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So are we all continuing with our Interferon Shots?

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    So are we all continuing with our Interferon Shots?

    I'm continuing to take my shots, but I must admit to being very conflicted about doing so after the study published in JAMA. They seem to have done a thorough job, but there (as with all things MS) is still doubt enough for doctors to continue to prescribe it and patients like me to continue to take it.

    I think the question "Have I been prescribing useless medication to my patients" is almost as difficult for doctors as "Have I been taking useless medication" is for patients. I will define useless as not delaying progression - lowering relapse rates and lesions is something, but not exactly what we're expecting.

    So are we all ignoring the study and continuing without mentioning that elephant in the room, are we hoping that a drug with so much research behind it can't possibly not work, or is there enough room for doubt to bridge us to the next exciting/disappointing discovery?

    #2
    I'd wait until the next study comes out and they change their mind again.

    I know that in my case interferon is what stopped (or at least REALLY slowed) my progression.
    Some of this "they don't really work" stuff seems to have an agenda behind it, I think this notion started sometime last year in the UK where they have a better health care system but some folks don't want to pay for it.

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      #3
      I'm continuing mine. It's one study among many & it was a very specific study that didn't cover everything, like quality of life. The same researchers that did the study have stated that people should continue to use the medication & they also found they reduce flares & lesions.

      I'm not going to abandon the one hope I have based on one study.
      Diagnosed: May 2012
      Medications: Avonex - stopped 12/14
      Plegridy - starting 12/14

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        #4
        Originally posted by Westgrl View Post
        I'm not going to abandon the one hope I have based on one study.
        Well put.
        He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
        Anonymous

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          #5
          Originally posted by Bob698 View Post
          I'd wait until the next study comes out and they change their mind again.

          I know that in my case interferon is what stopped (or at least REALLY slowed) my progression.
          Some of this "they don't really work" stuff seems to have an agenda behind it, I think this notion started sometime last year in the UK where they have a better health care system but some folks don't want to pay for it.
          Hi Bob698 ~~~By "some folks don't want to pay for it" do you mean mean the government ?

          Comment


            #6
            You know, the doctors get vacations and other perks from the drug companies. I've been on some of the perk trips disguised as CME trips and other stuff. Once, I went to Vail Colorado and ,surprise, there was lift tix and ski rentals included without fees for a week in the winter.
            Another time, I went to Bermuda for 4 days. The 'greens' fees were 'comped'. We stayed at the Fairmount Southampton. Very nice.
            So, if the drugs are relatively harmless, doc prescribes them, your insurance co. pays for them, you take them. And who's the wiser ?
            If Jama says they don't see the benefit, they aren't in the loop. Yes there is other research. A patient has to do what is right for their mind and body. Just don't be so simple minded as to call this journal's words...untrue.

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              #7
              BigA, I've just gone to get a new script for avonex after being offsite for about 4 years.
              I asked my neuro about the study and he says that it was not done for long enough for a statement like that to be put out there. He said that if it was a 20 or 30 year study then it would be different.
              I'm confidant that it does help but i'm also not willing to take the risk from one study and not take it.

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                #8
                I just wondered who 'they' studied. I personally am better since starting Betaseron in '94...before I had many days my legs were so numb I couldn't drive. I 'walked' out of my shoes, dragging them behind me and I couldn't feel it.

                I would love to stop taking injections, I still get red marks/blotches and have hardened areas.

                It's risk vs risk I'll keep the shots
                Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

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                  #9
                  The NHS in Britain (remember all those happy nurses in the Olympic Opening Ceremony) is not all it's cracked up to be.
                  The same goes for the Australian system.

                  There's no choice of doctor, and the wait for 'elective' surgery, like hip replacements etc is long,so anyone who can afford it pays extra and goes private.
                  And you get to pay a "gap" as well, which means you pay at least twice, plus you get to part with the cash up front.

                  As for Beta being any better or worse than the others, the Brits said last year you get on average eight weeks more of quality of life.

