Thank you for the reply, I am sorry that you were in the hospital over the holidays but am very glad to hear it helps you! So I began IVIG a few months ago when hospitalized for I guess what you could say was a crisis point and dx with CIDP. There was no real response after a three day loading dose and I was released only to return a few days later when I was put on steroids, (60mgs per day) I improved somewhat and then went on a 5 day IVIG regime and after that for a few weeks I was feeling pretty good, walking and hiking again. Then I was put on Cellcept with the thought I might have Sjorgrens Syndrome or a component there of and or vasculitis (some sort of autoimmune neuropathy) and continued the steroid tapering, once I hit about 15mgs, all my symptoms began to come back, I went in for IVIG at three week intervals and I have been on Cellcept for a month now but I am still on only 500mg per day (I weigh 185lbs) and was wondering what dose you are at comparatively as I am to see the Rheumatologist again Monday where she may up my dose. Thank you for getting back to me, my wife says I am not allowed to talk about it anymore as I think it is upsetting her of course to see me like this and of course she is the one that has to hear about it all day, it is nice to have someone who understands, thank you again.
Brad, hate to hear you are continuing to have issues. But I have been on 1000mg of cellcept and I think he is about to increase it since I had to go back for another PE. Waiting to speak to him again next week. Steroids are awful and I finally got completely off of them when I went on cellcept. It has worked for me, so maybe if they increase this and reduce steroids you might be ok. I am about 190lbs, and am in 1000mg. I take 500 in morning and another 500 at night. I also take neurotin for the neuropathy pains.
Keep me posted and let’s stay in touch. Where are you located? I am in Birmingham AL area.
Hi Jon,
Since we spoke last I saw the Rheumatologist and she up’d my dose to 1000 per day and I have been on that for a couple of days now and still on 10 of prednisone, I have to tell you, I have been feeling pretty poorly since upping the dose, not sure if it is related or not but time will tell. I still have real trouble especially in the middle of the day where I get numb throughout my legs, arms and face and just can’t really do anything, I also take 600 mg - 900 mg per day of neurontin and occasional tramadol when I am real bad. It is a puzzling disorder for sure, otherwise I am a long ways from you out here in southern California, Thank you again, hoping for a speedy recovery for us all!