Rheumatoid Arthritis

Has anyone ever tried antibiotic therapy (such as minocin) for RA. If so, how did it work for you and are you still continuing it?

Teah [INLINE]

Hi I'm new here. Was just wondering whether anyone had any success
with taking chondroitin/glucosamine/msm joint supplements either
instead of or in addition to more conventional treatments? If so,
what has been your doctors reaction to you doing it? Did they suggest
them or do they think you're wasting your time?
Thanks
Joanna

Hello all

I am so excited I finally go to the DR. on Monday. And will begin taking some sort of DMARDS. I have researched allot of them so I can be more informed and also as I have no insurance to make sure I can afford what we agree on. I just have one question maybe someone can help me with. I was wondering if the Methotrexate Sodium is self injected or will I need to go in to the DR. office to have it injected? [LINK] Also how often is it administered? I guess that's it for now. Any replies will be greatly appreciated. Oh yea has anyone heard from Lyn lately. I hope she's ok. Well I am going to run for now. Thank you in advance for any help.

DeWanda

Please continue to support our troops. [LINK]

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[LINK]

Like Harold, I've had few side effects from MTX - used to get a mouth sore
once in a while, but that's about it. When that happened, the RD said to
skip the next week's dosage or until the sore went away. I do notice a
slowing down the day after I take the MX, but that's a good excuse to laze
around and watch TV.
Jennifer, I got a kick out of your "grieving for a nightcap". I would love
to be able to drink a glass of wine every night. I used to relax in the tub
with a glass of sherry, but no more. Of course, I can also no longer get
into a tub easily, so I guess it all balances out. :)
Jan
P.S. I hope I haven't put anyone off by my email address. Murder Most Cozy
is the name of the mystery newsletter I publish. I probably should get a
second email address that's non-mystery related.

Hello everyone,
For anyone who's used MTX, what were your first side effects like?
I had my first dose of MTX last Sunday, but didn't feel any side
effects until Monday. Of course, our weekly department meeting is
every Monday, where my lagging responses and "out of it" side
effects could have been misconstrued as a hangover. ;-)
I also had pretty bad nausea, and am hoping my next dose will be
better. I'm taking folic acid with it.
I also gotta say I really could've used a beer this week. Can people
grieve for nightcaps? :-)
Have a great weekend, everyone!
Jennifer

A couple of recent posts have related being diagnosed with Carpal
Tunnel Syndrome in conjunction with RA. I believe they can be
closely related, and so does DrDoc on his Arthritis pages:
http://www.arthritis.co.za (under "Syndrome Index")
Last December I was working non-stop on an intensive computer project
and began to experience sharp pains in my right hand. I began to
favor that hand/wrist with a splint, and the symptoms quickly spread
to the left hand as well. I was diagnosed with overuse syndrome. It
wasn't until the following July when symptoms showed up in my feet
that I was fairly certain the CTS was a result of systemic
inflammation, not repetitive stress. Nerve conduction studies were
normal.
I also experienced Ulnar nerve compression that caused my hands and
arms to go to sleep at night when I slept on them wrong. The
symptoms of both were very painful, mostly burning and pins and
needles sensations. When my Rheumy prescribed 10mg prednesone per
day, the nerve compression problems mostly went away. While I had
these problems, I used wrist and elbow splints from IMAK Products.
They make the only elbow splint comfortable enough for sleeping I
could find.
Now my symptoms are sharp pains and burning sensations in my hands
and feet, with the usual morning stiffness. The odd thing is that I
am seronegative (no unusual blood tests) and there is absolutely
no "visible" swelling yet. Five months of Plaquenil did nothing
except disrupt my vision a bit. My next stop is a neurologist. I
suspected a peripherial neuropathy early on, but RA seemed to make
more sense as time whent on. Maybe the negative labs and lack of
swelling is a positive indication for a more favorable outcome for
this 48YO male.
Steve

Dear all, Hi,
I have a query today. Whats the effect of pregnancy on RA??? I have heard that pregnancy is good for RA. Is that true???

Thanks in advance,
Prayers for all,
Hassan

Hi all,

I had to go to the ER last night. I thought I was having a heart attack, but come to find out I have pneumonia in both lungs. The prednisone that I had been on had masked the signs of the infection. I had no trouble breathing-just chest pain.

My question is-can I still take the methotrexate Monday and go for my Remicade infusion Tuesday while I have pneumonia? I don't know how long I have had this, but it's probably the reason why just walking a short distance exhausted me.

I am still so new to all of this and I really appreciate your input.

Thanks,

Teah [INLINE]

Hi,
Last week based on symptoms and bloodwork my dr. feels I have
Rheumatoid Arthritis (and I just thought I was getting old, tired
and achey!). He is sending me to a Rheumatologist next week for
evaluation. I'm 54, married, and we have a 26 year old severely
handicapped (total care - no communication) daughter. I do all her
personal and medical care (except bedtime whne my husband is home).
He also said I have carpal tunnel in both hands and, as Laurie said
in a previous post, he feels it is a result of RA and the way I
sleep. I'm still trying to get my brain around all this. I'm
having difficulty reconciling RA and my life I have to lead. I
don't have time for RA and I don't know what to expect. I was
always the one in the family who was healthy as a horse and had
excess energy. What's going to happen? I guess I'm scared. I don't
know that I have any questions, yet.... just needed to vent, I
guess. Don't know anyone with RA to talk too.
Carolyn

Hello out there...

I'm new to the group an thought I would say hello. I am 36 yrs old and have RA since I was about 28. My mother had an autoimmune disease as well (Myesthenia Gravis) and I suspect a genetic pattern here. I have had peaks and valleys with the disease.

A couple of years ago I reached the point where I could barely walk anymore due to extreme pain in my ankles and feet. None of the standard medications were working (methotrexate) and my insurance was resistant to pay for Enbrel. So, my doc at the time suggested I participate in a research trial for a new arthritis drug coming to market. Which I did - and it's been the best thing in the world for me. The study was 1 year long but I have extended it and have been on the medicine for about 3 years now. Once a month I get an infusion that takes about 1/2 an hour- and that's all there is to it. After I started on it, it was like I never had arthritis at all - truly amazing. My concern now is that I can't stay on it forever - it will be going to market in the next couple of years and I won't be able to stay on the study any longer. I suspect it's going to be expensive on the open market (right now my treatments are free), and then it's back to fighting with the
insurance company for appropriate treatment.

The good news is that there are new drugs coming to market that REALLY help and don't have the side effects that many of the current treatments do - I have been really lucky to be involved with this study.

Brad Hinson

i saw my doc today and he gave me yet another med. this one is to
help my stiff joints. i have had a terrible time getting out of bed
and moving. the new med is called sulfasalazine 500mg. i take it
once a day for a week, then the next week twice a day, then from
there its three times a day. so i am hoping it works. i have to have
a blood test in a few weeks to make sure my white blood count doesnt
drop. so i thought i would drop a line or two to let you know whats
going on. take care and love everyone you know deeply you never know
what life will hand you. god bless love sessymama44129

Hello,
I am 35 years old and was diagnosed with RA in March. I also let
the depression sneak up on me even when I said I wouldn't let it.
It hit me hard, but I think I am feeling better with the help of
Effexor. I also take 1000 mg. of Azulfidine twice a day and 800 mg.
of Ibuprofin when needed for the RA. I was also told by a
neurologist that I have carpal tunnel in both arms and most likely
will need surgery to fix it. Has anyone with RA experienced carpal
tunnel? I was told that it might be a result of the RA and or the
way I sleep. I don't type much or work with my hands much, so it
wasn't developed that way.
Laurie

Hi all,

My rheumy has had me on a very high dosage of prednisone for about a week now and I've noticed that my heart pounds, I am extrememly agitated, easily frustrated, and will blow up at someone in a skinny minute.

I have only had this happen one other time and my family doc said that it was due to prednisone psychosis. I went off the prednisone and was given something to help with the agitation while going off of the prednisone and was back to normal in no time.

I had forgotten all about it with all of the other medical problems that are going on with me until today. I had a resident come in to complain about something and I normally listen and see what I can do about it. Not today- I just let her have it. I also had a letter opener in my hand that looks like a knife and I didn't even realize that I was banging the thing into the desk while I was being irate with her. I now know why she agreed with me so quickly and got the heck out of my office. The poor girl. My maintenance man got off the phone and told me after the fact that I had done that with the letter opener- I was shocked and then I realized I had been doing it.

