DMD ball rolling

Not sure why I’m posting really guess I just wanted to talk, so to speak. It’s been a strange old roller coaster…and compared to some quite a lucky one so to speak. Since seeing my GP in march when I lost all co-ordination in my right arm, spasms etc I was sent for two urgent mri’s followed by one appointment, in June, to see a neuro to be told I have ms. With a number of lesions on my brain and one (I think) on my spine. It all happened a bit quick really, thorough neuro assessment…but quick dx. I was all set to see ms nurse in the summer to chat through things but due to illness this was put back to October. So I was really surprised to get a call this week asking if I had decided which DMD’S I had decided on. So yay, I have at last committed to rebif and set ball rolling, hopefully, to get funding. I guess I am just hoping to hear from other rebif users for positive feedback. It just feels like a major decision and a bit of a lonely one. I know drugs effect everyone differently, so there is no way of knowing how it will effect me. Just looking for a bit of reassurance I guess. At least I have made my mind up…at last. I am usually the type that comes home with a basket of cakes because I can’t make my mind up! If you can’t help with the rebif maybe you could recommend a good cake! Lol Thanks. Mish x

Hi Mish

I think you have hit the nail on the head describing life with ms as like being on a roller coaster! I think it takes a good year, or more, to get your head around having ms and also absorbing all the information when you have to make such important decisions.

I think my main advice with Rebif is to inject just before bed to hopefully avoid the worst of any potential fluey effects. You might be ok though; everyone’s experiences are different. It’s just how you deal with those experiences and knowing ways to get around them. Take paracetamol too just before bed if you do find you have fluey symptoms. Rotate injection sites too. I found the automatic thingy more painful. Ice packs are handy too, to numb the injection site. Once I overcame the injecting myself thing it was a doddle and I didn’t end up with massive bruises. Again my experiences, and everyone’s different. Just gives you options that all…

As you can probably gather I ‘used’ to take Rebif, but had to switch to Tysabri, as for me it didn’t work. I’ve had one very minor relapse in four and a bit years, yay!


Hi Tigger Thanks for your reply. Yes fingers crossed fluey effects aren’t so bad. I will get me in a stash of paracetamol ready! It will probably be a few weeks before it all happens, it just seemed like such a lonely old process. One of my friends nickname for me is Tiggy…bouncy, bouncy, fun, fun, fun…and all that : ) Thank you Mish x

You never have to be lonely,you can always come on here.


Hi Mish

I’ve been on rebif for 7 years now. I have done well on it.

I didn’t get the flu side effects. I started using the rebiject device but then got fed up of ‘setting it up’ so now i manually inject. The rebiject has changed to rebismart now though.

At the beginning i was slow and hesitant to inject myself but now it takes me a matter of seconds to do. It’s part of my routine. I still get the odd bruise/red marks though but they don’t cause me any problems.

I have not had any relapses on rebif. I have not got any mobility problems but i do sometimes get break through symptoms. I am however having a bit of a ‘blip’ at the moment as i have some kind of viral infection that i can’t get rid of.

Rebif is working for me! I hope it works as well for you

Best wishes


Hi Mish,

I’ve been on Rebif for 12 years and I didn’t have the flu-like side effects. I have enormous red splotches at the injection sites and these slowly turn into bruises. I don’t mind, as it’s worth it to stop the dreadful relapses.

The Rebismart machine is so easy to use. I couldn’t manage the Rebiject (horrible) and used to inject manually. Where I live, in Northwest Spain, everyone has to use the Rebismart. I moaned about this at before, but after the first injection was really happy with it. You don’t even need to see the needle.

It takes about 6 months to really work, but it cut my relapse rate from every 6 to 8 weeks, to once every 3 years (on average). There is a test to see who will benefit from beta-interferon, but I suspect that it’s too expensive for the NHS. You’ll just have to try it and see.

I prefer to inject in the morning, as I find that I forget to take it otherwise.

The best places (for me) are my stomach, hips and underside of my arms. It doesn’t hurt, unless the needle hits a nerve ending and then it stings.

If Rebif doesn’t work as it is supposed to (to slow/stop the relapse rate) then you may be eligible for Tysabri. A lot of people on here are doing very well on Tysabri.

best wishes,



Hi Mish,

I have been on Rebif since March and had the same feelings as you do now before I started. I think a lot of it has to do with your attitude. If you deal with it positively and just accept it as an essential part of your life, it doesn’t become an issue. I use a Rebismart and find it really easy. I inject at about 7pm and take a couple of Ibuprofen (found these to be more successful than paracetamol) at the same time. I did try to go without a month ago, but got the flu symptoms still. I do get red bruises, and occasionally a blue bruise if I hit a vessel, but they don’t hurt. I also got headaches when I first started but don’t get these anymore. I have not had any motor relapses since being on it, however I do still get some sensory symptoms. It takes a while before it is fully effective though.

Good luck. I am sure you will be fine. There is a lot of support that you can access out there, including the really well informed people on this forum.


PS. I don’t think anything can beat a really scrummy jammy doughnut!

I started on Rebif last July. I’ve been a bit unlucky in that I still get some side effects now and they were pretty horrendous in the first 5-6 months (to the extent that I nearly quit a couple of times). I couldn’t inject in the evening because Rebif gave me insomnia in the first few months and even now I can’t because the side effects wake me up. So I inject in the morning and take paracetamol with the injection and then four and eight hours later: no insomnia and negligible side effects :slight_smile:

On the plus side, the Rebismart is excellent and the injections are easy. More importantly, it’s working! I had one very minor relapse within a few months of starting it, but since then, nothing :slight_smile:

Couple of tips: don’t be scared to alter the settings on the Rebismart (I’ve had a lot less bruising since I changed mine to faster and longer injections) and a lot of people on here say that ibuprofen is better than paracetamol for the side effects (I can’t take ibuprofen, which might have contributed to me struggling more with the side effects).

I hope it works really well for you :slight_smile:

Karen x

Thank you all for replying : ) Pip Thank you it is a great place to come, I have been quite upbeat about it all, just every now and then I get low. It is good to chat to others in the same boat. : ) Treek Hope your ‘blip’ soon passes. These ‘bugs’ can knock you for six. I have just got a really mild cold but by the afternoon it feels like I am coming down with flu. Got to go to Cornwall tomorrow to look at a university with my son - think a six hour snooze on way down might be called for! : ) K Thank you for your reply. I was wondering how long it would take for it to become effective, so to speak. Sounds like it has worked well for you - fingers crossed x : ) Boo I think now I have made my mind up, at last, I can hopefully relax into it a bit more. Might have to search out that scummy jammy donut though…for medicinal reasons of course! : ) Karen Thank you for your advice. I don’t always sleep very well already, so I will keep a check on that when I start and see if that effects me. Maybe an early evening injection so the worst of it has, hopefully, passed by bedtime. You never know, i could be one of the lucky few who escape it…if not maybe more medicinal cake might be called for to make up for feeling poorly : ) Thanks all