Disease Modifying Therapies in MS, do you take them?

Disease Modifying Therapies in MS, do you take them?

I received a comment yesterday, on an older blog, about my Ocrevus infusion. What I found interesting is she’s had multiple sclerosis for 36 years and she’s first going on a disease modifying therapy. First of all I have to say, 36 years within any DMT, that is amazing!!! I know other people like that or that have stopped taking any of the disease modifying therapy drugs for a variety of reasons. I never had that option.

My multiple sclerosis was bad right out of the gate. My entire left side went numb, was atrophied. To this day I still don’t have normal feeling on the left side of my face. It was so severe and it was so quick. It started on Friday and by the following Friday I was sitting in a wheelchair unable to walk. Starting a drug therapy wasn’t an option only which one was. Back then there was only Avonex and Betaseron. I started with Avonex but couldn’t handle the injections and how sick I felt for a couple of days after I dosed. I switched to Betaseron, but I remember many nights waking up with severe chills, showering in the hottest water at 2am and it might have been summer. It didn’t matter, Betaseron also made me sick and the injection sites were always sore and red. I was basically on Betaseron for 12 years. I had a short stint of trying Rebif and shorter still Copaxone. When Gilenya hit the market I was done with shots.

Even on the DMT I had on average 2 relapses a year. In 2014 when I was switching from Gilenya to Tysabri I was off all meds for a total of 2-3 months. That was all it took and I had my last major relapse that truly disabled me. I never had a choice with the drugs. Even now, I’m partially secondary but I’m still probably partially relapsing, I can’t risk not taking anything. It’s just unfortunate that I continue to slowly get worse. Without the DMT, I’d be completely worse. I must say I’m grateful to my doctor who never gave the option 20 years ago other would you prefer to go on  Avonex or Betaseron. I’m grateful these drugs were around to help me. For all of the readers that didn’t or don’t need them I think that’s amazing too. I love hearing stories like that and I’m grateful for yesterday’s comment.

11 thoughts on “Disease Modifying Therapies in MS, do you take them?

  1. Dear Youtwohearts !

    I truly hope I didn’t offend you by my comments. I have been an MS Support Counselor for quite a few years, and, know the terrible toll it can take ! I realize I have been so fortunate with the course my MS has chosen to take . It has only been in the past several years that things seemed to be harder- thus , my opting for a DMT . I will wait and see .
    Please know that my thoughts and best wishes are with you !

    Sincerely,
    Polly

    1. Absolutely NOT. You were an inspiration that’s why I wrote my post today. I think that the fact you’ve had MS for 36 years is an inspiration. Please please please don’t think you offended me in any way. It was totally the opposite. I’m sorry my blog didn’t come across that way.

      1. Goodness- we will go back and forth apologizing ! I so admire people that have dealt with a much tougher course of MS, than I have . I often wonder if I would have the strength to persevere if I were in their shoes. People that have are my idols !!
        Don’t worry, I just wanted to make sure I hadn’t been a downer-so to speak. I have always hated taking any kind of drugs-from aspirin to cold medicine, so, I was really on the fence about starting Ocrevus. My neurologist basically let me make the decision, but, I may have all ready said , that when I asked him what he would recommend if I were his Mom- he said try it ! So, I have begun a new journey with MS ! It will be interesting to see what the new study about people over 50 stopping DMT’s if-1. Their MRI’s haven’t changed in 5 years ( mine haven’t) and 2. They haven’t had a major relapse in 5 years ( I haven’t). I’d say I have just had a slow change in balance,and walking. I started Ampyra, and, glad to say my walking speed keeps getting better whenever it is measured. Can’t say my balance has improved !! 🙂 Take Care !
        Best !!
        Polly

        1. I was on Ampyra but my foot drop was bad so I walked faster but tripped more so it got discontinued. I hope the next infusion goes smoothly. You won’t even know you took something. That’s the good thing about Ocrevus.

  2. Even with all of the side effects, DMT is better than not taking anything. But it is interesting that I wasn’t diagnosed until I was 60 but symptoms started in my mid 30s. I can only feel blessed that my symptoms were mild enough that it wasn’t caught early. But I also think that if I would’ve started DMT earlier, perhaps my symptoms wouldn’t be so bad now. It’s a toss up!

  3. I am so glad that the DMT is helping you so much. It really amazes me that some people can be off medication and not have any relapse, I am happy for them but it shocks me. I was off of the Gilenya for 1 and a half months because I wanted to switch my medicine to Tecfidera. Now i am having the worst flare up I have had in 16 years. I am back on Gilenya which did work for me for years. I made a bad decision to switch my DMT. I am hoping things will get back to “normal” for me soon!

    I really hope that you start feeling a lot better soon. I know how frustrating it is to lose feeling. I think you do an incredible job with your posts and telling us about what you go through. I hope you have a great Friday and feel much better soon. Keep up the great work and start the strong person you are!!! Take Care!

    Much Love, Alyssa

    1. That’s exactly what happened to me I was off Gilenya switching to Tysabri and had my worst ms attack. It’s been 3 years now and it’s my secondary progressing that makes things worse. I switched because I was bleeding through Gilenya but what was bleeding was secondary ms. Anyway I’m doing fine, I’m use to life this way.
      I hope you are feeling better. Have a wonderful weekend.

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