@monks

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monks

Starting on plegridy

Hi all, This is my first post. Getting my first batch of plegridy tomorrow. I'm planning on starting to take it at some point this weekend. Has anyone got any tips or advice. To be honest I am a little nervous. Thanks

Stumbler

@Stumbler

Hi @monks , the anticipation is going to be a lot worse than the actual injection itself. I'd suggest doing the deed on Saturday evening, so that you have Sunday to recover from any immediate side-effects.

monks

@monks

Thank-you. Stumber, That was my plan of action. I am also looking to get a separate mini fridge to keep the pens cool, any recommendations would be most welcome.

curiousone

@curiousone

I've had 5 plegridy injections. I take it after work and gym on a Thursday night. I find taking it before bed is good as you can also through most of it. I take some panadol osteo (slow releasing) a few hours before, then again before bed. Make sure you drink plenty of water the day of and the day after as it will dehydrate you. Have water next to you when you go to sleep if you take it at night as well as some neurafen in case you get some flu like symptoms that the panadol doesn't prevent (hasn't happened to me yet :)) On Friday I'm fine and back at work, just take some more panadol in the morning and good to go... Have even gone to the gym before work the morning after :) Good luck and feel free to PM me if you have any questions.

monks

@monks

Thanks curious one, Your post is more positive than some I've read.

superman

@superman

Before I inject I take a antihistamine and paracetamol as the injection site tends to burn afterwards, the antihistamine cools the area. I also count to three but do it on two lol It is best to do the injection before going to bed as mentioned. There is no need to get an extra fridge as it is better kept in your normal one, as long as it does not get anything out in the box and damage it. Hope you're ok

superman

@superman

Meant to say as long as it doesn't get knocked, my fingers won't work at the moment.

curiousone

@curiousone

@monks I've read a lot stuff negative about it online but it's no way near as bad as I thought. I'll find out in August if it's working as intended with my next MRI.

monks

@monks

Thankyou all, Probably going to start sat evening, Will post how went.

embroideress

@embroideress

@monks How has it been going with Plegridy? I'm starting next Thursday. Very anxious. Thanks.

Ana80

@Ana80

Hi. How are you getting on @monks and @embroideress? My first delivery is tomorrow and I’m off to the hospital on Wednesday for the first injection. I’m anxious too but glad I’ve read this post to get some good tips and advice.

grandma

@grandma

Can't comment on Plegridy cos I'm on Tecfidare after 23 years on Avonex which was also an injection, and like the support posts you've had you need to find the right time and day to suit your lifestyle, but all I wanted to say was good luck, keep smiling, don't stress cos that will do more harm than the injections!😍

embroideress

@embroideress

Hi @ana80 My first two injections went well, the half dose and the three-quarter dose both given by a nurse because the pharmacy made a mistake and ordered syringes instead of pens. Anyway, I chose the buttocks as injection sites for the first two times. Barely felt it. As for side effects, the half dose brought drowsiness about 4 hrs after injection, a heavy sleepiness later in the eve, and I felt as if I'd taken a sleeping pill. Slept well. Had a tiny bit of headache in the morning. Then I was expecting worse for the second dose, but I got the same drowsiness about 7 hrs after injection, slept well again, and no headache, or anything else. I had a prescription for ibuprofen and paracetamol in case of fever or aches. The nurse had me take ibuprofen at the time of injection and then before bed. I know everyone is different, but I hope this helps. No one gets all the possible flu-like symptoms, so maybe you'll get only one or nothing at all! I hope you breeze through it easily! I actually felt terrified before and oddly relieved after the first needle; I feel as if I'm doing something to slow the progression of the disease, although I had been really against the idea of taking a DMT. I'll be getting my first full dose next week, using the pen finally, in the presence of the nurse. Perhaps the effects will be greater with a full dose, but at least we are able to ease ourselves into it. I wish you the best, zero side effects, and let us know how that first injection goes ;-)

AndyTurner

@AndyTurner

Hi plegridy is every two weeks. With a starter injection. I was taking that two years ago. To be honest my body rejected it.

