The neurologist at the ALS clinic took my husband off Rilutek because of severe diahrrea and is going to try him on minocycline 100mg 2x a day. Has anyone had any success with this drug? Also, do you think that being diagnosed 6 months ago and now paralyzed in right arm and almost fully in left arm is considered progressing quickly? Thanks for all your imput, I rely so much on you now.
Phyl
Hi Phyl. Your husband's progression does seem fast by the averages seen here but he could level off or plateau and stay the same for a while like some of us have. If you type in Minocycline? into the search and go down about 8 or 9 topics there is a series of postings about this drug. Hope it helps.
AL.
Pollyanna
02-18-2007, 02:41 AM
Phyl, my husband's ALS doc prescribed this drug in addition to the Rilutek. He did have diahrrea for a few months, but it seems to be levelling off now. It's hard to answer your question because according to our doc, the purpose of the drug is to slow the progression, so it's hard to know how fast it would be going without it, right? My husband's progression seems very fast to us, too. He was diagnosed in September and at that time was still able to get around slowly with a walker, and needed a little assistance standing up. Today, just five short months later, he cannot walk at all, cannot stand, and cannot use his hands well enough to feed himself! I've said it before, we feel like we are on a runaway freight train!! So enjoy every moment you have, and like us, pray that Al has nailed it and he will plateau for a while!!! Hang in there and stay active in this group....these are great folks with a wealth of information, experience, and support!!
