I don't really belong here but Preetha posted on the MS board and I was wanting to see what you all had to say here. I am so impressed!!! This is a very active board. You are all very supportive and informed. I really don't know a lot about Crohn's except that it too is an autoimmune disease (I had a roommate in the hospital with it). Now I have a question of my own; in MS once the myelin sheath is damage it does not repair itself. Is this the same with Remicade caused damage?? After an MS flare there may be a bit of re-myelination but not a lot.
Well anyway, it was nice to read all your responses to Preetha. Love and prayer to you all.
I am wondering how your husband is doing or anyone who has had remicade effects. My daughter-40 yrs-was incorrectly diagnosed with espophageal Crohn's 2 years ago and started with remicade infusions. The first infusion was wonderful. During the second she developed hives, but continued after dr consultation. Two weeks later she developed stroke like symptoms---one side sluggish--face,eye,leg arm, hand, unable to balance herself without a walker. She was later diagnosed with brain lesion, an effect of remicade. In the past year she has moved to a 4 prong cane and increased mobility---yet continues to be limited in her activity. I have attended most of her evaluations and the neurologists often refer to one side of her face as " dropped ". Her strength in her arm, hand and leg is minimal. She lost the opportunity to work at her nursing profession and does not yet see much light at the end of the tunnel. Her incorrect dx of Crohn's was changed to a hiatal hernia and severe reflux. She has had the appropriate surgery and very little difficulty with the original symptoms. The effects of remicade continue, however.
Please share your remicade experiences. .....bad or good....we really don't know what to expect. My daughter simply continues to work out at home, attemtping to regain her strength.