I’ve just been diagnosed and because I have had two ‘episodes’ in the last 6-8 months my neurologist feels I should go onto interferon. I had avoided them up this point (I was lucky and got offered when I was still at CIS stage) but decided to wait and see. Anyway, I have finally come round to the idea of having the interferon as I want to do everything I can but I am really confused as to which one I should take. I have read the studies on both Avonex and Rebif and my confusion lies in’ Rebif works better because it gives a better steady state becuase the injections are thrice weekly, equally the side effect profile is higher and the relapse rate only marginally better than Avonex.
The reason I am deliberating is because I am terrified of needles(despite two children, requiring an induction of labour and cannulas etc ) so Avonex once a weekly seems a good option for that reason adn that I have to be fairl active for my kids and my job. But if I have finally come round to taking interferon I want to take the one that is most effective. I know that each person is different and the medication will work differently, but its really hard to decide (I have been on the ms decisions website). So any experience with either would be helpful when deciding.
From friends on it I’m told Avonex though once a week injection is injected directly into the thigh muscle which hurts like hell and you can still get the flu like symptoms.
Rebif I inject on top of thigh and my lovely love handles, it does not hurt anywhere and the Rebismart gadget they give you is easy enough to use.
I don’t get any flu symptoms now but when I first started I was stiff and achey with a mild headache, after several months them symptoms faded and now I don’t bother taking any ibuprofen.
Avonex and Rebif are both interferon 1a I won’t say what its derived from as it might put you off if you like cute furry animals
They both work the same way you just have to decide if you can handle bigger does in one day or 3 little doses over the week.
Hiya, I like you am needle phobic and I stressed over what drug to choosr. I went on a dmd infirmation day where you get told about all the injectable drugs,their side effects and you get to play with them and the ways they are injected before you choose. Now, copaxone was out the question being daily so it was between rebif and avonex. Believe me, avonex was instantly dismissed as soon as I saw how much bigger and thicker the needle was to rebif and where it had to be injected into! Can you go on a day like this to help you decide? Anyway rebif was my choice and I chose the rebismart way of getting the injection. I didn’t fancy manually injecting or using the “pen” devices where you press a button and the needle “fires” into you. This seemed to look more painful and the anticipation of that “click” woud stress me out. The rebismart is great and gentle. You don’t see the needle ( you xan you tube ut to see it in action). At first I would stress over it and my husband would have to use it on me. I now do it myself and don’t stress! I don’t worry that it’s a needle anymore! It’s easy and i’m sure you will be fine. I have been on it for 2 months at 22mcg and have no side effects whatsoever! I don’t ice anywhere before or after or take any ibuprofen before each jab either. I hope this helps hun. I work full time at a school too and have a ten and thirteen year old. Good luck. Dawn x
Please don’t worry! I chose rebif for the Rebi smart as well as being the injectable with the best success rate with preventing progression. It took me 15 minutes to press the button first time and injection nurse told me after she was worried I would pass out as I had gone white! You don’t even feel it!! I promise! I have suffered with side effects but after 6 months they are much more under control with regular paracetamol and ibuprofen. I won’t lie the side effects nearly finished me off but I persevered because it was still better than relapsing. In fact this week i have asked to stay on it because my white blood cells are being affected but i dont want to give up on it because i love my little machine. I too have 2 young children and work in a school so no time for relapses. Good luck in your choice. C xx
Hi I started rebif nearly four weeks ago … I go up too 44 next week. Side effects so far have been minimal, slight headache and a bit of nausea. I keep getting bruising but I can cope with that, its not like I want to show my body off anymore. Having a child changes that. I have 3 year old too and honestly things have been fine. Now I was a needle phobic to the point id faint but the rebi smart is so easy and I now sit up whilst I inject and I did my own from the start as my feeling was if its part of my life I have to be in control of it. I use the ice pack to numb the area and have found the marks to be slightly less. Don’t get me wrong I hate doing it but then ina way I like doing it if its going to help beat this thing. Good luck xxxxx Oh p.s I didn’t go for avonex as I felt oncea week would give me time to fret about the next jab. For me I felt it needed to be more regular to be part of my life and not a big deal if that makes sense. Xxx
Hi, I am at exactly the same point as you! I have just had a relapse that really made me fully comprehend how serious MS can be. I have been doing loads of reading on the various drugs and the new oral ones on the horizon. I have even put it all into a spread sheet!! because there is so much information, and have worked through the decisions website. For me it comes down to which is most effective at reducing disability long term. I think that is the most important factor and considering the chance of a serious side effect. As far as I can see the interferons don’t have a lot of evidence of slowing disability progression. So am looking at what other drugs may be available/eligible for, or failing that having whichever interferon is best at reducing severity and frequency of relapses. Will send my spreadsheet if you think that may help? Bea x
Rebismart all the way!!! I’ve been using it since mid April this year and although I still get red injection site marks I’ve not had any major side effects. Using the cold pack a couple of minutes before to freeze the area I’ll be injecting helps loads too. It’s so easy!!!
