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Q: To medicate (or not?) - new here

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  • #16
    Gilenya One year experience

    One year ago this week I started Gilenya.
    First, a bit about my situation-
    I am a very rabid cyclist who has had my VO2 max measured, do interval training, etc. We ride about 150 miles a week and I was hoping to be faster this year, So, my experience and side effects probably don't apply to most folks.
    Overall, the Gilenya has few side effects- I don't feel any different during the day. I have noted no increased fatigue or any other day to day symptoms.
    I have experienced a few more infections than I would expect- infected skin biopsy site, infected cat scratch, GI tract infection with H. Pylori. These all responded to one course of antibiotics.
    The biggest issue I have with Gilenya is my exercise tolerance. The Gilenya has caused my max heart rate to drop about 8 points and has dropped my VO2 max by 20-30%. This has significantly decreased my exercise tolerence and makes me more fatigued when exercising. I am still riding- just slower. We bought a tandem bike so I can keep up on rides.
    Right now, I am willing to trade this side effect for a decreased chance of long term disability and cogitive dysfunction.



    • #17
      Good luck to you as you travel this road! My spouse was diagnosed with MS a bit over a year ago (first exacerbation, only symptom preceding it was a few months of fatigue) and has been on Rebif since. It's our preference--after seeing what happened with Vioxx, Rezulin and other drugs for other conditions--to give the oral drugs a little longer time on the market before considering a shift.

      The shots are not that big a deal, really, once you get used to it. The autoinjector makes it a lot easier. There were issues with injection site reactions in one area; the solution is to not use that area as an injection site anymore. By far the biggest side effect has been fatigue; because fatigue was a symptom that preceded the diagnosis and the use of the drug, it's hard to know how much of this is related to the disease, and how much can be attributed to the drug. We're managing it with a combo of regular exercise, coffee, low-cost prescription meds, and an earlier bedtime.

      We're confident in the clinical data supporting the benefits of injectible DMDs. We find the side effects manageable--and we both get a great deal of psychic benefit from knowing that we are doing all we can to stop this thing from progressing any faster than it needs to. Everyone needs to make his or her own decision, but we viewed signing on for the DMDs as the obvious choice.


      • #18

        I have been on copaxone, betasteron and now tysabri. On my last MRI I had more lesions and more physical symptoms. From my understanding only 5% of patients on Tysabri continue to get more lesions. So my dilema was to continue or not. My Neuro suggested I continue, he thinks it is slowing the progression. After considering stopping I decided to continue because if I stopped and with my progression how would I know if I would have progressed slower while on the drug. Since you can't go back I decided to stay on Tysabri. Hope this makes sense.


        • #19
          To medicate or not to medicate

          Here is my history with the DMD. I went on Copaxone shortly after my diagnosis in the spring of 2008. After several months of being on Copaxone I dropped out. Why, because I did not think I was getting any benefit and just wasting the Insurance company's money. One year later I was not preforming at work very well (got very forgetful) the pressure was mounting then my disease started to spiral out of control downward (I am PP-MS). I loss further control of my left leg and my balance became worse, I started back on the Copaxone, a few months later my work and I parted as I went on Long Term Medical disability. About 15 months later after I made several major changes to my life style, dropped 50 pounds, still on Copaxone and pretty much stabe. Was it the DMD or the lack of stress? I am very certain that both played a roll but now that I am running out of my COBRA health insurance and the possibility of being off a DMD is something I would rather not have to worry about as I am confident that it has play a roll in my MS slowing down.

          Last edited by Outdoorslover; 12-23-2011, 04:27 PM.


          • #20
            Are you on a DMD? What's It Like?

            I really want to thank everyone who's commented so far.

            The insights you've shared are really helpful as I try to figure my path out -- and I feel certain other visitors to the site are getting value out of your comments, too.

            Just hearing what other people are doing regarding DMDs (whatever it may -- or may not -- be) helps a lot...

            So... for anyone just looking at this thread for the first time, I'll repose the question:

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

            (My story is at the top of the thread. In short, DXd 18 mos. ago, but elected to not go on a DMD yet -- technically, not a wise decision, I know, but that's where I am at the moment.)

            Over to you....
            Last edited by TJ1; 12-23-2011, 04:55 PM. Reason: typo


            • #21
              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, 01:22 PM.


              • #22
                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.
                RRMS dx 3/3/11; started Copaxone 12/1/11
                Specializing in denial since 1996. Accept the diagnosis, not the expectations...


                • #23
                  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, 06:36 PM.


                  • #24
                    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.


                    • #25
                      I have been on most 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 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!


                      • #26
                        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!


                        • #27
                          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!


                          • #28
                            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, 12:01 PM.


                            • #29
                              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.


                              • #30
                                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.