This is my first post on here. I’m 29, and was diagnosed with having MS last November… It was right before I went on holiday, and I was told via letter that my most recent MRI showed evidence of nerve inflamation… After lots of ringing round I eventually spoke to my neurologist who told me I had developed MS (something which I’d already guessed from the thater obscure letter!)… I went away and came back at the start of January to an invite to speak to the neurologist, nurse, and to have a lumbar puncture…
Now I’m left with a decision to make about my course of treatment… It’s all been really quick and is taking time to sink in… My nurse (who is just lovely I’m pleased to say) has offered me two options… Avonex and Rebif… I have no idea where to start… i’ve done some research online, but it’s a decision I don’t feel like I can make. I’m wondering if anyone has any advice…
I’m a pretty active person, and like to travel a lot, oftern spurr of the moment type stuff, but reading the blurb about these two options I’m going to have to start to really plan ahead and it’s all a bit daunting…
Hi, I will come clean and admit I’m not on meds myself. However, Avonex and Rebif are pretty much the same stuff, so it’s all a question of how often you want to inject, and whether you can face doing it into a muscle. It’s no coincidence that Avonex (the intra-muscular one) is only once a week, because delivering it that way makes it lasts longer. But the reason they give you free choice is they’re all much of a muchness in terms of effectiveness. It’s really down to what you feel best about. I think there’s some evidence Rebif may be very slightly more effective, but the difference is not significant enough to worry about, if everything else was making you lean towards Avonex. The other thing is that you CAN change, if you don’t get on with whichever one you choose. You won’t be forced to stay on it for life, if it isn’t working out. Tina x
Hi, I’m currently on Copaxone. Is there a reason you haven’t been offered this? I think it has the least side effects, although you do need to inject daily.\
Hi Tassie, I’m on Rebif. Yes it is daunting to start of with as its not very natural to inject yourself. It does however become second nature. The Rebismart injection device guides you through the process. The rebif, sharps (very little needles) and sharps box are delivered to my local pharmacy by BUPA every 3 months. I am lucky and not suffering any regular side effects. Occasionally I do,feel a bit out of sorts. I do get the odd red injection site mark. Travelling is no bother except I need to be slightly more organised. Hope this helps and good luck Min xx
Tina, thanks… I guess I’m just so daunted by it all I kinda forgot I could change if it wasn’t working out…
Daisy, I think (from reading NHS choices), Rebif and Avonex are both interferon beta 1a drugs which makes them more appropriate if you’ve had more than 2 episodes in the past year (which I have)… I think (again from wiki and nhs choices), copaxone works as a decoy, i.e. it pretends to be myelin… So, the way I had it described to me by the nurse was there are different ways to treat MS… There’s the “decoy way”, where the bad cells attack fake/decoy cells (which I think is yours)… and there’s the “changing the job description way”, where bad cells are changed back to being good… and then I think there’s the “stopping the bad cells getting out” way… I’m a little sketch on this as I’ve only had the one meeting and we covered a LOT!!! I’ll ask again and re-post!!!
Thanks Min… Its good that you’re not getting many side effects… How long have you been doing it for? The Rebismart device did look rather nifty, and it’s good (I guess) that you can change the speed of it…
Still gona be a tough decision though, but thanks for the help
Hi T, im 26 and was diagnosed with RRMS last monday. I have never been given my results via letter this has always been face to face with my neurologist it would terrify me reading a letter and not being able to ask questions. Luckily for it all started 7 months ago when i had what i now know was my first relapse, i was in hospital for a week on iv steriods (awful things) my symptoms subsided which was brilliant still have http niggles but my MRI in december showed a new lesion. To get to the point i had sometime to look through treatment options and find what injection would be best for me if i got the dreaded diagnosis. I have choosen avonex but i was given the option of all injections it just so happened i had done alot of research before going so we didnt have to go through what did what. Like yourself I’m young and work full time, i find the once a week injection will be best for me, i choose the avonex pen as they have 3 different ways of injecting avonex! Also my uncle has MS and he started on avonex a year ago and he had said it has worked brilliant for him with minimal side effects. The reason avonex side effects may last longet if you have any is because it’s just a once a week dose rather than everyone so your body just takes a littlr longer to get used to. I got given a booklet and a dvd for avonex maybe you could ask your ms nurse for this also. Whatever choice you make it will be the best for you as everyone is different! I go to he hospital on 13th feb for my first injection. Let us know how you get on x
Thanks Sarah!! I’ve been given the Rebif and Avonex packs and DVD’s to help me make the choice… I’ve read through them and still came up blank, hance the post!! My options are the Avonex pen and the RebiSmart…
Think I’m leaning towards Rebif at the moment, but like Tina said, I can always change if it doesn’t fit with me… I’ll let you know what I decide!! Good luck with your first one though!!
I’ve got another question… Does anyone know how much it’s going to cost? I have to pay for prescriptions, but this is something I’ve never been told by the nurse or specialist… I’m under the NHS so I’m not really sure what to expect…
Hi T, I myself was worried about the cost as I also pay for prescriptions. My MS nurse has advised and assured me the DMD’s are completely free and mine will be delivered every 4 weeks by BUPA. She did say however that i will get my first 4 weeks supply from the hospital pharmacy so they may charge me the normal prescription fee of £7.50! xx
