Forum

Thoughts on Plegridy?

Hi everyone!

Firstly, I just wanted to say thanks to everyone for being so open and honest on here - as a diagnosed newbie, getting such a wide variety of thoughts and opinions on here has been really helpful!

I’m 29 years old and was diagnosed just the other month after a couple of years of various symptoms (the double vision which I had for a couple of months, being the most debilitating as I was used to driving to work everyday) to the annoying tingles in my foot / leg. My neurologist has advised that I do start DMD’s so I have been discussing the options with my MS nurses.

I work full-time and I’m just about to start a new job (and I haven’t mentioned the MS with them yet), I’m been veering towards Plegridy as I’m thinking taking an injection on a Friday night every two weeks (and giving myself the weekend to recover from possible grogginess) may be the best option to allow me to carry on with my daily activities.

I was just wondering if anyone had any experience taking this option, and if so, did you notice that it mainly improved / worsened symptoms? Also, did you experience any other side effects outside of the flu-type symptoms mentioned?

Any advice much appreciated :slight_smile:

L x

Hello. I have had four plegridy injections so far. The first two are smaller doses and the last two have been full dose. I was given a good plegridy nurse who has been on the end of the phone and has visited a couple of times. I have a large red patch which arrives about a week after the injection. In the hot weather it feels a bit hot and itchy. I have a runny nose now permanently, but no major flu like symptoms. Weirdly, in the hot weather, I sun burnt one of my injection sites and it bubbled and blistered so I now put a patch over the injection site if it is really sunny.

so, it has been fine so far, I just hope that it is helping with the MS.

good luck, ali

Love it! Massive advocate for plegridy been on it a while now. I work full time and offered to do exactly what you’re proposing however my employer told me because of work life balance it’s not fair to have my bad day on the weekend (I work Mon to Fri as well) so I do it every other Thursday and work from home on that Friday. So that may be worth exploring?? In the office we refer to it as my jabbin week in the style of Bob Marley obviously ! I have also found that the symptoms after got a lot better for me over time. You have to look after yourself. Have a plaster ready and a cup of tea or what ever you fancy and a treat. I hate injecting but even I do it now without thinking. Good luck lovely and let us know how you get on.

Hi I have been on Plegridy for 6 months and am quite happy with it as it only interferes with my life for 2 out of 14 days. Whether it works or not is anyones guess. I haven’t had a relapse since taking it but I do have new symptoms. The first 3 or 4 injections were quite grim and totally wiped me out for a good 24 hrs but since then they have steadily improved to the point that now if I take paracetamol every 4 hrs I can pretty much go on as usual. I do have to have monthly blood tests as my liver tests are elevated since taking it but the doctors etc do not seem overly concerned.Also injecting is a doddle, I started in my legs and then tried my stomach but now do my bum (can’t see the injection site so it doesn’t bother me ha ha!)

Yes, I forgot to write…I don’t do my arms. I just rotate four areas. My tummy and thighs are large spaces and can take it!

Don’t fancy doing my bum though…although a large area, I don’t think I could sit down!!

Thanks so much everyone for your comments, you’re all stars! That has filled me with a lot of relief that you’re all managing well with Plegridy and the worse flu-type symptoms (whilst imaginably grim, while your feeling like that) 24-48 hours our of two weeks seems manageable and hopefully, if I do experience that, it will lessen with time as it has done for you. My main worry has been the thought of adding other constant aches and pains that will make my day-to-day living way more difficult than I’m currently experiencing with just a bit of fatigue / tingles. Oh Flutterby, that’s not a bad shout with work. Once I get my foot in the door at the new place, I will see about suggesting working from home on the Friday. I was kind of hoping that they would let me do the bum (it doesn’t mention that as an site option in the booklet they gave me), my body frame is quite petite… and the bum is definitely the most cushioned part of me!! hehe Just something else I’ve thought of after reading your comment BELLE69 - how would you all define a relapse vs. new symptoms arising? Would a relapse just suggest old symptoms re-appearing? Big thanks again -wishing you all a lovely day! L x

Patience, I love my bum ha ha! You inject in the upper quadrants (imagine your bum is a circle-divide it into quarters and only do the top ones. I sat down for the first one to make absolutely sure I couldn’t hit my 'seat area ') so you never actually sit on your injection site. Honestly once it is done I never even feel it at all. I only ever notice it on injection day when I look for the mark from the previous injection to ascertain which side I need to ‘do’.

1 Like

Lolalou ask your MS nurse about your bum lol as it was mine who told me that it was an option. I did my legs for the first couple of months and then my stomach as I was hesitant about doing my bum but it is definitely the way forward (or backwards really) for me.

As for the ‘What is a relapse and what is new symptoms?’ I am damned if I know ha ha. I went to the relapse clinic as I was having severe nerve pain in my right leg and difficulty walking on it and my MS nurse sent me there(new symptom that I have now had for nearly 3 weeks constantly!) According to the registrar they would not treat that as a relapse unless I had complete lack of sensation and couldn’t walk. I left very confused.Am I having a relapse but they are just not treating it or am I not having a relapse just new symptoms? Either way I am in pain and my mobility is compromised but who knows-at least if it is a relapse it might get better where as if new symptoms it could be here to stay?

Just recently diagnosed as well and after a quick read through various bits and bobs decided on Plegridy, mainly based on the frequency of injections and the effective rate. Would anyone inject in a morning? Just thinking that if I had a bad reaction at least A+E will be quieter rather than injecting on an evening.

I think it’s really down to how quickly after injecting you develop symptoms and everyone is different. I personally inject at 1.30pm as it takes a good 8-10 hrs before I start feeling iffy and I am asleep by then and therefore sleep through the worst of any symptoms. However initially my symptoms came on much quicker and stayed much longer so I injected in the evening to avoid some of the symptoms but still had them the following day.My first injection though was done with the MS nurse watching me at the hospital at 11am It really is a question of trial and error to see what is right for you and what fits your lifestyle. Just remember to keep on top of your paracetamol/ibuprofen and fluids and you will be ok.

I inject at 10 am on a Friday. Usually an early night in and I normally wake up fine, I often need a siesta on the Saturday…maybe that’s me though and not the plegridy at all?!

and Lolalou, such an interesting point…a relapse or new symptoms. A whole new thread I think because I bet lots of forum users have good stuff to say. If it helps, my neurologist said that a relapse is when new symptom(s) appear, but often old ones are active at the time too. My neurologist believes that even when things are quiet, my MS is still active? I know that I have to demonstrate new symptoms for at least two days for him to note it as a relapse. I am offered steroids if the symptom(s) is significant.

Warmest thoughts ali x