Adverse reaction Remicade

[KathyT]

Hello, I am new and I have read some of your messages regarding your adverse reactions to this drug. I am so thankful, I have been told I have Fibromyalgia and that is the reason for all my muscle weakness and pain, jaw pain, etc. I had an infusion today and whilst lying in bed tonight my jaw started hurting, I immediately recalled this pain from before and started putting it all together, I googled Remicade and jaw pain and found your wonderful site. I am relieved on the one hand, but quite concerned on the other as I think my Dr is out of options for me. I just know that I do not have a low pain tolerance and I could not get out of bed without my husband helping me. I couldnt hold the glass to take painkillers, I couldn't lift the bed sheet over me. Please reaffirm that I am having the same reaction or similar to what you have experienced and I will go to my Dr with this information.
Thank you

 

[Angrybird]

Hi Kathy and welcome. i would say my reaction was similar with lots of joint pain. My fingers looked like claws and I couldn't bend them or straighten them they were so painful and stiff. My knees and ankles hurt and were swollen and at night I could not get comfortable because no matter how I lay, a hip, knee or ankle touched the mattress and it was absolute agony. To try and walk had me near tears. I also had red splotches come up around my eyes, elbows and knuckles. It was bad enough to get me admitted to hospital, my bloods were doing funny things and they even did this test on my heart (I could see it pumping like an x- ray type image on a tv screen which was kind of cool), at times I had enough symptoms to make it look like I had Lupus - this was all eventually put down to the Remecade. Out of interest what other medications have been tried for you?

 

[Crohn's 35]

Hello, I am new and I have read some of your messages regarding your adverse reactions to this drug. I am so thankful, I have been told I have Fibromyalgia and that is the reason for all my muscle weakness and pain, jaw pain, etc. I had an infusion today and whilst lying in bed tonight my jaw started hurting, I immediately recalled this pain from before and started putting it all together, I googled Remicade and jaw pain and found your wonderful site. I am relieved on the one hand, but quite concerned on the other as I think my Dr is out of options for me. I just know that I do not have a low pain tolerance and I could not get out of bed without my husband helping me. I couldnt hold the glass to take painkillers, I couldn't lift the bed sheet over me. Please reaffirm that I am having the same reaction or similar to what you have experienced and I will go to my Dr with this information.
Thank you

I had the same problem it started in my arms, and couldnt move them 2 perc wouldnt touch it. Then it went into my jaw and not to stop there, it went to one foot , so bad I had to get crutches. It was on my 3rd infusion, I would stop taking it. I was ok with Humira but it petered out. NOW only antibiotics work.

:welcome: to the forum!

 

[shazz]

Hi KathyT,
Welcome to the forum.
I have just been taken off Infliximab/Remicade as I had an allergic reaction to it.
I went to bed the night of the infusion and felt ok, but really tired. Woke at 5am the next morning and couldnt move because of the pain in my left hip. Couldnt catch my breath or get out of bed.
The next morning, day 2, it was in both hips and got some co-codamol. Not even close to doing anything for it.
This morning, Day 3, its in both hips and now both knees. I am walking around like an old woman.
I would go see your doc because its a serious drug and its better to be safe than sorry. Wish you luck and let us know how you get on.
I am also at the end of any treatment.
Hope to see you around the forum.
Sharon xxxx

 

[amw165]

I had an adverse reaction as well after my second infusion, instead of reposting everything that happened to me I have attached the link to my thread, but it sounds very similar to what you are going through.

http://www.crohnsforum.com/showthread.php?t=22586

 

[KathyT]

Reaction to Remicade

Thank you so much for your replies, I don't know whether to be happy or sad, because my Dr says that if this doesn't work then it may have to be Methotrexate. It is interesting that you all mention joint pain. Because I take the Remicade for Rheumatoid Arthritis as well as the Crohn's I wouldn't know what the joint pain was caused by. My hands are like claws and most days I have trouble just to get the toothpaste out of the tube. I have no muscle strength and cannot roll over in bed. I currently wear satin pygamas so the the slippery fabric helps me to move. As far as previous medications: I was on 10mg Prednisolone for years but obviously I couldn't stay on that, however that was the best I ever was. Then I went to humira which worked for th RA but was getting peri anal abscesses etc. so thats when they tried the Remicade. My other problem is that because I have an Immune disorder that affects many parts of my body my liver is also affected so it limits what they can offer me. Does everyone else have the chronic tiredness and the mind fog. My Dr says I have Fibromyalgia and I must say these symptoms are very similar.

 

[amw165]

I'm sorry to hear that you are having so many problems, keep us posted with what the doctor says. Hope that you begin to feel better soon

 

[KathyT]

Reaction Remicade

Thank you so much for your replies and support. I went to see my Dr armed with all the information I had gained from the forums and I am pleased to say that he listened and agreed that I certainly had a severe reaction at the time I was given the infusion and was interested in what I said about the pain I had been having being the same as many of you who had allergic reactions. We are going to try Humira again and see if the other problems go. He says unfortunately that the symptoms of Remicade reaction and Fibromyalgia are so similar this will be the only way we will know what the problem is. So far so good I had the infusion last Monday and had Hydrocortison and Phenrgan and I have not had any pain as yet. Fingers crossed. Thanks again

 

[Angrybird]

Hi Kathy, thanks for the update. Keeping fingers (and toes) crossed

 

[KathyT]

Hello back again, I have had the best two weeks in 6 months, no pain, no stiffness, however now I can't put any weight on my right foot and my hands are becoming claws again. I have emailed my Dr and asked if I should take some more phenergan or increase the prednisolone as maybe what they gave me for the allergy has worn off. Just wondering if anyone else had anything similar.

 

[shazz]

Hi Kathy,
Glad to hear you have had a good couple of weeks. Since I had my remi my hip and knee joints have been very sore and at one point I could not stand or walk.
Hope you get it sorted and your good run continues well into the new year.
Sharon xxx