I'm considering switching from Avonex to Plegridy. The Avonex I inject once a week and for the two days following the injection I'm dealing with flu-like symptoms, extreme fatigue, and increased pain...the side effects of the Avonex. I've been on it for almost 4 years and the side effects had gotten better, but for the last 6 months or so they've gotten hard to deal with like when I first started taking the medication.
I discussed this with my neurologist at my last appointment and she recommended switching to Plegridy because it's injected once every two weeks instead of weekly so hopefully fewer sick days from the side effects. So essentially 4 sick days from the side effects vs 8 sick days.
Is anyone here taking Plegridy? How is it working for you?
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ynggal
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Hi ynggal I just want to say hi from bitterly cold England. I've recently been diagnosed and am going to start iv Tysabri I've heard of plegridy but I have no experience of it im sorry. I hope other people will be able to answer your question 😊😊😊😊😊
Hi, janetb1968. I hope your treatment is successful. I wish you nothing but the best with your new "normal". MS can be quite a wild ride, but you'll find a lot of support here.
Sorry to here it's so cold there in England. I love it there and was fortunate to spend a good deal of time in London when my children were young. I'm in VA. Yesterday it was over 70 degrees and I had to turn the air on for a little. It was in the 40s today so on with the heat. That's how it is here on the coast.
I'm not on plegridy, but can sympathize with you over avonex as I feel crappy on rebif. Just wondering why you're neuro isn't considering( what is said to be) one of the 3 most effective DMT s: gilenya ( pill), Ocrevus (2x per year infusion) or tysabri ( monthly infusion).
There is a you tube video by Dr Vollmer from the Rocky mountain Ms center. It is in Ocrevus, but he includes a chart with each DMT and the effectiveness vs the side affects. Will worth the watch. I think he said that he only uses the 3 dmts that I mentioned.
@ynggal, hello! I’m sorry you’ve had such pains and problems with your shots. I’ve been on Avonex since 1994, aside from a short break for a fiasco with Tecfidera. I was also having intermittent flu-ish symptoms (they are awful!) until I spoke with a pharmacist at Biogen. He, too, has MS. He suggested that I take 2 Aleve, not Motrin, not aspirin, not Tylenol, just ALEVE. Take 2 about an hour before you’re going to do your shot-preferably not long before you go to bed. First thing in the morning, take 1 Aleve. I’ve done this ever since he told me and haven’t had and of the flu-like symptoms since. Well, I have had one or two incidents but that was from waiting too long after taking Alene to do my shot. I hope you give it a go and it works for you!
I made the Avonex to Plegridy switch a couple of years ago I think it was. Its gone fine for me. The side effects don't seem much if any different from the Avonex. Good luck if you decide to change to Plegridy.
Thanks so much for the reply, debbie-smith767. My neurologist said the side effects should be the same, but I'll only inject twice a month instead of four.
ynggal . Ive been on plegegridy since June of 2017. My last mri in August I only had 1 inactive lesion on cervical. Had 6 new lesion in June so hoping plegridy was the reason. Got new MRIs coming up Friday so will find out how it’s doing.
Have had flu like symptoms the last 4 or 5 injections but before that none. Only lasted a couple of days.
Hope this helps. I’ll let you know after i get results February 20 th.
Doubled51, thanks for your response. That's so interesting about the recent flu-like symptoms. Someone else I spoke to said they experienced worsening side effects the last 6 months or so. Maybe the cold winter weather has something to do with it? Changes in the barometric pressure really effect me.
Please do let me know what your MRI reveals. I'll say a prayer for no new or active lesions. My very first MRIs showed many, many lesions in my brain and a couple in the thoracic spine. The next MRI didn't show any new or active lesions, which was great news. I have my next MRIs this summer so fingers crossed!
ynggal . My first MRIs had many active brain lesions in April then in June had 6 more active brain lesions. Then August showed the 1 inactive cervical in August so I don’t know what to expect this round.
Believing in good results this round even though my symptoms have worsened steadily. But we know MRIs don’t mean symptoms or the disease aren’t progressing.
Praying your MRIs are good. I fought with my dr from Dec19 til the3 rd week of Jan about sedation but after mri dept read my records about previous failed attempts he finally ordered general anesthesia and it took this long to get them scheduled so Friday it’s lights out. I’ll let you know the 20th.
I've been on Avonix since 2001. I've been going to the VA and they don't offer the Plegridy. It seems like here recently (6 months) that the side effects of flu like symptoms have been bugging me. However they have only lasted a day and they really aren't that bad.
Isn't that strange that until recently you didn't experience the flu-like symptoms? Just like me! I wonder if the cold winter weather has anything to do with it. Changes in the barometric pressure really effect me. Thanks for letting me know your experience, Chuck95634.
@ynggal, hi again! I feel like a fraud! I felt I had to write and tell you that I did my Avonex shot Monday evening as per my description to you with 2 Aleve, etc. I Woke Up in the nite in excruciating pain, moaning and groaning, and managed to get up to go to the kitchen and take two more. It’s quite the fluke to still have symptoms like that-that bad-but thought of you and felt compelled to confess!! It seems like a good idea to try the Plegridy if you want to stay in that family, since it’s not Every week. But the dose is what? Is it doubled? I, too, love England. At when in the states, spent every summer in VA!! Roanoke, Christiansburg, Blacksburg, Hampton. Beautiful!
Oh, no, PetieJ! I'm sorry to hear you had that kind of reaction. I'm unclear why some of the injectables are given 3x a week or once a week or once every two weeks. So much to think about!
I have family out in Blacksburg, but don't get out that way nearly enough. It's a beautiful part of the state. I'm in Norfolk. About 25 minutes from the oceanfront.
I have been on seven DMT’s over the last twenty three years of MS. I had my best results with Tysabri infusion once a month, but when I got cancer I had to switch as my white T cell blood count went down. The only side effects were fatigue for two days after infusion, so I did them on Friday so I could continue to work 🙏Have been on Aubagio little over year with no side effects and MRI was stable last month👍 Hope this improves for you 👍👍🐾🐾🐕🐶😉 Ken
Hi ynggal: they go when I was diagnosed with MS I thought I can’t give myself a shot once a day so I went for the Avanex The doctor said if your time the flu symptoms of feeling like I was freezing would go down well it did so now I do copaxon. This is three times a week just under the skin not in the muscle . To me it does not have side effects and it is 100% better than Avanex. The day after I was injected with Avanex I had the worst PMS symptoms that I even told my fiancé do you still want to get married with me because I don’t know how this is going to happen if I am going to be this way after we get married . He said yes he loves me he wants to get married. I’m on it and have been for many years. Still married ☺️ He is my angel 😇 on earth.
Thanks, Babslover. I definitely need to have a conversation with my neurologist about the different options available to me. I appreciate you letting me know your experiences!
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