In January this year I was given a choice of about 6 different DMD’s to start, and I chose Plegridy as I only had to self inject it every two weeks. I’m getting on really well with it but I don’t know anyone else who is taking it.
My MS nurse said I am one of the first of their patients who has started on Plegridy, without having tried other DMD’s first (she also mentioned they are encouraging others who are currently on another DMD to try to swap over to Plegridy - she did say the name of the other DMD, but I’m having a ‘brain dead’ morning and can’t remember the name, something like Advocate but I know that’s my dog’s flea treatment so it’s not that!!).
So I’m not sure what I’m asking really, just wanted to hear other people’s experience of Plegridy. Family and friends keep asking if I feel better or if it’s making a difference, and I have to explain that it doesn’t work like that - that’s not what it’s about.
I’m an ex Plegridy user. Same as yourself, and probably everyone else who chose it, I liked the only once a fortnight injection idea. After two months I was aware of the low moods and unreasonable crying, precisely the day after injection. Strangely, it only lasted 48 hours, whereas some people experience full on depression. I couldn’t get out of bed, when I eventually resurrected about lunchtime, I didn’t want to get dressed, eat etc. Awful anger and tantrums. Then, after 48 hours, all over and feeling very foolish. Two weeks later I was beginning to dread the next injection, knowing what was to follow. My Neuro insisted I give it six months fair trial though, before finally changing me to Tecfidera, at my request. On that since March 1st. Seeing Neuro end of this month. Feel fine although my walking is rubbish, but that has been on the decline since xmas anyway. It’s very frustrating when people ask, " but aren’t you on medication? Isn’t it helping then?" They just don’t get it. Nothing will “help” it and I’m not going to “get better”. :-/
Plegridy is the same kind of beta interferon as Avonex (which is I think what you’re trying to remember the name of). Avonex is a weekly intramuscular injection whereas Plegridy is fortnightly subcutaneous, therefore making it easier to inject plus easier to fit into life. I’ve not taken Plegridy but there are many others who have. Perhaps the reason you’re not coming across many uses though is that first timers (to DMDs) are tending to be steered towards oral therapies like Tecfidera and Gilenya because not only is it easier to swallow a pill than inject, they are also more effective at reducing relapses and severity of relapses.
Hi Angc Im glad that you are doing well with plegridy. I also thought would be easier with injection fortnightly rather than pill 2 times a day I have started plegridy last two months. I was on tecfidera for a year but i thought side effect were unbearable. I think i was wrong because each time i do the injection with plegridy I am almost disabled and it lasts for 2-3 days. I get headache, fever, hot, cold, feel shaking,terrible spine pain, numb feet and of course fatigue. I am really fed up with it but I wanted this to work for me. No idea how much long would it take to get better. With tecfidera i had tummy ace and red flashes only. Ex
do you think you’ll stay on Tecfidera now? I wasn’t really told much about the oral options, but I had said before that meeting that I was happy to inject so perhaps that’s why. I’m lucky as I don’t get any reactions after the injection, apart from an injection site reaction a few days later, it’s just a red circular patch about 3 inches across.
sorry to hear you’re getting such severe side effects from Plegridy, it must be awful knowing you have that to deal with every couple of weeks. Are they the same side effects you were getting with Tecfidera? Hopefully you’ll find you get used to the injections, but in the meantime have you found anything that could help?
I was told to take a paracetemol (magic cure-all!) half an hour beforehand to help with the ‘flu-like symptoms’ and an antihistamine to reduce the itching I experienced a couple of times after the injection. I don’t bother with either, but I do have my own little ritual each time.
I do my injection at the same time of day, get everything ready, do the paperwork, do the injection then make sure I lie still on the sofa for at least 20 minutes, not getting up for anything. Of course the phone will ring, someone will knock on the door, the dog will need to go out, whatever…I don’t move. I’m sure it doesn’t really make any difference, but it’s my way so it works for me.
I hope you can persevere with it, I suppose you’ll be expected to give it a good try for 6 months or so before they let you try something else.
