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  #21  
Old 01-02-2012, 10:17 AM
Stella Stella is offline
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Join Date: Apr 2011
Location: Scotland
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I was diagnosed with MS in May of Last year and started Rebif in July. I seemed to tolerate the DMD well enough but in August, I started getting a succession of one abscess after another and they were really big and painful as well. In mid November, I got one in my armpit that was especially painful and the doctor sent me to the hospital to have it drained. I was sent at noon and they ended up putting me under general anesthesia and I didn't go home until the next day. That was the last straw and I asked my MS doctor that I wanted to change to Copaxone. I have been trying to stay active and develop a regular routine at the gym but getting these abscesses was hindering me from doing exactly just that. What quality of life is that when you can't get in shape or lead an active life? When I saw my MS doctor in December to tell him I had stopped the rebiff two weeks before, he thought my walking had improved as I tended to drag my right foot. He was under the impression that the Rebif really helped me. I told him I want to go on Copaxone and he also wrote me a prescription for Amantadine for the fatigue (which I won't start until after I start the Copaxone).

Throughout the month of December I have been trying to heal from the surgery and it has been a slow process, and having to go to the doctor nearly every day in the beginning for a dressing change, it soon wore on me. Also, towards the end of December and even now I feel I am experiencing a minor relapse as I have severe soreness on my back from time to time nearly every day and my right foot dragging came back (all this after being off the Rebif for a month). I am still trying to heal from the surgery and am still awaiting to get put on the Copaxone which should happen sometime this month due to the holidays in December.

Last year was the worst year of my life. I am hoping this year will be kinder and bring better things. If you ask me does a DMD make a difference? I would turn around and say, "It does."

Last edited by Stella; 01-02-2012 at 01:22 PM.
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  #22  
Old 01-06-2012, 03:46 PM
MarkLavelle MarkLavelle is offline
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Join Date: Jan 2012
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I started Copaxone 5 weeks ago. So far I've not had any kind of reaction other than a few minutes of stinging after every shot.

Because my immune system was previously compromised (chemo & rad for cancer in '96) my neuro recommended against all the other approved DMDs.

I probably would have opted for Copaxone anyway, based on what I could find to read about side effects and effectiveness. But I'm starting from dx at 55, and only 2-3 lesions. If I was 40 I'd probably be looking at something more aggressive.
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  #23  
Old 01-08-2012, 06:18 PM
MSSpouse MSSpouse is offline
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Stella, if you don't mind my asking, were the abcesses you suffered at or near your injection sites? We had to stop using one pair of suggested sites for the Rebif shots because of bad skin reactions, but nothing so severe as an abcess. Sorry you had to go through that.

Here's wishing you a healthier and happy 2012! Many thanks for sharing your experience.

Last edited by MSSpouse; 01-08-2012 at 06:36 PM.
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  #24  
Old 01-09-2012, 07:20 AM
Stella Stella is offline
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Join Date: Apr 2011
Location: Scotland
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Hi MS Spouse,

no, the abscesses were not near the injection site. This particular one was in my armpit and I am still healing from the surgery. It is such a tender area it takes a long time that is the frustration with it. I was really happy with the injector from Rebif though. It is a shame, I can't use that with the Copaxone once I am on it. The only area I could not use the injector on was the arms as it was so awkward holding it there. Happy New Year to you and yours as well. I agree, hopefully it will be a healthier one.
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  #25  
Old 01-22-2012, 02:03 PM
garyp garyp is offline
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Join Date: Oct 2010
Posts: 181
Default I have been on most DMDs...my input:

To answer TJ1's question of:

"Are you (or were you) on a DMD? If so, what's it like? Any side effects?"

So, apart from Betaseron, over my 16.5 years with MS have been on all of the DMDs.

Avonex : flu symptoms knocked me out for the day after the weekly injection. Switched to Copaxone after 6 months as was continuing to relapse.

Copaxone : zero side effects. Nada. Very effective for 8 years, then started to feel more tired then a couple of years after that had several relapses in a row including a really bad one in 2008 putting me in the hospital...so then switched to Rebif.

Rebif : no side effects that I noticed. However...was not effective as was still relapsing, so then switched to Tysabri.

