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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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5112396 tn?1378017983
At the moment, I'm sitting tight. I don't actually know what I'm on (blinded drug study), but I'm a huge fan of fewer things to remember. I currently inject weekly and am injected monthly. If I'm having to stare down the potential of spending decades on something, I know compliance-fatigue is something I have to take into consideration. So something monthly or weekly is ideal.

Of course, if I developed antibodies, I'd hunker down and choose my 'next best'. Pills? The birth control variety has proven I'm not good at remembering that method! Plus, I'll not lie; there's powerful placebo juju in the ceremony and deliberate nature of an injection. So much of dealing with MS is mental. Swallowing my medication like I would a vitamin might take away some of the agency I feel by administering via a more extreme method.
Helpful - 0
1678656 tn?1369233818
I've been considering changing from Copaxone as well. My MRI shows no change. Nothing worse, but nothing better. I'm aware of the increased side effects of the other injections and all that goes with that. But I know people on other injections and they seem to have MUCH better results. I know everyone is different and one med may not work the same for me as it does you, but it seems if one is getting INCREDIBLE changes from one med and I'm getting none from another, wouldn't it seem that one may work better than another?

Haven't talked to my dr. about switching, but it's been a thought of mine. :D
Helpful - 0
198419 tn?1360242356
With the approval of another oral medicine, it's on my mind, so figured it's likely on many others as well!

From my old post:

"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?"

-Shell


Helpful - 0
1983221 tn?1333506185
I'm on Copaxone and so far so good (only 1 week though).  I like giving myself injections because I feel like I'm "sticking it to the MS" (pardon the pun).  I would consider Gilenya once it's been out a little while longer though because initial research I've read seems to indicate that it has a higher rate of success (33% for standard CRABs v. 50% for Gilenya) but I would like to see it's track record for a little longer.
Helpful - 0
382218 tn?1341181487
After several weeks on Rebif caused an elevation in my liver enzymes, I switched to Copaxone.  I would switch to something more aggressive if I was markedly declining or if I could no longer tolerate it.  I have no signs of lipoatrophy yet though if this develops I doubt that this in itself would be enough for me to change therapies unless my neuro thought otherwise.
Helpful - 0
721523 tn?1331581802
I am not sure waht you mean about the monotered like that.  I don't do anything different than I did on Betaseron.
Helpful - 0
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