                  I often think I'd get more than that if the government who pays for most of my Copaxone just gave me the $13,000 a year to play with.

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                    #10
                    I know, but this wasn't just 'another study' - it was done with extreme care with excellent records and they did all they could to address issues. Of course nothing is perfect, but you'd think that it would show *something*. And Chloe - it was a 20 year study.

                    I thought there would be more debate, rather than to dismiss such a large, well conducted study out of hand, as my Neurologist did.

                    I told my Neurologist that now interferons were now as unproven as diet. I do both for insurance

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                      #11
                      As a nurse I must say that I don't think our health system in Australia is that bad at all.

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                        #12
                        I quit...at least till I see my neurologist in September.

                        I've been on it for 8 years. Last couple of years have been a downhill slide, and since Christmas it's accelerated, so I'm not too afraid to take a break.

                        Plus for years and years, no side effects, in fact early on, I could have sworn I felt better after going on Beta...which I know is not the goal of a DMD, but it was how I felt. But in the last year, I've had side effects after each shot...aches, pains, fevers, headache, even with premed.

                        What have I noticed since I quit...same thing I noticed when I had to go off it before for a couple months due to a surgeon's insistence. I lost 10 lbs and my hair got thicker

                        I'm not dealing with the morning after symptoms, so that's a plus. I may have crossed the line to SPMS, who knows.

                        So I'll discuss it with the neuro in September...if I had been stable and not progressing, I would have had second thoughts about going off, but it was a pretty easy decision for me based on the current state of my MS, not entirely based on the study (but as someone mentioned, it's not the first study to throw aspersions on the long term benefit of the DMDs.)

                        Holding out for BG12, I guess. Still a little miffed that after all these years, we have treatments that work for some and not for others, that cost mega bucks, that guarantee maybe a 50% reduction in exacerbations.

                        The disease is basically left up to us to manage. They give you handfuls of symptomatic meds, and maybe they work, maybe they don't. Some of the meds that work for some, they have to fight to get Rxed because they're off label and their insurance won't cover it. When the meds don't work, the docs say, "they usually work", then they pull out their Rx and write another script. Steroids are the way to manage flares, but that's a whole other bag of worms with the side effects they bring...but to say this disease is manageable in any way, shape, or form is not true. It's a "cr@p" shoot to say the least.

                        I look at diseases like HIV and cancer and the advances made have been remarkable...they are "managed diseases." I've had friends and family with breast cancer, and even brain cancer, and the disease is managed, there's a plan (whether they work for everyone that's another story.) I know we're an orphan disease, 400,000 versus millions with HIV and cancer. But after years they don't even know what causes MS or if we all have the same disease...this does not make me happy...okay, rant ended.

                        Comment


                          #13
                          Originally posted by JerryD View Post
                          If Jama says they don't see the benefit, they aren't in the loop. Yes there is other research. A patient has to do what is right for their mind and body. Just don't be so simple minded as to call this journal's words...untrue.
                          Simple minded? because one study which was published in a reputable journal isn't immediately accepted as gospel? Really?

                          The conspiracy theories wear me out. I have also been wined and dined by pharm companies and while I do give extra attention to researching the claims made in the presentation if it sounds like it might benefit my patients I resent the implication that I would ever prescribe something simply based on a ski trip. In most cases the reps don't even know whether I later prescribed their med or not.
                          He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                          Anonymous

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                            #14
                            20 year study or not

                            Plenty of people say that they believe that the shots have helped them. It can't hurt to keep trying them. You can sit around with a bad attitude or you can try everything available to you. It's up to you really.

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                              #15
                              BigA, my neuro said to me that for that study to have been accurate it should have been done over 20-30 years and interferons were not around and used for ms then. I was under the impression that it was only a 5- 10 year study.
                              He says that ms is not a 5 or 10 year disease and he would be more impressed with a study that was done over a few decades.

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