Hi all I went to my specialist yesterday and was finally diagnosed after 6 yrs. the specialist wants to start me on Betaferon jabs. I was wondering what you guys think which one is best, the under skin or into the muscle? Thanks, Emma x
I was diagnosed in May after 8 years of problems - I don’t know about the Betaferon jabs though. Just wanted to say that I hope you’re ok xxx
I was Dix in may. Like Ellie I don’t know about jabs, I have been told its serios so I am going straight onto tysabri. I hope you take it in your stride and you are ok Mike x
Thank you for your kind words guys xx
Hi Emma
MS Decisions website is helpful in making a decision on which dmd to choose.
I am on rebif myself but you need to do research as to which will suit you the best (we are all different).
6 years is a long time to be in limbo - you must have mixed emotions at the moment. ((hugs))
Good luck and best wishes
Teresa.x
Hi Emma
The ms decisions is definitely the best place to start. Have a look at the info on each one and go from there. Take your lifestyle into consideration as well as possible side effects, how each med needs to be stored and the frequency of the jabs.
I started on befateron - paracetamol can help in staving off the flu type side effects - but remember that we’re all different, so any potential side effects may never affect you!
Whichever one you opt for make sure you’re well informed on it before making the final decision. You should also be trained on how to inject and there is the option of using an autoinjector which pretty much takes the work out if it.
You’ve waited 6 years for a dx but the news is still a lot to get your head round so take each day as it comes and make sure that the decision on the dmd’s is your choice.
Good luck
Debbie xx
Hi, so glad you finally got your diagnosis. Others will help re betaferons…not applicable to me.
Im still on the dx merry go round.....only it hasn
t been that merry.
Seen 13 neros in as many years and still in limbo. Ive had 3 possibles so far. I
m sure it is PPMS meself.
Hope you get the rights meds to help you.
luv Pollx
Hi Emma, and welcome
As the others have said, the msdecisions site is the best place for info on disease modifying drugs (DMDs).
I started on Copaxone and had 3.5 years virtually relapse free. A nasty relapse led to me switching to Rebif last year and I’ve been relapse free now for 8 months
As far as subcutaneous or into muscle goes - it really depends on what you prefer. I saw the needle for Axonex and wimped out straightaway! Apparently it doesn’t actually hurt though because there are no pain sensors further into our bodies (not that I was willing to try! me = wimp!).
The most effective of the injectable DMDs overall is the higher dose of Rebif (Rebif44) according to recent research, but they all reduce relapses, reduce the severity of those that still occur, reduce disability and lengthen life span. Plus it’s nice to think we’re fighting back!
Remember that there is no “right” choice - go with whatever you think will suit you best. If, for some reason, it doesn’t work or doesn’t suit you, you can always switch.
Karen x
Thanks for your help guys. I had a look at the MS decisions website and I found it very helpful. Rizzo; I dont think I’ll be opting for the “into the muscle jab” either! Lol x Ms43; I hope you get some answers soon x Rachael A; Yeah this is a great site, it’s nice to chat to ppl that understand exactly what you’re going through. 6 years was a long time to wait but I got there in the end, not what I was hoping for but I’m glad to know what’s what. X Rubina; Thank you for your advice, the website is very helpful x Treek; Thank you for your kind words x
Emma,
no-one on these boards likes to sway anyone to one particular dmd as one person may do really well and another may get awful side effects.
What works for one person - does not work for another.
Remember that if the one you choose does not suit then you can change to another.
I have been on rebif 44 for over 6 years and have not relapsed on it at all but i do have some ms symptoms.
Most people who have found one that suits do not have experience of the others so will be biased towards the one they are taking. I am biased towards rebif as i have done so well and in recent trials it has come out the best. Others on here will say the opposite as they may have had side effects and couldn’t tollerate the drug.
Its a really difficult decision to make but as long as you have educated yourself about all of them - you can do no more as you have no idea how they will suit you till you try.
best wishes and good luck
Teresa. x