Side effects! Remicade

Well I’m going tomorrow for blood work . The levels and the antibody test for Remicade. Arthritic pain seemed to go away at the 3 week point. I don’t know if you call it a sore throat or just an uncomfortable whatever when swallowing.
Acetaminophen helps. I really haven’t felt good since going on this every 4 weeks of Remicade. My UC is great otherwise. Are these normal for people taking Remicade? I sound like a hypochondriac.

Faith
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Faith, no you don't sound like a hypochondriac. I had my own issues with Remicade the last year I was on it. It was wonderful for me while it lasted. I saw on the other thread the headaches got really bad & you had to drop the plac., sorry that happened. We have to listen to our bodies.

Have you ever tried Remicade every 6 weeks? I can't remember if you went that route or not in the past. Keep us posted on what the labs show. If you & the dr discuss changing meds, I would discuss Xeljanz.

Take care.

Remicade only worked for me for 9 weeks, after which I went right back into a major flare, so I can't comment on the side effects but they do sound like antibody side effects to me. Let us know what the bloodwork shows.

I would always take two Benadryls when I got home from an infusion and sleep the night away.

You should let your doc know about that reaction. Even if the test comes back with low antibodies and high remicade levels he might want to have you pre-medicate before your next infusion.

I think the last time I had that test it took about a week to get the results. I called the lab directly and got the results -- I didn't wait for the doctor (I am impatient).

Based on the what you said about the previous test I am surprised the doc even kept you on Remicade at all with antibodies that high. You might want to start thinking about other options in case you need to come off of it.

That sounds scary! I'm sorry you had to go through that. I don't think I'd stay with a medicine after that in addition to all the other issues it seems to be causing you. Yeah, that antibody and levels test is a slow one for the results.

I think a change is in order. Thought i was going to stop breathing last night. Still not right 4 days of 40 mg of prednisone starting today . My voice is way off. Hope i feel better soon i have friends coming Thursday for a week. There really isn’t anything to take to alleviate all these side effects. Last infusion i had a sore throat and bad arthritis for 3 weeks. Really sucks!

I developed Lupus - drug induced lupus. I felt like i was crazy and a hypocondriac. The fatigue and arthritis pain was immense. My hands hurt so bad that pullling up my covers at night was torture. Remicade worked beautfully to control my UC. It was sad to go off. It took about 6-8 months for the Lupus to go away. I wish they would have tested for it sooner. They told me that the pain I was having was probably not from the Remicade. I know it is rare but it is a thing.

I had to stop Remicade. It wasn't helping my UC symptoms much and with each infusion, I was developing a larger allergic reaction. I had vomiting, diarrhea, rash and itchiness at the time of infusion. They would slow the drip down to decrease the reaction. I was at the infusion center for over 8 hours to get the infusion done, while vomiting, etc. It was miserable, and so treatment was stopped.

Fathmac,

According to what my GI and the infusion office have told me.... The throat swelling, clearing your throat, coughing, sneezing, hoarseness...and then there is the rash, itchiness and skin issues, plus possible headaches and nausea.... They are all indications that your body is having a reaction to Remicade. It can be very very dangerous. You need to speak to your doctor about all of this. Personally I would have liquid Benedryl at my side just to be careful. I have an epi pen because I am allergic to ragweed and shell fish. My GI told me to keep that with me until he told me not to. (It's been over a year and I still carry it around with me---but I've gone into anaphylactic shock before (flagyl,) so we are being extra careful. I haven't had to use Prednisone for a reaction.

My GI said that since I had antibodies of 8 and then 13 we would put me back on methotrexate once a week. The mx amount varies from 10 (2.5 mg) tablets to 5 tablets. For me methotrexate knocks down my antibody level to 0. (I have slowly decreased the mx dosage.) Then they raised the amount of Remicade and shortened the time frames between infusions. (10 and 4) They changed the timeframe from 3 hours to 4 hours for the infusion and added a large bag of saline to run concurrently during the infusion. The pump is then manually set so that it stays at a steady pace and does not speed up or increase the amount of Remicade infused. Doing all of this increased my Remicade levels above 10 to 13 and hopefully my antibodies will continue to decrease. So far it seems to be working. I am now at 7.5 every 6 wks with 5 mx tablets a week. It was a very rough and scarey 6 months before the symptoms got better. It continues to improve for me. But it's scary . It's not the way my GI would usually treat a patient but because I keep having severe allergic reactions to medications he is very hesitant to change me from what's worked in the past. He told me I could stop the benedryl at home but I just don't feel comfortable doing that yet... So I take it every 12 hours for 24 to 48 hours after my infusions. I will stop taking the 4th dose this infusion... Then I'll delete another dose after the next infusion and so on.

They have explained the pros and cons and the risks. We decided this was the best way forward for me at this time. I'm 63. We are hoping to get another 3 to 10 years from the Remicade. My last scope showed no active UC or Crohn's from my colostomy up. There was narrowing, thickening and scar tissue from before my disease was controlled.

Regardless... This is a very dangerous slippery slope. There aren't any guarantees. You never know when that reaction is going to get really bad. Flagyl made my whole world go gray and the last thing I heard was code blue. I'm just grateful I was already in the hospital when it happened. I recovered but it was really scary. (Epi pen like shots in both thighs and I don't know what else cause I passed out from lack of oxygen.) Please speak to your doctor and ensure you have as much support as possible.

The only reason I agreed to this path was because of a series of sudden allergic reactions to medications I had taken for years and my severe fistulizing UC/Crohn's. We fear introducing a "new" drug to control my disease. It will be done as a last resort.

I wish you the very best of luck and pray that you are able to keep your disease in remission.

Clo

Clo

Ok! Just got the lab results. Not very good!
Antibody 46
Remicade level 15

I think that might be pretty bad

Faith