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Is this a big deal?

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  • Is this a big deal?

    I started being more active than I ever had been before my diagnosis in 2005. Last year I rode the MS 150 (156 miles of the 164) and I've been moving towards a more plant-based diet staying away from diary and red meat.

    My optic neuritis is back, so is my vertigo. I get that I have a progressive disease even though I have relapse-remitting, I'll never remit back to 100%. I've agreed to steroids so that I can work and drive and, well, train for the 2011 MS 150.

    I'm down and a little frustrated. Have I done this to myself? I feel like I've failed somehow. I'm looking at 5 days of having an IV in my arm and I'm disappointed.

    My question is, for everyone who is active, are steriods common for you? Should I just get over it and on with it? I mean is this just not a big deal, all part of the disease?

    Thanks in advance for the replies, any story would be helpful.

    Have a great day


  • #2
    I don't know how "normal" it is... but I've had steroids 3 times in 2010. 2 Times for ON - I am an accountant, so I needed to see those decimal points

    I have to say both times I got relief from my symptoms progressively more and more after the 2nd day of the treatment. My first course of steroids, I could barely walk as I was numb from the knees down, and the first day of the steroids I was feeling much more balanced.

    So I say, if your poor vision is interfering with your life, go for it. I hope you'll see (no pun intended!) quick results as well.

    Thats not to say that there are no downsides. I had a gross metallic taste in my mouth, getting IV infusions isn't fun, I had a huge burst of energy until about 3 days afterward, and then sort of crashed. I felt better after about a week I'd say. Also, there is the taper dose of steroids, they caused me more trouble than the infusions. One other thing, you might want to eat everything you encounter, if whatever that is is super salty you'll blow up like a water balloon with water.

    I hope you're feeling better soon. Please don't be disappointed with yourself, nothing you could have done would have prevented it.


    • #3
      Hey Jenn,

      Steroids have not been common for me but it had more to do with a job that had me out of the country with no access to that kind of care than not wanting to get involved with steroids. Any relapse is a big deal. I sought steroid treatment last fall when I had a little relapse from an Ampyra RX. I did that based on something you had said about your experience with them being pretty good BTW. Things improved as soon as I stopped taking the Ampyra and before I could get to the neuro though, so it never happened. That is until a spider bite just recently. I couldn’t believe how fast those things worked to get that bite under control.

      When I first began seriously cycling I had a couple of relapses that I thought might have had something to do with hitting the trail too hard. I’ve learned since that going anaerobic every time you exercise is a very bad training plan for anyone, so who knows what it could do to an MSer. I’ve also found that I need some down time more frequently than the people I bike with. Could be age or MS or both but it’s probably more the MS. All of the literature says that exercise is highly beneficial for people with MS but I think you really do have to do it right. If you think there is any chance of the exercise having something to do with your relapse, by all means, lighten up or stop altogether for a while.

      I really doubt you had anything to do with causing the relapse. Maybe there’s a chance you and your neuro can work on something to try to help prevent more of them though.

      What does your neuro have to say about it?

      Hope you’re back in the saddle soon Jenn, I miss your affable posts,
      Last edited by AMFADVENTURES; 01-12-2011, 08:40 PM.


      • #4
        My neuro, well, he's taking a "she knows better about her care" approach. Which is weird and slightly irritating. Before the ride he really didn't have much to say, he didn't encourage me or discourage me. AFTER the ride he said "well, MS patients do better when they exercise" Really? Would have been nice to know before, a little pep talk if you will. But I did know better, in that case, thanks to this web site and all the posts with links to studies that shows it is beneficial. It just would have been nice if he was supportive. Made me want to look for someone new but I've heard a lot of horror stories about neuros so I'm going to stick with mine.

