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Newly Diagnosed & can't decide on which drug :(

Hi guys & gals

Unfortunately I was diagnosed last month with MS & after having a month to take it in I have been given a choice of 4 treatments of which I can’t decide which one to go for.

The MS nurse has been very helpful and after spending countless hours on the internet still at a loss on which would be the best for me.

The nurse has given me the following choices:

Avonex
Interferon
Rebif
Copaxone

I have to say that this forum has been a geat help throughout the last few months. I would really apprecate it if you guys could advise on whether one treatment is better than another? I know the qustions is probably near impossible to answer, however would value any opinions or experiences people have had with any of them.

Thanks again for looking.

Hi look_up,

Tuff choice isn’t it. I think I changed my mind half a dozen times before eventually deciding on Rebif.

It was the fab little RebiSmart machine that decided it for me in the end. It was the least needle like looking of the lot and that did it for me in the end, even though I’m not particularly needle phobic.

There’s a great site (MS Decisions) that takes you through all the different choices and helps you to narrow down your choice depending on your life style and preferences.

I’m still early on in my Rebif treatment, still haven’t got up to full dose yet, but so far I haven’t had too many side effects. The only thing I have really noticed is feeling a bit off the first day and the day after I increased dosage.

Good luck with your decision.

http://www.mstrust.org.uk/research/updates/articles/update130612.jsp#item01

This link was posted by another forum user on the everyday living board a few days ago. Shows the results of a review done to test the effectivness of DMD’s. Hope it helps. Like Shuffler said the msdecisions website is very useful. Please make sure to think about how each of these drugs would fit into your life and decide what will be best for you.

Good luck.

My neuro picked Copaxone for me, as apparently it has the least affect on fatigue. :slight_smile:

My specialist picked Avonex for me last week which is probably the one I was going to go for anyway as the injections are only once a week.

Hi

Sorry to hear about your diagnosis. I hope you’re coming to terms with it - it took me a very long time and having to choose a drug I’d ‘like’ to self-inject didn’t help at all ;-). My first thought was that I didn’t want any of this to be happening at all but hey ho!

I’m coming up to my fourth anniversary of using Rebif. I chose it before the Rebismart was available and switched to the Rebismart auto injector when my nurse realised that my dexterity issues were affecting my use of the previous injector.

I used the msdecisions website as well as a pack that was provided by the hospital. The nurse at the hospital also demonstrated all the syringes and the auto injectors for the different drugs.

In the end I chose the drug based on the frequency of injection, size of the needle and side effects. I did have mild flu type side effects with Rebif for the first few weeks but these were easily controlled by taking ibuprofen and paracetomol at the time of injection and every 4 hours afterwards for about half a day. The side effects died down just as I went up to the full dose.

I had one sensory relapse shortly after starting after Rebif which didn’t concern me too much as it takes a while to build up in your system. Then I had about 3.5 years in remission before a relapse earlier this year. This relapse was much milder than the disabling one which led to diagnosis so I believe that Rebif is working; reducing the frequency and severity of my relapses.

Whatever you decide, it’s not set in stone and if it doesn’t work for you or if you cannot tolerate the side effects it should be easy enough to switch.

Good luck

Tracey x

Thanks so much for the replies guys The info posted has helped a lot. Im now down to Copaxone or Rebif after spending days just comparing the 4.

Hi, I’ve been on rebif now for about nine weeks (I think). The rebi smart is an ace gadget. I have surprised myself with how well I have done as I am a needle phobic I.e a fainter! But its so easy with that gadget. That’s why I chose rebif. I have had practically no side effects, lil headache and nausea but nothing and I’ve not taken painkillers for the last couple of weeks either maybe more. The one thing I get is site marks, and I’ve drawn blood…I won’t lie I think it hurts, hurts more now than it did initially which is weird but its not long and if I’m trying to fight this thing I can cope with that. My rebif has made me feel proactive with the m.s. good luck in choosing xxx

I am in the exact same boat - my Nuro suggested as I currently take ldn I can only have copaxzone with this or I can stop ldn and choose any of the other 3. Ms nurse has suggested I come off the ldn for 2 wks to see if I think it’s doing any good so it will either be copaxzone or rebif. The only things is copaxzone can reduce relapses by a third but the other can reduce relapses and slow the disease progression ! Oh help I haven’t got a clue

It is not an easy decision to make, i did so much research i couldn’t see the woods for the trees sos to speak! Sometimes i think you have to ignore the mounds of data, listen to your instincts and do what you think is right at the time, while remebering that you can change if any side effects are un-manageable. Best of luck to you all :slight_smile:

Will be choosing the rebismart myself. Correct me if I’m wrong but the 3 times a week injection would work better than one a week. Are these drugs not stronger? I have a strange feeling my ms nurse told me that. Then again with a goldfish brain can’t remember. :wink: