Thank you for the success story
Flyin, thanks so much for the success story. It really helps to hear people living life despite these illnesses. I logged on with the hope to read something encouraging since I am having a harder time the last month and the neurologist once AGAIN is raising the possibility of MS or CIDP, but not wanting to treat.
Strongly consider/discuss the possibility of pulse doses of steroids either high dose IV (or orally). What has been discussed in this forum recently is solumedrol (IV methylprednisolone) about 500 mg weekly at the beginning and then possibly spread this out very slowly. Because you have been on oral steroids for quite a while, you would need to wean off them if they are taken daily as well as do a pulse dose. IT IS REALLY NOT SAFE TO COLD TURKEY OFF STEROIDS. Thank goodness LamkeG was okay, but high doses of daily steroids suppress the body’s production of its own steroids (hydrocortisone) by the adrenal gland and it takes a while for the body to adjust to making these steroids again. This is why everyone really should always wean slowly off steroids if you have been on them for more than 3-4 weeks. Steroids by mouth every other day are much better for the rest of the body than steroids by mouth every day. Most people however, start with daily steroids to see if they will work and then transition slowly to every other day steroids (at the hospital I work at, typically we go up on one day as we go down on the alternative day so the total is about the same over the two days and do this change over a month or more with particular care to be slow and gentle when the low day is getting very small.
I work with people (mainly children and adolescents) with blood problems and cancer and we use four days monthly of high dose decadron for autoimmune diseases with frequent good results on the disease and not very many cumulative side effects (often the children are moody for the four days of steroids, but this is better than all month and they typically do not gain weight, have so much glucose/blood pressure/bone density issues, and continue to grow. Anyone on steroids has to be careful about infections, but we also do not see any more and probably less viral infection concerns.
With Hope for cure of these diseases and better management until then.