Dear All, just had my third shot of plegridy. The full one. Shucks…I am absolutely floored.
Aching all over, pain all over, headache of the worse kind. Cold then hot. MS symptoms very active.
First question…Does anyone know how long this will last?
Second question… Does anyone know what plegridy is doing to me? What is in the drug? How does it help with MS? (I know that I should have asked before)
Thank you Ali
Hi Ali The side effects of Plegridy are absolutely horrid - I know exactly how you feel, because it was the same for me when I jumped up to the full dose a year ago ; you have my utmost sympathy!!! Typically the effects last a couple of days - lots of users on here refer to their shot of Plegridy as their ‘Malaria Weekend’ because the side effects are not dissimilar. However I can only speak for my experience of side effects; mine typically lasted 4 days; the first evening, immediately after the shot, wasn’t so bad but in the following two days I experienced all the side effects you mention, plus the most profound nausea on the fourth day After that, I was back to normal. By the time the next shot rolls around you’ll end up having a debate with yourself as to whether or not its all worth it,but , for what its worth, these side effects do get less with time. I’ve been taking Plegridy a year, and have definitely noticed a change; I now loose only an afternoon and part of an evening the day following the shot to side effects - and I hope that will soon reduce to zero! As to what the drug actually does, the MS Trust states that it is thought to reduce inflammation and the body’s immune response that’s attacking our myelin. One possible reason that the side effects are so unpleasant is that Plegridy ( which is interferon beta 1a) has had a substance added to it( polyethylene glycol) that allows it to remain in the body for a lot longer. I do hope this answers your questions - but if you have more, feel free to ask away! There are loads of people on this forum who are more than willing to help, even if it is only just to bend virtual ears about the shitty way the drug makes you feel. Sending you loads of hugs - things will eventually get better though I know that, at the moment, it doesn’t feel like it. Take paracetamol or Nurofen with or just before the injection( 30 minutes to an hour) have a nice cooling shower and rest as much as you can. At least its only once every 14 days! ( mine is due next on my birthday!! Arrrrgh!!!) Mx
Hi Patience, 24 to 48 hours usually is my malaria experience. However, I do manipulate the date sometimes by a day depending on what I am doing. This was agreed and is fine by the Doctors and Plegridy nurse. My family know that nothing will deter me from my sitting in the house or garden waiting for the symptoms to go. Then I bounce back by Monday or Tuesday. I have got used to it although it needs careful planning as I am not very good at organising food.
I am a year on from the first dose, I am sticking to it and have got used to it. I understand that it is not supposed to make you feel better or improve symptoms, however last week I had to drive to a funeral, up down up down in the catholic ceremony crikey! Then drive to the cemetary then it just went on! A year or more ago I would have not been able to do this and be with it. I don’t look grey and ill all the time now and I still have limitations and I have what I call a small life, but I am sure for me, it has helped. I was still ill over the winter for 14 weeks with a virus that sent my body into overload, but I got better and didn’t seem to lose anything. Before Plegridy, I would have found that something had gone a-miss in the long term.
I have noticed that only occasionally, I feel a bit woo in the middle of the period between injections. It seems to occur when my injection site goes bright red and huge then it settles down again quickly. I reckon it is like anything, it is not a perfect science and will work continually but not exactly, so I think on some days it is more live than others through my body. I could be potty but that is what it feels like. I know it won’t be everyone’s cup of tea but I am happy that I am on the receiving end of massive investment into a medicine that may improve my life.
Happy birthday Minxie, I usually end up having MRIs on mine!
Hi Hebe, Thanks! I’m due an MRI soon but for some strange reason my consultant prefers that I have it after my treatment ‘birthday’ ( So I get an extra unofficial ‘celebration!!’) I also feel a bit ‘woo’ between injections - just like today! I’m feeling rather nauseous, and a bit giddy( oddly I have a month old injection site that’s over a month old and is a bit itchy and pimply, so I’ll have to keep an eye on the correlation so thanks for the heads up!!) . Still, nothing that ondansetron wont fix! Keep on keeping on Hebe and Ali - we may be swimming at the shallow end of the risk pool when it comes to DMD’s and relapses, but we are fierce and persistent!! Mx
One year on Plegridy; last week I found out that I have no new lesions on my brain or spine, so happily will continue with Plegridy. The consultant was very pleased and apart from the malaria weekend, a dropped foot and some extensive injection site marks, nothing nasty so far.
Hi I’ve been on Plegridy for 12 months much prefer it to Rebif and Avonex (major flu symptoms with Rebit and injection was very painful, Avonex was better injection once a week occasional flu symptoms was told Plegridy was a better drug to help reduce relapses. Haven’t had a relapse since being on it, injection is not very painful and easy to administer and other than a nasty red patch which lasts approx. 2 weeks I feel tired the day after I have it.
Hi I’ve been on Plegridy for 12 months much prefer it to Rebif and Avonex (major flu symptoms with Rebit and injection was very painful, Avonex was better injection once a week occasional flu symptoms was told Plegridy was a better drug to help reduce relapses. Haven’t had a relapse since being on it, injection is not very painful and easy to administer and other than a nasty red patch which lasts approx. 2 weeks I feel tired the day after I have it.
Hi guys,
so I had my second injection of plegridy on Monday. Felt terrible Monday eve - whole body was aching, headache etc.
Tuesday morning felt ok and went for a 5k run! Then gradually started feeling terrible again -aching legs with occasional shooting pains, hot and cold sweats, headache, earache and generally exhausted!
again, felt ok this morning and did another run. I’m now back to feeling awful again - and I can’t stop swearing even though I’m not even hot!
does anyone else’s side effects come and go like this? Does anyone else experience the sweating?!
