I started Rebif on Christmas Eve, and have been careful to follow the instructions and being super careful to rotate injection sites.
I am finding it really difficult as I have been SO itchy, I am struggling. Most of the injection sites are big and red (the MS Nurse has seen them and says its normal in the 1st 3 months), and unbelievably itchy. Its so itchy I want to scratch my own skin off, seriously, I cant cope. Antihistamine makes no difference, and I can only take that at night as they make me even drowsier than I already am (and I have young kids and drive, so I have to be careful)
Reading this back, I havent explained how bad this is, I cant find the words. To give you an example, I almost drove myself to A&E the other night as I couldnt sleep and was clawing at my skin which made it itchier and was worried I would break my skin.
Has anyone else found this problem? How should I treat it? Would you think about changing drugs? (I dont want to as I have put up with feeling fluey for the last 3 months as I get used to it, but will as a last resort), would calomine lotion help? (cant believe it would, but am desperate). Any thoughts?
Sorry you’re having a hard time of it - that sounds horrible! When I was on Rebif I never had any problems with injection sites, but I know if it were me I’d seriously consider swapping to something else. I’d also ask your MS nurse if there are any drugs that could help with the itching - I don’t know if things like Amitriptylene could help numb the feeling.
Sorry I can’t help more. I hope you get relief soon though.
Thanks Dan. When I saw the ms nurse last about 2 weeks ago, I could cope with the itching but did tell her about it and she said giving me pills to counteract the rebif could be a neverending thing, more scripts to help with older scripts iykwim.
I am going to try and get an appt with the GP this am, although I am not hopeful he can help, there is always a lot of flicking through big texts books when I go in as he isnt failiar with ms or the relevant drugs
Hi there I’ve been on rebiff for about 5 years and I’m not holding no punches the injection sites are horrible. They itch they burn they look awfull and they never go away. Yes one site will settle then a old one will flare up. It’s a viscous roundabout. They can be one so painfull that you want to scratch your skin right of… Don’t!! I know it is so hard but please try not to claw at them I take anti histamines tablets which does settle the itch and be sure to apply lots of moisturiser to all your sites often. Try pressing a cool pack to the site straight after injecting. And again when they burn, keep them nails away! I hope this helps. Anna xx
Anna, thanks so much, thats interesting that you have trouble too. I just went to the GP and got stronger antihistamines and she said maybe I should stop taking rebif, which I will talk to the ms nurse about in a couple of weeks when I see her.
I am resisting scratching most of the time but sometimes it drives me mad, like last night (its ok this morning) So I am in constant state of being excrutiatingly itchy but not allowing myself to scratch, its a bit of a nightmare. Hopefully these new tablets will help. And I will use a cold compress after injecting, thanks, I had forgotten about that idea, and I will moisturize too as I havent been. In fact I try not to touch the sites for fear I will set off an itchy episode.
Thanks for your candid reply, its exactly what I needed to read
When I was on rebif I did get some itching at the start and took an antihistimine which helped. I was also told that aloe vera cream might help. The itching did subside but I came off rebif after 9 months as I couldn’t tolerate the awful headaches I got whilst on it. I am now on copaxone which suits me better. The injection sites are not as red as when on rebif but they do itch occasionally-especially if I get hot. I always use an icepack straight after injecting which does help.
I used to get some itchiness with Rebif injection sites (I’ve had to switch to Gilenya since November) but used to pinch my son’s psoriasis moisturisers for it. He has big tubs of Zerobase cream which is just a very soothing moisturisers for really dry, inflamed skin. My thighs and stomach were the worst so I would rub the cream into them but not on the day I was using that site. I think you can buy Aqueous cream which is similar at the chemists or ask your GP to prescribe one of the eczema type creams. Hope this helps Tracey x
I also get itchiness (started Rebif in August), but not to that extreme! I use bio oil on the injection site and it does help a bit. Everything is slowly getting easier now, and I’m hoping it will continue to do so. On the plus side my MS nurse has said she will switch me to one of the new oral drugs when they’re out. I think the one I would like will be available in December if it’s approved by NICE (which she’s 99% sure it will!).