Well after much toing and froing between the hospital pharmacy and Healthcare at Home over my prescription, I’m finally getting my Rebif on Thursday. The My Support nurse is coming out to train me on Friday. Do you think he’ll want me to do my first injection whilst he’s here? I had been thinking of Sunday, Tuesday and Thursdays to give me a clear weekend. Is it better to do the first while he’s here or would it be ok to start on Sunday? I suppose I could do it on Friday and then start my new timings from Sunday as it’ll be 48 hours from first dose.
Dunno for sure, but in my case, when I started on Rebif, my MS Nurse ordered it and told me to make an appointment when it was delivered to my house, to teach me how to inject… I wouldn’t have been too keen doing the first one with nobody there to check that I was doing it right! More or less routine now… I inject on Mondays, Wednesdays and Fridays. Have tried doing it in the mornings of Tuesday, Thurs and Saturday instead, but I prefer to do it in the evenings when I can take my own sweet time over it, not when I’m rushing around trying to get ready for work!
Thanks, I’m planning on doing mine in the evenings to hopefully sleep through the worst of the side effects if poss. I’d thought Sunday, Tuesday and Thursday so that I’d be ok on Saturday and Sunday. From what I’ve read though Monday, Wednesday and Friday seems the popular choice. Any tips for side effects?
Lots of painkillers to avoid killer headaches after the jab! And take them before you start getting a headache… I tried cutting down on the painkillers when I thought the injections were going OK - but I won’t be doing that again in a hurry! A couple as you go to bed, and have a couple (or four) more already unwrapped and on the bedside table, with a glass of water, for if you wake up in the night with it - you can just slug them down without waking up too much!
Thanks. How do you feel the following day?
Hi, I been on Rebif for nearly 11 years without any problems. Started on 22 but slowly titrated up to 44. Inject Sunday, Tuesday and Thursday. At the beginning I took paracetamol to help with any side effects. Feel one of the lucky ones, no side effects and feel it has keep me stable. Used auto injection in beginning but know just inject and go in the morning, rotating the injection site. I remember the MS nurses helped me with my first injection, been sole ever since. Good luck.
Mel xx
Pretty normal, sometimes a tad headachey but nothing too extreme - and nothing that a couple of painkillers won’t sort!
Thanks both. Think I’m titrating from 8.8 for 2 weeks, then 22 for 2 weeks and then 44. Can’t say I’m looking forward to it especially given side effects. However, I am grateful to be offered them in the first place.
hi I have just started a v o n e x .my m s nurse went through it all first then she let me practise on a foam block .then I injected my self I only do it once a week so I did my next one at
home last night it was quite easy even with my snarky stiff hands.good luck
Thanks Rosie, the nurse who is visiting on Friday is from a company called My Support rather than my MS nurse. I didn’t ask whether I’ll be doing my first injection then but it makes sense. I’ve waited a while to get started but am very nervous especially given that my symptoms don’t really trouble me during the day.
How have you been on avonex? My plan is to switch to avonex if my site reactions are bad or to copaxone if the flu side effects are.
Rebif and rebismart arrived yesterday. Does anyone know who supplies the shoulder bag and trave bag/ice packs? It was delivered by Healthcare at Home but My Support are sending a nurse to train me. Also, do I need injection swabs?
Well I’ve done my first injection with the Rebismart whilst the nurse was here earlier. So far so good - bit stingy going in to the side of my right thigh. The nurse suggested not taking paracetamol/ibuprofen until I see if I need it or not. I’ve got a mild headache now and aching neck and shoulders but not enough that I’d take painkillers for. I know it’s early days though as only day one of the titration dose.
Do I need to keep the rebismart in the fridge? I’m sure that’s what the nurse said but can’t really remember. Info says cartridges need to be stored in the fridge and rebismart now has cartridge in so guess it does need to be stored in fridge.
Hi Smurf
If I were you with a slight headache now, I’d take the painkillers. Get rid of a headache before it really takes hold.
I don’t know about keeping rebif refrigerated. Sorry.
Well done for starting. Hope you’re well overnight and tomorrow.
Sue
Thanks Sue, to be honest the actual injection was easier than I thought. Like most new things,you build it up in your mind. I’m guessing that the side effects will get worse when the dose increases.
Thanks for the tip re painkillers. I’ll also leave some beside my bed just in case.
Subcutaneous injections are much easier than you build them up to in your head. So I’m glad you found it easier than you’d thought. Keep well.
Sue
From my erratic memory, you keep the whole Rebismart in the fridge while you’re on the titration up to full dose - after that it doesn’t matter so much, as you will be going through the whole cartridge in a week - on the titration dose you wouldn’t be doing that. You just have to remember to take it out and give it a chance to get to room temp before injecting - cold from the fridge isn’t great!
That makes sense why it needs to be in the fridge now then. Think he said first cartridge would last 3 weeks and 2nd one just a week. Then I’ll be on a cartridge a week. Thanks for tip about removing from fridge before using though. It was a bit stingy today so maybe that’s why.
hi I take 2p/killers 30mins before my Injection that way it keeps my temp down.I’m on patches
as well so double dose there.only thing was in morning was a sore head it felt like a wee dose of flu.lasted for couple of hours then I kept up p/killers first day after then was ok.
as for ice bag bio gen. Supplied me with it.only problem I had was needle got stuck a bit in my thigh muscle when I tried to take it out.think they had put too much t n t in the syringe.
hope all goes well…Rosie
Thanks Rosie, didn’t sleep that well. Just a bit of a headache and stiff neck this morning though so better than I thought. Guessing full side effects won’t kick in whilst on small dose.
Getting travel bag from Healthcare at Home but they said it doesn’t come with ice packs. I’ll see what arrives as the nurse from MySupport said it should come with gel packs. If it doesn’t, they can probably supply them
Sorry but another query. How do you keep the rebismart upright when travelling? The nurse said that it had to be upright to stop any of the drug from the cartridge going into the machine. He’s calling on Monday so I’ll add it to my list of questions.
I’m going to start with Sunday Tuesday Thursday but he said it was ok to change days as long as you left at least 48 hours between doses.
Are you finding the side effects manageable now Rosie?