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Plegridy. Any thoughts on this medicine?

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  • Foxfire
    replied
    I just took shot number two. Premeditated and hydrated more to follow.
    I have to say the shot is so much easier than Avonex.

    Leave a comment:


  • Litaluv
    replied
    Originally posted by Shutmedown View Post
    Litaluv, I did my first shot on Jan 16th and the next day my site reaction was about the size of a quarter. It is now 10 days later and the site reaction has grown to the size of a softball and is itchy. Did your doctor say if it was an allergic reaction or is it an infection? I need to make an appointment to see my doctor but i also don't know if it is just because it was my first shot. Any advice would be helpful.
    the doc didn't really say but has been treating them as allergic reactions. I have been told to take Claritin a few days before injection and continuing a few days after. I was also given a cream to put on for the itching.

    But I'm a happy person today as the doc took me off the Plegridy. Like I said before, my side effects go far beyond flu-like. I can't handle it and my doctor was very concerned. This past weekend was HORRIBLE for me with the lastest injection. Even the Vicodin didn't help.

    Good luck to everyone that continues with Plegridy! I wish you all the best....it just didn't work for me. I think Gilyena is up next.

    Leave a comment:


  • Shutmedown
    replied
    Site reactions

    Originally posted by Litaluv View Post
    I was diagnosed in November 2014 and started on Plegridy immediately. I know that everyone is different, but my experience with Plegridy has been horrible. I've had a site reaction for each injection which has been the size of the palm of your hand. Each one has taken a month to heal.

    The side effects for me are brutal. I'm pretty much curled up in the fetal position for 3 days in severe body pain. Fever, sweating, nausea, loss of appetite, etc.etc...

    I saw my doctor today and she was very concerned with the severe reaction that I continue to have. I have an injection coming up this Friday and this one will determine if I continue with Plegridy or not. This time she told me to take Claritin everyday starting Wednesday until the day after the injection and has finally given me pain medication for 3 days.

    I really hope this works for others and they have better results than I've had.
    Litaluv, I did my first shot on Jan 16th and the next day my site reaction was about the size of a quarter. It is now 10 days later and the site reaction has grown to the size of a softball and is itchy. Did your doctor say if it was an allergic reaction or is it an infection? I need to make an appointment to see my doctor but i also don't know if it is just because it was my first shot. Any advice would be helpful.

    Leave a comment:


  • Nabbosa
    replied
    Study on FLS in Plegridy

    FLS - that's flulike symptoms.

    There's a study going on right now - I'm part. It's to see how the flulike symptoms affect people switching from other DMDs.

    It seems that people who have already taken interferons don't react with FLS in the same way as people taking an interferon for the first time. And those who were taking the "higher dose" interferons (Beta - a shot every other day) seem to react less than those taking the less frequent dosages. So you might be able to take Plegridy later on without these symptoms if you so choose.

    I'll say that I haven't had any FLS. But I also have always been very careful to pre-medicate (whether Plegridy or Beta), and I usually take the shot before bed, so I sleep through any symptoms. And last summer I started using Tylenol arthritis formula because it works over an 8 hour time period.

    The only issue I've had is red patches at some injection sites. I would get them with Beta, as well. It doesn't happen every time, and it's been different on different body parts. But the last two Plegridy shots - both in my arms - caused really big welts that were really itchy. The doc had me take Benedryl for the first one. The second one, I used prescription-strength hydrocortisone 2-3 times a day as soon as I saw a red patch starting.

    The difference for me with Plegridy was that the red patch became annoying around day 7, and reached its worst point around day 11. I'm betting that has to do with the absorption/time-release effects of the pegylation.

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  • Lynnada
    replied
    Litaluv - Sorry to hear you're having a rough time. It may just be that Plegridy isn't the right medication for you. Fortunately, now there are plenty of meds to choose from.

    Tecfidera was like that for me, it was non-stop suffering once I titrated up to the full dose.

    Maybe you'll do better with one of the pills, that would be nice to not have to deal with injections. Copaxone is an injection, but it's not an interferon, so no flu-like symptoms, but the side effect is injection site reaction.

    Let us know how it goes and what your doctor recommends if you need to switch meds.

    Good luck and feel better!

    Leave a comment:


  • Litaluv
    replied
    Plegridy

    I was diagnosed in November 2014 and started on Plegridy immediately. I know that everyone is different, but my experience with Plegridy has been horrible. I've had a site reaction for each injection which has been the size of the palm of your hand. Each one has taken a month to heal.

    The side effects for me are brutal. I'm pretty much curled up in the fetal position for 3 days in severe body pain. Fever, sweating, nausea, loss of appetite, etc.etc...