Has anyone ever had this or anything similar happen to them while on prednisone? I know it helps with the imflammation, but I don't want to go off on others either.

By the way the rheumy stopped the prednisone.

Teah

Hey Diana, My name is Sue and I have MCTD, Fibro and Reynaulds. I
have two girls ages 8 & 10. I was on plaquenil when I ended up
preggers. My first was not planned and I was taken off all my meds
except prednisone. I went on 20 mg a day for the entire pregnancy.
I was sick with mono, strp, sinucitis, larengytis, barr epstein and
was in the hospital with severe dehydration for a week. Then I had
to deal with being bed ridden for two months due to the mono. I
also had a problem with pre-term labor starting a six months and
continuing until I delivered at 38 wks. She had no problems due to
the meds I was on the first 7 weeks I was pregnant and is health
now. But it was a worry. My second was planned and again I was
taken off everything except prednisone but I did have to deal with
gestational diabetes and she was delivered at 8 months. After that
she had a problem with projectial vomiting if she was fed anything
more then 4 ounces of formula at one feeding. That continued until
she was six months old. The drs. denied it but I am convienced that
her problems with keeping formula down was due to her early
delivery. You also will not be able to breast feed if your Rheumy
decides that you need to go back on all your meds at the time of
your delivery. And he/she may need to to keep you from going into a
major flare. You might want to concider adopting due to your health
problems. You also need to be aware that the meds you are on can
cause temporary sterility, so you may not be able to get pregnant
while your husband is home on leave. Think long and hard on it. I
don't regret my girls, but either one of my pregnancies could have
killed me or my girls. That's my advice to you anyway. I hope this
helps.
Sue

Hello again!

Has your Rebif worked well for your MS? Many of the interferon meds counteract the RA meds. Humira is a new biologic that can be taken for RA and MS.

As you probably know, methotrexate is a chemotherapy drug in large doses. As with any med, it doesn't always work. Some cancer patients, I don't know how many, on metho have been known relapse or develop new types of cancer -- HOWEVER there has not been solid proof that the metho caused it or that it would have happened anyway.

Does your rheumy and neurologist know about your previous tumor when they prescribed the metho? I honestly don't know how you would know for sure that the metho had caused the growth. In all reality, your immune system is severely compromised because of the RA and MS and tumors love that.

Personally, one of the reasons I am willing to take the meds regardless of side effects is lots of diseases run in my family -- arthritis, cancer, heart disease, asthma, MS, cerebral palsy & Bell's palsy to name a few -- that it is likely I might develop one of these illnesses without the meds. I would rather be in less pain & risk side effects that may or may not happen.

Unfortunately, that doesn't really answer your question but I hope it helps.

Take care,

Steph in VA

Hello all,

My name is Barbara. I was diagnosed with RA in Dec. 2002 but my symptoms started in the fall of 2001. I was taking Methotrexate until August 2003 when I had to stop due to nausea. I am currently taking Celebrex only. This week, I have had a bad flare up in my hands and wrists. The swelling in my wrists causes my carpal tunnel syndrome to flare up also. I welcome any suggestions for pain relief and help in sleeping.

I just finished reading this new book on arthritis. It's called Stop
Arthritis. I found it at this website www.stoparthritisnow.com
I have had RA for 10 years and am tired of taking the medications.
This book is a true story of how this guy defeated his RA by using
all natural methods. It's pretty good. I am sure alot of us are tired
of taking meds too. I think this book is a better way to deal with
arthritis than medication, but I am no expert.
thanks
Zeke

Diana, please be extra careful. I have been told you need to be off methotrexate 6 months before even trying to get pregnant. Definately check with your doctor on this one. I have been off of Methotrexate since June and we are going to start trying in January. I am still on Enbrel, my doctor and OBGYN both say Enbrel is ok till I conceive. Then I have to stop everything.

Good news, apparently 90% of women's RA goes into remission during pregnancy.

Good luck, JennH

Subject: Medication and pregnancy

I was on 20 mg. of Methotrexate weekly but my hubby (who is
currently deployed) and I decided that we want to try to have a
baby. He is coming home on leave in late December for 2 weeks. This
is our time frame... We just got word that he will be going to Iraq
in 2005 which is a 2 year deployemnt. So, we have one shot at
getting pregnant, this Dec. He will be home in August of next year
and will be home for 6 months before he deploys again. Sigh...

I came off Methotrexate in August. I am managing my disease without
a DMARD. I am on Ibuprofen (3200 mg/day) and Prednisone (10 mg/day).
I am doing ok but now am getting some bad pain. My doctor said I can
go on Enbrel, which I am afraid to do. I am afraid of anti-TNF drugs
because we don't know long term effect and I am only 28 years old. I
am scared to try something that could cause harm to me and a
developing fetus.

I would like information from anyone who went through a pregnancy
with RA or someone whose gf/wife went through a pregnacy with RA.
What advise can you share with me? I am open to all opinions, even
harsh ones. :-)
Thanks,
Diana

Dear Miriam,

Welcome to the group. This is Stephanie in VA. I am 26, single, no kids and was diagnosed with arthritis in 11/99 (next month will be my 4 year "anniversary"). It took 14 doctors 2 months to diagnose me. It felt like a lifetime to me but I now realize most people goes years without being diagnosed. My current meds are: Prednisone, Azulfidine EN, Methotrexate, Folic Acid, Remicade & Ibuprofen.

As far as shoes go, I wear Brooks sneakers with the reinforced arch because I have flat feet. What type of work do you do? I am the Child Services Coordinator for the local family shelter. I wear my sneakers every day to work and leave dress shoes at the office in case I have a meeting or presentation. Luckily for me, the local paper did an article about my arthritis and my quest for a diagnosis so most people know I have arthritis and they are pretty understanding about my limitations.

As far as feeling "normal" again I afraid that that is unlikely to happen, at least from my experience. Remicade has helped me alot, but I have learned to (begrudgeingly) accept that the normal I knew will never happen again. I have a new "normal" which includes lots of meds, having a schedule of bedtime/wake time/nap when possible, etc.

That's all for now.

Take care,

Steph in VA

Dear Toni,

This is Stephanie in VA. Remicade has a great patient assistance program to pay where your insurance leaves off. I used it once when I switched plans and my insurance was working on accepting Remicade. They are really great. Visit www.remicade.com.

Take care,

Steph in VA

Hello Catherine,

This is Stephanie in Virginia. I was diagnosed with arthritis in 11/99. I'm glad that the gold injections are working for you. Most doctors have stopped prescribing it here in the States.

I put on about 60 pounds while on high doses of prednisone. The good news for me is that as I have been lowering my dosage I have also been losing weight as quickly as I gained it. I'm now on 3 mg of prednisone and am only about 15 pounds over my original weight.

Take care,

Stephanie

I was on 20 mg. of Methotrexate weekly but my hubby (who is
currently deployed) and I decided that we want to try to have a
baby. He is coming home on leave in late December for 2 weeks. This
is our time frame... We just got word that he will be going to Iraq
in 2005 which is a 2 year deployemnt. So, we have one shot at
getting pregnant, this Dec. He will be home in August of next year
and will be home for 6 months before he deploys again. Sigh...
I came off Methotrexate in August. I am managing my disease without
a DMARD. I am on Ibuprofen (3200 mg/day) and Prednisone (10 mg/day).
I am doing ok but now am getting some bad pain. My doctor said I can
go on Enbrel, which I am afraid to do. I am afraid of anti-TNF drugs
because we don't know long term effect and I am only 28 years old. I
am scared to try something that could cause harm to me and a
developing fetus.
I would like information from anyone who went through a pregnancy
with RA or someone whose gf/wife went through a pregnacy with RA.
What advise can you share with me? I am open to all opinions, even
harsh ones. :-)
Thanks,
Diana

My name is Miriam and I have been lurking on this last for the last
few months. I have found the information I have been reading to be
very insightful and helpful.
I am 37 with 7 children and was disagnosed with RA about 1 years ago
but have suffered with pain since I was 12. I got passed around to
Dr's who said they didn't find anything wrong and I had given up.
Late last year I couldn't take the pain anymore and it was from head
to toe with extreme exhaustion and my company doctor sent me to a
rhematologist who promised to get to the bottom of the problem, after
all these years! I tried things like Vioxx, Celebrex, Cochicine and
who knows what else and the pain kept getting worse. I am now on MTX
and Enbreal and Vioxx. I am not in the extreme pain I had been in
but I still am in pain constantly. I can barely walk due to the
damage to the metatarsal joints in my feet, I can barely write
because my hands are so sore and everything in between hurts also.
My 16 year old daughter was recently diagnosed with JRA after 4 years
of being in pain, my not liking the doctors I took her to until I
finally took her to my own rheumy. Based on when my problems
started, I probably have JRA and not RA. I am not sure if it makes a
difference or what the real differences are between them, except when
you got diagnosed.
I work full time and am really struggling. I haven't been staying a
full 8 hours because I just can't make it. Are medications ever
supposed to make me feel "normal" again or is this as good as it
gets? Should I hope or expect for more relief? I am not in the mind
numbing pain I was in prior to my current meds and recently came off
prednisone (gained 30 pounds)but I am having a hard time imagining
that this is as good as its going to get.
Sorry for the length, and thanks for all the great info I have
already gathered.
Miriam
Cleveland, OH

It's my understanding that Medicare won't pay for Remicade unless
methotrexate has been tried by itself and doesn't produce the needed
results. Medicare will then pay for Remicade as long as it's used along
with methotrexate. Is this what those of you with Medicare and on Remicade
understand? (I have Medicare disability which covers 80% of my Remicade and
my private insurance picks up the rest.)
Jan is Miss.

