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Anybody Taking Remicade... (Page 1)

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I hope somebody out there can help. I'm ordinarily a pretty fit girl and I work out regularly but since I started taking remicade 6 weeks ago, I have gained around 15 pounds and every time I try to workout, my muscles and joints hurt badly. Has anyone else experienced this reaction to remicade or is it all in my head. I'm trying to get some insight before I go complaining to my doctor. :?:
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First Helper Ssprymom
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Users who thank luvandfishes for this post: motown 

replied July 15th, 2006
I took two single infusions of remicade a few times over a year and it worked great for my crohns it was a mirical for putting me in remission.
Then I tried a infusion after not having it for over 2 1/2 years and seemed to put me back into remission once again. However about 3 weeks later I felt like what I imagine a sprained ankle would be like two days later it was both my ankles and my knee's in pain. I first went to the doctor and they were going to send me to physical theraphy, two days later they thought that I was getting the arthritis associated with crohns. After going home from the doctors not thinking arthritis assocated with crohn's could come on that quickly and looking in my crohns books as well as online I decided to call the on call gastro doctor as the pain was starting up in my elbows also. Good thing I did what I was experiencing was a classic delayed allergic reaction from the remicade he told me to get to the hospital asap or I would not be able to get out of bed the next day. (who would have thought 3 weeks after the infusion) after a couple days of prednisone I was back to normal. I don't know if this is similiar to what you are experiencing but I would definately be contacting my gastro doctor about it if you are taking regular infusions of remicade as this is a side affect.
For me this is the second medication that I reacted with joint problems so maybe that's just how I react. The first one was penicillian 30 years ago when I was taking it for a strep throat. It's really a shame as both of these medications can work so well. So back to my 6mp, pentasa, or prednisone treatment when I have a flare.
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replied July 15th, 2006
Thanks Ssprymom
Wow. I didn't realize that reactions could take so long to present. I'm to the point of complaining. I think the next step is surgery if the remicade doesn't work out. Pentasa and prednisone did some sort of funky thing to my liver. I don't remember what b/c I was in the hospital and they wouldn't let me have food...A little incoherrent. I feel really embarrassed bugging my doctors, like I complain too much or something.
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replied October 2nd, 2012
Don't EVER worry about bugging your doctor! Remember that YOU EMPLOY HIM! You pay him to do a job and his job is to listen to your complaints and concerns and work WITH YOU to find a treatment that works for you while doing his best to minimize side effects from the prescribed treatment and relieve not only your physical pain but any concerns or other symptoms(ie. Depression, anxiety, sleeplessness etc.) that often occur with this type of difficult illness.

Good luck with everything! I hope you feel better VERY, VERY SOON!!!
-Lolleedee
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replied January 16th, 2007
Re: Thanks Ssprymom
Hey, i've taken many infusions of remecade, the first couple were tremendously successful; gained a stone and genuinally felt way better! I suspect my body may have grew an immunity to the drug, as after a 6th/7th dose its wonder's disappeared... But is really good for giving boosts of health to those with crohns.
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replied July 17th, 2007
Remicade Reaction?
hi,new to board.after my last infusion of remicade(june 18)3rd one,a week later i went from feeling well to extreme tiredness,bad joint and bone pain,some breathlessness and feeling of heart beating really hard.tell tail signs of a reaction except my doctor says you shouldn'treact when already taking prednisone and 6mp(which i've been on for years).had 2decho today to check heart and bloodtests to check for antibodies and will be waiting anxiously for results.has anyone else had a reaction while taking these meds??????
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replied October 11th, 2007
Remicade Reaction
Hi Debidoo,

