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DMD Users - What has, or would make you switch Meds?
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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? .
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26 Comments Post a Comment
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721523_tn?1331585402
I changed to Gilenya.  I had been on Betaseron for 1 year.  During that year, I had the relapses that required steroid infusions.  My Dr. thought that this was too many.  I got off the Betaseron at the 1 year mark to try to conceive my 3rd child.  After she was born, I started taking Gilenya.  I have two different Dr.'s that I see for my MS.  I like always haveing a second opinion.  they both agreed that I shcould change.  In the year for Dx to pregnancy, I had developed too many new Sx and lesions during those 3 relapses.  

I have notice that on Gilenya I have less replases, but more often have mild Sx.  I do like taking a pill instead of the injectable.  I don't have the flue-like symptoms and such that I did on Betaseron.  I am not sure that I would have made the change except that my life change (3rd child) and the realization that Betya was not really working came at the exact time that Gilenya hit the market.
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1831849_tn?1383231992
I skipped CRABs and went straight to Tysabri infusions. I'll have my 6th on Sunday. My recent MRI's showed no new "progress" of my MS and this confirms the lack of relapses and symptoms since I started Tysabri.

I like the relative convenience of once a month infusions rather than daily/weekly injections. I think it's still too early to know whether Tysabri is working it's magic, or my MS is in a naturally dormant phase. The only thing that would be tempting would be BG12. If it does the same thing, taking a pill would be even easier than monthly infusions.

Kyle
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2063887_tn?1337833346
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.
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1475492_tn?1332887767
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.

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Avatar_f_tn
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!
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1396846_tn?1332463110
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
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Avatar_f_tn
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.
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1831849_tn?1383231992
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
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294425_tn?1288531995
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
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1396846_tn?1332463110
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
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1831849_tn?1383231992
CRAB = Copaxone, Rebif, Avonex, Betaseron
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Avatar_f_tn
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.
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198419_tn?1360245956
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 :)
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Avatar_n_tn
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?
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721523_tn?1331585402
I am not sure waht you mean about the monotered like that.  I don't do anything different than I did on Betaseron.
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382218_tn?1341185087
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.
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1983221_tn?1333509785
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.
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198419_tn?1360245956
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


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1678656_tn?1369237418
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
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5112396_tn?1378021583
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.
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Avatar_f_tn
I've been on Copaxone for 10 years.  

I've experienced it's worse side effect -- the chest tightening, flushing, then chills -- numerous times. But I take my shot at night, so when it happens I just go to bed and am fine in the morning.

I've been lucky, only 3 MS problems since being diagnosed in 1998, and 2 of those happened prior to starting a DMD.

While injecting daily is getting old, and I have the lumpy or bruised skin to prove it, I am still leery of switching since the side effects of the newer drugs seem to be harsh.

Since my MS is mild, I think I'll stick with my current drug until or if I have no choice. My doc had something to do with BG12 and is told me that while he doesn't want me to be a "guinea pig" that after its been on the market for a while he wants me to think about switching. We'll see.
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Avatar_m_tn
Started with Copaxone...it had no effect. Switched to Beta and had good results for awhile but then it started making me sick. The flu like symptons where worse than the MS and when I got a fever from the shots of course my MS symptons worsened. Been taking Avonex for the last 6 months. Take it on friday and get sick for part of the weekend but been doing better. I want to know more info on the new pill that came out with no side effects. I would switch if it works.
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1831849_tn?1383231992
The only DMD I've ever received is Tysabri. I've had 17 infusions. It seems to be doing the job. My last JCV blood test turned up positive. Luckily the LP done at the same time did not. My doc likes to reevaluate Tysabri use at 24 months anyway, and with the positive blood test I'm going to have to switch sooner or later anyway.

I'm likely going to be switching to Tecfidera in the near future.

Kyle
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1637739_tn?1371692306
I talked with my neuro 6 months ago about BG12 and we both think its a good choice.  I will have been on Copaxone for past 2 years -  since I was diagnosed.  I have had one bad and one good MRI but I feel deep down its not working.  

Even though my symptoms are mild I want to be more aggressive before I have worsening symptoms or permanent ones.  Therefore, on May 3rd I will be most likely switching to Tecfidera.  I am scared but hoping that I will feel better....normal again.  

Jeny
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198419_tn?1360245956
Pardon the bump folks, but I'm officially............ Back on the Market! DMD shopping market that is............

Soooooooo knowing what I know, and you know, can we revisit this question? Rebif did me well for 5 straight years. I've not progressed, and my MRIs last year were stable.  I'm enjoying stability more than I could have ever imagined.

Anyone else out there like me? Re-visiting the DMD market for a switch? If so, what do you consider first? I'm not in a situation where my original did not work, so that is off the decision table. I feel guilty about not getting back on the same. . But in the back of my mind of course because I'm doing well now, I went against my own advice and stopped for a break.

Knowing MS is never silent, I must get back on one.

Mind walking a veteran through this- one who knows what to do, but needs some discipline to do so????
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5538989_tn?1386389853
I just made the switch and couldn't be happier! Tecfidera has been a great fit for me. I already took a vitamin after dinner so it's an easy transition to add something else. I like that TEC has been out on the market for some time. One psoriasis patient had utilized it for 15 years. It's something I feel better in knowing that the side effects are out there and I don't feel like I'm experimenting with something "new".

I hope that others are able to give you some great insight and you find what you are looking for :)

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