Dear Diane,
Hello! This is Stephanie in VA. I agree with what Lyn said in response to your email. Here is my 2 cents as well:
I was diagnosed with inflammatory arthritis in 11/99 when I was 22. My current meds are: Ibuprofen, Azulfidine EN, Prednisone, Methotrexate, Folic Acid, and Remicade. I've tried almost every medication available except a few.

As far as your doctor making you take 3 meds instead of cutting back, research has shown that the meds work better in combination rather than alone. Many of the people on the list take 1 or more med from each category (ie NSAIDS, biologics, DMARDS, etc.)

I know the meds are expensive. I worked with the Remicade patient assistance program while my new insurance was approving Remicade. They were wonderful. Remicade is really expensive. In reality, if you don't have insurance you need to make 6 figures in order to order the drug.

As far as your sulfasazine dosage, I take 8 per day. With the sulfa meds, one reason for increased side effects can be because you are not drinking enough water/Gatorade. A good test is that Sulfasazine turns your urine orange. You know you have had enough liquids if your urine returns to a normal color.

I also don't understand why you would refuse a biopsy. Sometimes the meds can bring out a problem that was already there but laying dormant. For example, if you have inactive TB, taking a biologic like Remicade can cause the TB to become active.

I know a few people who have done well on a "Mediterranean" diet but eating healthy is important whether you have arthritis or not.

With therapy, I'm not sure if you mean mental therapy or physical therapy, but most time you have to ask for it.

I am lucky that my rheumy believes in complimentary medicine in addition to conventional. He supports my decision to have massages (even writes me a prescription if I ask), acupressure, yoga and ballet in addition to my meds.

As far as weight gain, I gained 60 pounds from prednisone but a lot of it has come off as I went from 40 mg a day to my current dosage of 3mg a day.

That's all from me.

Take care!

Steph in VA

This was the original article I found about hearing loss..forgot to include it with the other one

Methotrexate Ineffective in Slowing Autoimmune Hearing Loss

http://www.medscape.com/viewarticle/462708?mpid=19546

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
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Again, can't remember which group was talking about hearing loss, but I ran into this.

autoimmune inner ear disease

http://www.hearinglosshelp.com/AIED.htm

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

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National Depression Screening Day
October 9, 2003 is National Depression Screening Day. Screening sites all over the US will be offering free depression screenings. International screening sites are also available. If you are concerned that you may be depressed, take a moment to look up the site nearest you and get your free screening.

Screening Sites http://depression.about.com/gi/dynamic/offsite.htm?site=http://www.mentalhealthscreening.org/locator/NDSDmap.htm

International Screening Sites http://depression.about.com/gi/dynamic/offsite.htm?site=http://www.mentalhealthscreening.org/locator/NDSD%5FNonUS.htm

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
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Tip of the Day for October 09, 2003
Serotonin affects the perception of pain, helping to "turn down the volume." It also promotes deep, restful sleep. Studies have found that levels of serotonin may be low or that the neurotransmitter may not be processed effectively in people with fibromyalgia. Decreased levels of serotonin may also lead to a change in the amount of substance P that is released (thus sending pronounced pain messages to the brain) and lower levels of stress hormones.

(Source: Natural Treatments for Fibromyalgia: An A to Z Guide, by Kenna Simmons. An official publication of the Arthritis Foundation, available at www.arthritis.org.)

This tip provided courtesy of ImmuneSupport.com

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
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Welcome to The Medicine Program! This organization was established by volunteers dedicated to alleviating the plight of an ever increasing number of patients who cannot afford their prescription medication. Find out more about our service and how you could benefit from this program.
http://www.themedicineprogram.com/

We are an information clearinghouse for low cost and no cost prescription drug programs.
There is no charge to use this website, and there is no charge to be listed on this website. It is absolutely FREE.
http://www.medicationfoundation.com/

Since many seem to be having problems affording prescriptions I thought I would share some assistance sites.

Some pharmaceutical companies offer medication assistance programs to low-income individuals and families. These programs typically require a doctor's consent and proof of financial status. They may also require that you have either no health insurance, or no prescription drug benefit through your health insurance. Please use the contact information provided for specific eligibility requirements and application information.
http://www.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_Assistance_Programs.htm

Welcome to HelpingPatients.org, a new interactive Web site by PhRMA and 48 of its member companies. This site was designed to help you find patient assistance programs for which you may qualify.
http://www.helpingpatients.org/

The research-based pharmaceutical industry has had a long standing tradition of providing prescription medications free of charge to physicians whose patients might not otherwise have access to necessary medications.
http://www.edhayes.com/indigent.html

Do you qualify for a LOW or NO COST government funded prescription program?
Choose the state you live in and find out quickly.
http://www.qdrug.com/sf/

Hope this helps someone! I know of many who use them.

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
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NUTRITION NEWS FOCUS
"Nutrition news is important. We help you understand it!"
Today's Topic: "Operation Cure.all"
The U.S. Federal Trade Commission (FTC) announced on June 24, 1999
"Operation Cure.all," designed to stop bogus claims about health on
the Internet.
< http://www.ftc.gov/bcp/conline/edcams/cureall/index.html
spent a day surfing the Web to find the most outrageous claims. They
then sent notices to 800 sites telling them that disseminating false
or unsubstantiated claims violates federal law. FTC staff found that
28% of the sites either removed their claims or were out of business.
This means that almost three quarters of the sites didn't change a
thing.
The FTC went after four of the most egregious sites to make examples
of them. One company claimed a fat derived from beef tallow cured
most forms of arthritis by permanently modifying the immune system;
one company claimed that shark cartilage and Cat's Claw were effective
treatments for cancer, AIDS, and arthritis; two companies were selling
magnets to treat cancer, liver disease, arthritis, and high blood
pressure. Each company signed a consent agreement prohibiting them
from making similar unsubstantiated claims. But, a consent agreement
is not an admission of violating the law; it carries a fine of up to
$11,000 per violation. Not a big penalty for companies selling
millions of dollars worth of merchandise. These cases are the tip of
the iceberg. The Internet represents new territory for snake oil
salesmen.
HERE'S WHAT YOU NEED TO KNOW: Typical signs of
fraudulent claims include:
* Products advertised as effective against a wide range of ailments;
* Use of terms like scientific breakthrough, miraculous cure, ancient
remedy, etc.;
* Impressive sounding terminology to disguise a lack of good science;
* Claims the government or the medical profession have conspired to
suppress the product;
* Testimonials instead of facts and figures; and
* Product availability from only one source.
Keep this list handy, and consult it when you learn about the latest
"miracle" before you reach for your credit card.

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
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I think it was Danita or Deb ? Oh well, it was someone I gave info to about their first visit to a rheumatologist. Here is more info:

First Visit To The Rheumatologist
You're experiencing symptoms of arthritis. Everyone is telling you to see a rheumatologist. What's a rheumatologist? What can you expect from your first appointment

http://arthritis.about.com/cs/docpad/a/rheumatologist.htm

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
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I am so sorry this has happened toyou. I will pray you get a fast recovery. I won't be on much as I now have strep throat along with the PAIN I have. This week without meds has been awful. I HURT. I can't walk right n ow, can't do much of anything right now due to the pain. I can't afford a rhumey nor my reg. dr. right now.

Berta/going back to bed before I fall over.

