Immunomodulatory agent?

[cjtmn]

In reading through my neuro's write up, she mentions that if we do not find evidence of MS in my upcoming tests, she would consider starting me on "an immunomodulatory agent to reduce the frequency of relapse."

I'm curious about this idea because it was 6 years in between my double-vision episodes. Any links to previous posts and/or references on the topic would be greatly appreciated. I have googled for answers and searched this site. So far, nothing makes a ton of sense to me. I don't fully understand what it is or why it would make sense in my case.

Thank you for your input.

[cjtmn]

Please forgive me for repeating part of my initial post. I think I am a lot more frazzled by all of this than I realize :(

I sincerely appreciate the information you provided. Any additional thoughts or ideas are all welcome.

[cjtmn]

Thank you, Kyle! I have had 2 episodes of sixth nerve palsy spaced very far apart (6 years) and the last episode was quite long as it included a myriad of other symptoms as well. I couldn't drive for 3 weeks & had another 3 weeks after of pretty intense dizzy/balance/oscillopsia. Of course, all of my appointments with specialists happened after my eye problems cleared up.

I have had brain MRI w&wo contrast (unremarkable), spinal MRI w&wo contrast showing 2 subtle T2 signal changes @ C3 and C4-5 w/o enhancement or mass effect, MRA/v (normal) and a host of blood tests only resulting in slightly elevated ACE (68) and CRP (9.2). B12 is low side of normal @ 380, but MMA came back just fine. Ophthalmologist & Neuro-Ophth both confirmed that my eyes & optic nerve are physically healthy. Weird...

I have agreed to additional blood tests (Lymes, NMO, LFT, etc) & EP testing, but have declined the LP at this time. Also going through Vestibular/hearing tests as I'm still randomly dealing with dizzy/balance/oscillopsia.

I think I just cannot believe that I could even possibly have MS, to be honest, and find the idea of starting a drug treatment w/o any known cause to be strange.

[kwarendorf]

Hi cjtmn -

As JDC mentioned, your doc may be referring to clinically isolated syndrome. Basically CIS is MS that has happened only once. The MacDonald criteria, often used aas the diagnostic standard for MS, requires among other thinfs 'dissemintation in tyim.' This means that there is evidence of MS activity on at least 2 occaisions at least 30 days apart.

If your vision issues are being caused by MS, you would certainly meet the dissemination in time criteria. Your doc may be looking for evidence that confims the second episode was,is caused by MS. Are you having MRI's done?

As to the drugs, MS is most often treated with disease modifying drugs, DMDs. These drugs fall into 2 categories; immunosuppressants and immunomodulators. THe majority are immunomodulators..

These ionclude Copaxone, Rebif, Avonex and Betaseron. This group of firstline MS DMDs are collectively referred to as the CRABs :-) The next line of defense includes drugs like Tysabri, Gilenya and Tecfidara. There are also drugs that are used "off label", like Rituxan. Rituxan is not approved for the treatment of MS. It is approved to treat things like non-hodgkins lymphoma. THis is where cancer can cross over into the discussion.

the reason Rituxan is not approved for MS treatment is that it is a very expensive process. It is perfectly safe to use on combating the progress of MS. At least I hope it is, as it is my current DMD of choice :-)

Kyle

[cjtmn]

Thanks for the replies! I have googled, and it looks like it a classification of drugs used for a variety of reasons. I really can't make heads or tails of what I've found thus far and Cancer doesn't make sense for me. I guess it's another in a long list of questions after my next round of tests.

[Joiedecour]

Oops sorry didn't mean to post twice.... Not sure now if above is correct now. A quick google search suggests what you are referring to are drugs used in cancer treatment ?

[Joiedecour]

Hi,
Sorry you haven't had a response yet. I am thinking your neuro is referring to the disease modifying drugs? Perhaps treating you as 'clinically isolated syndrome' since she can 't meet McDonald criteria?

[Joiedecour]

Hi,
Sorry you haven't had a response yet. I am thinking your neuro is referring to the disease modifying drugs? Perhaps treating you as 'clinically isolated syndrome' since she can 't meet McDonald criteria?