Since you’ve had such bad side effects from both Tecfidera and Plegridy, maybe you could ask your neurologist for Tysabri? You may find it wipes you out for a day or even two at the start, but at least it’s only once a month and because it’s so much more effective than Plegridy, it might feel like mild side effects are worth it. And the extra fatigue most people get with Tysabri aren’t as bad as the flu type symptoms you are getting with Plegridy.
Also, many people actually get a positive reduction of existing MS symptoms. Not that I think you should start on Tysabri expecting improvements (that way you aren’t disappointed if you don’t get any), but to my mind it’s a great DMD.
Hi Sssue Thank you for your reply. I have an appointment with the ms nurse this Friday. I will discuss and ask her about Tysabri. I was on tecfidera and the reason my consultant put me on Plegridy because is less strong drug so I presume they want agre with Tysabri either if is stronger. My body doesn’t want to tolerate much however I have to keep trying.
I haven’t found that my neuros or MS nurses have ever described one drug as ‘stronger’ than another and given that as a reason to take one drug rather than another. There are drugs that have more risks associated with them (such as Cladribine and Lemtrada), plus HSCT) but as each drug seems to work in totally different ways, it’s more a fact of what drug suits the individual (especially considering side effects) and efficacy of the drug.
The problem with Tysabri is really only that if you have the antibodies for the JC virus, you may only be able to stay on it for 2 years due to the possibility of developing PML. Recently however the risk factor for PML has been fine tuned so people who are JCV+ are able to stay on it for longer.
Personally I’d have stayed on Tysabri but for my pesky liver that has a habit of reacting poorly to different drugs. (And my liver has gone bananas on 3 separate drugs now - ones that are easily tolerated by the majority of people - so it wasn’t the strength of the Tysabri that was the problem.)
Tysabri is however a second line drug. This means you have to have tried at least one first line drug and ‘failed’ (ie had relapses or been unable to tolerate it) plus have had at least 2 clinically significant relapses in the previous 2 years to qualify for it. So initially you wouldn’t have been able to take Tysabri. But it’s possible that now you could.
Hi - I take Plegridy and it seems to work well for me. Just get a small red mark near the injection site, which takes time to fade. As advised I take a paracetamol 30 mins before the injection and usually inject myself close to bed time. All these meds seem to have side effects that effect people differently. I guess it’s a case of seeing what works for you as an individual. Also, if you have other health issues these will be taken into account by the neurologist. For this reason I was only given a choice of two drugs. Went away for a week recently and was grateful that I didn’t need to take meds with me.
I have been trying to make a decision on which DMD to go with, the stomach upsets from the tablets makes me want to rule them out as my work have been brilliant but not sure how long that will last if I’m taking time off with stomach upsets, even if it is just for the first while. I have had 3 relapses in the last 18 months, all involving optic neuritis but haven’t needed time off work.
It’s hard to decide when you have nothing to base the decision on. I relied on my MS team to give me as much info as possible, then I asked which they would recommend if it was their decision.
Found out one of the team has MS and chose to change over to Pledridy when it became available, and she coped ok with it.
Obviously everyone is different so you can only try to find a medication that best fits in to your lifestyle and give it a go.
Good luck with which ever you decide on, having had 3 relapses so close together must be very hard to deal with, I hope you’re not suffering too much. Take care.
My symptoms aren’t having too much impact on my life so far, lots of tingling and back pain but I have been put on pregabalin which is starting to help. The plegridy seems like it will be the least intrusive in my routine as I have 2 young children (8 &4) and a 30 hour a week job. My plan is to do the injections at night and I don’t have any problems self injecting as my man will never be able to it!
I was using Avonex when I had a relapse(Lost all sight & ended up getting took to Gartnavel,as this only place i could get MRI scanner) & ended up on Plegridy,I got told about initial flu symptoms,then none
until ,I had bad symptoms yesterday
why the gap of feeling no side effects then out the blue,thr back
if this is on going,I’m gonna stop using Plegridy,
i get 6 injectors delivered @ a time
i only got told about Plegridy,never heard of anything else,bruises last for months,still showing when i use next injection