Hi All,

My husband has handicap plates for our vehicles and by law I am not allowed to park in one of those spots unless he is in the car with me. I pulled into a regular parking space at the local grocery store one day not to long ago and got reamed out by a guy for not parking in handicap spot. Can you beat that. There are times when I do use them when I am having a bad day, but also take a big chance on getting a ticket for doing it. I don't know what I have to do to get the right to use them myself, but I am sure the day will come when I will have to find out.

I have had the second Remi infusion and still no major side effects. Am feeling good other than a bout of some virus that is going around right now. Bad day of the week as I have to take MTX tonight so will probably be even more nauseated tomorrow.

How do you deal with the fear that you are going to be even more ill with all the viruses going around now that our immune systems are compromised? I work for a company that does not offer sick time and people come to work sick because they can not afford to take the time off. I am the receptionist so come in contact with everyone that comes in.

The infusion nurse told me to make sure that I got the flu shot and this I do every year anyway. Last year it didn't help as there was a flu strain going around (that wasn't included in the shot) that I caught and ended up spending Christmas in bed. YUK. I haven't been that sick in 15 years and I missed my daughters prime rib dinner.

Deb Laliberte

Your advice is really helpful Lynn. I hate to say but you know waay
too much about arthritis and its problems.
I hope all goes well for you.
Is it commom to use mtx and remicade? I thought if you took a
biologic you dropped some of the others. I see the rheumy for the
first time in 10 months soon and though my joints aren't too bad I
have been so tired lately
Annette

You should all read this, if you are at all interested in pain mgt., use of opiods for pain control etc. This is written by a doctor FOR other doctors.

Breakthrough Pain: Treatment Rationale With Opioids

http://www.medscape.com/viewarticle/461612_1

Dear Berta,

I agree with Linda that you are not admitting defeat! My name is Stephanie. I'm 26. I was diagnosed with arthritis on 11/8/99. My current meds are: prednisone, ibuprofen, Azulfidine EN, methotrexate, folic acid, & Remicade. Insurance and treatment is always hard. Many of the drug manufacturers have patient assistance programs. I understand your reluctance to take meds. I realize now that my arthritis was doing damage to my body long before symptoms surfaced.

Personally, I would rather be useful and not in (as much) pain and risk potential side effects than to be in the mind-numbing pain I used to be in.

Take care,

Stephanie in VA

Good Morning...well, for some anyway. Last night I fell and broke three bones in my foot and sprained my wrist and my shoulder. Stupid fall, but my question is this, does anyone know if I have to take any special precautions , or do things any differently after a bad break with RA , OA...I have broken my pelvic bones, but in that case it isn't a weight bearing break..or at least not the same type. 50% of the reason they broke this time is due to acute osteoporosis, so I know we need to do something more about that. Any suggestions welcome...it hurts like hell!

Thanx,

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
Subscribe:

Hello,
I'm brand new to this message board, and to RA. I was newly
diagnosed last week as exhibiting the pattern of early RA. I'm 32,
and I've had symptoms off and on for the last five years. The
duration of swelling increased enough recently to get the diagnosis.
Right wrist gets painful and swollen; ditto for right knee; swelling
in both hand by the knuckles.
My rheumy suggested I start with either methotrexate or Plaquenil.
I'm leaning towards MTX. However, I don't want to overdo my initial
treatment if Plaquenil would work, with fewer side effects. Any
thoughts? I really appreciate your help and insight as I weigh the
pros and cons.
Jennifer

Three cheers, Lyn, for your message to Berta which is right on target.
Berta, please take Lyn's words to heart - they will save you a lot of grief
down the road. Find a good rheumatologist that you have faith in and DO
WHAT HE/SHE SAYS. I live on the Miss. Gulf coast and have a rheumatologist
in Biloxi which I'd be happy to recommend to you if where you live in
Alabama is close enough.
Jan
*********** REPLY SEPARATOR ***********

Hi all,
I was wondering if any of you had been advised either way for or
against getting flu shots whild taking Enbrel or other biologic
drugs. Thanks Janet

I realize this is way off-topic, but it is so very important to me that we all are reminded of this.

October: National Domestic Violence Awarenss Month: Empower yourself.
It's a Fact: Violence against women in any form is a crime, regardless of who committed the violent act. It is always wrong, whether the abuser is a family member; someone you date; a current or past spouse, boyfriend, or girlfriend; an acquaintance; or a stranger.
Take Action: Make a list of safe places you can go to protect yourself from abuse. It is important to develop a safety plan to protect yourself and your children. Make a list of people you can contact in an emergency and put together and hide a suitcase of clothing, personal items, money, identification cards, social security cards, birth certifications, bank records and other important documents you would need if you had to leave quickly.

Contact the National Domestic Violence Hotline at 1-800-799-SAFE (7233) to find out what resources are available in your community.

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
Subscribe:

Do any of you find that you get recurring urinary tract infections?
If so what works?
Annette

Berta, I negelected to tell you something about blood work/lab testing in RA. Much of the time, those with RA do not show a positive RA factor. Sometimes, never, in my case it took 8 years. And much of the blood work may not be indicative of RA. This may sound confusing, and it can be. So the rhuematologist will rely on a variety of things to make his diagnosis. Patient History is very important. Physical symptoms that you are showing, and for how long. X-rays of suspect joints, possibly MRI, cat scans, bone scans...all of these things put together will equal an RA diagnosis..Please do not put so much emphasis on blood work, it is only one, and really not a major one, of the aspects leading to a RA diagnosis.

Lyn

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
Subscribe:

Lyn or anyone else. Could you give me some websites to compare my lab results. Thank you

Berta in Alabama

Genetics of Rheumatoid Arthritis

http://health.discovery.com/minisites/dna/rheum.html

Lyn

If you can laugh at it, you can live with it.
Erma Bombeck

Autoimmune and Chronic Disease Newsletter
Subscribe:

We are "support groups" !!

Support Groups Offer Understanding, Information
Mayo Foundation for Medical Education and Research
http://www.mayoclinic.com/invoke.cfm?id=MH00044

Lyn [INLINE]

Autoimmune and Chronic Disease Newsletter

BLOOD Test May Predict Rheumatoid Arthritis - PakTribune.com, Pakistan
The presence of certain antibodies in the blood may signal the development of rheumatoid arthritis years before symptoms begin. ...
<http://paktribune.com/news/index.php?id=40372

Lyn [INLINE]

Autoimmune and Chronic Disease Newsletter

I was diagnosed with RA a little under 1 year ago. I have good days and I have BAD days. My dr. gave me celebrex and I occassionally get steroid shots. I am out of celebrex and cannot afford the shots right now so I take Ibuprofen 600 mg. It does help the pain some. I have a 2 year old to take care of. I really don't want to take meds all the time and the pain is not so severe that I can't function yet. I have no insurance. Now for the questions, why is it important for me to take something for this right now when I am not in bad pain most of the time? If I continue with the shots I will end up gaining weight and I have already gained back 10 pounds I struggled to lose, I gained from the shots. I don't want to be huge. I am 38 years old and don't want to end up even more overweight in the near future. I have a handicap tag on my van but dont' like to use it as then I am admitting defeat in my eyes. This is what my test results said, does this look like RA, my
dr. says it is but I am not so sure. My mom had RA but not severe before she passed away at the age of 52.
Rheumatoid Profile 9
ANA SCREEN, ELISA NEGATIVE
ANTI STREPTCLYSIN WAS 193 WHICH SHOWS AS HIGH
RHEUMATOID FACTOR, QUANT <20
SED RATE 23 WHISH SHOWS AS HIGH
C-REACTIVE PROTEIN 1.1 WHICH SHOWS AS HIGH
URIC ACID 6.5

What does this look like to you all? RA or something else.
My lupus test came back negative
My hands swell and hurt
My feet have knots and swell
My hips, knees and ankles hurt alot

Advice as I think I am in denial right now cause of being afraid

Berta

Hi Joyce,

I have thought about doing this myself but my doctor said that the RA keeps causing damage to the joints and I would become

crippled. Is this not true?

