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  • 12trikaj
    My question is, is that if you quit doing your treatment do your symptoms come back with a vegeance?  I think that happened to me and I was wondering if I am right, because I ended up going back on it because of how bad everything got very quickly.  Was it just a coinsidence?

    Sorry about the spelling errors :(
  • Bkboo
    I stopped treatment almost 20yrs ago. I was on Beta Seron and felt awful and always sick so after a year I stopped and just went on with my life. I was fine, had yearly check ups with Doc etc. Got back to teaching martial arts and dance. Was in the best shape. Then my left hand went numb, pins and needles and about a week after I couldnt think straight. I am on the Tysabri now, ive had 3 infusions. Before this happened I was under an incredible amount of stress, stopped working out, started eating bad, etc...so who knows why it came back with a vengeance. Its hard trying to  figure out this disease. Take care of you and do what is best for you.
  • nursep
    Just a follow up... I quit treatment in February. After 8 months of feeling awful I discovered it was the meds making me feel so awful and I got me back and my life back! I realize I may pay for that decision later but I did not want to waste the good time I have now. I started feeling better about a week or two after I quit. It was a nightmare for me, but I know that is just me. I have 2 friends who do beautifully on their current meds.
  • nursep
    We are all different and this disease itself is unique and unpredictable, so I would have to say anything is possible and nothing is impossible. :( Not much help eh?) Sorry. Hope you are feeling better though!
  • Avatar
    It might depend on your type of MS.  I got a major episode back in 1982, got 100% better, had no diagnosis and no problems for 16 years and was on no meds.  Then i got another problem, got a diagnosis 16 years later and didn't go on a therapy and within a year my disease had progressed so much that I needed to go on disability and leave work.  So it can depend on where you are in your disease. 

    i then went to a lecture about how MS can progress much worse without (interferon in this case) and there were MRIs to prove it.  I learned that disease modifying drugs can really slow down the disease and saw the proof in the pictures of MRIs of people with and without DMT.  . 

    You can test yourself, but it is a gamble.  Good luck with whatever you decide.  It is your body and I understand not wanting to be on a treatment because of all the side effects. 
  • StayFit
    I stopped treatment about two years ago and have had no adverse affects. Best of luck to you!
  • 12trikaj
    Just a follow up... I quit treatment in February. After 8 months of feeling awful I discovered it was the meds making me feel so awful and I got me back and my life back! I realize I may pay for that decision later but I did not want to waste the good time I have now. I started feeling better about a week or two after I quit. It was a nightmare for me, but I know that is just me. I have 2 friends who do beautifully on their current meds.
    That is exactly why I quit and within 2 weeks I started feeling so much better..I am on the betaseron and no matter what time of day or night, r where I give the hot does not make a difference.  Like I said though I felt great, by great Imean I wasn't so tired and out of energy all the time, but then like I said it seemed like the symptoms hit me like a ton of bricks. 

    Back pain went totally out of control one week and then the next week I had lower leg edema ( my right foot actually doubled in size).

    So I went back on the shot and within about 3 shots or so I'm back to the sameold thing, being tired all the time, not to mention nausiated and that is new.

    Sorry to complain, I just know that you all know what I am going through, and I wish that WE could all get our lives back :)
  • nursep
    I really hope you start feeling better. :( This is all so hard isn't it? I know my reprieve is temporary, and from what "they" say without DMD's it will be more frequent that I relapse but boy! That Rebif about killed me! I am hoping for BG 12 or Lemtrada to have better results and less side effects or something really great to be discovered! Anyway, take care of yourself. I am hoping things improve for you, I really am! Let me know how things go. :)
  • clarinetmom
    This is a great conversation. My dr wants me to change treatments, and I would dearly love to ditch my beta! Just scared of the consequences! I've been hearing how vitally important it is to stay on DMDs, even with the side effects, so I'm taking the cowardly road and still sticking myself.
  • my_shana
    The DMT's - nobody knows what years of taking them will do. They do slow the progression allegedly.

    I was dx in '92. Betaseron came out in '93 (you entered a lottery for the med). I wasn't able to stay on that because a biopsy showed lupus like lesions (I also have lupus). When avonex came out my dr put me on avonex - and then after 7yrs of taking the avonex - they changed the make-up of the drug (you didn't have to mix it wth a dilutin) - you simply took the cap off the needle and injected. That change put me in the hospital for 2 weeks. The first week I have no memory of, but I did have seizures and to this day I take anti-seizure meds.

     I have now been on copaxone since '06. Do I have exacerbations, have I ever had to be in the hospital for IV solumedrol, OF COURSE. The DMT's slow the progression of MS. They don't  end the MS.

    For me the worst part is the pain. Pain, pain, pain. But I survive. I'm 66, retired and my kids are adults.

    So who knows what the future holds with MS.

    But hang in - we really have no choice! 
  • 12trikaj
    The DMT's - nobody knows what years of taking them will do. They do slow the progression allegedly.