You may no longer need a response and I hope that's the case and that you are feeling better now, but I had a pretty rough time after my first remicade infusion on 9/7. On the 13th, I started out the day having pains in my back, stomach and just generally felt bad all day. By the time I got home from work, I started with bad flu like symptoms and fever and every inch of my body hurt. I was taken to the hospital and things went down hill from there. At some point in the ER, I became tachycardic, my blood pressue bottomed out and I stop breathing. I spent the next 10 days in the hospital, 6 of them in the ICU. I am now recovering but certainly slower than I had hoped and all we know is that I had a severe reaction to remicade that wasn't an infection. Obviously, I am no longer a candidate for Remicade but for the ones of us who react to this medication it can be pretty severe at times and in my case and many others, almost deadly. I apologize for this sounding so negative but for the ones of you having similar symptoms, please proceed with caution and for the ones of you having success, I am thrilled for you but please be careful if you start to have side effects as time goes on. Anyway, good luck to you!
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replied October 15th, 2007
Remicade
thanks for the replies.i am no longer taking remicade.two hospital visits and 6 weeks of feeling awful was it. i had muscle and joint pain after my first 2 infusions as well but it was tolerable.i figured it was an okay trade off for actually having some energy.i am still taking 6mp prednisone celebrex codiene nexium fosomax b-12 injections and cipro and flagyl.i will be trying humira next.my doctor says there is a good chance i will not react to this as it is not made from mouse bits.i will let you all know if it works as well as the remicade. keep fighting,debidoo
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replied October 15th, 2007
Remicade
Hi again Debidoo. Just to let you know, I have used both Humira & Enbrel with no bad side effects so I hope the Humira will be the ticket for you. For the record, and I had meant to tell you earlier that I have been taking between 7.5 - 10 mg of prednisone for a very long time, so it doesn't seem to stop the effects of Remicade for all us. The question that I have for you is on the previous email you had mentioned that your doc was doing some blood work for antibodies, what did they find in regards to this? Out of curiosity, has anyone else had conversations with their docs. regarding antibodies and Remicade?
Kelli
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replied October 20th, 2007
Ssprymom wrote:
I took two single infusions of remicade a few times over a year and it worked great for my crohns it was a mirical for putting me in remission.

Then I tried a infusion after not having it for over 2 1/2 years and seemed to put me back into remission once again. However about 3 weeks later I felt like what I imagine a sprained ankle would be like two days later it was both my ankles and my knee's in pain. I first went to the doctor and they were going to send me to physical theraphy, two days later they thought that I was getting the arthritis associated with crohns. After going home from the doctors not thinking arthritis assocated with crohn's could come on that quickly and looking in my crohns books as well as online I decided to call the on call gastro doctor as the pain was starting up in my elbows also. Good thing I did what I was experiencing was a classic delayed allergic reaction from the remicade he told me to get to the hospital asap or I would not be able to get out of bed the next day. (who would have thought 3 weeks after the infusion) after a couple days of prednisone I was back to normal. I don't know if this is similiar to what you are experiencing but I would definately be contacting my gastro doctor about it if you are taking regular infusions of remicade as this is a side affect.
For me this is the second medication that I reacted with joint problems so maybe that's just how I react. The first one was penicillian 30 years ago when I was taking it for a strep throat. It's really a shame as both of these medications can work so well. So back to my 6mp, pentasa, or prednisone treatment when I have a flare.


I think I've been experiencing a similar allergic reaction from Remicade too! My ankles have swelled like crazy and turned bright red (so bad I couldn't walk) and now my knee had a huge hive on it and has become swollen. ANyone else?
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replied November 14th, 2007
Remicade
I was in a trial for Remicade. When the trial ended I had to pay for my Remicade. The drug was not covered by our government plan in Canada; so, I sold my home to pay for the next two years of Remicade ($90,000). I thought it was worth it to have remission be there for me and no more prednisone or methotrexate.

Well now I am sitting waiting to go back to the hospital to have a look to see if they are going to bag me. Now I wonder if it was all worth it.

The prednisone has given me uveitis. I now have arthritis and spend a great deal of time feeling very very tired.
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replied March 25th, 2011
Could you tell me please how long you had to be on Remicade. I am just setting up the process and thankfully will have it covered here in Alberta.

