Reply To: Relapse vs Rehab

Anonymous
February 16, 2014 at 9:12 pm

Thanks to everyone for the responses and information – I have taken a close look at my situation and I believe that I am not relapsing, but having a combination of side-effects from medication and weakening from lack of rehab. I’ve also recently weaned myself off Hydrocodone, and I think that I’m feeling a lot of muscle pain from exertion that was previously being masked by the narcotic. I’ll be seeing my neurologist on Tuesday, where I will get the full strength test and find out how I’m doing – hopefully, I will also get off the Prednisone (my original dosage made me very nauseated) and be able to manage the CIDP with Azathioprine alone. Maintenance IVIg has been discussed, but my insurance will only cover it in the case of demonstrable neurological deterioration.

Jim-LA: I appreciate your insight into medication side-effects and the links you provided. Your response prompted me to look closely at my symptoms and consider my medications as culprits. I’ll be watching myself closely for the myelin-damage symptoms you describe.

GH: After reading your post, I intend to work with my neurologist to establish a set of tests I can do at home to monitor my strength. I paid close attention to my issues and saw that it seems to be more about exertion and fatigue than about absolute muscle strength, where my relapses have always seen me lose that absolute strength to the point where I can’t raise a leg, or lift a mug of water.

bny806: I’m sorry to hear that you are suffering with relapse and cold, I certainly hope you get to feeling better soon! I agree with you regarding IVIg, whenever I have had a course of that stuff my improvement has been swift and noticeable by everyone. My last course was only partial, 3 instead of 5 doses, and my family said that I came out of of it worse than the previous treatments. I can fight insurance for some maintenance treatments, but to be honest I don’t think they appreciate the nature of this condition. They’ve covered two ER and ICU visits instead of giving me preventive treatment, so I don’t see things changing now!

JohnQ: I’m sorry you ended up in the ER again, it sounds like you definitely have the ability to recognize a relapse! Solumedral is not something I have heard of in treating this, but I’m glad that it works so well for you – hopefully you can get back on track with your IVIg and recover well!