    I saw my doctor today and she was very concerned with the severe reaction that I continue to have. I have an injection coming up this Friday and this one will determine if I continue with Plegridy or not. This time she told me to take Claritin everyday starting Wednesday until the day after the injection and has finally given me pain medication for 3 days.

    I really hope this works for others and they have better results than I've had.

    Leave a comment:


  • Shutmedown
    replied
    1st use

    Hey everyone. So Friday i did my first shot of Plegridy and I have to say it wasn't so bad. The only side effects I experienced were joint pain and a mild irritation at the injection site which is still a little sensitive. I pre-medicated the same way I did for Avonex but with the Plegridy, the next 24 hours were tolerable whereas the Avonex knocked me off my feet for a day.

    Leave a comment:


  • Lynnada
    replied
    Firefox - My first injection with Plegridy was the same as yours. Let me tell you, I was anxious about doing shot #2! The second injection was MUCH better, only a mild headache that was on and off.

    You can still see discoloration on my arm where I did my first injection about 2.5 weeks ago, but it is fading. The red site reaction on my leg from the second injection is much smaller.

    I'm hopeful shot #3 will be almost uneventful, but still nervous about side-effects.

    Good Luck and Good Health to everyone!

    Leave a comment:


  • Westgrl
    replied
    Originally posted by Foxfire View Post
    I developed a welt a the injection site, I found it odd I never had a site reaction with AVONEX after 7 years and this little needle left a welt.
    IM injections, like Avonex, don't usually give site reactions but Subq injections, like Plegridy, do. I think it's because the IM injects so deep. The subq injections are going right under the skin so you see welts, redness, etc. It's not actually from the needle but the medication. I never had them with Avonex either but I get them with Plegridy.

    Leave a comment:


  • Foxfire
    replied
    First shot from the starter kit, premeditated with Celebrex took the shot in the afternoon normally I took Avonex right before bed. The injection was a breeze never really felt it. No real side effect that day. I woke up and felt like I was hit by a truck. Full blown flu like symptoms all joints hurt, chills low grade temp. About the same time I took the shot 24 hours later they were gone. I developed a welt a the injection site, I found it odd I never had a site reaction with AVONEX after 7 years and this little needle left a welt. I took Celebrex and Tylenol until the symptoms were gone. This one wasn't easy. I hope number two is better.

    Leave a comment:


  • Lynnada
    replied
    Did my second shot last night and so much better. The side effects were only a mild headache on and off today. I slept great last night. I still have a red site reaction where I did my first shot 2 weeks ago, but the doctor's office said those should improve over time as well.

    So, I'm optimistic the next shot will be even better and that plegridy will work out for me. I forgot to check with my doctor when I should have blood work done again. Hopeful that will turn out well.

    Leave a comment:


  • Westgrl
    replied
    Hope everything went ok FoxFire! I am a total needle phobe, just the sight of sticking myself makes me have an anxiety attack. The fact that I don't see the needle makes it so much easier for me!

    Leave a comment:


  • Foxfire
    replied
    Tomorrow at 3:00 the ms active source nurse will be here for the first Plegrity shot. Premeditated, hydrate and fingers crossed. I'll let you know how it goes.
    No matter how it goes I know I could still never give myself the injection. Hoping this is different.

    Leave a comment:


  • Shutmedown
    replied
    Hi everyone. I am new here and have been on Avonex for about a year now with few complaints. I am starting Plegridy on Tuesday and will be more than happy to share my thoughts once I use it. The Avonex was working well for me but the once a week shots were really dragging me down (flu like symptoms and body aches), so i'm excited to only inject every 15 days.

    Leave a comment:


  • Lynnada
    replied
    Took my first dose yesterday, premedicated with extra strength Tylenol and drank plenty of water. Felt kind of blah, slightly headachy on and off and had some mild to moderate body aches. When I went to bed, my feet got cold and I could not get them warm and the aches got worse. I laid awake for an hour, then it was time for more Tylenol, after that a half a Xanax, because I was stressing and needed sleep and a pair of socks, I slept well.

    Woke up today, feeling blah and have been so most of the day. I was well enough to do a load of laundry and it was a dreary snowy, rainy day anyway, so I wasn't missing anything. Feeling better now tho, but still slightly achy and fatigued.

    I also have Fibromyalgia as well as MS and some arthritis, so pain and fatigue is not unusual for me. I have taken Copaxone for most of the 12 years since diagnosis. Plegridy seems to have increased my headaches, body aches and fatigue. I do hope it does get better over time, because I was feeling pretty cranky too.

    Leave a comment:

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