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Anybody Taking Remicade... (Page 2)

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September 11th, 2009
chrones, remicade now lupus?
My 28 yr. old son got chrones 2 years ago and thought remicade was his miracle drug after getting down to 104 lbs. and hospitalized twice. Then he went into remission and didn't get the remicade for 6 months. He had a flare up and got remicade. Then later found out he had C-Dif and may not have even needed the remicade. Anyway, he had a reaction from being off the remicade for six months. He broke out all over his body and his joints ached all over. He tested positive for Lupus and docters think it's all the reaction to remicade. However, he is getting a second opinion at Cleveland Clinic and we are hoping someone can get to the bottom of his problems. He's a new dad and can't even lift his own child who's 8 months now and getting pretty active. He's been on and off prednizone, but it's the only drug that helps his joint pains. It's been 2 months since the remicade infusion and docters say it's still in his system and
think the Lupus is drug induced and caused by the remicade too. I honestly think the remicade has caused him more problems than good. He can't even work with all his joint pains and breaking out all over his body. One dermotologist thought he had Psoriatic Arthritis and Psoriasis but the creams never helped him heal. He gets blisters and then red patches that never seem to get better especially on his hands and feet. Hopefully, Cleveland Clinic can find the right cure and answers for his problems. He's in the testing stage and off all drugs right now and has another week for his last test. Hopefully, he'll get through the joint pains and no flare ups until then. Time will tell. I will write back when he finds out more too.
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replied September 28th, 2009
remicade and joint pain
hi i was put on remicade at the beginging of this year due to my crohns disease which does not seem to be responding to drugs it was a marvel for the first 7 infusions then the pain started. I was fine after the infusion after about a week my bones would start to hurt to the point my husband was having to move me around getting up and down stairs on my own was impossible. my specialist said it was a reaction to the drug. i have not had an infusion now for 3 months the pain is still there i am on steroids to try and ease the pain but it doesnt seem to be getting any better so i am unsure if the drug caused it or not but i will say the few months i was on it it made a massive difference not having symptoms of my crohns was amazing.
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replied June 7th, 2010
I thought I was the only one
I'm glad I found out I wasn't the only one who experienced severe muscle and joint pain with Remicade.

I had a brief stint with Remicade, but was taken off after having surgery. 1.5 years later, I started Remicade again, had my first infusion, and after a couple days, could barely sit in a chair. My back and hips were in so much pain. Just as the pain had disappeared, I was scheduled to get my 2nd infusion of Remicade. As soon as the nurse started the infusion, I felt this tightening in my chest, my face turned bright red and I thought to myself..."Seriously?" I called for the nurse, she took one look at me and rush in with a shot of benadryl. Slept like a baby in the infusion chair for an hour! Since then, the doctor has been trying to get me to agree to use Humira. I've finally agreed - just so he can get me off Entocort (Steroids).

Anybody had problems with Humira? Has anyone seen allergic reactions to Humira if they first took Remicade? I'm freaked out about using the Humira Pen without supervision. Any suggestions?
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replied July 25th, 2010
Hi Gburton,
My mother was on Remicade for about 10 years about a year ago she got sepsis from it. So they tried Cimzia, she said it didn't help so they put her on Humira she has been on it about 3 months and with each shot her reactions gets worse, first a rash and a cough, rash has gotten worse and spread, tired, short of breath, she said she feels like she has been poisoned. She has decided not to take another shot. I am looking for alternatives for her, she has crohns and arthritis as well as fibromyalgia. I hate it when she is on pain meds because she is so out of it but at least she finds a little relief. I hope Humira works for you and you find some relief. I honestly don't recommend it though.
Good luck!
Sunshinesray
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replied August 6th, 2010
Remicade with Steroid Pre-treatment
Hi! I have had crohn's for 15+ years and have been on 6MP daily with Remicade infusions every 2 months. I have had a GREAT experience with the durg and have been so thankful for the last years working so well for me, it is sad when others don't have the same experience.

The last 3 infusions I have started having a minor reaction of a low grade fever during the last 1/2 hour of the infusion, but the last infusion I continued to have the fever for 2 more days and felt crappy. Now I am due again for my Remicade and my doctor is suggesting I do a large amount of steroids as a pre-treatment so that I don't react any further??

