Announcement

Collapse
No announcement yet.

So are we all continuing with our Interferon Shots?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    I had questioned the 20 to 30 deal, but realized it probably includes the ones in clinical trials.

    Sara

    Comment


      #17
      Guys,

      I'm not being a downer or running with only one study. This is not the first study to come to this conclusion and if you read any of the studies, positive and negative, there are problems with all of them. My question is simply what do you think, what do I think and what do we do?

      I just thought there would be more debate and I must say I am somewhat sad that they were not able to find a beneficial effect. I would have been much happier if they had been able to show an effect. At the same time, having taken part in studies, selection bias based on Patient-Neurologist is hard to eliminate.

      Here's a good write-up of the study if anyone's interested.
      http://www.nytimes.com/2012/07/18/he...inds.html?_r=1

      Comment


        #18
        As the JAMA editorial linked below notes, “Lacking evidence of treatment effect is not proof of lacking effect. Furthermore, although methodologically sound, this study cannot avoid the inherent challenges of data analysis and interpretation in nonrandomized observational studies.”

        The link appears to be only part of the editorial, the rest of which is available only by subscription.
        http://jama.jamanetwork.com/article....icleid=1217217

        There were studies from intelligent people that suggested CCSVI might be the answer for us. Of course, some people took those studies as gospel, in many cases out of desperation as their disease progressed. But over time, we’ve learned that it’s not the panacea, at least not for most of us. Now people are taking this interferon study as gospel, but in this case it’s borne not of deteriorating health, but instead of hatred for “big pharma” and appreciation of conspiracy theories. That world political view has no place here.

        Comment


          #19
          At this point in time, yes I am continuing the Avonex. I am too afraid of having an exacerbation like I did last summer when I went off Beta to switch to A. I am still having problems from that one. With having wonderfully crappy insurance now (which won't cover MS related for 5 more months now) the thought of a relapse is terrifying.

          I see my Neuro in Sept also, I'll see what she has to say.

          Comment


            #20
            Originally posted by TLC_31 View Post
            ...Now people are taking this interferon study as gospel, but in this case it’s borne not of deteriorating health, but instead of hatred for “big pharma” and appreciation of conspiracy theories. That world political view has no place here.
            I understand what you're saying - I question people who dismiss things out of hand, so removing the conspiracies, this was a good study in a good journal with good data and not the first, so the issue does deserve to be discussed. Not thrown around in either direction.

            But since you brought it up... Although this is science, it's just like politics. It will take something nearly earth-shattering to change a person's view. Those who were against Interferon are still against and those who are for it are still so.

            Comment


              #21
              Originally posted by BigA View Post
              But since you brought it up... Although this is science, it's just like politics. It will take something nearly earth-shattering to change a person's view. Those who were against Interferon are still against and those who are for it are still so.
              Definitely makes for an interesting thread though.
              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

              Comment


                #22
                With only a 50% efficacy rate anyway, this study doesn't change my mind about whether or not the injections work. To me, those stats are one and the same.

                Personally, I view MS as such a crazy, individualized disease that there is really no way to guarantee that anything is a benefit of a med or not. How do we know that we wouldn't have relapsed even without the meds? How many people take the meds and relapse? But is that a failure of the med or just the fact that they would've relpased either way?

                For me, I spent a 15 months on no meds, and I didn't relapse and my MRI's were unchanged. I am back on a med now mainly for peace of mind that I am trying to do something. But deep down, I just feel that my disease will progress--OR NOT--despite/in spite of meds! lol

                Literally, a shot in the dark!
                Melody
                Diagnosed 1/28/10

                Comment


                  #23
                  Originally posted by roo613 View Post
                  With only a 50% efficacy rate anyway, this study doesn't change my mind about whether or not the injections work. To me, those stats are one and the same.

                  Personally, I view MS as such a crazy, individualized disease that there is really no way to guarantee that anything is a benefit of a med or not. How do we know that we wouldn't have relapsed even without the meds? How many people take the meds and relapse? But is that a failure of the med or just the fact that they would've relpased either way?

                  For me, I spent a 15 months on no meds, and I didn't relapse and my MRI's were unchanged. I am back on a med now mainly for peace of mind that I am trying to do something. But deep down, I just feel that my disease will progress--OR NOT--despite/in spite of meds! lol

                  Literally, a shot in the dark!
                  Hey Melody,

                  I like you're "shot in the dark" analogy. Sure fits.

                  But your point is the point I've often seen Snoopy make. She has had few relapses, had MS for years, never been on a DMD...and yet if she had been on one, her lack of relapses would have been attributed to the DMD when in fact it was just the natural course of her MS.

                  Bottom line, we do what we think is best for us at any give stage of the disease, and have the freedom to start/stop/restart/change...etc. when we decide. At least with RRMS there's a choice...those with PPMS aren't as fortunate.

