- Search CSN:
- Members: Login to search all areas
- Not a member? Click here to search public areas
neuropathy
|
|
Jun 16, 2007 - 6:01 pm
I was taking Thalomid, ultimately at 200 mg. I started experiencing neuropathy in my feet and hands and alerted my doctor. During my period of taking Thalomid and Dexamethasone, I achieved very good results. In fact, myeloma was diagnosed 6/06 and in March a bone marrow test showed normal results. I stopped the Thalomid 2 months ago.I now take Dexamethasone once a month for 4 days at 20 mg. per day. While I am not a doctor, as I learn more about neuropathy, I do not feel that my doctors gave enough consideration to my neuropathy concerns. At any rate, my condition worsened last week while I was taking Dexamethasone. My first question then is, "Has Dexamethasone affected anyone's neuropathy?" Secondly, "How long has it taken for anyone's neuropathy to improve?" I have been taking Gabapentin at 600 mg twice a day for 3 weeks and I don't think it's doing any good. Thanks for "listening." |
Joined: Mar 2003
Hi. I also took thalomid at 200 mg. (which is now considered too high a dose, so i'm surprised they would have you take that much) with dex for 18 months 5 years ago. At the time, i did not know much about neuropathy; i knew it was possible, but my doctor didn't inform me (perhaps he didn't even know) how bad it could get. It creeped up on me and when it started getting bad i asked to get off the thal, but it was too late. I have very numb feet, same lack of sensation in my ankles and lower legs and my fingers are also half numb. What i didn't know was that this is permanent, and, i hate to tell you this, but it can continue to get worse after you stop...mine did. I tried taking what you are taking but it did no good whatsoever. Unfortunately, chances are you will not get any better than you are right now. I belong to a listserv (online discussion group) of myeloma patients and this has been discussed many times. There are people who say if you follow this one regiman (which involves taking a lot of different suppliments) that it can help, but it was just too much and a lot of people said it didn't do anything. Another person said taking certain vitamin b suppliments helped her husband, but no one else had said it helped them. If you are still on the Thalomid, i strongly suggest you ask to get off it. Now a lot of doctors are using a different form of the same drug called Remlivid which does not appear to cause neuropathy, at least not like thal does. Another drug that can cause (or make worse) neuropathy is Velcade, which i declined to take when recommended by my doctor because i didn't want mine to get any worse. I'm sorry to be such a downer with this, but i thought you should hear this information. Good luck with your treatment...i hope you continue to do well.
Valerie
(dx'd 8/01, no transplant, currently stable)