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198419 tn?1360242356

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

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? .
26 Responses
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1831849 tn?1383228392
My DX came more than 20 years after MS first showed up. I had some symptoms then that were investigated briefly but resolved before anything was diagnosed. The same thing happened almost 3 years ago. In between these episodes I was fine.

Last July it started up again, bigger and badder than before. By the time I was dx last October I had moved on to SPMS. My neuro didn't think that CRABs were going to have that much impact. he also felt that CRABs would not play well with some of my underlying symptoms/issues, like urinary issues, chronic stuffy nose and hair trigger irritability. He felt Tysabri would provide the most potent attack while mitigating the aggravation of my other "issues".

Who was I to argue? :-) So far so good!

Kyle
Helpful - 0
Avatar universal
I was on betasaron for a few months but had a major relapse. Thinking maybe it was not the right choice for me my neuro switched me to Copaxone.
I chose to stop Copaxone due to significant hair loss. If it was the only choice I would have accepted the hair loss but thankfully there are many choices.
I had a newer blood test for biomarkers and my Neuro said the betasaron should be effective for me. So I am currently giving it a second chance.
If it does not work my next step is Gilenya. But it would be temporary, my Neuro does not like to keep her patients on it for more than a year.
Helpful - 0
1396846 tn?1332459510
I would change if Copaxone isn't working or stops working, also would change if the the site reactions get to be bad from the Copax.

My nuero first reccommended Gilenya when he wanted me to start a DMD but I didn't want to have to be monitored like that so I chose Copaxone for the lack of side effects.

I am only in my second month of injections so I am not sure what the future holds for me in regards to my current MS treatment but I will know more when I go for my next MRI

Paula
Helpful - 0
Avatar universal
Well, I didn't switch, I had resigned myself to Copaxine and the doc told me he wanted me on Tysabri, period.  So I went with his recommendation.  I like the once every 28 day schedule!
Helpful - 0
1475492 tn?1332884167
I am not sure Shell what would make me change. I think I would consider moving to Rebif should I have another relapse in the next six months. I know my doctor wants to put me on BG12 and has mentioned Tysabri if Avonex/Rebif or BG12 are not best for me.

I would consider taking a different path if I was showing progression and/or the chances of decreased flares vs risk was significant. I am probably going to make the move to BG12 pretty quickly after it's release. I am naive with regard to Tysabri but am open to taking it should other medications fail.

I think it might be a little soon considering my disease process. I find it interesting that Kyle went straight to Tysabri. I'd like to know more on how they determined that was the best path for him.

Helpful - 0
2063887 tn?1337829746
I'm currently doing Copaxone.  I would consider switching if I started having relapses or more/worsening symptoms or found that it's really not helping.  I've only been on it for two months so we will eventually see how it's working.  I don't mind doing the injections and am feeling better after my last flair.  It seems to be working and I'm willing to stick with it until I'm sure something else would definitely be a  better choice for me.
Helpful - 0

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