    I was dx in '92. Betaseron came out in '93 (you entered a lottery for the med). I wasn't able to stay on that because a biopsy showed lupus like lesions (I also have lupus). When avonex came out my dr put me on avonex - and then after 7yrs of taking the avonex - they changed the make-up of the drug (you didn't have to mix it wth a dilutin) - you simply took the cap off the needle and injected. That change put me in the hospital for 2 weeks. The first week I have no memory of, but I did have seizures and to this day I take anti-seizure meds.

     I have now been on copaxone since '06. Do I have exacerbations, have I ever had to be in the hospital for IV solumedrol, OF COURSE. The DMT's slow the progression of MS. They don't  end the MS.

    For me the worst part is the pain. Pain, pain, pain. But I survive. I'm 66, retired and my kids are adults.

    So who knows what the future holds with MS.

    But hang in - we really have no choice! 
    That is also my Biggest complaint, pain-pain-and more pain....I am so sorry you hurt so bad, these should be the best years of your life :(
  • 12trikaj
    It might depend on your type of MS.  I got a major episode back in 1982, got 100% better, had no diagnosis and no problems for 16 years and was on no meds.  Then i got another problem, got a diagnosis 16 years later and didn't go on a therapy and within a year my disease had progressed so much that I needed to go on disability and leave work.  So it can depend on where you are in your disease. 

    i then went to a lecture about how MS can progress much worse without (interferon in this case) and there were MRIs to prove it.  I learned that disease modifying drugs can really slow down the disease and saw the proof in the pictures of MRIs of people with and without DMT.  . 

    You can test yourself, but it is a gamble.  Good luck with whatever you decide.  It is your body and I understand not wanting to be on a treatment because of all the side effects. 
    Thanks I needed that wake-up call I think??  It is so hard :(
  • Bkboo
    AVID Advocate...i keep thinking if i only knew 20yrs ago and that there had to be something else I could have gone on (besides Betaseron) but with that said I also have to remind myself that I had 20 great years without MS attacks.  I can drive myself crazy about the what ifs.... this disease iis so unpredictable.
  • 12trikaj
    AVID Advocate...i keep thinking if i only knew 20yrs ago and that there had to be something else I could have gone on (besides Betaseron) but with that said I also have to remind myself that I had 20 great years without MS attacks.  I can drive myself crazy about the what ifs.... this disease iis so unpredictable.
    I am so sorry for everything you went through :(  How long were you off of treatment, or did I not understand you correctly?
  • Bkboo
    I stopped treatment in early 1990s I was on Beta Seron, self injections. I had awful flu symptoms, ugh it was horrible. I was told it would go away so stayed on it for a year, the flu symptoms did not go away, so finally i went off of it. Then I began feeling good, got back into working out, matrial arts and dance. Then this last summer my lefy hand went numb and a week or so later I was hit with horrible cognitive issues....now I am trying tysabri for one year. I will see then what I will do. This disease is so unpredictable. I am going to do what I can....and take it one day at a time kind of thing. My doctor told me that if I had done something about it this would not have happened. But I think, shesh I also had a good 20 yrs!. So who knows......The tysabri doesnt have symtoms like the beta seron. All i have is more depression...but not sure whats making it worse. Its such a personal journey. your doing the right thing by reaching out , getting information etc so you can make your decision.
  • Bkboo
    I also wanted to say that when it came back ...well I still am so so confused and ask why, and what Ifs are always on my mind. I have to do things to relax my body because I am so tense and I had tons of questions... it has thrown  me for a loop...did I understand correctly that your ms came back ?
  • 12trikaj
    I also wanted to say that when it came back ...well I still am so so confused and ask why, and what Ifs are always on my mind. I have to do things to relax my body because I am so tense and I had tons of questions... it has thrown  me for a loop...did I understand correctly that your ms came back ?
    Yeah it hit me pretty hard after I stopped the Betaseron for about 2 weeks, either that or a very good/horrible coinsidense (Spelling) ? What do you think?  First my back pain got way way worse and had to be hospitalized for that for 2 days, and then when I got home, about 3 or 4 days later, my right foot swelled up to double it's size. So was it the stopping of the Beaseron or the Heat?? Who really knows?? As for your doctor telling you that it would not have happened, He or She has no Idea if that is true or not and I know you already know that :)
  • Bkboo
    I slipped two disc in my back which also happened when I first was diagnosed. With this latest attack, my back was also giving me problems...i wonder if the MS has anything to do with that? and who knows why MS attacks....ugh trying to figure out this disease is confusing so I have to let it go and just take care of me.
  • StayFit

    I have been off treatment for four years without any symptoms. I've been on Avonex and Rebif in the past. I'm not sure but it could just be a coinsidence.

  • nursep
    same here mam! but more so. When on the interferons I relapsed and had flares very frequently and felt awful. On no meds, had no relapse for many months and MRI improved significantly. Was talked into Tecfidera last summer by neuro and within 6 weeks had a big relapse stayed on it anyway and had another relapse in November. Augh! That was enough for me! LOL Off meds no big relapses and I feel pretty darned good. On meds I deal with constant fatigue, illness and relapses. Not to mention, the more unpleasant side effects. I am due for an MRI this summer so will see how things are doing. If there is no significant increase in lesions or better yet if there is again improvement then I will continue as I am.