I have been on Remicade since August 08. I get it every 4 weeks. I would like to hear from others who are getting it or have gotten it in the past and how it worked for you. I am still in terrible pain every day and am looking for answers.
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Untitled Comment
Lene Andersen
Thursday, February 12, 2009 at 11:55 AMLene's comment about joint damage - yes
Ellen
Wednesday, February 18, 2009 at 10:32 AMForgot to mention, I have that problem with my right wrist, there was damage even before the RA diagnosis was definitive (dr. thought I had 'just' fibromyalga, until my wrist swelled halfway up to my elbow, and ESR doubled). At first the Enbrel & Celebrex got my wrist flexible and painfree for a while, but 1 1/2 years ago, I suddenly got extreme pain there that nothing would touch. Turned out (dr. called it osteo, but it's due to the damage from RA too) my wrist & carpal bones now look like swiss cheese, and my wrist bends very little. I wear a splint mostly 24/7. I can consider replacement or fusion (that's another whole question), but after a couple surgeries last year elsewhere, I'm ready for a break for a while!
Ellen
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Remicade has worked wonders for me...
Ruthe
Thursday, February 12, 2009 at 03:55 PMI have been on Remicade every 8 weeks since July 2006. It has helped quite a bit. Lene is right that we can still experience problems based on the damage done to our joints, tendons, etc. My orthopedic doctor said that he sees damaged tendons on pts using the biologics or other meds. It is not something we can avoid and since I use a computer for my job, I give my wrists quite a workout. All in all my quality of life has improved considerably on the Remicade. I had crushing fatigue that made me tired every day no matter how much sleep I got. The Remicade has restored my energy and for the most part handles the joint pain. "terrible pain every day"...for the past six months tells me that Remicade is not your med. If it was going to work, you would've noticed improvement by now. It took me a couple of months to feel really better, but I still noticed improvement even after the first infusion.
re: Remicade has worked wonders for me...
KACK
Friday, February 13, 2009 at 08:57 AMThank you for replying. I see my rheumatologist in March so maybe he will change me to something else. I thought maybe I was expecting too much from the medication. Thanks again Kathy
re: re: Remicade has worked wonders for me...
Ruthe
Friday, February 13, 2009 at 01:31 PMYou are very welcome, Kathy! Sure hope you find the right med that will give you a better quality of life!
re: re: Remicade has worked wonders for me...
Ellen
Wednesday, February 18, 2009 at 10:28 AMI have to agree with the other replies - I was first put on Remicade but ironically it was too strong for me, I had all inflammation disappear during the 10 days after the second infusion. But because of other issues/reactions, I refused it further. But - 2 months later, right on schedule, it started to creep back. A couple of months after that, I decided to try Enbrel, because I wouldn't have to travel 70 miles to the Rheum., could do it myself and be more in control. Enbrel works pretty well for me, though now, 4 years later, I'm beginning to wonder, because I'm getting more fatigue and depression. For me, the pain seems to hit after the depression.
I have talked with some folks who didn't respond well to standard RA drugs, but have done better (slower by steady) with the antibiotic therapy (The Road Back (about Dr. Brown's work- see book, website) and www.cpnhelp.org). Most rheumatologists seem to ignore this possibility, but it DOES work for some, I think especially patients who don't respond otherwise, and I think I remember reading or hearing, they tend to be seronegative, i.e., they are negative for Rheum. factor. But I'm not a health professional, just passing on what I've read and heard from living patients.
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I am not on Remicade, but I have tried a number of medications throughout my life with RA. There are two kinds of pain with RA: the pain of active, flaring RA and the pain that results from damage done to your joints by the inflammation. If you're in pain because your disease is not controlled, you need to speak to you rheumatologist about increasing the dose of Remicade or perhaps trying another kind of drug. However, if your disease is under control, but you're still in pain, it's probably coming from the damage to your joints. You still need to speak to you rheumatologist, but s/he may look at other ways of managing that pain, e.g. referring you to a physiotherapist who can help you with exercises or splints, maybe an occupational therapist who can help you with various tools that can make your life easier,, really good painkillers and if all else fails, joint replacement may be an option (don't be scared, a joint replacement can be a good thing).
Your first step is definitely to make an appointment with your doctor to discuss the issues. Please let us know how it goes.