Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications My Remicade Experience...

Hi all! i posted way back last summer sometime about Remicade. He're an update.

I started Remicade last May. My Rheumy prescribed 300mg but the doc who looked after the infusions only gave me 200mg.
Then after the loading phase of 3 infusions in 6 weeks I saw my Rhuemy who said my chest espansion and spine were moving better (despite the doc was supposed to give me 300mg.) But I didn't have any reduction in pain and was still awfully stiff about 3 hrs in te morning.
She said she would call the doc who was looking after the infusions and tell him to give me what she pescribed. That was in September. Well it was The last week in January before I got another infusion. I noticed about 10 weeks after the last one I was getting a lot worse than I was before I ever took Remicade. Is this normal? Does this mean it was working?
I saw my Rhuemy again March 15 and she said it I have improved. I told her I'm still having the pain and stiffness. I also have been having bad spells of fatigue where I can barely get out of bed. I asked her about that and she didn't say anything about it either way.
Also, since I started it last May I've been having awefull pains in my ankles, legs, knees and wrists and cold chills. And also wicked muscle spasms in my feet, ankles, calves, thighs, back, sides and stomach. Does anyone else havew these probs since they started Remicade?

Now I should have had an infusion last week, but now I'm waiting again. Getting more sore and stiff again the last 2 weeks. I'm at the point of telling my Rheumy to forget it 'cause it's too much of a hassle.

Also been very anxious and depressed about the whole thing( I have a history of that anyways, but it doesn't help).

I would love to hear some input

Thanks all for the great discussions!

Todd

Hi there Todd,
Sorry to hear thet your struggling along with your Remicade. I stopped taking Remicade 8 months ago, due to raised ALT's. After six months without Remicade I've started again on a lower dose basis, 100mg every six weeks. Not feeling any better at the moment though & am probably experiencing the same emotions your going through, whether or not I'm doing the right thing? After I stopped taking Remicade the first time I'm sure I felt a bit of a come down, joints flared up for a while & then seemed to settle back down to normal, perhaps it was my body readjusting to life without Remicade. Similar feeling to when I stopped taking NSAID's, not quite a severe though. I had to stop taking NSAID's over 5 years ago due to stomach probs. Really ached when I stoped taking them, settled down after about a month. At the moment I too feel like a guinea pig, don't know which way to turn, should I continue on with the Remicade or not?

At the moment I'm suffereng from mouth ulcers & a saw tongue, which may or may not be anything to do with Remicade, as I've always had probs with mouth ulcers on & off, not tongue probs though. I'll have to mention it to my rhemy dept on my next visit, I may take some folic acid, which may help.

I too have probs with anxiety & depression, on & off, not taking any anti depresssants for it though. Some days I feel on top of the world & the next (like today) scraping the bottom of the barrel. This on & off thing with the Remicade hasn't helped me either. I'm sure we'll both make the right decision in the end, perhaps we'll both have to revaluate our situations after 6 months? Do we feel better for Remicade taking it or not?

Hope your feeling better in yourself soon, let your rheumy dept know how your feeling. Some Dr's & nurses are better understanding our needs than others. Sometimes it helps just to talk.

Take care.

George.

Todd,

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I started Remicade last May. My Rheumy prescribed 300mg but the doc who looked after the infusions only gave me 200mg.

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Maybe the protocol is different in Canada. When I received Remicade it depended upon how much I weighed. A total amount of 200 mg. seems low.

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Then after the loading phase of 3 infusions in 6 weeks I saw my Rhuemy who said my chest expansion and spine were moving better (despite the doc was supposed to give me 300mg.) But I didn't have any reduction in pain and was still awfully stiff about 3 hrs in te morning.

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Hm, initially Remicade had little effect upon me that I noticed. It was after the fourth infusion that I noticed a reduction in pain and stiffness.

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That was in September. Well it was the last week in January before I got another infusion. I noticed about 10 weeks after the last one I was getting a lot worse than I was before I ever took Remicade. Is this normal? Does this mean it was working?

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Remicade gets removed from the body. If you had none in a 10-week period, I would say that there is none to effect you.

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I saw my Rhuemy again March 15 and she asked if I had improved. I told her I'm still having the pain and stiffness. I also have been having bad spells of fatigue where I can barely get out of bed.

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I, too, had increased fatigue after I stopped taking Remicade. I noticed a significant reduction in fatigue when I started a different monoclonal antibody, an effect that has persisted.

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Also, since I started it last May I've been having awful pains in my ankles, legs, knees and wrists and cold chills. And also wicked muscle spasms in my feet, ankles, calves, thighs, back, sides and stomach. Does anyone else have these probs since they started Remicade?

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I have wicked muscle spasms (now taking Zanaflex) although I had them before I started Remicade.

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Now I should have had an infusion last week, but now I'm waiting again. Getting more sore and stiff again the last 2 weeks. I'm at the point of telling my Rheumy to forget it 'cause it's too much of a hassle.

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Unfortunately, anti-TNF therapy fails to help people with AS sometimes. My impression is that in studies with the best reported outcomes, something like eighty percent of the study group improved. So, that means that twenty percent did not improve.

When I was trying to decide whether to try anti-TNF therapy, I looked at the results being reported and noted that they were better generally than the results for other drug therapies, e.g., sulfasalazine or methotrexate.

I tried those other approaches first without a positive result. I experienced a positive result from Remicade. I stopped taking it because my body quickly developed antibodies to it so that I would have a reaction during each infusion.

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Also been very anxious and depressed about the whole thing

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Yep. I too have a history of depression and the pain and fatigue from AS makes such problems more difficult with which to cope.

Best regards,

jcwinnie