Linda L

Well, not saying that this totally worked. But, I posted pages like
the following up on my kitchen cupboards with certain lines
HIGHLIGHTED. My younger brother told me during a visit, WOW, thanks
for putting that up, I had NO idea!
I found more at:
http://arthritisinsight.com/living/family/fatigue.html
The Fatigue Factor
I often hear, "My family just doesn't understand how exhausted I am."
And it is probably true. I don't think the average person can
comprehend the constant fatigue of inflammatory arthritis. I'm going
to explain the fatigue factor in a very unscientific way, without
journal references to back me up. This is how it was explained to me
several years ago and I hope it makes sense to you.
Pain is pain, everyone has experienced some degree of pain in their
lives. You can probably understand to some extent the pain of
arthritis. I describe the pain as my worse toothache pain x2, and in
multiple joints, not just one tooth. As bad as the pain can be at
times, I can handle it, it's the fatigue that gets to me.
At the root of most cases of inflammatory arthritis is an overactive
immune system. I picture the immune system as an army of tiny little
soldiers. The soldiers' job is to fight off whatever might invade and
attack our systems. Some of us ended up with very confused soldiers,
they attack our own bodies, usually starting with the joints.
Do you get very tired when you have the flu? When you have the flu,
your immune system is fighting off the invading flu army. Fighting
takes energy, fighting makes you tired. When the flu is over and your
immune system stops fighting, your energy returns.
Our immune systems never quit fighting, they are continually at war.
On a good day, those of us with inflammatory arthritis feel much like
you do when you have the flu-tired, lethargic, generally yucky! On a
bad day the fighting sucks up every once of energy we have. We are
exhausted right down to our bones. This exhaustion can stop a person
dead in their tracks. And very often this horrendous feeling of
exhaustion can last several days or even weeks.
So the next time your friend says, "I can't go, I am just exhausted."
She isn't making an excuse, she isn't lazy or lacking motivation, she
is honestly totally exhausted, there is a war going on in her body! A
little understanding on your part would be greatly appreciated!

HI, My name is DANITA, and I just wanted to ask everyone for advise,
and thank all of you for the posts and e-mails, they keep me going
and teach me so much. My problem is this; I finally got an appt.,
with a RHEUMY for next month on the 21st, seems he is the only one in
the local area so it is taking awhile. I called my GP two weeks ago
and told her that I could not stand the pain any longer,( and that is
coming from a woman that has had 4 children and no pain meds), so my
pain tolerance is high. She gave me a RX for MEDROL DOSEPAK 4MG which
was for 6 dys., and an RX for PERCOCET 5-325MG. This is it, I am in
so much pain now that I can hardly move my neck, sit,( because of my
knee pain) and I have no stength in my hands. I have another appt.,
with GP., today. It seems like I have to beg for meds., what should I
do? Everyone I know has always said they think I am a very strong
person, that has been through alot and came through ok, but I don't
think I can stand this much longer. Hands are killing me I know this
is long, forgive me I just needed to vent I guess. THANKS AND GOD
BLESS ALL OF YOU. PS ANY ADVISE WELCOME DANITA

Hi there,
The reason Remicade helps your Crohn's is because it was originally developed for Crohn's disease. Many Crohn's patients have other auto immune diseases like RA and MS and it also helped the RA symptoms so a separate study was done with Remicade & RA, so the FDA approved it.
It is important to remember that Remicade and other biologics can increase your risk of infections. I've been lucky that I haven't had a problem but I knew many have.

Take care,

Steph in VA

Lyn G wrote

Hey, my daughter takes Lexipro, and has been wondering about having the dosage increased. What dosage are you taking if I may ask?

I am only taking 10 mg of the Lexapro and then I take 100mg of the 5-HTP. The Lexapro wasn't working all that well and they were really making me sleepy so I ask my DR. about increasing the dosage or changing me to something else. That's when he put me on the 5- Htp (5- Hydroxytryptophan)Its a precursor to serotonin. I get it at the health food store.

You might ask her Dr. about it.

Its made allot of difference for me and the cost isn't so high.

Did you see the posting I sent with the prescription assistance web sites? If not, I can repost it. There is NO need to go without meds.

Yes I did and I am looking in to it right now. I also fwd it to my mother who really needed the info. Thanks so much for all the help.

God Bless you

DeWanda

Hello everyone,

Me too! People only see me when I am not so flared, and of course one often looks quite healthy even with rosy cheeks when having a flare.

It is so tough having to tell people over and over "I can't do .... . when perhaps the next month you can.

I'll never forget one incident which happened while I could still work. I was giving a paper and people came up to shake hands afterwards ..... what do you do?

One woman - a stranger - came up to me and said "I see you have RA!"

I nearly burst out crying there and then as she went on to say "I could tell from the way you held your hands. My father had RA and it was always difficult, he looked a picture of health , and people did not believe there was anything wrong with him - that's why they call it the hidden disease"

I later realised that even my doctor had never seen my when the RA was bad, because I could not get to the surgery - i could barely get to the bathroom!

I have even thought maybe if I had a wheelchair and could get out when I was bad in the wheelchair, then perhaps people would begin to realise this is a serious disease.

Catherine

hi everyone, I have not put a message on for a while, but i was
wondering if anyone can give me some advice.I was diagnosed in 2001
after having surgery, with ra (my mum also has ra), recently my
rhuemy stopped my plaquenil and sulsfazine so i could go on a drug
trial, for mabethra. I am now only tking prednisone 8mg and vioxx and
methatrexate. I have never had a blood test come back abnormal my esr
is always normal as is my crp, i had a rf test in 2001 which came
back negative. to go on this trial i had to have a high esr or crp so
my rhuemy suggest i didnt take prednisone for 2 days before blood
test (i have been in agony ever since) which i did and of course as
usual my bloods came back normal. i have had genetic testing done and
they found i think its dl-27. i have decided to change rhuemy's as i
dont think he has my best interests at heart only his research. all
my xrays etc show no changes, but i can see them in my hands and
feet. i have had cortisone injections in my hand for what my rhuemy
thinks is carpal tunnel even thoug the nerve test it is not, in my
shoulder twice and twice in my hip which did not work. if anyone has
any advice for me it would be great, i am starting to feel as though
maybe i have been misdiagnosed even though i know in heart i have
this rotten disease as it is following how my mum started with
it.please help!!!!!!

I forgot in my last post, Catherine had ask about
the Atkins life style.
My DR. recommended a low carb high protein diet to help with my
depression so I chose Atkins. The first two weeks were great but now
for the last four weeks I haven't lost a pound. I am still following
the program though as it has helped my depression and has given me
somewhat more energy. But the Anima from the RA keeps that low. But
Hey any little bit helps.
Have a super day!!
DeWanda

Does anyone else use the hot paraffin on your hands for arthritis? Has it ever made your symtoms worse?

Elizabeth

Hello again
Thank you all for such a warm welcome. I really enjoy reading all the
post and I am really learning allot.
I fell such a bond with everyone. It is so nice to know other people
who are going through what I am. Every time I read a post I catch
myself sitting here thinking ,Hey me too!
Just like Diane I don't have insurance . And like Josephine I know
just exactly what's its like to be so tired that you cant even do the
simplest house hold chores. And I also suffer from Depression. I take
Depakote, Lexapro and 5-HTP just to get through the day.
As I don't have insurance I am not taking anything for my RA as of
right now but I am scheduled to see my DR. on the 18th and hopefully
I will be able to get back on something then. It is really awful with
out it.
Does anyone else feel that most people don't understand what your
going through? It seems as soon as anyone hears the words rheumatoid
arthritis they just blow it off. Its like all they hear is the word
arthritis and for some reason that's not a big deal. I try to educate
people as best as I can. Its just hard
Sometimes I even get the feeling my husband just thinks I am being
lazy when he comes home and finds that I haven't done anything all
day.
But enough about that.
Now to change the subject
The fwd about social security isn't true. You can go to
www.snopes.com and check it out for your self. You can check any fwds
out there before sending them on to anyone. Just thought you might
like to know.
Well I guess I am writing a book again.
I hope everyone is truly having a great day.
God Bless
DeWanda

gcnethery <gcnethery@...

From: "gcnethery"
To:
Subject: Social Security??????
Date: Thu, 2 Oct 2003 08:56:34 -0500

2004 Election Issue!!
This must be an issue in "2004". Please! Keep it going.

Hi DeWanda,

I am new to the group also. Nice to meet you!

Deb....has your ANA come back positive? That is a symptom of Systemic Lupus.

