DMD Users - What has, or would make you switch Meds?

[sllowe]

As our MS World turns, and we talk about the not-so-distant future of individualized medicine for MSers, i.e., identification of biomarkers (what may make one med work for us, and perhaps not the other).

Short of knowing (because it's going to be awhile) exactly what's prone to work for you, or, the "You Should Take This One" smoking gun jumping straight out of the petri dish in a lab, how did you decide to change?

For those who haven't changed and currently on a traditional (CRAB), what would make you jump ship off of a an injectable? And, if you've already gone oral, or infusion, what made you decide? Was it DMD failure? Was it side affects? Curiosity? Progression?

All of these things we are suppose to consider when making a decision, but since we are all family here, in the end, we all have our own personal reasons. If you feel like sharing, would be interested in hearing the rationale.

For me, I'm still on Rebif - I do believe it's working. But, I do get sick of the schedule. Honestly, I do fancy the thought of switching one day for lifestyle convenience. But, would that choice affect my health? Rebif/interferon very well may be "the" smoking gun that's kept me from progressing.

Have thought of this from time-to-time, and figured it's something I'd personally not consider for years to come, but the more I learn about future meds and MS, the more I realize the future is not so far away.

Care to share? .

[oneluckyone]

I'd like to add the question....what side effects have you gotten from the treatment type you are on? I know everyone reacts differently, but I am curious. I am currently deciding whether to do Rebif or Copaxone. I'm weighing the risk of being tired and having the flu like symptoms (and I also have a history with depression, which my Specialist said Rebif might enhance this) with the benefit of having only 3x/wk injections vs the lesser of side effects, but having daily injections, and risk of injection site reactions. What are your thoughts? And, what made you ultimately make your decision?

[sllowe]

Thank you all for sharing your thought processes where DMD switching, or starting is concerned.

It's reassuring to me to read we take the docs recommendations (that's what I did too) at times, which is most times dictated by our disease course, and current situation. Takes some of that pressure off our plate.

Thank you so much - I know this helped me, and feel it will help others too who have to consider this :)

[kerrtelli]

I am in my fifth month of copaxone.
I recently (two weeks ago) had another MRI and EMG.
No change on the MRI but some activity on EMG related to CNS disease.

The neuro wants to stick with copaxone at least for six months but I am rapidly losing strength (based on pt eval).

So, if I had to choose, I would try something else only because of the progression of weakness and spasms.

ISP see neuro Friday so we will see.

[kwarendorf]

CRAB = Copaxone, Rebif, Avonex, Betaseron

[figuerpa]

Ok so maybe I am out of the loop but what does CRABs stand for. I know DMD id disease modifying drug but what is CRABs. I feel silly but I will never know if I don't ask right?

Paula

[Cosmobirdy]

I was put on Rebif immediately after I was diagnosed.  I had a terrible time on it - was like having a severe case of the flu, every single day.  I was still going to hang with it, though, because I figured it was at least helping.

At my 6 month check up with my neuro, he did his exam and said that things were clearly advancing, and he was very concerned.  That's when he mentioned Tysabri.  Blew me out of the water - I never thought I'd need to go to that, and certainly not so early in the game.

I did as much reading and research as I could for the next 3 weeks, and we decided to roll the dice with Tysabri.  I was going down fast, Rebif wasn't helping, and my neuro didn't feel that any of the other CRABs would help.  My hubby and I felt the risk was worth the potential benefit.

I have been on Tysabri ever since - I had infusion #45 yesterday.  I am JC virus positive, so I have 2 of the 3 major risk factors, but at this point we are still staying with Tysabri.  It has not always been an easy ride, but we all feel that it has definitely slowed down the parade of symptoms and that I would be in much worse shape if I wasn't on it.    

I am keeping my eye on some of the new things in the pipeline, in case I have to make a switch for some reason in the future.  But there are major risks with stopping Tysabri also, so it is not something I'm in any hurry to do.

Rita