Posted 2/28/2018 8:46 PM (GMT 0)
Hi All - I thought I would seek info from anyone else who has had similar symptoms that are possibly due to remicade - I will try keep it short:
Was diagnosed with colitis in 1996. Have been on remicade for 6 years now - it saved my colon.
about 3 years ago, I started experiencing 'myalgia' confined to my back and shoulders. It comes and goes. Over the past 3 years it has exacerbated such that the stiffness/soreness in my muscles will extend into my legs, chest, arms, wrists. It seems to include joints/soft tissue as well as muscles. It will shift/move from an area of my body on a given day to another area the next day.
In the past year, what seems to accompany the myalgia issues is dryness in my nose, lips and eyes.
I will have periods of up to a month or so where I feel pretty good. However, I will then be hit with a bout of the above symptoms. Often accompanying the above systems is lethargy and exhaustion.
I did get referred to a rheumatologist who has done a raft of blood work a few times - initially it was thought that my body had developed antibodies to remicade. That is not the case based on blood work. My rheumatologist is stumped as she advises the blood work shows as 'normal.'
I thought I would post this on the off chance that someone else out there has had the same issues with a diagnosis? There is some discussion about taking me off remicade but not sure on this idea just yet.
Any feedback would be appreciated. Thanks,