Forum

Rebif

Hi All,

It’s been over a month since choosing which DMT to go on (Rebif). The nurse did say it can take a while till it’s approved for funding ect but never stated how long it’ll actually take and I didn’t think to ask. Does anyone know what the waiting times are? I’m assuming it’s different depending on where you live but is it normal for it to take a couple of months?

Thanks!

I made my final choice of DMT (Rebif) at the beginning of May this year. It wasn’t until the beginning of July, that the medication finally arrived, and the nurse came to show me how to inject. There is quite a bit of work to do “behind the scenes”, signatures to be gained, processes and procedures to be followed etc. I wouldn’t worry unduly at this stage. If it goes on another 4 - 6 weeks, then by all means chivvy them up.

Thanks Ian, I got a phone call about it that next day lol starting Tomorrow. How have you been getting on with it? Im a bit worried about the flu like symptoms… I’m a bit of a wimp when it comes to colds ect!

Thanks

I’ve been on it since Feb and generally side effects have been manageable. You start on a low dose and titrate up over a few weeks. I take some paracetamol or ibuprofen the nights I inject and make sure I drink lots of water the same day. Seems to work for me. Hope it goes ok for you tomorrow.

1 Like

As Smurf said, the titration regime is the key. 8 mcg, 22mcg and then full to 44 after a month. I have had the side effects twice since starting May. “Flu like symptoms” is a good description. Remember it is “flu like” - it is not flu itself. I felt stiff, achy, high temperature and a headache. However, unlike flu, the symptoms do tend to go away after about an hour or so after taking paracetamol. My regime is to take 2 x paracetamol at 9-00pm. Inject at 10-15pm and be in bed at 11-00pm. If I feel a bit muzzy in the morning, then another couple of paracetamols with breakfast. In the main, it is manageable, the Rebismart makes the injection process easy. The important thing for me is the use of a cold pack. Apply it for about 3 - 4 minutes prior to injecting, and you don’t feel much of the injection. For me omitting the cold pack makes the injection sting a bit. I hope it all goes well for you. Let us know how you’re getting on. Ian.

1 Like

Great advice thank you! I’ll be stocking up on paracetamols tomorrow! Ice pack is a good idea I’ve heard it’s a bit on the stingy side. Thanks again!

In Canada and parts of Europe, it is more normal to prepare the injection site with alcohol wipes, but here in the UK we tend to go for the cold pack. The one supplied to me as part of the Rebismart kit is a 5" x 3" reusable gel which is kept in the freezer. It’s completely fit for purpose when injecting at home.

If you are travelling, and don’t have access to a freezer to keep it cold, then I have found that Koolpack single use instant ice packs (the ones used for sports injuries) to be equally effective. You can get them from Amazon, and they’re not massively expensive.