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Plegridy side effects

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    #16
    Struggling

    So I moved to Plegridy from Avonex very recently and after the first two smaller injections this week did the first full dose. Each time (as I had with Avonex), I've been getting the aching limbs, headaches and general flu-like malaise.

    This week, after a failed first attempt, managed to inject my upper left arm ok on Thursday evening - although it did hurt much more than thigh locations have done. Didn't get the intense chills over night (yeah!) and just felt like crap the next day. Not really able to concentrate on anything. Usual medications of paracetamol and ibuprofen taken. Went out that night to a concert (pre-booked many months before I knew I'd be on medications) and kept the meds intake. Very late home and felt really rough. Got up Saturday morning expecting to feel pretty good again. No. Not at all. Struggled to do anything. Slept most of the day away and literally had to be woken to eat a meal.

    So now on Sunday and still feel pretty low. Paracetomol been needed again today which I never needed on Avonex. Does this get better? I seriously can not deal with 3 days out of 14 feeling useless. The side effects were way worse than the worst sessions I had with Avonex. I only moved over due to issues with using the Avonex pen and the joy of once a fortnight medications. Scared I've made a really bad decision that will have huge impacts on planned weekends away and work.

    Any advice/support hugely appreciated. Never felt so low as I do now

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      #17
      Originally posted by FeaiShadow View Post
      Scared I've made a really bad decision that will have huge impacts on planned weekends away and work.
      Wow. Such seriousness. Really bad? Huge impacts? Scared? You're being much too hard on yourself.

      You didn't make a "really bad" decision. You didn't even make a "bad" decision. All you did was try a different medication, and it didn't work out the way you thought it would. That's all that happened.

      Does your public health service absolutely forbid you to switch back to Avonex? If not, then what are you feeling scared about? If the side effects don't pass, then you can just go back to Avonex. And then rejoice! There are a lot of things in life that aren't that easy to undo.

      So relax and give yourself a break. You didn't do anything wrong. Finding out what you like and don't like is part of life. Here's a good guideline: Do things you like. Don't do things you don't like. Keep it all in perspective and move on. You'll be fine.

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        #18
        Originally posted by jreagan70 View Post
        Does your public health service absolutely forbid you to switch back to Avonex? If not, then what are you feeling scared about? If the side effects don't pass, then you can just go back to Avonex. And then rejoice! There are a lot of things in life that aren't that easy to undo.
        No idea - likely will discourage so soon after changing and from experience making a decision and then seeing the result (chosen drug arriving) can take 8+wks.
        Scared 'cos I'd hit a wall with Avonex injection. Never liked needles, know it helps me (I'm not that daft) but have increasingly found using the pen very difficult. Button is really tough to depress and sadly haven't got anyone to assist. Had a couple of bad experiences too. Going back to that will be tough but currently agree, it may be the lesser problem.

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          #19
          Too soon?

          Hi FeaiShadow,

          I have only taken 2 Plegridy injections (this is my first DMD) so I'm not yet up to the full dose. However, I will say that I made some changes in my approach from injection #1 to injection #2 that seem to have made a huge difference:

          1. I really hydrated (80oz +) the day of my injection and the next 2 days. I chose to inject around 5pm on Friday night.

          2. I took 440 mg Aleve (2 OTC strength Naproxyn) starting at 10am the day of my injection, and then every 10-11 hours for 48 hours. Starting on Sunday, I switched to 600mg Ibuprofen every six hours while awake.

          3. I am finding that Plegridy seems to flare up my symptoms and make my nerves more active for the first 24 hours, so I also added 1 Gabapentin (300mg) on Friday night so I would sleep really well.

          4. I take it easy during the weekend. Lots of rest and low key activities. I have experienced myself that it is easy to overexert on these weekends right now, which will prolong the side effects for me.

          I have heard that it can take 3 months for the body to adjust - likely less when switching from another interferon - so while this is my routine now, I am hopeful that side effects will reduce. I do not feel great. No doubt about that. However, I can go to the grocery store, help my kids with homework, get to church, etc. I just need to plan to rest in between activities on med weekends right now.

          I'm wondering if your concert exacerbated your side effects. I would have gone, too! But maybe give it a few more times to see if the side effects can be managed & therefore the every 2 week injection schedule can work for you.

          I have resigned to give it at least 3 months, and hopefully I can tough it out 6 months before making any major decision. However, this is my first DMD, so I have nothing to compare it to...

          Best of luck to you. I hope you find something that works well for you overall.

          Cheryl
          Cranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)

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            #20
            I've been on Plegridy now for almost 2 years. I switched to it from Tecfidera, which I developed a bad allergic reaction to. Prior to to Tecfidera I took Betaseron for 12 years and had zero issues with it, other than I got really tired of being a human pincushion.

            With Plegridy I was told to pre-treat with Aleve about an hour before my injection and then again 6 hours after my injection...which I did. I had the usual red spot at the injection site and it stuck there for a full 2-3 weeks and if I forgot to pre-and-post treat with my OTC drug then I could count on feeling aches, pains and have a fever.

            Now, all these months later I am having aches in either leg, sometimes bad, sometimes not, and taking an OTC doesn't touch it. I am having new issues with my teeth and gums and don't know if this is part of Plegridy's suitcase of side effects. I have headaches more often than I used to and my fatigue is out of this world crazy. My usual treatment of Provigil doesn't touch it either.

            I have a check up with my neuro in another month and will be addressing all of these issues with him them but was interested to know if anyone else experienced these same issues with Plegridy?
            Wendy
            "There are signs everywhere...."
            "Life is wasted if it's not lived as an adventure."

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