Is there anyone out there who have been in this situation? The pre-treatment will be 40mg of steroids at 24 hours before the infusion, aother 40mg at 12 hours and another 40mg at 2 hours before hand. I have never been on steriods this way so it me it sounds like I should get a couple of cars to help me bring home the groceries and maybe a cart of kleenex for all the crying! I have to keep it light otherwise all of this woud be way too much for me!

Anyone who might have some good advise for me to get through this "hump" I would appreciate anything I could get.

Sorry to hear of all the bad side effects others are haivng!
Tara
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replied February 29th, 2012
I have taken high doses of solumedrol since My first infusion. I am given 125 mg iv push right before My treatment. I am also given 1000 mg of tylenol and 10 mg of zyrtec prior to the remicaide. I do have some joint pain and fatigue. But i am just glad i am Not in the hosp for a stay.
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replied August 17th, 2010
Hi, I've been getting Remicade since march. I'm on my sixth or seventh infusion, and I've started to notice my ability to bruise very easily and I take longer to heal.. but quite recently I've noticed a lot of joint pain. My one wrist had been hurting me because I was wearing too many sillybands and hair ties on the one wrist. My palm has been swollen on that arm for over a week now and won't go down completely. My other wrist and hand has just started to hurt. My feet/ankles really hurt and I can barely walk after sitting for long periods of time. My mother says its probably from the sandals I was wearing last week because they were very snug around the ankle... I have bruises all over my ankle and it's a bit swollen. I've been taking ibuprofin everyday.... I know there may be hopeful medial answers for this pain, but I am also a little paranoid about what remicade may be doing to my body... if a couple rubberbands and sandals cause me to feel like my grandmother, hobbling around all day. what would playing a college sport do to my body? Any input would be fantastic Sad

Mary Kate- 18- 3 years Ulcerative Colitis- one liver biopsy/colonoscopy/anemic last summer(hospitalized)
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replied June 24th, 2011
If you have Crohns or related diseases, you should check with the doctor about taking Tylenol with Acetametaphine instead of anything containing Ibuprofin. Ibuprofin tends to cause stomach problems. Well anyway best of luck. I had been on every two month treatments with Remicade for Crohns Disease. I am 57 and have had it since 17. Started Remicade end of 2009 and had until insurance company cut off treatment. I felt best I have ever in my whole life. No side effects and was totally happy with the Remicade.
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replied September 28th, 2010
I had my 4th Remicade infusion since June last week. I have had increasing reactions to infusions, so this last time I premedicated with Benadryl and Tylenol. After I got home from the infusion, I slept for two hours due to the Benadryl and when I woke up, I was in very severe joint pain, radiating out of my hips toward my knees. It lasted through the night and got better the next day, though my leg muscles were still very sensitive and I had trouble standing up. It improved after a day or two. I suffer from the Crohn's arthritis, and this was clearly not it. I am glad to read that others have had the same reaction to the Remicade, because to me it seemed like it was clearly the result of the infusion.