Thank you,
Josephine Askren
joaskren@...
http://www.burnettstradingpost.net/

Hello
I have been a member for a while just lurking and reading, trying to
learn all I can. My name is David, and I have not been completely
diaignosed yet. They say it is Arthritis but thay have not said just
what type. I believe it may be rheumatoid since the symptons match
closer to that than any other I have read about. My Great Grand
Mother had it. I am seeing my rheumatologist as directed. I am on
Celebrex twice daily, and 2 days a week I take Predizone.
I have a question I would like some help on. How much pain should I
expect to have daily. I know weather and other factors come into
play. But just how much pain on normal days. I don't hurt near as bad
after the day or two after taking predizone. Then it seems to get
worse as the days go by. I am wondering if the Celebrex is working at
all. My worse pain is in my hands, fingers, wrist, feet and toes. I
don't want to be to long winded. but should I expect to hurt this way
the rest of my life, or is the better medicine I can take. I am not
whinning, I just don't know what to expect. Thanks
David

Hello Everyone,

I am new to this group, and have been so impressed by the knowledge of the people on the list. I have had RA and Fibromyalgia for about 10 years. It seemed to develop a couple of years after a very serious car accident which i only just survived. The accident was in 1990, and i had various operations every year for five years following, and I often wonder if the amount of blood transfusions I had to have (twice waking up in intensive care), might have damaged my immune system.

As with most of you, I have not had a day or night free from pain since 1990. I have forgotten what it was like to wake up feeling refreshed rather than more tired than when I went to sleep. But on the other hand I am lucky to be alive (I was technically dead and had to be resuscitated)

Now to my question,

Yesterday i had my regular visit to the chiropodist (in-growing toenails), and he told me that he had started drinking komucha tea. My chiropodist has a form of RA himself and he said he is feeling so much better- less pain , less swelling and just feeling good in himself.

Has anyone: tried it? heard of anyone who has tried it? or has any knowledge about it?

I am very tempted to try this as even if it lifted the depression that would be wonderful. As well as all the RA medications I already take Prozac (4 years) which has lifted me from the depth of despair where I was considering suicide, but I am never actually happy.

Catherine

Hi,
I just signed this petition to oppose FDA approval for a new
UNTESTED silicone breast implant. I think that you should sign
as well: http://www.care2.com/go/z/7836/1017
In just a few weeks, the FDA will consider approval of a new silicone
breast implant. In 1992 silicone implants were pulled from the market
because of MAJOR safety concerns many of which did not show up
until 6 or 7 years after the implant. Still, after only a couple of
years
of research this new implant from INAMED is likely to be approved.
FDA Approval would be IRRESPONSIBLE: Millions of women depend
on the FDA's approval as an accurate and reliable standard of safety.
For many women, the FDA stamp of approval implies that there is
no danger when the few tests undertaken for the new implants do not
support such a conclusion.
What we do know about Silicone implants:
* Silicone is KNOWN to travel away from the breast to internal organs,
and joints.
* Women with silicone implants are three times more likely to report
that they had fibromyalgia syndrome-- characterized by widespread
pain, fatigue and sleep disturbance.
* A National Cancer Institute study found that silicone implants
increased
the risk of cancer. The incidence of leukemia, stomach, cervical,
vulva
and brain cancers were twice as high for women with implants.
Previous studies and experience should URGE CAUTION! Approval of
silicone implants would reject caution, misleading women to believe
that
such implants are safe, only because they haven't YET been proven
unsafe.
Women are not guinea pigs! SIGN NOW and urge the FDA to reject approval
of INAMED's implants until FURTHER research and long term data is
available.
Sign this petition here: http://www.care2.com/go/z/7836/1017
Thank you!

Lyn [INLINE]

Autoimmune and Chronic Disease Newsletter

Morning, well it's after midnight, close enough. When I saw my Rheumy
and he put me on ultram he also had me referred to a Neuro./ Pain
managemnet and now I know what the severe pain in my neck is. Well
it's what he said it is but I don't know much about it, yet! Fecet
dysfunction of the C4-5,C5-6 and C6-7 joints. Then I also have it in
the L3-4 and L4-5 or something along that line. I guess I don't know
enough about the spine to identify the areas yet. I just know that
it is worse now then a year ago when I went to him for my lower back.
He sent a report to the military doc of his findings from my last
visit with him but for some reason, it went in one ear and out the
other.
What the Doc said just made my day. Seems the military docs and
radiologist have been writing that there isn't anything wrong with my
spine. OOP!!! MRI says otherwise. Without proper treatment over this
time I have caused some serious problems and am now going to have to
start steroid shots?? in those two areas. I have to go in for another
CT and this time he wants the films sent to a radiologist downtown. I
thought it was funny what he said though. Quote "I don't mean to
sound condescending but they don't know what they are talking
about!!" unquote.
So, anyone know what it's like having shots like that?? Do they
hurt?? Do they help??
Brenda

Sorry to jump in so much and with such a topic but maybe someone will
be interested. I have had a lot of gastrointestinal problems since I
developed RA and I think some of them are caused by NSAIDS and
Methotrexate. The worst nsaid I ever took was Indocid - Indomethacin
I think, which was early in my disease.
I had my gall bladder out a few years ago as part of this set of
problems and the gastro diagnosed IBS. It was getting to the point
a month ago that I tried to make an appointment with a dietician to
get a diet I could tolerate as I was losing weight because of this
and feeling awful.
She said the first thing to do was have a Hydrogen Breath Test for
lactose intolerance. Anyway that was the day I started drinking
lactose free milk and though I haven't had the test the improvement
is amazing. I guess I just have developed this intolerance through
aging.
So it's something to try if your digestion keeps getting worse. It
can't hurt
Annette

I remember last week someone was asking about buying drugs from Canada? Enbrel I think it was. Any way, here is an article I found on imported drugs.

Imported drugs carry higher risks
Close to 90 percent of imported drugs were found to violate laws during a special crackdown by the Food and Drug Administration and Customs agents.

http://www.msnbc.com/news/973602.asp

Lyn [INLINE]

Autoimmune and Chronic Disease Newsletter

I have been reading several posts from others who have RA and other auto immune diseases with it. I don't see anyone with RA and MS. I am trying to balance my medication with these two diseases but they seem to fight against each another. I am presently on a medication for MS to slow down the disease and it is interfering with all of my RA meds. If anyone has MS as well as RA I would love to hear from you and see what you do about this problem.
Thanks
Jan from MI

Does anyone know if Ultram/Tramadol (generic) are addictive? Are there any pain medications that are not addictive?

Elizabeth

Hello Everyone,

My name is Catherine, I am now 50 and I live in Scotland . I joined the list and have been reading the digest for a week or so. I was diagnosed with RA in 1996, and with fibromyalgia in 1999. Had to give up full time work in 1998, and have been struggling with part time jobs and Incapacity benefit to continue to support my family since then.
I had 3 years of prednisone, (1997 - 2000) with various pain killers , and anti-inflamatories (dihydrocodiene, ibruprofen) etc.) Then my new rheumatologist changed me from steroids to gold injections - which have worked almost as well as the prednisone.

However with pred. I put on a huge amount of weight (about 40 pounds)

So, 3 weeks ago I started the Atkins nutritional lifestyle. Since I have to have blood tests and urine tests every month for the gold, i figured i could keep track of any changes more easily that most people. I have I asked my rheumatologist, and my family doctor whether it is harder to lose weight which was gained with steroids and they did not know.

The good news is that eating huge amounts of butter, cream, fatty meat, fish and foul, with lots of salads and water, I have lost 12 pounds. I don't feel the increase in energy which one is supposed to, but having weight off my joints will be good.

Does anyone know about steroids and (then) losing weight?

Hi Everyone!
I am 48 and have RA. The Dr first prescribed enbril shots but even
with my insurance the copay is $450 a month, which is out of the
question. The next thing we were going to try is Remicade but that is
unaffordable too at $200 a treatment. I have Blue Cross HMO. I am now
taking Vioxx and Plaquenil, but they are not as effective as they used
to be. Do anyone has any suggestions...Thanks in Advance! Take Care...Toni

Hello

I am new to the group. I joined last week and I have been just sitting on the side lines reading post just lurking around to get a feel of things. This really does seem like a great group and I am so happy to have joined.

My name is DeWanda. I am 35 as of two days ago. and I have been diagnosed for ten years. I live in Texas with a wonderful husband and a really fat over weight black cat.

I am one of those type people who are not just satisfied knowing that something is happening to my body, I have to know what is happening ,how its happing and why. So I have researched RA and connected conditions very well.

And I am very happy to share any info with anyone. Which brings me to the question about dry eyes that Deb had. It is a condition called Sjogrens Syndrome it can affect your eyes mouth and if your a female certain other areas I wont mention here. Your immune system starts to destroy the glands that produce lubrication. This is why people with RA cant or shouldn't have laser eye surgery done.

