Devic's, next step in treatment

[foreyes]

Hi Dr. Kantor, tanks for giving of your time to answer our questions.
I was diagnosed with Devic's syndrome in 2001 and treated with the following
Mtx, developed lung problems
Cellcept, just didn't work
Rituxan for three years, which has been wonderful but I've developed an allergic reaction to it, which does not respond to wait and try again method.
Any ideas about what to try next? My rheum, I have Lupus also, wants to try oral Cytoxin and the neuro thinks monthly IV  Cytoxen or plasma exchange would be better, however , they are leaving the decision to me since all have serious risk. I also need to get my portacath removed due to clotting and I'm wondering if I shoud get it removed only or removed and replaced. I have to make a lot of decisions and would like an objective openion.
Thanks

[doublevision1]

Hello there

as Quix mentioned, there are a few here, myself included, who are currently being investigated for Devic's.  If you don't mind sharing, it would be great if you could tell us what kind of symptoms you had at onset, how you were diagnosed, how you are doing now, etc. Were you previously diagnosed with RRMS or did they know it was Devic's from the start?
I'm sorry to hear that you can no longer tolerate Rituxan, I hope that whatever alternative you select is as effective and more tolerable.  

Peace
~doublevision~

[Quixotic1]

Hi, Welcome to the MS Forum.  You have mistakenly posted your question on the Patient-to-Patient Support MS Forum and not the Expert Forum where Dr. Kantor can see and answer your question.

Please click on this link and post your question to Dr. Kantor.

http://www.medhelp.org/posts/show/787897?post_id=post_4117801

He only takes one question for free a day, but if you want to and you can't seem to get your question in, then you can pay $25 for a certain answer.

You have really been through a lot.  We have a great deal of interest here in Devic's so I welcome you to join us, tell us what you have been through and stay for the friendship and support.  We have other's being worked up for Devic's.  Also, I'm sure you could teach us a great deal.

Quix