This Is MS Multiple Sclerosis Community: Knowledge & Support

Sorry, time to leave the board.

-finn

Hi: For what it's worth, I was (briefly) in a study pairing minocyline and avonex. I had to drop out as I did not tolerate the avonex. I recently visited with my doctor and he mentioned a study with minocycline and copoxone going on in Canada right now. He said he suspects the minocycline could stand on its own as a treatment option, but no one is willing to fund a study as such.

Sorry, time to leave the board.

-finn

Finn asked: That is interesting. Just out of curiosity, was that an official study or a small scale experiment?

I'm not sure of the official distinction between "official study" and "small scale experiment," but I think it was "official." At any rate, I believe it was funded in part by Biogen (Avonex). I don't know if it was part of a larger study with other centers or if it was just at the clinic I visit. I do know I was #13 in the study and at the time I enrolled they had had no relapses among the other 12 enrolled. How's that for anecdotal information!

-- Butterfly

Sorry, time to leave the board.

-finn

So would your MD agree to keep you on the minocine, even though you did not tolerate the avonex?

Cathy,

I still have a three month supply in my kitchen cabinet....(no one asked for it back when I dropped out of the study). I suppose I could just take it for awhile, and in fact I did for a week in July. It makes me a little woozy, but I believe that would go away if I took it long enough (back in January I assumed the wooziness from from the avonex, but I experienced it again in July). However, I am NOT taking it because I am hoping to get pregnant soon. So, that settles that for awhile. But I would definitely consider lobbying for it again down the road. We'll see...my current treatment plan is to stay pregnant and breast-feeding until they find a cure. Well, seriously, I do feel hopeful that if I do get pregnant, by the time I wean there will be some more options out there. We'll see...

Butterfly

P.S. Just to clarify, I wanted to be pregnant again BEFORE I was diagnosed with MS and am actually just grateful that I feel well enough to consider it again!

You go girl-pregnant and breast feeding sounds good to me!! I am too old to go that route at this point. I have an appointment with my internal medicine Doc who is also board certified in infectious disease,a nd I am going to bring her the literature I have found and see what she says. I have been feeling so crummy lately, a lot of spasicity, bladder problems, that kind of thing. Not sure if its the heat here or what. I am hoping she will let me give the minocycline a try-don't think it can hurt. Well, thanks for the input, and good luck with the getting pregnant thing-I envy the trying part!!!!

Cathy

hello everybody,

I am a newbie here - and I am writing for my partner, because he is not fluent in English (me neither ).

My partner has very recently got the diagnosis : primary progressive ms.
So I am reading and trying to learn as much as possible about this.

I find minocycline very promising - I am not a doc, but a chemist and the option "ms is not an auto-immune disease" might not be true, but certainly it is worth to explore that idea.

Now our problem is, since it is ppms, my partner does not get any treatment at all. We would be willing to try minocycline - since it seems to be safe - but, no doc wants to prescribe it. Can anybody help? We are living in Belgium. Thanks in advance.

Sorry, time to leave the board.

-finn

Well, I'm talkative today, huh?

I just wanted to throw in my support for what Finn and Sarah just said.

And although I know the NMSS isn't on everyone's "best friends" list, I just have to say that they told me the same as what Finn just recommended about finding a "cooperative" neuro. The NMSS referred to it, though, as "engaging" the researchers/doctors in the field, and supported our continued efforts in "sharing" our ideas, etc. (And of course, although I know it may not be a popular viewpoint with all, I am very supportive of the NMSS, but do respect others' differing opinions.)

For some reason I just found that interesting.............

Best of everything, bruintje. We all know what a "hard row to hoe" this all can be. But we're all here to help in any way we can! (Man, I'm full of quips and quotes today, too, huh?)

Deb

About the minocycline. I found a neuro wanting to subscribe it. Not because he believes in it - just the message : how long will you take it before you believe it does NOT work? I said 2 months.

Ok, not for me, but for my partner - he is taking it for about a couple of days - he is getting worse - only a little bit.

Sure I will keep you informed!!!

Dear Guest, thank you for sharing and please keep us informed. Also, please register so we can reference you by a better name!

As a related aside, we are also closing out "guest posting" privileges precisely so everyone in the community can get to know each other.

Hé sure I did register - and of course I will keep you informed!