The only thing to help is artificial lubrication. Also if you have a very dry month like me you have to be extremely fussy about dental care or it can cause allot of problems. I hope this helps a little.

Well It looks as if I am writing a book here. So I guess I will run for now . I hope this letter didn't make me sound like a know it all . I just wanted to help.

Hope everyone is having a super day!

DeWanda

[LINK]
[LINK]

I can't remember which group I am on that Diane requested info on prescription drug programs!! Fibro-fogged it out, but at least I remember her name! I get points for that?

Here is what I have. Each site is good for different things. The Medicare site is NOT just medicare.

Hope this helps!

Lyn

Welcome to The Medicine Program! This organization was established by volunteers dedicated to alleviating the plight of an ever increasing number of patients who cannot afford their prescription medication. Find out more about our service and how you could benefit from this program.

http://www.themedicineprogram.com/

We are an information clearinghouse for low cost and no cost prescription drug programs.

There is no charge to use this website, and there is no charge to be listed on this website. It is absolutely FREE.

http://www.medicationfoundation.com/

Some pharmaceutical companies offer medication assistance programs to low-income individuals and families. These programs typically require a doctor's consent and proof of financial status. They may also require that you have either no health insurance, or no prescription drug benefit through your health insurance. Please use the contact information provided for specific eligibility requirements and application information.

http://www.nami.org/Content/ContentGroups/Helpline1/Prescription_Drug_Patient_Assistance_Programs.htm

Do you qualify for a LOW or NO COST government funded prescription program?
Choose the state you live in and find out quickly.

http://www.qdrug.com/sf/

Lyn [INLINE]
"You can't be afraid of stepping on toes if you want to go dancing."
- Lewis Freedman
Autoimmune and Chronic Disease Newsletter

I started wearing SAS shoes when I lived in Texas in the 1980s and have
worn them for all the 20 years I've had RA. The shoes are wonderful, and as
far as I know are available around the country. (SAS stands for San Antonio
Shoes because they originated in San Antonio, TX.) I haven't tried Birks,
because I didn't realize that they made anything but the clodhopper-looking
shoes, but I'll look for them after your recommendation.
As to stress and arthritis, I totally agree it has a major effect on how we
feel. When I sit and do needlepoint and watch BBC America, I'm totally
unstressed and nothing hurts or at least I don't notice the pain which is
just as good as not hurting. For years, I had to give up needlepointing
because of the pain in my hands, but I was able to start back a year or so
ago (thanks to Remicade) and I'm grateful for that.
For those of you dealing with the problems of teenage children plus the RA,
I've been there and I know how difficult it is. My heart goes out to you.
Hang in there, it does get better, both the RA and the kids!!
Jan (who is looking out the window at a beautiful fall morning in south
Miss.)

I just wanted to let you all know how much being in this group has
helped. I've had RA now for 19 years, diagnosed and 22. And it has
been a long road for sure. When I read the message about the
stress and how it affects you, it is so true. Going through my
divorce and worrying about insurance really got to me. I'm on
Social Security Disability and have Medicare, but I'm going to need
more than that to pay for all this medicine. But I've found some
programs that may help. But anyway I just wanted to thank all of
you, it's nice to be able to read the messages and be able to relate
to what others are going through too. And know your not alone.
Diane

For those of you who are on SSDI, or SS of any kind, this will make you want to scream!

This journalist discovered this and wrote a series of articles on it, thus forcing the house to launch an investigation, and a series of hearing were held across the country. She ought to get an award of some kind.

House panel hears of dumping of Social Security documents
Trash overflowed with files, official reports
http://www.jsonline.com/news/gen/sep03/172601.asp

Hello,

I have mainly been lurking since joining the list with a few sporatic messages here and there and I have been learning so much.

I was just at my Rheumetologist on Thursday and am a bit perplexed as to what is going on. My rheumatoid arthritis is mainly in my hands and wrists. I have tested negative for the RA factor and x-rays have been good so far. But I guess fluid is starting fill in my joints, so I am guessing that my current meds are not working. On Wednesday I am going for a bone scan and a crap load more blood tests.

I am wondering whay causes the fluid buiild up in the joints and does anyone know what they can do about it? Also - what will the bone scan show? She said I needed it for her to determine how aggressively she should be treating me. My case is somewhat complicated by the fact that I cannot take any anti-infammatories what-so-ever as my stomach will hemmorage.

I am getting somewhat frustrated as I am continually sore, sometimes worse than others, and the Tylenol Arthritis seems to barely help and I am anxious to get onto something that will help. The Plaqunil and Sulphathazine (hope I remembered those correctly) seem to do little.

Sorry for the complaints.

Angela

"No doubt those who really founded modern science were usually those whose love of truth exceeded their love of power."
-- C.S. Lewis

"You can complain because roses have thorns, or you can rejoice because thorns have roses."

Hi, I first posted last week as "Another Newbie". My appointment
with the rheumatologist last Thursday (9/18) was canceled due to the
hurricane. I am rescheduled to go in to see her on Oct. 15th.
Is anyone else's RA affected by the weather? I notice more joint
pain and swelling when there is high humidity and also when the
weather is cooler. This happens in addition to the daily
pain/swelling/stiffness I experience in my joints in the morning and
the evening (as well as off and on throughout the day).
I also experience stiffness in the bottom of both feet. Has anyone
else had to buy different size shoes? Are there any particular
brands that are more comfortable or recommended?
Best regards,
Linda
(Hanging in there in No. VA)

Hello everyone, I 'm still new here, I introduced myself a couple of days
ago... but I figured people here would understand my frustration. I was
calling my lung transplant coordinator (for a different condition) to let
her know about the new dx of RA. She immediately asked if they had checked
that out during all my other testing last year for my lung condition. I
told her I thought they had, and that, although I'm not that far above
normal, my doctor wants to start treatment to keep it low. She finally
found the results and they were above normal, too!! No one thought it
important to mention this to me last year.... it wasn't high enough results,
she said!! I went through knee surgery for NO reason, I now realize. Had I
known it was a little high, I would have gone straight to the rheumy vs
going to my orthopedic guy first!!! UGH!! I'm so angry and frustrated that
they decided what they needed or didn't need to tell me!
Robin

Please use caution when ordering Enbrel anywhere but a reputable
pharmacy.
Look in October 2003 Reader's Digest for an article called "It's a
FAKE and
your pharmacist doesn't know it" by Katherine Eban
It doesn't mention Enbrel, but it talks about other drugs and the
refrigerating of drugs, ordering online, etc. very interesting.
I'm also on COBRA (thanks to being fired from Northwestern Mutual as
a home
office employee saying I'm NOT disabled) <hope no one here carries
their
Disability Insurance because is WORTHLESS as is the whole company
until
December when Medicare kicks in. Social Security does find me
disabled. I
did find that Enbrel and many of my other prescription companies do
have
plans for free meds once you don't have any coverage.
Tamra (34)
-Sero-negative RA - major pain daily
-Cervical Disc Disease (4 level fusion)
-Lumbar Disc Disease (need a fusion - 2 discectomies already)
-(so far, 5 spine surgeries)
-Single mom to a very smart & active 4 year old.
-Cold Climate, chill in the air, worse pain already beginning! - Hi
Lyn! Go
Packers! Wisconsin Also
-Protonix, Plaquinel, Enbrel, Effexor, Concerta, Xanax

Does anyone else wake up in the morning with eyes feeling like they are glued together, yet dry. My opthmologist said that people with RA tend to have concentrated fluids in the morning. I have tried liquid tears without the stuff to get the red out as he suggested, but it doesn't seem to help much. Anyone have any suggestions?

Deb

Sorry forget addy for program info I sent:

Changing the Course of RA: Treatment Update
Understand more about the progressive nature of rheumatoid arthritis
Discover treatment options you might not be aware of
Learn how to protect your joints
Get access to the experts and ask your questions
This program will be held in Denver and broadcast live on the Internet and over the phone.

Date: Tuesday, Sept.30, 2003
Time: 7:30 p.m. - 9:30 p.m. MDT - Live in Denver
(6:30 p.m. - 8:30 p.m. PDT, 8:30 p.m. - 10:30 p.m. CDT, 9:30 p.m. - 11:30 p.m. EDT)

Register: Click here to register for this FREE educational town meeting with RA experts.
There's no substitute for a live webcast - this is your chance to have direct access to the nation's leading experts in rheumatoid arthritis.

http://www.healthtalk.com/registration.cfm?program=rain_093003&net=rain&mid=03092419f

Lyn [INLINE]

"What you see depends on what you thought before you looked."
Eugene Taurman
Autoimmune and Chronic Disease Newsletter

A Program You Cant Miss

Taking an active role in your healthcare begins by signing up and participating in our next Town Meeting:

Changing the Course of RA: Treatment Update

This program will help you:
* Understand more about the progressive nature of rheumatoid arthritis
* Discover treatment options you might not be aware of
* Learn how to protect your joints
* Get access to the experts and ask your questions

This program will be held in Denver and broadcast live on the Internet and over the phone.