Emily, Crohn's disease for 19 years, 1 resection
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replied October 31st, 2010
RA infusions
I have been pre-medicated before all of my remicsde infusions since the third infusion. I developed a severe reaction which was very scary. It seems weird that they pre-medicate to keep reactions down, all they are really doing is covering up a reaction..It is very scary, because the steroids and benadryl, just mask a reactionthat I am probably still having..My doctor tells me it a safe and effective way to keep me on te remicade.I usually feel crappy for three to four days after the infusion, but it seems to work miracles from that time unti next infusion..Has anyone had any luck with any of the other infusions, such as enbryl,humira or orencia..I am long time sufferer of RA about 10 yrs..
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replied October 31st, 2010
RA infusions
I have been pre-medicated before all of my remicsde infusions since the third infusion. I developed a severe reaction which was very scary. It seems weird that they pre-medicate to keep reactions down, all they are really doing is covering up a reaction..It is very scary, because the steroids and benadryl, just mask a reactionthat I am probably still having..My doctor tells me it a safe and effective way to keep me on te remicade.I usually feel crappy for three to four days after the infusion, but it seems to work miracles from that time unti next infusion..Has anyone had any luck with any of the other infusions, such as enbryl,humira or orencia..I am long time sufferer of RA about 10 yrs..
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replied December 21st, 2010
remicade
I am facing the possibility of Remicade and am really reluctant to use it. The possible side effects are too serious to take the risk- in my opinion.
Has anyone had surgery for crohns?
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replied June 24th, 2011
I had great results until Jabnuary when the insurance company refused the continued treatment. I have a friend from Canada that is heavily into the medical field and he knows someone that worked on the Remicade project. The facts are that of course there is a potential for side effects. I had great success as the hospital infused the Remicade over three hours. No side effects, and felt great. My friend also told me that if you read the precaution information, you would not even take aspirin.
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replied September 22nd, 2012
surgery & remicade: post surgery-disease free, ? take remica
I just had my first Crohn's related surgery after suffering with this disease for 22 years. I was on Remicade for about 3 years prior to surgery-luckily with no reactions. I actually felt pretty good b/c of the Remi though surgery was inevitable due to the narrowing of the intestines. As the doc's say-the meds can only do so much. I had to be resectioned in 3 places: had an ileocoloctemy and part of my sigmoid colon removed. The GI wants me to stay on remicade and I am frustrated b/c I want to get off the meds. Anyone with post surgical/remission stories?
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replied April 9th, 2011
I am still in loading doses - I am scheduled for my 3rd infusion on april 25th. I am not really having issues with the infusions other than being tired afterwards (I go to work right after), but this week it's been nothing but severe muscle and joint pain. I have only spradically had to take Vicodin when I overexerted but I seem to be living off of it this week. Just wondering if this is what some of you describe as delayed onset of symptoms and should I mention this to the doc at my next infusion and possibly pre-load with prednisone?
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replied April 19th, 2011
Long-term UC experiences with Remicade
I've been taking Remicade for UC every 8wks for several years now. Dr. advised this to get off the steroids. While not instantaneous, it did work for me and I believe it keeps me in remission (with only rare minor flares during high-stress times, usually a week or two before the next infusion). I have never had any reaction during infusions, and usually we can 'push' the rate to reduce infusion time to less than 3 hrs. Afterwards I feel fine until about 4-6 hrs later, when I begin feeling somewhat tired and 'puny'. Tylenol/Benedryl helps, but the effect is minor enough that I usually tough it out and don't take anything for it. My mind is usually *very* fuzzy until afternoon of the following day. After that, no significant effects except for slightly reduced energy levels for a day or two. During those rare flareups, I usually notice improvement within 2..3 days after infusion. Interstingly, the Remicade seems to help clear up minor psoriasis patches that sometimes flake-up between infusions. This drug increases ones sensitivity to light *and* I'm a redhead, so I stay out of the sun. Only minor susceptibility to bruising noticed, but it takes a good thwack before anything shows. I also take Azacol and Imuran in combo. Again, it initially took many weeks for these meds to get ahead of the symptoms, but so long as I keep my stress levels down, I would estimate that I'm 95..99 percent symptom-free nowadays. I would not stop Remicade for fear of falling below the delicate threshold of effectiveness that i'm currently hovering above, and I've heard too many reports of ineffectiveness or serious problems when re-starting this drug after stopping- I don't want to take any chances of going back to the long frustrating months of "well, thats not working, lets try something else" again, and again...
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replied July 6th, 2011
I take remecade for UC, I was in the hospital alot and sick and this drug was a god sent for me. I do get sick all the time about a couple of days after the infusions, always sinus problems. I still think thats better than the pain and running to the bathroom. I had joint pain with the first 3 infustion but not since knock on wood. I love this drug, but does anyone get sinus colds ,,
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replied January 12th, 2012
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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replied June 16th, 2013
I woke up 2 months ago in severe pain after being on Remicade for 10 months.My finger tips and hands blister.I couldn't lift my arms above my head.My wrists hurt so bad I couldn't hold a cup.My elbows,hands ,fingers,hips ,knees,and feet are killing me.Doctor seems to be stone walling me.He was supposed to send paper work to the insurance company 45 days ago to get a promethius test approved...but it never went out.I am a 45 yr old man that never had any sickness except for crohns. I was strong as they come.Now my wrists, hands and feet are constantly killing me.I am having a very hard time at work.I could use some direction...
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Tags: muscles, joints, head
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