I am curious as to why you are now waiting to see if you need a colostomy? Is Remicade not effective for you anymore?

Wendy
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replied July 26th, 2011
Wendy,

I have been on Remicade for 6.5 years. It continues to be a wonder drug for me. I am also in Alberta.
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replied November 20th, 2007
Remicade Reaction
Crying or Very sad I am glad you mentioned having a reaction after 3 weeks. I just had a remicade infusion 8 days ago, and had a terrible reaction. I went to the ER, and they told me it couldn't possibly be a reaction to the remicade after 7 days. They wanted to have an orthopedist look at me the next morning. In the meantime, though, I would be given NO pain meds - not even an aspirin. I went home, where at least I have some percocet I can take. But, I still hurt like the dickens. I gues I just have to wait for it to wear off. The sucky thing is, I was feeling better for the first time in years with relation to my Chrohn's.
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replied February 16th, 2009
Remicade reaction
Hi- I found this site after searching on Remicade reaction. I had my first loading dose for this round two weeks ago. Last week, on Tuesday, I had shooting pain coming down as if from my groin on the right side. It hurt and I could barely walk for a day, then it shifted to my left knee and both wrists. I went to my beloved chiropractor and he did an adjustment, but also suggested I follow up with the MD. I had blood drawn and he did a stat CT scan to check on my appendix. All was normal. On Friday I could barely lift my left arm. The pain was all up my wrist and arm and I had no grasp strength in my left hand. On Saturday all pain was gone. Thinking it was a one-time fluke, I went ahead with my scheduled second dose today. About 30 minutes into the infusion, my chest got tight, my head was spinning and I began to vomit. The Dr. had the infusion nurse give me IV Benadryl and we continued the treatment without further episode. After reading these entries, however, I am convinced the pain will come back and I am really dreading it. I don't understand because several years ago I used Remicade with no side effects whatever. Since my previous use, though I have been in early menopause (45y.) Does anyone know of any studies relaying to hormone changes? Thanks!
Tamara in GA
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replied March 11th, 2009
Remicade Reactions
Hi- I'm two out from my 2nd infusion and am having crazy pain in my tailbone that doesn't seem connected to anything. It may be an inflammation indicating the Crohn's is coming back, I don't know. I'm going to give it a few more days.

To answer Tamara, my GI told me that if you go off of Remicade, you can't ever go back on b/c your body will have likely built up antibodies to it. That may be the issue in your case.