                  P.S. Snoopy...correct me if I'm wrong on your story, but I was pretty sure you were the one who often posted that info on threads like these.

                  Comment


                    #24
                    stopped

                    I stopped, but before the study came out. I stopped on June 4th, but because I was having rapid progression on Beta for some reason. I am waiting on my approval for Tysabri but honestly not sure if I want to go on another DMD. The only difference I have noticed so far about being on one and off of one so far is I have more severe migraines without and more problems with sleep. I have only tried copaxone and beta though. I feel the same though as I did on both of those and still have the same difficulties
                    RRMS 10/2011 Sick and tired of being sick and tired!

                    Comment


                      #25
                      Heck BigA,
                      Questioning the ultimate value of taking DMVs has long been a spirited debate among MSers, long before this article came out. My neurologist didn't really have much to say when I brought it up, other than you can't accurately compare healthcare systems (i.e. ours is better). I guess like apples and oranges?? Anyway, I saw my Mom really do awful with her M.S. and no DMVs and I'm doing a lot better by comparison and that's all I know.
                      Tawanda
                      ___________________________________________
                      Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                      Comment


                        #26
                        Best thing I ever did was get off meds. Never felt better. Never a regret. If you feel like crap when taking something meant to make you feel better well ...its a no brainer. Listen to your body.
                        There are no problems, only solutions. - John Lennon

                        Comment


                          #27
                          Originally posted by Apple- View Post
                          Best thing I ever did was get off meds. Never felt better. Never a regret. If you feel like crap when taking something meant to make you feel better well ...its a no brainer. Listen to your body.
                          I've yet to read anything anywhere that says the DMDs are supposed to make you feel better.
                          That isn't what they do and they were never designed for that. The DMDs target your immune system and try to modify it so it stops attacking your nervous system.
                          I think its fair to expect your immune system to kick back. I also think its fair to feel crappy as long as the DMD is doing what its supposed to.

                          I guess its why I don't like those "Ask your Doctor about.." ads. They seem to build a false impression of what medicines are supposed to do. I'd rather be taking a med that's doing its job instead of just making me feel good about the disease.

                          Comment


                            #28
                            Originally posted by Bob698 View Post
                            I've yet to read anything anywhere that says the DMDs are supposed to make you feel better.
                            That isn't what they do and they were never designed for that. The DMDs target your immune system and try to modify it so it stops attacking your nervous system.
                            I think its fair to expect your immune system to kick back. I also think its fair to feel crappy as long as the DMD is doing what its supposed to.

                            I guess its why I don't like those "Ask your Doctor about.." ads. They seem to build a false impression of what medicines are supposed to do. I'd rather be taking a med that's doing its job instead of just making me feel good about the disease.
                            I'm with Bob, never read anywhere that they improve symptoms but have read plenty that they can make you feel worse (most of us have experienced that if we were on an interferon, anyway.)

                            They're supposed to reduce exacerbations and/or lesion formation. But I reread this article today... I posted the link below, someone posted it the other day. It shows a time lapse version of a patient who had MRIs once a month for a year. His lesions come and go, yet he did not have an exacerbation during that entire year.

                            Basically the article summed up determining treatment options based on an MRI is a tricky thing, because MRIs are just a snapshot in time, and may not show damage, and/or healing taking place on an onging basis.



                            Here's the link...very interesting article if you have the time to read it. But no need to read the whole article, just watch the time lapse MRI of the patients lesions appearing and disappearing throughout the year and with seeing all that "action" realize the patient never "felt" it, i.e. in the form of an exacerbation.

                            http://www.msdiscovery.org/news/news...more-meets-eye

                            Comment


                              #29
                              Originally posted by Tawanda View Post
                              Heck BigA,
                              Questioning the ultimate value of taking DMVs has long been a spirited debate among MSers, long before this article came out. My neurologist didn't really have much to say when I brought it up, other than you can't accurately compare healthcare systems (i.e. ours is better). I guess like apples and oranges?? Anyway, I saw my Mom really do awful with her M.S. and no DMVs and I'm doing a lot better by comparison and that's all I know.
                              Sorry...I should have said "DMDs" . My DD was grabbing at my laptop. Again, don't have a definate take on this, but Avonex SEEMS beneficial in my case, so whether or not it is just in my head, I really don't care and will continue my DMD until further information says it's definately a stupid thing for me to still be doing.
                              Tawanda
                              ___________________________________________
                              Diagnosed with Multiple Sclerosis 2004; First sign of trouble: 1994

                              Comment


                                #30
                                Originally posted by Tawanda View Post
                                Sorry...I should have said "DMDs" .
                                Its OK, I also have strong opinions about the DMV.


                                Comment

                                Working...
                                X