The DMD Debachle
 

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 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.

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:rolleyes: 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!

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.

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.

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!!!!:grouphug:

Was on Copaxone for 1 1/2 years...and was getting increasingly severe symptoms. so neuro decided with me that I am off of the C and on to a clinical study next month...it's a B cell agonist, which he feels may work better considering the sxs.
I love not taking shots, but hate how my sxs have increasingly gotten worse.:(

Wow after reading your horror stories I guess I should count my blessings. I started Copaxone 5 years ago right after diagnosis. My MRIs are stable, or as stable as an imperfect process can be and I don't have any issues with the injections other than local site reactions and some dents in my legs.

As for my daily MS I'm still able to work like a dog but I'm tired all the time when I'm not working and need about 10 hours of sleep each night. Have times of minor nerve pain, paresthesia, increasing bladder issues and some bowel urgency, yippee. :mad:

I'm too afraid not to work as much as I do because I think not having the income I am used to would actually be more stressful for me than working is. Sucks that at 45 I should even have to worry about this kind of *****.

My first DMD was C. I stuck with it (no pun intended! :p) for a year but it wasn't helping me. My MRI showed more lesions. From that I went to Betaseron. The side effects were terrible and my next MRI showed more lesions. I decided to go off of all DMD's and give LDN a try. I felt so much better within just a few days of beginning it. Like Sally said, it's not a cure and shouldn't be thought of as one......but it certainly made me feel better. I have learned throughout this journey with MS that I know my body better than any doctor or specialist does. I listen to them and then make my own decision about which meds to take and which ones I don't want to subject myself to. Guess I got tired of being a guinea pig. :rolleyes: I really don't care if my Neuro thinks LDN is a viable choice in my fight with MS. It works for me and that's all that matters. :)

I'm back on Copaxone again as of about mid January or so. I was on Avonex first at DX for 18 months, in a clinical trial, and that only worked so-so for me. I still got new symptoms while on it. Switched to Rebif for only five months because I developed severe depression and anxiety while taking it and anti-depressants didn't help at all.

Then it was Copaxone for 18 months and it worked pretty good. I switched to Tysabri (stayed on it about three years or so) because of all the good things I had heard about it. But it didn't work as well for me as Copaxone ... so I'm back on it and plan to "stick" with it for the long run. It has a very long track record of safety and it's working so I'm hoping it keeps working for me. I'm still working 40+ hours per week and working my heinie off too, lol.