Remicade Remicade Infusion, Blood Spots Under the Skin, Restless Legs Syndrome, Restless Legs, Weird Kind

Posted over a year ago

I have had 1 remicade infusion so far for ulcerative colitis. The next day a bunch of spots appeared on my lower legs. There were 30-40 of them, small, roundish, purple/dark red. They looked like blood spots under the skin. It wasn't a rash and they ... more »

I have had 1 remicade infusion so far for ulcerative colitis. The next day a bunch of spots appeared on my lower legs. There were 30-40 of them, small, roundish, purple/dark red. They looked like blood spots under the skin.
It wasn't a rash and they didn't itch or hurt. My doc had no explanation, and I haven't heard of anyone else having this reaction. They checked my blood for a clotting problem and didn't find anything. The spots faded away over a week or so. My next infusion is in 2 days, so we'll see if they reappear.
I have also been experiencing a weird kind of insomnia where I am so physically antsy I CANNOT keep lying still, I have to shake my body or kick my legs or something. I read up on restless legs syndrome and the symptoms sure sound like what I am experiencing. I don't know if it's connected to the Remicade - I read that iron deficiency can also cause it and I am anemic due to the UC. But since Remicade can disturb the central nervous syndrome, it seems possible. Anyone else experience RLS with Remicade?

9 Replies

Nickb - Interesting. I also have UC and I get the same spots on occasion during active flares. I have never taken Remicade, or any other biologic, however. Likewise, the docs have no explanation.

Posted over a year ago - Reply

Mgale - After 2 infusions of remicade my mother has broken out into a rash that has continued to spread over her entire body. They are large itchy red bumps and some of them are starting to blister. Has anyone had any experiences with this??? Please help! She has been to the dermatologist several times and nothing is helping, it has gotten so bad that she can't sleep and doesn't want to leave the house.

Posted over a year ago - Reply

Kitty_d - Reply to mgale: Your mother may be experiencing a rare allergic reaction to Remicade called toxic epidermal necrolysis, or TENS. The more severe form of this is called Stevens-Johnson syndrome (SJS). I don't want to freak you out, but if this is what may be going on she should talk to her doctor immediately because they both can progress and can even be fatal. She should also immediately discontinue Remicade and any other drugs that can cause TENS/SJS (there are a lot of them, even some over-the-counter drugs), although obviously not without talking to her doctor first. The Mayo Clinic's webpage has a lot of info about SJS at http://www.mayoclinic.com/health/stevens-johnson-syndrome/DS00940. I hope she gets better soon! By the way, I had my second infusion of Remicade and the spots I mentioned in my original posting did not reappear, if anyone is interested. So maybe it wasn't the Remicade that caused it, I don't know...

Posted over a year ago - Reply

Tiffanyhaggerty - hi,kitty_d i have been taking remicade for 8 months now and i also was having the same problem as you i wasnt able to sit still and my legs would drive me nuts when i was trying to sleep at Night, i would have to get up and walk or shake my legs alot, my husband said sometimes even while i was sleeping my legs were still moving like crazy, just latley my legs, arms and hands started to hurt alot, the doctors here dont bother with me or any one else for that matter, i am going to go off the remicade and go see another doctor, i have had chrons now for 8 years and already had a huge surgery when i was 16, got 2 and a half feet removed from my small intestine, and within 3 months it came back, i find i was better without any medicine then the shape i am in now from the remicade. i already had a severe allergic reaction when i went for my last infusion. couldnt breath and had to be on oxygen and broke out in red rash and dizzy, i am 22 years old and feel like im 60.... not to fun, but if i was you i would get off the remicade there is always something else out there, the doc told me that this was my last chance or i would have to get another sergury, actually i would rather have another one, compared to how i feel now.. but there is another thing out now it is in the same family as remicade but has minimal to no side effects, they said that this might be my next step, but who knows this might be just as bad, and im not going to go on anything else until i see another doctor away from my home town! well best of luck and take care Tiffany New Brunswick, Canada

Posted over a year ago - Reply

Smmb - I am having the same symptoms

Posted over a year ago - Reply

Smmb - I have suddenly developed the pin point red spots on my lower legs too. Have you heard anything else about that?

Posted over a year ago - Reply

Kitty_d - hi smmb - no, the spots never reappeared with the Remicade treatments i've had since then, and I've still never heard anything else about them.

Posted over a year ago - Reply

Swedeank - Hi, I'm 30 and having the same symptoms without red spots or I havent noticed.. UC for 10 years and remicade for 2 and a half. after my 3rd injection I lost all of my hair, Alopecia univeraslis. Dr said its not a side effect. I have restless legs to RLS. Going to ask him for that also. I'm living in Sweden, Remicade is not that common here, small country. but it realy helo my UC. :)

Posted over a year ago - Reply

Cissya - Has anyone gotten a large red knot at the site of the infusion(where the needle was placed?)

Posted over a year ago - Reply

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