Hello everyone,

I haven't been on in a while. It was a bad summer for me. Lots of flare ups. It seems as soon as I start to get better something else happens.
I'm hanging in there though.

I started to see a psychologist to help me deal with it all. She is really good. Has spent several years facilitating groups for people in chronic pain so she knows a lot.

With my last flare up my neurologist prescribed Mexiletine. I started at 150mg now up to 300 today. He wants me to take it 3 times a day.
Has anyone taken it. If so what were your results? I did read some of the threads on here for Mexiletine. They seem very mixed in how people felt about it.

I'd appreciate any information anyone can offer.

There was a person here who did this fairly recently. Do a search with the drug name, and his posts will come up.

I don't recall the poster ID right now. The upshot was that it didn't work for him/her, and the esophageal damage became too great and he/she discontinued with a follow up post several months after starting.

In the decade or so I've been on this board and the previous one, there have been very few who succeeded with this drug. It is very damaging to the stomach and esophagus. Doctors don't prescribe it often. It is sort of a "last resort" type intervention.

This drug is very difficult and potentially toxic. Here are the Medwatch statistics on reported cases of side effects. Notice the low graph at the top of the page....this means not many people using it now.

http://www.drugcite.com/?q=MEXITIL

Thanks Mrs. D., I think he is using it as last resort. I have so much trouble with medications. The side effects seem to really affect me.
Not sure if I caught a stomach virus or it is the medication. I was on it for a week before the nausea started. I'm thinking possibly a virus.
I did see the post you are referring to. If I remember at first he thought it may be working but he had a lot of stomach issues with it.
I feel like my skin has gotten so dry since taking it.
Thanks again!

I'm thinking it is the medication.

Just a little update Mrs. D. I had to come off the Mexiletine. It was the med that was making me sick. I stuck with it for over 2 weeks. I saw the rheumatologist yesterday and he said to stop it.

I don't know if you recall, I have IVIG treatments once a month. I don't think they help with the neuropathy. However, I developed muscle weakness now and it helps with that.
My rheumatologist wants me to start Retuxin. He thinks it will help with the neuropathy pain and joint pain. The flare ups have been more frequent so I'm willing to try. He said it doesn't have many s/e. I still have to investigate it while they get an ok from insurance.

Do you know much about it?
hopeful

Here is the drugcite data on FDA reported side effects for
Rituxan:

http://www.drugcite.com/?q=rituxan

Here is a discussion about using it for PN:
http://neurotalk.psychcentral.com/sh...hlight=rituxan

and this:
http://neurotalk.psychcentral.com/sh...hlight=rituxan

If you keyword it into a search here there are more posts mentioning it: Spell it... rituxan

I have no personal experience with it however.

A Google search brought this paper up:
http://www.ncbi.nlm.nih.gov/pubmed/16819424
Seems it works if you have auto antibodies to nerve proteins causing PN.

As always thanks for the advice Mrs. D.!