Remicade Antibodies?

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Jeff Says:
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I was diagnosed with rheumatoid arthritis and ankylosis spondylitis in 1998. By 2000 I was so crippled I could barely walk. Anti-inflammatory meds were dropping my weight and not working. Methotrexate gave me heart murmurs and made me pass out. Remicade was new, not much was known about it, i figured it was worth a try. After my 1st infusion I felt better, I went into remission but stayed on every 8 weeks. Amazing for 10-15 years. At 1 point I had an insurance change, switched doctors. She took me off remicade because I was in remission, also she didn't like the drug and thought it was much too inconvenient to sit through infusions. She felt I didn't need it. I didn't mind sitting through infusions... Within a month I was flaring, tried enbrel, almost died from methotrexate, eventually landed on humira. Great drug, I could tell the disease was active, but I could deal with it. About 5 years into humira I started to develop horrible psoriasis. Tanning kept it at bay, so I went on for another year. Then I started getting flu-like feelings the second week of humira shots. I was receiving shots biweekly. I took myself off humira. Not long after I was in the hospital for shoulder pain, doc thought possibly a clot, ct scan showed nothing except spots in my lungs. After scans and biopsy of the lung it was ruled I have rheumatoid lung nodules. I was put on prednisone, it worked great, shrunk nodules.

My rheumatologist kept me on 10mg prednisone and also another anti-inflammatory. Over a year went past, I couldn't take the pain and sick feeling anymore, so I switched rheumatologists. My new doc is 3 hours away, but he seems great. He immediately started me back on remicade, the next day my psoriasis was almost gone. I had side effects like headache and anxiety, flush, elevated heart, but nothing I wouldn't take over the suffering I had before. When I was on remicade in the 2000s I was never pre-medicated, never had side effects, nothing. Simply felt great! April 2017 is when I started back on remicade, April, May, June were great, then I started to notice the infusions were getting less effective, psoriasis was coming back, but worse of all the dreaded flu-like feeling. Flush, headache, short of breath, nausea, dizzy, fatigue, fatigue, fatigue!! Constant feeling of fever, but never have one. Stiff, mostly neck and spine, it hurts so bad! I still to this day have this, my doc says it's from inflammation and I should start lefludomine to help the remicade from building antibodies. Due to the bad experience from methotrexate in the past I'm extremely hesitant to take it. My doc wanted to boost my remicade few months ago, insurance said no. I now have a new insurance, my doc says upping my dose is a possibility now that I have new insurance. He still wants me to start lefludomine. My girlfriend and I are trying to conceive so the doc says to hold off on the lefludomine for now. I can never get enough time with my doc, he's good just seems to rush me. I bring up antibody evaluations and he tells me my insurance prob won't cover it and he feels I'm not building antibodies, I just need a maintenance drug.

If I'm not building antibodies then why is it becoming less and less effective? I get an infusion now and feel good for 2 weeks, then boom. Tired, flush, nausea, short of breath, headache, dizzy, tired, weak, my voice gets hoarse. My back and neck hurt sooo bad. I can feel the inflammation, it's not nearly as bad as when I'm on no meds, but still bad. I will go through this for a few days to a week, then it goes away. Even my inflammation will get better. I will enjoy life, feel great, but the sickness comes back. Sometimes a week or 2 weeks. I'm down to 7.5 prednisone, I feel it contributes to my problems. I can't get off the stuff because my psoriasis is sooo bad. I feel like my body is fighting with remicade, work, not work. I don't want to start lefludomine if I'm building antibodies to remicade, seems like a waste. My biggest concern is the getting sick all the time. Why? I never use too, it's certainly just been a couple years. During the summer I fight through work, sick feeling, tired, stiff, but still work. I enjoy being physically active, riding snowmobiles, driving dirt track racecars. It's hard to do these things if im constantly feeling so sick. It adds to my reasons for not starting lefludomine, if I already feel sick, adding it can't help. My doc says lefludomine is much better than methotrexate safety wise, and I should be ok on it. Should be... I'm waiting for the infusion where I flop from a reaction. I don't want that. I need help with this disease before it kills me!!

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Ubob Says:
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Wellbutrin has been studied as a TNF inhibitor, inexpensive and nobside effects, have known many people to gain remmission. Typically 300 mg dose. You can Google buproprian and Crohn's or rheumatoid . My good friend was on humara and hydrocodone for years and stopped both and did much better on the buproprian. Will not become a standard treatment as it's affordable and has no side effects.

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Deborah Says:

It sounds like you are having a drastic drop in blood values, much like someone does with chemotherapy because your immune system gets wiped out every 14 days. I could be very wrong, but your current side effects line up exactly like someone taking strong chemo.

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Cynthia Says:
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Wow sounds like you've been through alot for a young man. I'm sorry for all your troubles. I can relate to your frustration. Have you ever tried Celcept? It was the only thing that helped me. I've been on it for a few years, but how can that be good? I hear you about developing a tolerance and being frustrated. It's easy to forget how horrible you felt when your goid, until your not. It's difficult to do life and make plans when ypu never know how you're going to feel day to day. I hope your new rheumatologist works out for you. Hang in there you're not alone!

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Deborah Says:
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Am starting XELJANZ XR hopefully I'll be able to lower dose of prednisone I have bad infection in ankle have been taking antibiotics for last yr need surgery can't have till infection gone Iv had RA for 35yr have tried gold,remicaid infusions and many other drugs no remission have deformed feet wrist mobility issues I would like any information about the XELJANZ before I put myself though more torturing side effects if possible. Thanks

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Deborah Says:

Re: Deborah (# 4)

I don't have an answer for you, but recommend you start a new conversation. I think you'll get answers that way. Good luck and my best wishes that your new medicine works.

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Dheeraj Jain Says:
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I am a chemist in India.
My very close freind is also suffering from psoriatic arthritis since last 18 years.Getting relieved after after every treatment like on methotrexate and once on enbrel for a complete year.Every time the drugs were stopped it kicked back sharply now with visible deformity.
He was feeling very shy in meeting with friends and relatives keeping himself almost hidden in the room.
For last 1.5 years he is on very low cost and effective homeopathic treatment. Dr has told him that treatment will last for 4 years.Slow and steady progress is seen now.
Surprising this winter passed for him almost painless (This was long and very cold winter this year in our area )
Now he has got confidence in himself and ready to face any situation
I suggest you to move on homeopathic treatment

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MrsJensen Says:
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I found this thread looking for information on Leflunomide as I was just switched to it from methotrexate. You mentioned the prednisone and your Psoriasis.... have the doctors mentioned to you that the systemic steroids worsen this? I suffer from Palmoplantar Pustulosis and psoriatic arthritis. The pustule Psoriasis outbreaks were so bad I was begging to be put on prednisone to keep it at bay, it was explained to me, and you may already know, that once the steroid is out of your system there is a “rebound effect”. And the Psoriasis attack is ten fold. With my doctors advice, I went off prednisone all together. It was a rough month, the pustules are painful and raw. I kept using my topical steroid to get through the worst of it and eventually eliminated all systematic and topical steroids from my regimine.

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