I would also encourage everyone to always get a second opinion on anything major, even if you really like your GI doctor as I do, & to never, ever, worry about what your Dr. thinks of you! You must advocate for yourself! We are all entitled to be as healthy & pain free as possible, so don't feel like you'd be complaining.
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replied March 24th, 2009
Remicade
I have been getting remicade for the past 4 years and over the past year I have been getting bad acne all over my body(back,chest,face,head) and I was wondering if anyone has gotten any similar reaction like I have. I have asked my Gastro, Dermatologist and the people who assist the Remicade infusion and no one has any idea. If you or someone has gotten it please tell let me know and if and how you can treat it.
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replied May 21st, 2009
My reaction to Remicade
Hi, I am 29 years old female and have been diagonised with sero negative spondylarthritis. I had 3rd infusion of remicade on 2nd May 2009. I didn't have any reaction or side effects. I went from having pain from 10 to 0 after the 3rd infusion. i felt so gud that i didn't even need any pain killers. But from past 2 days (20th day) after my 3rd infusion, i am getting my pain back in my left hip joint.... i am hoping... it will go away... i was doing perfectly fine until 2 days back... i am regularly taking medication as per doctors advise... I spoke to my doctor today and he changed my pain killer... i hope it works... i am not having any side effects of remicade like headache/skin rash... till date "Touch Wood".
I hope my pain goes away.... i am going think positively... and see what happens... I don't now if it is from remicade!!! I hope it is not!! i saw one person in this group having same problem after 3rd infusion. Can some one help me what i should do next? I am seeing a good rheumatologist... he says that i shouldn't be having this kind of pain... he says it could be bcoz i strained myself... but i didn't do anything different... I am going to think positively and be strong... i am going to get out of this problem... I'll try to consult few other specialists....
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replied May 28th, 2009
Hi everybody
I am on remicade at the moment and after reading this...to be truthful a bit scared...well immuran and 6mp didnt suit..i got drug induced pancreatitis...the docs are planning to keep me on methotrexate after this
Is there anybody who has not reacted to Remicade.
Take Care Everybody.
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replied June 8th, 2009
Remicade - Swollen Ankles
I just had my 3rd infusion of Remicade for UC. Everything seem to be coming along great until then. My UC was becoming manageable and I seem be be tollerateing the Remicade. My Gastroenterologist decide to put me on Remicade after a 2 week stay in the hospital for Pancreatitis (cause by Sulfasalazine), severe Ulcerative Colitis flare-up and on top of that C-Diff (caused by my Prednizone. We determined I had become Prednisone dependent and my only option was sugery or Remicade. We after the 3rd infusion my left ankle swelled and a red spot the size of a half dollar appeared. The pain the second night was unbearable! I almost went to the emergency room but suffered through it. Well, on Tuesday 5 days later I finally got to see the DR. and he seemed to think it was a bug bit. I don't think so but anyway he put me on antibiotics. We 7 days later after the first swelling my right ankle did the same thing and just as painful. I call him and he thinks it's Gout. Well, imune suppressing drugs can cause Uric acid levels to rise I have read but I don't believe it's gout. It's going away now ao I guess I will wait and see if anything else happens this week. Oh,also I develope pain in my lower back that was very painful for 2 days then it went away. So, it don't really know how to feel about this drug. It has help my Colitis but are the side effects worth it. I am seriously thinking onbout the J-Pouch surgery.
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replied June 8th, 2009
I am ok on Remicade
I have been on Remicade for a year with no reaction so if people are reading this don't be scared. I am so sorry for those of you that had the bad times from it, but to those who are going to try it, I just thought I would let you know I'm fine! however today the reason I am on here is that I feel a little flu like symptoms, just back from the u.K and scared I have swine flu but just had my infusion today so who knows !!!!!!!!!!
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replied June 10th, 2009
Remicade
@lisajames
Your reply really helped me...I already was wondering whether i should continue on remicade....now I think I will continue and see what happens.I hope its not Swine flu....Get well soon.
The negative experiences did help get men tally prepared on what all can happen.....Thank You everybody...now i know when i should get careful.
Take care Everbody
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replied August 8th, 2009
I have been on Remicade for over a year now and just these past few months I am having the worst joint pain. It moves around from my elbow to my knee to my toes - some days my toes are so bad, walking is really painful. I phoned my GI and he told me it was Crohn's induced arthritis - but the more I read on these Remicade sites, the more I am convinced it is the drug. I guess it is a trade off - horrible joint pain instead of running to the toilet, pain and vomiting...Anyone else have this awful joint pain that moves around from one joint to the next?
Carolyn - 45 years old - 14 years Crohns - one small bowel resection
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replied January 12th, 2012
please help
Hey everyone. I'm scared to tears. I've had crohns since I was 9. For 21 years I've been self medicating with prednisone. I feel health. No pain. My last colonoscopy showed severe inflammation yet I feel fine. Now my doc wants to put me on remicade. Does that make sense to you guys? Were u all sick prior to remicade? We haven't even tried anything else like pentasa or sulfssulzane. Your thought please! Oh and when I take prednisone its 25 mg got 4 days then wean off 5 mg ever 5 days. Thanks all
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Tags: muscles, joints, head
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