Zanna,Vicki,gide672-IBM,Itching&Janie

[Guest guest]

Wow! what a source of information you are. First,Zanna by all means give my email address to Janie. I want so badly to talk to everyone with IBM (and all myositis patients). I am learning the more you learn about these monster diseases the better you can deal with them.Vickie , Be on the lookoout for any more IBM cases, and where in the world do you live to have such high temps(100 degrees or more) Whoo---eee. gide672 the itching started before I even suspected I had a muscle problem. Broke out on both legs and with such intense itching I saw a dermatologist. Tried every thing in his books. Nothing worked. SO Drive about 2 hours to the big Houston Medical center. MORE rx medicine that helped some . after about 3 months of scratching my legs and arms bloody,I had begun to fall more often.,thus the neurologist. Dermotologist advised itching could from a more complex issue. Advised me to get complete records from my other doctors. I did,and was told she could give me a small dose of predisone but osteoporis and predisone were "not good friends". To make a long story a little shorter the Neurologist in Houston first treated me for PM with large doses of pred(80 mg a day. Itching stopped, rash gone. Since the pred and methotrexat did not have any posive effects I had second muscle biopsy that changed my diagnosis to IBM.Thats where the buck stopped. No more pred(except 5 mg every other day to control itching) no more methotrexate. End of story. I do take 1 neurontin daily to keep neck spasams down. The neck spasam is muscle related to IBM and feels like a Charlie Horse that can last for 2 or 3 hours and I sit on the side of my bed and hold my hand (which is not strong at all)as hard as I can until it subsides. Neurontin I think was introduced in the decade of the brain(1990-2000)as a good drug to control epilepsy siezures but has been used recently with Neurologists that speciality is muscle diseases. It work good for me. I wondered if anyone else had itching and rashes that seemed like THE 7 YR itch. Sorry about sending you to the mixed drink section for Coco for cream of coconut.If you want a can send someone to get it for you. I truly find this group so rewarding. Let me hear from ya'll(thats Texas talk for you all or all of you.)Some of the humor in this group just "blows my socks off" and I can always use a good chuckle. Sue wsuegil@...