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Posted 4/20/2016 9:39 PM (GMT 0)
Good evening,

First, I apologize if there is already a topic concerning this, I did not see one off-hand. Well, here is my concern, I have been taking Remicade (infusions) since January 2016, at first it wasn't too bad, I felt ill following the infusions but knew that was expected. However, this become worse and worse until to this day, I suffer from almost debilitating fatigue, joint and muscle pain, headaches and lately have been waking up with am extremely sore throat. I have been to a Rheumatologist who took blood and everything came back fine, as it always does, even during an extreme flare. No one can figure out why I am so sick right now and I am becoming increasingly frustrated as well. The only explanation I can think is my body is reacting very negatively to Remicade and I am going to speak with my GI about switching.

So, my question is: I know some of you have taken Remicade or are currently taking it, have you had this experience? What was the solution, if any, or did you switch and feel a lot better? Sorry this was longer than expected but thank you for reading blush
Posted 4/20/2016 10:31 PM (GMT 0)
Lex...I've been getting Remicade infusions, every 8 weeks, since about 1997. I never had any bad side effects, but I am very tired after the infusions. I spend my infusion time reading books; so this may be the cause of my fatigue. Your GI doctor should do some blood testing and that should tell if you are having an adverse reaction to Remicade. I will also say...I'm not good at advising others. That's why I began reading the posts here. I am gaining more knowledge of UC now; and I should have done way more research on it when I was first diagnosed. But...here it comes...were I you...lol...I would certainly speak with my GI doc. as soon as possible, to tell him your thoughts. Best of luck to you. Remicade has worked for me when nothing else did.
Posted 4/20/2016 10:46 PM (GMT 0)
Thank you for your reply Gizmo! I did speak with my Gi about it and he said I was basically an anomaly and therefore sent me to the Rheumatologist to test for other auto-immune disorders as well as by B12, everything came back negative. Beforehand, they did check my antibodies to see if perhaps the dosage of Remicade was too high but that too came back just fine, the levels were therapeutic so I am honestly at a loss. At first the benefits of not being sick from my UC outweighed all of this as it was manageable. However, the positive effects are no longer outweighing what has been going on but it seems I may just have to try the best I can to deal with it. I just have a hard time functioning due to the fatigue and pain.
Posted 4/21/2016 12:32 AM (GMT 0)
It's possible you're experiencing a reaction to the remicade, you could try switching to another biologic like humira or simponi and see if things improve. Joint pains and fatigue are the most common complaints with uc patients. It can be unrelated to your medications, uc is autoimmune and joints can be another common immune target, causing joint inflammation (also known as arthritis) which can occur at any age. Here's a fact sheet from the ccfa: www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

How are your iron levels in your blood? Those with low iron levels often experience fatigue.
Posted 4/21/2016 12:36 AM (GMT 0)
Ipoop, arthritis was ruled out because my joints do not swell, just ache a lot throughout everyday :( I'm going to get my CBC, vitamin D and a few other things checked either Friday or next week but I'm not hopeful it'll show anything. The fatigue is beyond ridiculous and I become severely wiped out from the smallest tasks now. I also feel flu-like after any physical activity so who knows.
Posted 4/21/2016 12:44 AM (GMT 0)
Low vitamin D would also cause fatigue. Your CBC will show iron levels. Just see if you're out of range, or close to out of range.

It's possible to have medication-induced lupus. Or just regular lupus (another autoimmune disorder). Here's an article talking about lupus fatigue using spoons as an analogy: www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Posted 4/21/2016 12:47 AM (GMT 0)
Ahhh yes I have heard of drug-induced Lupus, but the Rheumatologist did an ANA analysis with my blood and it all came back normal so I guess that's not it? I mean if my blood continually shows nothing but normal ranges then I'm honestly lost as to what's causing me to feel so ill everyday. I very much appreciate you giving me these articles to read.
Posted 4/21/2016 12:07 PM (GMT 0)
Sorry to hear about your issues with Remicade.
Been on Remicade for about 3 years now. Have experienced many of the symptoms you are describing. Having a lot of headaches and joint pain, swelling in my hands and feet making it painful to walk.
Started taking taking Fexofenadine 180 mg(Allegra generic) for seasonal allergies about two weeks ago and the joint pain and swelling went right away. Seems very possible I was having a small allergic reaction to the Remicade and the Fexofenadine calmed things right down.
Had blood work done testing for Remicade antibodies and everything came back negative.

Might be worth a shot.
Hope you feel better soon.
Posted 4/22/2016 1:52 PM (GMT 0)
Can try premedication with steroids and Benadryl next time to see if it helps
Posted 4/22/2016 4:18 PM (GMT 0)
I had those symptoms too and my ANA was positive on Remicade. Maybe you should keep getting checked and see if it changes. Also, I think premedication is a good idea.
Posted 4/22/2016 4:21 PM (GMT 0)
Notsosickly, when it came up positive, were you then diagnosed with something else? I was just checked a little over a week ago but I continue to deteriorate, now I wake up this morning to my face flush and dry :/
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