Register and mark your calendar today!

Date: Tuesday, Sept.30, 2003
Time: 7:30 p.m. - 9:30 p.m. MDT - Live in Denver
(6:30 p.m. - 8:30 p.m. PDT,
8:30 p.m. - 10:30 p.m. CDT,
9:30 p.m. - 11:30 p.m. EDT)
Register: Click here to register for this FREE educational town meeting with RA experts.

There's no substitute for a live webcast - this is your chance to have direct access to the nation's leading experts in rheumatoid arthritis.
If you live in the Denver area, we encourage you to attend this event live on Sept.30.
Thank you for participating in this program.
The Rheumatoid Arthritis Information Network Team

Lyn [INLINE]

"What you see depends on what you thought before you looked."
Eugene Taurman
Autoimmune and Chronic Disease Newsletter

Where do you get a warm teddy bear Lynn? That's a new one to me.
Re: Canadian pharmacies - I would think if you made sure it was a
reputable pharmacy they would ship it properly. You would want some
sort of references from them, or a guarantee that they would do it
properly. I have heard that there is a quick buck pharmacy or two
taking advantage of the situation but that's not the norm. The drug
companies are making a big issue about supplying some of the on line
pharmacies in Canada because they are losing too much money when US
citizens buy this way.
I assure you most Canadian pharmacies are good (from experience), but
I have only bought drugs a few times from a non storefront pharmacy.
I was trying to save dispensing fees and trips to the store but it
wasn't worth it with a drug plan.
Annette

This is the newsletter from ArthritisInsight.com . I thought some of you might enjoy it. I should say I have no involvment in the newsletter, just a subscriber ! I hope this is ok, if not let me know and I will never do it again!

Lyn

can't be undone. The goal is to get the RA under control and leave
you relatively comfortable. You need to find a really good
rheumatologist. I switched at the urging of relatives to the top
Canadian rheumatologist and it made a great difference, but that
first undiagnosed year left my hands looking like a typical RA
persons' and have now had a few foot operations.

What type of foot operations have you had? My rheumy is talking about my needing feet and shoulder surgery and I would love to hear from those that have had either.

Lyn [INLINE]

"What you see depends on what you thought before you looked."
Eugene Taurman
Autoimmune and Chronic Disease Newsletter

What do i need to ask? I havent got a clue. How could she tell by my
age what type it is? Does she need to do something else to confirm it?
She could tell by your age because osteoarthrits is what they commonly refer to as "old age " arthritis, or it occurs in a joint that has been injured, or after RA has done its damage. RA occurs commonly in people your age. She could also tell by the location . However, my rheumy told me that RA does not occur in the back, so I would question her on that. It may be a different type of arthritis in your back, but I could be wrong. As to your other questions there is a great site to go to that can answer all these questions. It is arthritisinsight at:

http://arthritisinsight.com/

And yes she will do some testing to try to confirm it. She will do some lab tests to see if you have a high sedimentation rate, white blood cell count, and to see if you have a positive RA factor. Although, many people who have RA do not have a positive RA factor. All these things are explained on that site. She will also do a very intense personal history, because alot is garnered from that, almost more so than the blood work. She will also run x-rays of the areas concerned.

As to what to ask....that is all explained on the site, much better than I can do.

I only know all this because I have had this for 20 years...thats the only expertise I have. And I used to run a support group and I do publish a newsletter so I am up on all the news and stuff. I am just a patient too.with RA......

Hope no one minds that I answered this, don't want to come off as a know-it-all since I just joined the group! Forgive me please if I do!

Hope this helps!!

Lyn [INLINE]

"What you see depends on what you thought before you looked."
Eugene Taurman
Autoimmune and Chronic Disease Newsletter

Your experiences sound a lot like mine before I had a diagnosis.
Morning was the worst. I was wearing ace bandages on my wrists at
night they were so sore to move and the bottoms of my feet were so
sore - I felt like the Little Mermaid (you know in the fairy tale she
felt like she was walking on knives.)I was almost crawling out of bed
in the morning, and after a days work would go home and fall asleep
with no energy to even eat dinner.
All the joint damage to my hands and feet was done in the first year
before the diagnosis was made and the agressive treatment was started

Exactly like mine too! It started in my rt wrist, and I remember that at the time I had a car with standard transmission and I had to have my 9 yr old daughter shift the car for meI was a police officer at the time, and I remember that I had to reach over with my left hand to use the radio. I eventually had to quit when my knee went out on a burglary call.. . I couldn't even stand anyone to touch it. That was 20 yrs ago, back before they knew to start dmards right away aggressively. FIrat they put me on tons of aspiring which tore up my stomach. Then tons of prednisone , and if I would have known then what I know about prednisone I would never have let them keep me on a maintanence dose..They didn't start me on dmards for about 3 years, by then there was alot of damage done. Then of course I was swimming deep in the River deNILE, and did alot of damage myself by not minding the docs. They also did not get a positive RA factor for 8 years, which I think made them delay the
necessary treatment also.Plus I had to fight with insurance due to that also. What a mess...I was going through a nasty divorce at the time, had just bought my first new car, and my first house on my own, my Mom had moved in with us and was terminal.....Gee, wonder why the RA chose to strike at that time?

I remember crawling across the floor at 3 am to call the doctor...I mean literally crawling.

Ugh....glad those first years are gone. I don't know if the pain is less now when the RA attacks a new joint, but I think we have learned to deal with it, it's not such a surprise anymore. WHen a flare hits now, I just hunker down with lots of pain meds ( which they wouldn't give back then either), heating pads , my heat-up teddy bear, and a good book til it passes!

Gentle hugs to all,

Lyn [INLINE]

"What you see depends on what you thought before you looked."
Eugene Taurman
Autoimmune and Chronic Disease Newsletter

companies) have some plans to provide the product at free or reduced
cost.
Yes, and the drug companies are mandated by the federal gov. to provide these are either no cost for the indigent, or at low cost for others. Here is also a gov. site that offers personalized info on what is available to you in both private and public drug assistance programs.

( It is a Medicare / Medicaid site, but the info given is not related to just Medicare etc.)

Prescription Drug and Other Assistance Programs

http://www.medicare.gov/AssistancePrograms/home.asp?version=default&browser=IE%7C6%7CWinNT&language=English&defaultstatus=0&pagelist=Home

Lyn [INLINE]

"What you see depends on what you thought before you looked."
Eugene Taurman
Autoimmune and Chronic Disease Newsletter

Hello everyone, I'm new here, and to this diagnosis. I am a 27 year old,
recently
married woman who got a diagnosis via the phone (results of blood tests for rh
factor). I have always had issues with regard to pain and joints. I was
diagnosed in 95
with Fibromyalgia, all the blood tests were negative at that time for any
arthritis. I
got that under control and was feeling relatively good. Long before that, I had
been
diagosed and treated for lyme's disease when I was about 14 or 15.
2 years ago, for no aparant reason, my left knee swelled up. My GP sent me to
an
orthopedic doctor when Ibuprofen didn't do anything. The orthopedic dr.
couldn't
find anything with an MRI, X-Ray, blood tests, fluid removal/testing, nothing.
He
drained the fluid a couple of times and on the third try gave me a shot of
cortisone
and I was good as new for two years....
A year and a half ago, I was diagnosed with a rare but serious pulmonary/cardiac
disease called Pulmonary Hypertension. I dealt with that diagnosis rather well,
started 24 hour treatment that is pumped in to a catheter in my chest. I was
able to
go back to work last year, and was feeling good.
Now it is now and about six months ago, my knee swelled up again. I tried to
ignore
it, but no luck. Went back to the orthopedic doctor- another MRI showed
possible
cartiledge tear and he wanted to take fluid and tissue samples. End result- no
tear to
repair and a LOT of synovial tissue removed that had grown and expanded way too
much. The fluid results and what he saw lead him to recommend I return to the
rheumatologist to check on RA.
Here I am, now, totally confused and overwhelmed. Dealing with one
life-altering
condition was enough, I don't think I can handle dealing with