[SallyC]

I wrote the below note in the PPMS/SPMS sticky and thought a thread on how the DMD/CRABs are doing for us, would be good. I would like to open it up for discussion.

What DMD are you on, for how long have you been on it, has your MS progressed (in your eyes) while on it... and how do you feel???

I was on Avonex and then Copaxone for about 10 months. I stopped Avonex because of the side effects...I stopped Copaxone because it just wasn't working.

As soon as I went to SPMS, I stopped all poisons.

That's the thing that hurts me the most about being SPMS, there are no healing meds being produced that fills our need.

LDN helps me a lot and I love it, but it isn't a cure and will not make my MS go away. None of the DMDs are going to make it go away either, but, at least I feel better with raised endorphines. I was sick constantly while on the CRABs..

It's much easier to find a med for RRMS, since it is, in the early days, self healing, so they can say...AHA, it's working..

If the DMDs do their job and stop your MS from progressing to SPMS, then and only then will any of them be worth a ****.

[FinLady]

I was first on Copax for two years. Loved it. After my DX year of being back to back flares, my MS was finally stable. Had energy. But I was one of the few that had many of the immediate post injection reactions (IPIRs). When it went from every few months to every few days, was yanked off of that one.

Then I tried Rebif. MRIs were still stable, but did not feel good on it at all! Premedicating with aleve helped some with the flu like symptoms. Fatigue got really bad, and was mad at the whole world 9 days out of 10. Cog fog shot up like a rocket, probably due to the combo of the med effecting my mood and being tired all the time. 10 months into that one, had an allergic reaction to it. No interferons for me now.

Because of what happened above, way too scared to try Ty. Inbetween neuros right now, so in a bit of a waiting game right now.

[barb02]

I was on betaserson for two weeks. When I increased the dose to 50%, I had a nasty allergic reaction. So the neuros said no more interferons. I was then on copaxone for 4 1/2 months. Had six IPIR's in that time accompanied by high temperatures, cold chills, and shaking. Next in my first year journey of MS was tysabri. Had 5 infusions and experienced increasingly severe infusion reactions.Also developed antibodies I decided to try copaxone one more time. On the very first day, I did not have a IPIR but about three hours after the injection my temperature shot up to 103. So both my neuro and shared Solutions decided that was rather unusual and I was told to stop injections. So that is my experience with DMD's. The next step in my journey will probably be whatever oral med is approved first. On the other hand I have been stable for the past two years -- so maybe not!

[kicker]

I'm 53, PPMS, in a chair, did Rebif, tried Novantrone, compounded 4-AP. No side effects but no help either. I now won't get MRIs anymore (Why? Not like they can do anything except tell me, yeah you still got MS, well, duh.), Try to use a minimum of meds. Not anti-doctor if it's needed but choose when I go, not their "MS" time schedule.

[Dejibo]

After first being dx in 2006, I began Betaseron. I had my 3 month follow up, and my liver enzymes were thru the roof! I set a clinic record. I didnt feel badly, but it was clear, I needed to be pulled from the med.

I have been on Copaxone since that time, and it took more than a year to start working with me. They clinic was ready to pull me from the drug, and finally about 14 months in, it was clear it was having a stablizing effect on my MRIs. fast forward 2 years, almost 3 and I feel MISERABLE on this stuff. I cant focus, I am easily distracted. I am more heat intolerant, I am grouchy, and feel angry at the world. How do I know its the C? when I stop, ALL these sx go away!

I dont feel that C is helping or hurting me, other than the side effects. The clinics keep telling me that since I couldnt tolerate an interferon, that ALL other interferons are out of the question for me. Inc Ty! I cant take LDN because I take narc meds, and cant give them up. I stick with the c because, its either this or...hiC or Novatrone. Since I did so much chemo in the past, I doubt I would qualify for novatrone or HiC anyway.

I do feel my MS is progressing, and now we are playing the SPMS vs RRMS and the CNS vs ANS MS game. I hate this silly disease.

[SallyC]

I can't tell you how much I appreciate all your responses and DMD stories. I helps me to know you better and feel your pain.

I believe it helps us all....Keep them coming!!!!