My daughter has CIDP and reactive arthritis that came on at the same time. She is 4 years old. Her arthritis is worse than her cidp right now. Her rheumatologist wanted to put her on orencia as it has fewer neuro side effects, but her neuro is against it as it has been known to spur on demyelinating conditons such as ms. This is a little known fact about some of the new biologicals but if you do some digging you will see it. Sounds like you dr is a smart cookie.
I was also going to ask what meds your husband is taking? I was put on Neurontin ( now the generic fomr is called gabapentin) right away when I was first dx with GBS. At that time it was 3600 mg, after 3-4 months I did wean myself down to 1800 mg & have stayed at that dosage since 2002. My feet still burn but not like in the beginning of my CIDP. I also try to wear leather slippers, up to the ankles, zipper in the back, as I find that if I wear tie shoes too much my feet burn worse.
It sounds to me like your husband is in rough shape & only getting worse, I honestly don’t understand why he isn’t in some type of teaching hospital. Sometimes, the longer the nerves remain damaged, the less the chance of recovery. Once I was unable to walk, I was taken from northern MN by ambulance down to Mayo (5 1/2 hour drive.) Eventually the numbness did proceed up my chin to my lower lip & my swallowing was affected. This illness can get very ugly, & I know 2 who have died when they became unable to breathe, respiratory failure it was called. I am not trying to scare you, but truly wondering why he would want to be at home, waiting for neuro appt. when he could be trying various treatments & seen by neuros several times a day in a hospital setting?
They are going to give me 3 benadryl this time and fluids before my infusion and I am going to drink lots and lots of water. So here I go again Sept 6th my second round of infusions and I am having surgery on my foot the Friday before wow that should really knock me on my butt.. I have torsil tunnel syndrome in my foot because I fell down stairs and fractured ankle last march and it caused allot of damage…
I was talking to Nate the other day about this thread. I told him about feeling mildly brain damaged. He kind of laughed and said it has never left.
Neither of us know for sure if its from GBS or all the meds he’s on. Either way, its noticeable to all of us.
I was on the neurontin from hospital release for about 4 months. I was still having a high level of pain so my neuro switched me to Lyrica. For the past 3 months I have been switching back and forth every few weeks but NEITHER one really takes away all the pain. I’m learning to live with it and get plenty of rest.
The reason I answered is that I was a total zombie on the neurontin. Plus I had hand and feet swelling. With the Lyrica I am much more clear headed and do not have the swelling. After weighing the differences in the two (they both managed the pain the same way but the side affects of the neurontin were much worse, and I didn’t really realize how spaced out I was until one of my neighbors asked me if I was stoned!) I am going to stay on the Lyrica.
I think the bottom line on this whole GBS/medicine thing is that even tho we all have many common problems, we also have specific problems to ourselves that we have to deal with. The doctors really don’t know that much about GBS, and won’t unless they actually experience it themselves. Trial and error, staying in contact through this web site and lots of rest seems to be the key.
Happy Holidays to all. And I truly wish all of us a prosperous and GBS free new year!!!
I take 1800 mg of neurontin daily to deal with the nerve damage in my feet, which is pretty severe. I also take Klonipin for anxiety disorder, but was on that before I got sick with CIDP. I take a daily vitamin if I think of it, & sometimes half a Lortab for back pain at night. Not too bad considering the shape I am in physically.