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Crohns, RA & Remicade

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Crohn's Disease
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Posted 12/5/2011 4:57 PM (GMT 0)

Hello, I am new and have Remicade infusions for RA and Crohns. Recently I was diagnosed with Fibromyalgia. I have had weeks of not being able to move my arms and legs because they felt like someone had poured concrete into them and I couldn't lift them. Attempting to was very painful. This together with the Rheumatoid arthritis has been a long journey since July. I am just getting my head around the Fibromyalgia, today I had another infusion and I also had a reaction to it, shortness of breath, overheating, vomiting, diarrhoea. Tonight I am experinecing jaw pain and I suddenly remember this jaw pain and have worked it back to the last infusion. I went onto another forum and read several peoples experiences with Remicade and sure enough they had the muscle pain and the tiredness and the feeling like you cant move any part of your body. PLEASE CAN ANYONE HELP ME AND LET ME KNOW IF YOU HAVE EXPERIENCED ANYTHING LIKE THIS?

Posted 12/6/2011 3:33 AM (GMT 0)
Hello & welcome to the forum!!

   I have Crohn's & the Ra too & started Remicade in November sometime. After my second Remicade infusion(I believe it was last tuesday) I indeed felt very tired, weak, emotional(then again I was on 50 mg pred too). I already have the muscle weakness/spasms from vitamin defficiency/pred & other meds but I did notice it got worse after the infusion. The intensity only lasts a few days though. I did have a slight fever/shortness of breath too and my GI said that's normal. The nurses always tell me to make sure you are well hydrated before the infusion and reccomend you eat before/during it. I didn't eat much of anything that morning but drank about a liter of water and was still feeling lousy afterwards but, compared to my last infusion where I didn't eat a thing and just a drank a glass of water, I can say that staying hydrated helped.

   Contact your Rhuemie/GI if the pain persists for more than a few days. Also, get your blood check for any mineral/vitamin defficiency.

(((HUGS!!))

Posted 12/7/2011 1:25 PM (GMT 0)
The duck.
I'm 19 years old with crhons disease since the fifth grade. I begin remicade as soon as I was diagnosed. Infusion went well, no serious side effects. Although my blood pressure would drop. And I would experience some mild back pain and also was very weak afterwards and just wanted to sleep. I ignored the back pain because the remicade helped me very much. I went from severe crhons flare up, to no sign of crhons at all. Than out of no where around 2008 begin to get this fungel on my scalp and made my hair fall out. So doctor took me off. And put me on all kinds of meds. Right now cimiza didn't help at all. Made my pain worse. So tried remicade again, had a reaction. Went to the ER because I was very weak, more in pain and felt very lost and ugly. Turns out it was a reaction. Body wasn't used to it no more. They have me on hydrocodones 7.5/325 (2) tablets every four hours. For back pain and stomach pain. If it wasn't for my daily meds especially those I wouldn't make it through the day. I've been on hydrocodones since easter. Yes bad thing but have no choice! Anyway. Remicade is a great drug. I wouldn't stop it for anything. Rather have my hair fall out than go through surgery. That's what doctor is talking about now. But humira is my hope drug. Remicade made my blood pressure drop. Made me very weak after wards. Just had to rest it off. And mild back pain. So just try and get treated for the mild things. You don't want to go through what I am and others. Try to work with it. If not, there is always hope for another. Sorry so long, got carried away. Hope this helps you. Good luck and god bless!
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