Tysabri : no side effects. Extremely effective. However, after 3 years on the drug the JV virus assay result predicted a 1 in 100 risk of PML......decided that was a little too close to home for my comfort level, so switched to Gilenya.

Gilenya : have been on that for about 7 months now. Definite impact on ability to exercise at the beginning (lower max heart rate which had a tendency to wind me more easily) however, as the months go by that has become reduced.

You have to trade off the risk of becoming more disabled more rapidly against the risk of the side effects that each of these drugs provide. The fact is, the risk of disability is greater than the risk of side effects....the sooner you start a DMD (even if things are quiet at the moment) your risk of disability in the future (not now) is reduced. I have had this disease 16.5 years now - I can still play indoor soccer with normal people most of whom do NOT know I have MS or any reason to believe that I do. My EDSS is maybe 1.5 - due to bladder and bowel issues.

Going on a DMD is not an easy choice I know. The day of my first self injection, I could not drive because of vision problems. My 18 month old daughter was with us. My wife was pregnant with our second. A large motivator for me in taking that difficult step that day was to increase the probability that I would be able to run around with my children as they got older, to be able to walk to their high school graduations without assistance.

Enough said on this issue!
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  #26  
Old 01-22-2012, 11:07 PM
MSSpouse MSSpouse is offline
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Thank you for that rundown, Gary. I don't know if there are many folks who have as much experience with each one of the therapies now available. It's helpful to see this, even for those who are already using one of the DMDs--and are doing so for exactly the kind of reasons you cite!
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  #27  
Old 01-23-2012, 02:50 PM
andersimp andersimp is offline
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Join Date: Jul 2008
Location: Albuquerque, NM
Posts: 49
Default Caitlin in ABQ seconding Bexfield's advice

Caitlin, dx at 40 w/PPMS, no lesions ever, just "accumulation of disability." We have meds NOW to help with symptoms (and gadgets and gears). But I had a 5 year old at that time - wanted to be as healthy as poss. for her. And there are NO DMDs approved for PPMS. My neuro recommended Copax which I took happily for 5+ years. Am now on Level I/post mice trial at NIH/Bethesda MD for PPMS ...
Was reminded by neuro that it's an INVISIBLE disease - so even if we think "benign" (never heard that b4) or don't have relapses, the neuro impact can still happen. And the companies have financial assistance if $$$ is the issue ...
One biggo vote for "DO IT" and Copax has the least side effects!
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  #28  
Old 01-24-2012, 10:58 AM
TJ1 TJ1 is offline
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Thanks for the responses on Gilenya everyone.

It sounds like a number of Gilenya users have retained their ability to run/bike/whatever it is they do.

My big concern is starting on Gilenya and then finding, Doh! I can no longer go running at a decent pace.

My deal is continued new lesions, but no disability, so sitting on the fence on a DMD, but know I'll be getting off the fence at some point.

You all seem so organized re: DMDs -- where are the procrastinating, kick-the-can-down-the-road slackers?!?! ;-)

Last edited by TJ1; 01-31-2012 at 12:01 PM.
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  #29  
Old 01-28-2012, 11:14 AM
pawpaw pawpaw is offline
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Join Date: Oct 2008
Location: Kentucky
Posts: 208
Default reason for no posts from those not on DMD

I am a gilenya user and the side effects are really not a deal breaker. My max HR is lower and I have to work harder to ride my bike as fast. If I choose not to take DMD, 10 years from now I can't see myself happier that I rode my bike faster but now my brain doesn't work and I have trouble walking.
If you have progressing lesions, you have progressing disability. Our bodies have a lot of duplication and redundancy. Once we use that up, the disabilities start to appear and each new lesion will cause symptoms. You want to stop those new lesions now.
Perhaps the reason there are no posts from those not on treatment is that they have cognitive dysfunction and can't get it together to post.
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  #30  
Old 01-30-2012, 06:04 PM
Jim829 Jim829 is offline
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Join Date: Dec 2011
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You might have seen this, but here is a good article from the Rocky Mountain MS Center Summer 2009 Newsletter (“It’s Just the Tip of The Iceberg: A New Paradigm for MS”), talking about the “clinically invisible” damage that occurrs between “relapses.” Influenced me to start on Copaxone.

http://www.mscenter.org/images/stori...er09lowres.pdf
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