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Remicade for RA , pro or con?

Posted by redclaygirl (My Page) on
Mon, Jan 8, 07 at 0:26

I have had three i.v. therapy treatments of remicade for my RA. My Dr. has tried other drug treatments before this without success. Remicade does lower your immune systems' ability to fight infection--I have had a bad cold, streph, pnemonia, now, I have sinusitis. With this winter being what it has been here in Ga. (one day cold, one day hot, the next day cold and rainy) I have had the worst time staying well. It all started Thanksgiving -- and I am sick of being sick! My Dr. says it is because of the remicade. My RA is so much better, but gosh, the cure almost feels as bad as the disease. I don't know what I should do, stay with treatments or what. Anyone ever had this problem? I have joint damage from RA, and I would like to stay on remicade as it helps so much with pain, mobility, and stopping futher joint damage.
Thanks, Ellen


Follow-Up Postings:

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RE: Remicade for RA , pro or con?

I wouldn't want to be stuck that way. Have you ever thought of going to a health shoppe? B-5 (Panathenic Acid)
has taken people off of a walking cane and some from a bedfast position with arthritis as far as the pain. Many have used Glucosemine (I believe I spelled it right) to build up the joints and keep, from more joint damage.


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RE: Remicade for RA , pro or con?

Hi, gojo. Yes, I do take glucosemine, and have for many years. I have never taken B-5. I take folic acid which is a B vitamin but that is because I am on Methotrextrate along with the remicade. The folic acid helps with stomach upset and naseau from methotrextrate. I will try the B-5. I am afraid to come off the remicade as I am walking again without aid. I have decided to talk to Dr. to see if we can lessen frequency of treatments. Thanks for caring. I will try the B-5. At this point I will try anything. Yes, the pain can be unbearable at times.
~~Ellen~~


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RE: Remicade for RA , pro or con?

I haven't taken Remicade because I have CHF but I take methotrexate @7 per week, 5mg prednisone daily, naproxen 3X a day at 500mg, plaquenil 2X a day and folic acid for my arthritis. I'm also so much better from the meds I take. Maybe you should try something else for awhile. I took glucosimine chondroitin sulfate before it was finished being tested. My doctor recommended it because he didn't believe in giving prescription drugs for arthritis. This was before I was diagnosed by another doctor with RA. I also have osteo, I imagine most of us with RA do. I have tried going down on the naproxen and prednisone but I can't. So far with this recipe I'm doing well. I hope you feel much better soon. The bad thing is that the RA is in itself an autoimmune disease which makes it so easy for us to catch everything going around.

Nancy


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RE: Remicade for RA , pro or con?

Ellen,

Sorry to stumble upon this thread so late but here goes:

I've had RA most of my life. Juvenile RA as a child and returning in mid twenties. Not overly active compared to a lot of others but enough to cause gradual damage over the years. I had knee replacement surgery in 2004 and immediately went into severe roaming joint pain that would not go away. Reumatologist put me on the treatment similar to Nancy's outlined above which by the way, all those meds are immune suppressing. Her treatment is almost exactly what I was given except for the pacquil. I was on Remicade instead for about a year. Starting in Jan of '05 and stopping in December of '06 after a severe bout of flu. It was so bad I was sick for 6 weeks and for awhile thought I would have to get better to die. He kept adding meds but never taking any away. My immune system must have been down to nothing. That's when I decided to look for something else. I ended up going to an allergist who also recommended natural hormone treatment. My thyroid was non functioning and no hormone level to speak of, of any type. These are natural hormones, estrodiol, etc. not the HRT normally prescribed by your doctor.

I've been on this regimen since the fall and am back to my presurgery level of discomfort. (periodic soreness and
stiffness but without the occassional severe attack I was experiencing in my knee) It seems to be working for me and I thought it well worth the effort to try it out. I don't really know if the hormone treatment did the trick or eliminating foods that caused mild allergic reactions or both. I do know if I overindulge in certain foods I will have problems. My triggers seem to be dairy and sugars. (I especially like ice cream but can no longer indulge.)

It really comes down to whether or not you want to experiment with various treatments that are less (in my mind) lethal or continue to undermine your immune system with all those drugs. Also bear in mind that my RA was only extremely painful on rare occassions. This might not be the case with you. I know from the times my knee hurt so badly, that you will do almost anything to alleviate the pain and at those times the fact that your immune system is compromised is not important.

The decision to look for other forms of treatment is entirely a personal one and I wish you luck in whatever you decide to do.

Pat


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RE: Remicade for RA , pro or con?

My brother was on Remicade for (excuse the spelling Ankalising Spondliosis) He was in rough shape, could hardly move. The Remicade was wonderful. However after several infusions he started to have alergic reactions to it and with each infusion relief wasn't lasting as long. Finally they decided it was not safe for him to continue. He was devastated. His doctor now has him self-injecting Humira every two weeks. It seems to be working and so far no side effects or allergic reactions. Self injecting was a little scarey at first but he is now a pro at it. There are options for you. Talk to your Doctor!


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RE: Remicade for RA , pro or con?

Hi everyone, just came across this forum. I have had the initial dose of Remicade (which was about 4 infusions 2 weeks apart) and just prior to my next infusion date I developed loss of vision in one eye. I have had an MRI and electro-physiology testing to find the cause. At this stage Prednisolone has reversed the optic neuritis and I am about to start the treatment again. As no one is able to say it was definetly the Remicade this is the only way of knowing if it was. Remicade was great for RA and my Crohn's so it would be a pity to not try again in case it was a "one of" problem. Has anyone heard of this before?

Kathy


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