I think you have to pick the one that is going to fit into your lifestyle the best. For me, as I’m working full time, that was Avonex. There’s no way I could work full time and have side effects three times a week. I’ve been using Avonex for a year next month and injecting into my thigh muscle honestly isn’t that bad. Sometimes it stings a little but mostly I hardly feel a thing. The thought is far worse than the reality! Once a week, for 10 seconds and that’s it for another week. It’s just part of my routine now. I’m lucky enough to be allowed to work from home the next morning which helps loads. I normally feel ‘human’ again by about 10.00am
But the choice has to be yours and we can all advise but it has to suit you. Personally, I think that even a small chance of reducing disease progression is worth the hassle of having to inject once a week. I would hate to suffer a major relapse and look back wishing I had used a DMD.
Another vote for the RebiSmart. It is so easy to use and unless you go looking for it you don’t even see the needle. The whole process takes me only a few minutes from getting the machine out of the cupboard to putting it back again.
I’ve not found it to be very painful at all. Sometimes I’ve barely felt it and other times it has stung slightly.
The very first 8.8mcg dose made me a feel a bit queasy, but then I was ok until the first 22mcg dose. That one made me a bit achy and the following day I felt under the weather and lethargic. Again this was just the first dose at 22mcg and I’ve been ok after the others. I haven’t gone up to the 44 dose yet so not sure how that will pan out.
I was totally confused by all the different choices, but watched the DVD’s that came with the information booklets and which showed the different injection methods and on seeing the RebiSmart gadget my decision was suddenly simple!
Hi - I’ve been on Avonx for 6 years and chose it because I travel a lot and only wanted to inject once a week. I don’t find it paticularly painful in any way injecting into my thighs (alternating each week) and the side effects of lus like symptoms are limited to once a week (if ever, very rare for me these days) and are completely manageable with 2 panadol.
Thank you all so very much for all your input. Patient choice is not great in this case I as I wish someone would just tell me which to go on! Bea, the spreadsheet would be helpful my husband is analysing the evidence as right now I can’t get my head round it, I’m normally good with stats and science literature! I suppose, for me if I need to weigh up side effects vs efficacy and if the impact on the overall quality of life, if the meds have me whacked then is it worth taking rebif over avonex (I will have to deal with the injections whatever)??? As if having this diagnosis is not hard enough I/we have to decide and then hope it is the right decision! Sorry rambling had a tough day at work, kept breaking down and crying…which is not me at all! Thanks again. X
I think it’s having a relapse, getting head round diagnosis, working, facing reality of diagnosis, and deciding which drug to take (when none of us wants to have to take a drug at all). All at the same time!! I too am usually the most positive person but have had several days when felt very tearful At least there are drugs out there that can help. I will send spreadsheet. X
Hi I’m on avonex have been since last September and was really scared of side effects and injecting myself!..but I’m really lucky no side effects and get my husband to do it!..honestly it just becomes part of your routine after a while just take ibuprofen and paracetamol together every 4 hours and I’m sure you’ll bd fine!..I didn’t have to make the decision on what to use as where I go neurologist puts most patients on it as it is the easiest one to fig into your life as once a week and ms nurse says they all basically do the same job…I was started on them after a cis but actually think I had optic neuritis 3 years previous to that but didn’t go to docs as it cleared up after about 6 weeks!..and it does sting a little but not too bad!.. Only advice I would give is if you do go for avonex when doing the jab try not to push it into your leg too hard as the button is a bit stiff as if left me with a painful swelling but when we figured out what caused it its not a problem now!..good luck Emma x
i have been on,both rebif twice new and old type. Avonex was a bigger needle and did hurt a bit more. Rebif once in inector pen is so quick . Side effects are the pain. You can always try if you dont get on with it ask to change .It seems a long time ago that Ihad these babies in my life. Good luck
i have been on,both rebif twice new and old type. Avonex was a bigger needle and did hurt a bit more. Rebif once in inector pen is so quick . Side effects are the pain. You can always try if you dont get on with it ask to change .It seems a long time ago that Ihad these babies in my life. Good luck
i have been on,both rebif twice new and old type. Avonex was a bigger needle and did hurt a bit more. Rebif once in inector pen is so quick . Side effects are the pain. You can always try if you dont get on with it ask to change .It seems a long time ago that Ihad these babies in my life. Good luck