Reply To: Anyone with similar symptoms?

December 8, 2019 at 7:11 pm

Somebody in these forums told me a few days ago the Cellcept is working for them now post IVIg w/ Prednisone. I would want a proactive doctor that is willing to try different combos if what you are doing isn’t working. Our doctor is the boss and has a track record with CIDP but he is still very open to suggestions or willing to look at the successes of others in here have had. The hand weakness came third to my friend Jeff – first he lost his legs and then feet then his hands and finally arms. He said his hands and feet felt numb and big hugely swollen but they were not swollen or big. He ultimately lost the strength and dexterity in his hands before finally losing the arms. It allfinally started to get a bit better after several months of IVIg. First it was 3 months of continued decline on IVIg and in the fourth month came the introduction of 65 mg Prednisone. That really turned the tide but not fast. A slow progression. His hands and arms were last to go and first to come back. His legs and feet have been slow coming but he can walk fairly ok without chair, walker or cane but it’s hard. His feet remain messed up and painful. He is down to 2 days of infusions per month and about 20g of prednisone. It’s like walking a tightrope of fear that it will go south again drastically. It’s what his doctor calls the art of it. They are getting him back to as normal as you can get and off the meds without losing the remission and having a setback. He has never given up for even a minute and works out everyday. He was extremely irritable and difficult for quite some time. Understandable. His mental acuity was there but kind of sluggish like his hands were. It has come back pretty much. Do not give up until you try everything you can!! Everyone is different and there is no way to know what will work in what combination or when. There are some statistics for CIDP but in reality you guys who have it now are making the statistics because the previous stats are based on very few people. My theory is – if you’re going to be Guinea pig or lab rat anyway you might as well go for whatever treatment you can talk them into giving you. It’s your shot to call. This forum is the best place you can hang out for knowledge and caring support. The people in here are the only ones who know exactly what you are feeling. Sharing and helping the other patients here helps them and will help you to. Everyone needs to help somebody else to feel needed – and you are a valuable resource in here. May the force be with you.