Feeling really stressed, emotional and sorry for myself today!
Big love xx
Hi Chipper, I am at a different place to you I think re what I can do and not do, but I have at least a day and a half needed to rest after Plegridy injection. I have learnt that if I think I can do whatever I do normally, I can’t! I have great respect for the injection, but for me I wouldn’t be planning to do anything for a full day and a half at least, probably two after the injection. It has a way of catching up with you if you don’t do what it says. I think of it as a friendly alien making its way into my system, so the system has to cope in its own way and own time. For me as I say, I chill for two days, then on the third day bounce back like a kangeroo. If not, oooooo the chills, muscle pain, wooziness etc. all come back with a bang. Hope this helps.
Hi all i have received my first injection which i will be going into hospital to take tomorrow, must say im a tad nervous as it all seems so real now, im also on 300mg pregablin per day but still feel tingling in my legs does anyone have similar symtons??? if so does Plegridy help??? thanks
Dear Laurie, if you read all of the above posts, you should have a clearer view about plegridy and maybe you could start a new post?
I do hope that your first injection went well and that you had no or fewer symptoms. You asked whether plegridy helps with symptoms? Plegridy is taken, to hopefully stop any further relapses and to stop new lesions forming. Plegridy doesn’t help with your current symptoms and indeed, after taking it, your current symptoms may become more active for a short while. The medication pregablin will hopefully help with your everyday symptoms. I take 2,700 mg of gabapentin and my pins and needles has abated. Of course everyone is different and I do hope that your course of medication helps you.
warmest thoughts Ali
Thank you 
Hi Patience,
Just a thought, when the Plegridy nurse came here for my first injection, he told me about the plegridy website which has lots of info on it. The American one is the best although I can’t access all of it as it is - American! Anyway, worth looking at. Can’t remember off hand the exact address (brain fog this morning) but I think I typed it in and Biogen then it came up. I will have a look later to see if I can find it exactly. I found it useful, just as a reminder that although it is a weird thing and not always pleasant, I am doing it for a reason for me. The patients and professionals on there back it up and make me feel a bit better. Pam
Happy Friday everyone!
So, after much apprehension about starting on Plegridy, I found the very first injection (half dose, which I started 2 weeks ago) to be easy to administer and by alternating Paracetamol / Ibroprofen for the weekend, I managed to avoid any major flu symptoms. I felt a bit more tired so took it easy for the weekend and didn’t make any plans.
However, I’m due to take my second injection this evening and for the past couple of days, my right eye has been playing up - I’d describe it as a cloudiness, as if something has been smeared, or if you accidentally look at the sun and you see a bright light for a little while after. My eyesight on this eye is weaker than the other anyway, but it’s not usually like this and it’s quite disorientating.
It may not have anything to do with the drug, or even MS, but just wondered, has anyone experienced anything like this? It’s making me a bit worried about taking this next dose, especially as prior to starting, my symptoms were all minor!
Thanks! x
Dear Lolalou, of course we can’t say whether your eye disturbance is or is not plegridy, however, having an occasional white patch over my right eye is a common symptom for me and it began before I took plegridy. Rest well and let your ms nurse record the symptom and advise you x
I go to specsavers and can get in usually with a day’s notice, because they know I have M.S. If I have any eye changes at all, they are my first port of call. The manager spends about 1.25 hours looking at my eyes, asking questions, doing the picture thingy, then usually pronouncing that it is just a change and absolutely nothing wrong, just another blasted change I didn’t want. However, twice I have been there and she has then sent me to the hospital for an eye picture then phoned my GP to tell him. I went to the GP to ask and he said, always go to get your eyes seen as he can’t do that.
So each time, there has been nothing that has needed treating and all fine. But, they are all very clear, don’t mess about with your eyes, get them seen. If you broke your arm you wouldn’t hang about till you got it seen.
I do get cloudy eyes, it is one of my signs along with cramps, dizziness etc that for me, mean I have to stop and rest. If I breathe, rest properly, calm down in all respects, sleep it goes away. But I would not hesitate to get them looked at if I thought it was a new change.
I take Plegridy, my eye concerns were before Plegridy so although I get the Plegridy flu and all that it brings, I have no problems with my eyes.
On a daily sort of note, I sometimes get a bit of an infection not related to Plegridy or M.S! So GP would be the port of call. I like gardening so occasionally if something flirts in my eye because I am an idiot and don’t wear my protective gardening specs, you can guarantee I need to get a cream from the Doc.
ps on a last note, Plegridy is hard work however, last Friday I spent the day with my grandson who is just past one. Three years ago and pre-plegridy, this would have been unheard of or it would have put me to bed for a month.
Plegridy , makes me so ill for up to 72hrs, as dreadful as this reads, its good to know I am not alone. Sending healing vibes to all.
I am an MS sufferer (remitting and relapsing) and have recently been taking Plegridy as advised by my neurologist however since my first dose (I have taken 3 so far over 6 weeks) I have been having severe reactions and I’m currently unable to walk and am struggling to talk. Please note, this is just my experience and I have heard great things about Plegridy, I think I am in the extent minorities. I have spoken to my MS nurse and neurologist and this has been associated with an MS flare up but I am very scared that it has been getting a lot worse and I am told it is very unlikely to be related to the medication. I was absolutely fine until I started taking Plegridy so it seems like a massive coincidence that I am having such a severe flare up at the exact time I started the medication when I have had just one severe flare up (vision related) and have had evidence of lesions for nearly ten years. I am very concerned that the damage may be permanent and due to the problems with my speech this may be turning into something more sinister. I am not sure if I should be taking my fourth injection as it seems to be getting progressively worse with each dose and is far worse than even the most severe documented side effects. Any advice would be appreciated.