monks

@monks

Hi all. Sorry for not keeping up on this thread. I've just taken my 8th pen yesterday. Mostly I get a dull headache about an hour afterwards followed by burning sensation over skin , sweats and cramps in muscles. I have brief hallucinations and am prone to waking up with a start as if from a nightmare. On the upside this only goes on for about a day and is mostly improved by ensuring ibuprofen and paracetamol are taken accordingly. I experienced high body temperature on injections 3 though to 6 , my MS nurse dismissed this as down to having an infection as Plegridy gives you sweats and makes you feel as if you have a fever but doesn't actually raise body ttemperature, I have registered 39.4c and it felt awful. I have also been prescribed baclofen for muscle cramps and as you can't use with ibuprofen. In the Three occasions I had temperature issues I had been using baclofen for muscle pain rather than ibuprofen. I would be keen to know if anybody else has had their temperature soaring and what they think is causing it. It only happens at Plegridy day or just after. Sorry I do go on a bit and I don't mean to be negative as its side affects are brief, I just find I dread Plegridy day at the moment, hopefully body will adjust.....soon please.

ircricket

@ircricket

Hi. I've been taking Plegridy for almost two years now. Before that I did Rebif, Betaferon and Extavia for another 11 years, and after my inumerous complaints to my neurologists that I had no more places to inject myself (my injection sites are lipoatrophied, my arms are disfigured and my belly still has the injection marks from two years ago) he suggested Plegridy, as it is a every 2 week injection, giving the skin/muscles time to heal. I have to say that even though it does have side effects that I find are more noticeable than with Rebif/Extavia (more on that later), this was a real life changer for the best for me. I had always hated the injections, I still do, but after 11 years of every other day injections the stress and anxiety of it was really the worse part. Now, I get to do my injections on the first try, I don't even think about before pressing the that injector on my skin. Before, with Extavia, it could take me about two hours to finally push the trigger, in stressful days I cried and got very anxious and emotional. And went to bed super late as I was trying to delay it the most I could - stupid, I know, especially when I had been taking the injections for so long. So now for the worse part, the side effects. I do my injections on friday night as to have the whole weekend to recover, and I do need it. I take ibuprofen with the injection and usually go to bed after. The next day I do ibuprofen again, and if needed also paracetamol. I tend to have some fever the next day in the afternoon, but now that I started to take the ibuprofen in a more scheduled fashion I don't think I have it anymore. If I do forget to take the ibuprofen/paracetamol I will have a some muscle pain, fatigue, it hurts just getting from a sitting to a standing position, but it goes almost totally away with ibuprofen. I did have some high fevers on some nights (around 39), and I notice that if I have had a rough week or day I just know the side effects will be worse. With Rebif and others I had stopped having side effects of this kind for many years, or hadn't noticed them as much, so I rarely took any ibuprofen/paracetamol. I know some people get worse side effects, but for me, this was the best improvement I had in my life since I was diagnosed and started DMD. It is amazing to go 2 weeks without an injection. I've been wanting to change to pills since ever, but since I am now considering pregnancy my neurologist advised against it. My first post and really long! Sorry about that :)

embroideress

@embroideress

@andyturner sorry Plegridy didn't work for you. Injecting every two weeks is not too stressful. @monks @ircricket Thanks for the updates. I've just injected my third full dose an hour ago. The first was really hard, with foot going numb an hour after injection, flu-like symptoms beginning 5-6 hrs after injection, mild fever, dizziness, lethargy, muffled hearing (and thinking!) headache, loss of appetite and troubled sleep. The second was much better, with the foot numbness, and fatigue, insomnia the first night (Friday), but I stuck to taking ibuprofene and paracetamol every four hours for 36 hrs and felt much better. Not run-a-marathon better, but I was up and about. I do find that the every two week schedule is not too stressful, you get a respite from constantly thinking about it, dreading it. I try to rest and not do strenuous activities on 'injection weekend', and I do a little something for myself on 'injection day'. Pedicure, eating something I like, having a quiet, calm afternoon if possible, drinking lots of ice water. @monks My fever hasn't gone above 38.4, so only mild. Sorry you dread your injection day. Do something nice for yourself that day. @ircricket I can see how frequent injections would be extremely stressful. that's why I chose Plegridy too. I wish you the best with your pregancy plans!

monks

@monks

Hi all, @ircricket, your experience with injections every other day is my biggest fear of changing treatment and I can easily understand why you are happier on Plegridy. I saw my MS nurse on Tuesday and expressed how difficult the side effects were for me. she explained about other options, but as they they're all three times a week I decided to persevere with Plegridy for now. I botched an injection on Monday and sliced my arm getting little or nothing in. so after talking to nurse retried on Tues evening successfully. Same side effects as normal. Probably going to just except it. Best wishes to you all.