure, but
sometimes it's so unbearable. He can't function. it makes him sick. Please if
anyone can relate to this. Let me know.

Sciatica is one hallmark of AS (ankylosing spondylitis) and you should
consider testing for the antigen--HLA B27. This is a very cyclic disease. See
if you 'FLARE' after eating some fried foods--we react badly to starches, but
fried are the worst.
A good place to start is the NSD Forum at www.kickas.org (the Main Forum is a
trainwreck).
Best to You,
John
dsaamcbee <dsmcbee1@...
Since my arthritis showed up in Jan '05, I've been less active than
normal. I already had a spinal fusion due to scoliosis when I was 16.
My back is weak from 20 years of dealing with a fused spine. Since
the arthritis in my knees and hands, I've been 'down' more than 'up'.
Recently I started having sciatic pain and then one day BOOM - my back
totally went out on me. I had severe pain for a few days. My doc
gave me a big steroid shot that took the inflamation away and got me
back to work. My question is, has anyone with RA or similar disease
had this happen? I'm not sure if it's arthritis from RA or from my
scoliosis or from being inactive this past year..... any imput is
appreciated. I'm in P.T. now.
Too young to be in this condition!!!! But too blessed to be
depressed!!!
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

Hello, I'm the mother of a 14y.o. son with PA.He only got diagnosed a
few months ago. It's ripping through him really quickly and
aggressively. My son, Owen, now has it in his lower back, that is
called Psoriatic Spondyolitis, a variation of PA (if there is a
standard). In May (this year) it was 1 toe, now it's every toe, the
balls and sides of his feet, one hip, one thumb and wrist, and now
his back. I understand the panic and distress you feel, it's
devestating when you can't help your baby, and you can see them
going 'down hill quick'.
Please keep in mind everyone here. When I first contacted the
group, I had no idea of treatments etc. now, I know more than the
average Dr. and I feel so supported by this cyber community of
wonderful, compassionate group.
We're thinking of you and your son, and it will get better.
Leanne

In a message dated 8/31/2004 7:07:15 AM Eastern Standard Time,
orinok@... writes:
also find it interesting that so many of us deal similar
problems, like allergies, sleep disorders, and asthma.
You can add stomach problems to that list. 6 years ago I ended up in the
hospital with severe diverticulitis and several months later had to have a
section of my colon removed. It was so inflamed and antibiotics would not
clear it up. I am so sure that this had to do with the PA.
Janet

Hi Rachel,
I am not too sure what you mean could you be more specific about what you
mean by pressure?