Hi I have taken one dose of Plegridy so far and the side effects have been many and unpleasant. Have any of you experienced bad dizziness,headaches,back pain , leg pain and really wobbly legs and if so do these symptoms subside with the continued doses or get worse ? Seriously contemplating not continuing with Plegridy but I have tried Techfidera and that didn't go well either so running out of options. Any thoughts would be greatly appreciated
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About to start Plegridy, too
Hi mouse19,
When researching Plegridy, I found it difficult to find people who are on it. That has made me a little nervous about starting it...
If you read through some of the other posts, you can see what others have done. From what I have read, all the interferons take a bit of time to adjust to, if your body is going to adjust. Did you start with the full dosage, or will you ramp up?
I also noted that a fair number of people have tried various over the counter regimens to help with side effects: ibuprofin, Aleve, and some antihistamines as well. It seemed that for most the onset of side effects was a bit delayed - maybe 2-4 days after taking the shot. Was that the same for you?
Sorry I do not have anything to contribute; I am just curious about your experience since I am expecting to start Plegridy soon, too.
CherylCranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)
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Similar for me
I ended up with quite high temp, terrible back pain, and a slew of other issues. Neuro sent me to ER after both of my 1st two shots. Biogen, my PCP, and my MS doc all urged me to try a 3rd dose to see if my body would adjust and it did. I'm doing just fine on it now after seven injections. I wish you luck.
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more and more people are getting on it, but it is still fairly new so it is taking a little while yet. I do not take a DMT because I am primary progressive, but this is what I have noticed while moderating. Just passing the info along. Best of luck to you allhunterd/HuntOP/Dave
volunteer
MS World
hunterd@msworld.org
PPMS DX 2001
"ADAPT AND OVERCOME" - MY COUSIN
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Originally posted by cjtmn View PostHi mouse19,
When researching Plegridy, I found it difficult to find people who are on it. That has made me a little nervous about starting it...
If you read through some of the other posts, you can see what others have done. From what I have read, all the interferons take a bit of time to adjust to, if your body is going to adjust. Did you start with the full dosage, or will you ramp up?
I also noted that a fair number of people have tried various over the counter regimens to help with side effects: ibuprofin, Aleve, and some antihistamines as well. It seemed that for most the onset of side effects was a bit delayed - maybe 2-4 days after taking the shot. Was that the same for you?
Sorry I do not have anything to contribute; I am just curious about your experience since I am expecting to start Plegridy soon, too.
Cheryl
Here's hoping 😃🎉💜🌻
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Second Dose
Hi folks I have decided to proceed with the next dose of Plegridy. I have had my bloods checked as I had some unpleasant side effects including intense back pains, am pleased to report bloods are good.
So I will be doing my next injection.
Heres hoping that the side effects will lessen with my body adjusting to this treatment 😃
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Thank you for your input 😃
Originally posted by Sazed View PostI ended up with quite high temp, terrible back pain, and a slew of other issues. Neuro sent me to ER after both of my 1st two shots. Biogen, my PCP, and my MS doc all urged me to try a 3rd dose to see if my body would adjust and it did. I'm doing just fine on it now after seven injections. I wish you luck.
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Update
3 days after injection and side effects have arrived 🙄 Right side of face numb and painful and back of neck and ear numb and painful and right calve also. Feeling wobbly 😬 On the plus side I haven't had an injection site reaction so far this injection was in the stomach the first was in the thigh and reacted with a red raised area of approx 2.5 inches round and took two weeks to calm but not disappear. Here's hoping effects will ease soon 😊
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Oh no
I was hoping it had gotten better, but it sounds like it takes some time to know if you will adjust. Thanks for keeping us informed -- I feel really nervous to start this drug!!!
Wishing you all the best and a speedy recovery.
CherylCranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)
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Originally posted by cjtmn View PostI was hoping it had gotten better, but it sounds like it takes some time to know if you will adjust. Thanks for keeping us informed -- I feel really nervous to start this drug!!!
Wishing you all the best and a speedy recovery.
Cheryl
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How are you doing?
How is it going with the Plegridy, mouse? I start on Friday & am hopeful you have begun to manage the side effects. Did the side-effects build for you as your dosing went up? I'm starting with the 1/2 dose, then increasing for the next 3 injections.
Anyways, just wondering how you are doing.
CherylCranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)
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I've been injecting Plegridy for a little over 1 year now and definitely have had some side effects but for the most part have them under control after discovering to use Naproxen for about 1 hr before injecting and periodically for about 24 hrs after. This masks the the fever, aches and pains very well. Outside of that I have noticed best results when injecting into less fatty tissue. Injections into my belly or arm guarantee a large itchy pink blotch after one week. I hardly see this when injecting into my thighs. And when I do, it is less irritating. These are things that happen to me and I'm sure it will different for everyone. Keep a journal to know when and where you injected and what time you took what other meds. This way, maybe you'll be able to see a trend of what works best for you and your future injections days will go easy.
I used to be afraid to do anything on weekends after I injected, now I have a better idea of what I should and shouldn't do.
Hope this is helpful.
TravisT
Originally posted by cjtmn View PostHow is it going with the Plegridy, mouse? I start on Friday & am hopeful you have begun to manage the side effects. Did the side-effects build for you as your dosing went up? I'm starting with the 1/2 dose, then increasing for the next 3 injections.
Anyways, just wondering how you are doing.
CherylDX 11/2014
Plegridy -1/2015
Gilenya - 8/2017
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I have been taking Plegridy for a year. Prior to this I was on Rebif. The only side effect that I had was a terrible migraine for a few days.
We have worked to get this under control using prescription strength Aleve prior to injecting and then every 12 hours for 2 days. This seems to be working well. I am sure the Aleve would also have an impact on other side effects I could potentially have such as the flu like symptoms.
I really had no issues transistioning from Rebif to Plegridy and maybe that was because they are both similar interferons.
I am pleased with ononly having to inject every 14 days so that really gives my body a break. And I really do think I feel better. When on Rebif I had flu like symptoms all the time, no I only feel slightly bad for two days out of 14.Wendy
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Thanks!
Thanks TravisT and holliedog! I appreciate your advice. The first injection went fine, but the side effects started as soon as my NSAID wore off and I was miserable! I'm still feeling a little off (started Friday), but I'm hopeful I will learn to manage this. Every 2 weeks is awesome...
Pre-medicating, staying on a regimen for a full 48 hours, and hydrating better should help. Fingers crossed - dose #2 (94mcg) is on Feb 19.
Really helpful to hear from folks who are managing well on this med. Thanks, again!
CherylCranial VIth Nerve Palsy (2008, 2014); Partial Myelitis (9/2015); RRMS Dx (11/18/2015); Plegridy (2/2016)
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Glad to be of help Cheryl.
I do know that I must be very diligent in remembering to take my Aleve, even if I do not feel I need it. Sometimes I just forget because I feel well, and then as soon as it wears off I get a killer headache.
Now after a year I think this is my biggest challenge.Wendy
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