        Marinadca, I know exactly what metallic taste you are talking about. I had good luck with butterscotch candies (like Wearter's ?) I really only had one other side effect and that was to eat as many cookies as I could lay my hands on. It could have been a chocolate covered shoe lace cookie and I would have eaten it. Will have to watch for that again. Best part about them - the very first night - I could feel the texture of the carpet under my feet. Which hadn't happen in awhile because of my numb feet)

        AMF, so glad you posted. I'm looking forward to getting back in the saddle again too. I just feel like this is a drastic step. Am I using them because it's a pretty easy thing to do or am I really that bad?

        Anyway, I guess it's still hard for me to accept that it's different for all of us. There's no manual, unfortuately.

        Thanks for the posts

        Have a great day



        • #5
          Hey Jenn, steroids have gotten me over some big humps. And because I'm a geek when it comes to testing stuff, I tested myself before and after steroids during my last relapse in January 2010 to see just how effective they were.

          I was whacked hard January 2 last year. Symptoms included severe leg weakness especially on my right side, mild upper body weakness, significant fatigue, poor hand coordination, severe numbness in arms and hands, moderate facial numbness. EDSS on 1/7 was a 6.5 (could not walk even a few meters without walker). I started 5-day prednisone course (oral) on 1/9 and conducted an informal strength baseline (exercising to failure).

          I retested my strength two days later (1/11) and the gains were significant, especially in the right leg. I retested strength again on Jan 19 (upper body) and Jan 20 (lower body) and the gains were holding ... and dramatic. Average gains in the six lower body strength tests: 142% right, 31% left. Average gains in the six upper body strength tests: 23% right, 8% left.

          Tibialis anterior: 300% R, 33% L
          Calf: 213% R, 25% L
          Quadricep: 163% R, 45% L
          Outer Thigh: 39% R, 8% L
          Inner Thigh: 64% R, 29% L
          Hamstring: 72% R, 43% L

          Biceps: 0% R, 0% L
          Triceps: 33% R, 8% L
          Shoulders: 33% R, 18% L
          Forearm: 22% R, 19% L
          Back: 33%, 0% L
          Chest: 14% R, 0% L

          A month after steroids, my lower body strength had significantly improved, upper body strength had improved, hand coordination had improved, fatigue went away, facial numbness started to wane, and arm and hand numbness went down from severe to moderate.

          So for a severe relapse, I do recommend steroids. I prefer oral (way easier and cheaper) and only three days with no taper. Five days was a bit much and the gains weren't noticeable. And I needed a taper, ugh.
          Dave Bexfield


          • #6
            Wow, you are a geek. I'm kidding, of course. Loads of good information and I feel better about making my decision.

            Weird, though, my neuro didn't give me a choice of oral or IV. And the last time I had them, he said I didn't need a taper so I didn't and I guess I was fine.

            Should I ask for a taper?



            • #7
              Jenn... the taper made me feel worse than the IV!


              • #8
                No, you should be fine at five days and no taper. Most neuros don't use tapers anymore when the course is so high in dose and short in duration. The only reason I needed a taper that one time was a delay in the last two days (long story) and, ha, I didn't get a taper, so I crashed harder than usual....

                Oral and IV are equally effective studies have shown. Since New Mexico is so rural, our MS clinic uses oral mostly. But either is fine and I've done both.
                Dave Bexfield


                • #9
                  Well I'm on day 3. And I jumped out of bed this morning and could feel parts of my feet. I've read a ton of blogs about how for some the steriods can take weeks to work but I'm blessed to be one that is seeing improvement almost immediately.

                  Everyone here was so helpful and with excellent advice, I just want to say how much I appreciate each and every one of you! Think I'll go eat some cookies now...

                  Have a splendid weekend.



                  • #10
                    Thats great news Jenn!! I'm glad to hear that you're beginning to feel better. Now I hope there are too many cookies in the house



                    • #11
                      I really have no frame of reference on this one...I've never had to do the steroids.

                      I just wanted to tell you that I hope it all continues to go well, and that you'll be back up and at 'um in no time.


                      • #12
                        Thanks again everyone. Really it's been a breeze and once again I totally over-thought it. Oh well.

                        Now, it's time to get on the bike!