@Phillip

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Phillip

Rebif v Betaferon

Hi, I was diagnosed with MS just over 2 weeks ago. I was given the option of 6 treatments. I then narrowed it down to three: 1) rebif, 2) tecfidera and 3) betaferon. I just ruled out tecfidera because of the link to PML. From your own experience would you recommend rebif or betaferon? They both seem similar. I found information saying that betaferon actually imoroves the immune system while rebif weakens it. This could be wrong, but if it isn't I think betaferon would be a better choice as the drugs seem very similar and I would rather not get sick as much.

Pudding11

@Pudding11

Hi @phillip. sorry I replied about my friends experiences with these two on the other forum before I realised this one was here! Just re the information about betaferon improving the immune system and rebif weakening it, I hadnt heard this myself but just asked my MS nurse whether it was actually the case so Ill let you know what she comes back with!

Phillip

@Phillip

@pudding11 thank you :) That would be great. I probably picked it up wrong. Can't remember where I read it now

NaomiOx

@NaomiOx

Hi Phillip, I was on betaferon for 7 years and it really helped me and have just changed to Tecfidera 2 months ago. Taking tablets after 7 years of injections is so much better as I found the injections very difficult. PML is very rare I understand and I found the positives largely outweighed the negatives. Tec is supposed to be much more effective (according to my consultant) and reduces relapses by 50% (approx) as opposed to 30% (approx) on betaferon. However, betaferon is great also. I found it very helpful not to have to store it in a fridge. My relapses did reduce a lot in severity, duration and occurrence but everyone is different. This is just my own personal opinion :) I read and heard a lot about tec and side effects which originally put me off but I have had nothing major at all. Flushing appears to be the main side effect which in itself is very manageable so I wouldn't totally rule out Tec if I were you. I would hate to go back to injections now. But as I say, this is just my opinion and the choice is entirely yours and what suits you personally. Wish you all the best as you decide :)

Phillip

@Phillip

Thanks @Naomi. Great to hear you didn't get any of the bad side effects. My head is wrecked researching all the different treatments. I think only 2 people developed PML. Maybe it was just a coincidence and they would have developed PML anyway, regardless of tecfidera. So hard to decide

Pudding11

@Pudding11

It could be the case @phillip but if/when the MS nurse replies about that I'll let you know! In one way it's great there are so many options but in another it is head wrecking to decide between them. I really wish Tecfidera hasn't made me so sick as I would prefer tablets any day but it can't be helped. Go with your gut in the end and whatever you are the most comfortable with. At least if one doesn't work out for any reason you know there are others to choose from.

NaomiOx

@NaomiOx

Yes, it really is minimal in comparison to the amount of people taking it. Do what suits you and your lifestyle and go with your gut as mentioned above :) Sorry to hear Tec hasn't agreed with you pudding11 (sorry, I don't know how to tag you lol)

Pudding11

@Pudding11

You just need an @ before the name @naomi :-) yeah it sucks alright but at least I tried it as if I had just gone straight to injections as my neuro wanted I would have always been pushing for Tecfidera. Another tablet is bound to come along again and hopefully it will suit me then!

NaomiOx

@NaomiOx

ah brilliant, thank you @pudding11 yea at least you've given it a go. hopefully so!

Phillip

@Phillip

Thanks guys :) I think I'm going to try tecfidera now haha.

NaomiOx

@NaomiOx

that's great! I hope it agrees with you and that all goes well :)

insomniacoffeelover

@insomniacoffeelover

Hi Philip, sorry i'm jumping between your posts here. that's good that you're going to try tecfidera :) i only heard of 1 person with PML but it's important not to confuse correlation with causation :) and remember, tecfidera slows MS down by upto FITY percent! that was the deciding factor for me really as rebif/betaferon are only 30%. best of luck with what you decide :)

Traceyluv

@Traceyluv

I have a choice of Rebif, Tecfidera, and Aubagio. Think I am going to try Rebif as Tecfidera can affect your stomach. Always have a sensitive stomach. Anyone any advise ??? It's a hard process to decide on what to take. They the other people say go with your gut. Mine say stay away from tablets ;-)

Pudding11

@Pudding11

Hi @tracyluv Its a hard process alright but you need to be happy with your decision. If your gut is telling you that then it sounds like you wouldnt be happy taking tablets. I went for them as I thought it would be easier even though I do have a sensitive stomach but wasnt expecting them to have such a bad effect. For some people it can be uncomfortable but it wears off. The tecfidera support line said alot of people report issues initially but over the counter remedies helped them. Not for me though! Everyone is diffferent at the end of the day, thats what makes it so much harder as no two people will have exactly the same reaction! My friends currently on rebif for years still get on very well and only had the flu like symptoms and headaches sometimes but nothing stomach wise and all manageable. Hoping Ill be the same if thats the one I go for! Best of Luck!

Pudding11

@Pudding11

Hope you are getting on well everyone! I started Rebif last week and so far so good. No side effects as yet except for feeling warmer than I normally would! Definitely alot easier than the tecfidera anyway and the device has been really easy to use! My dose moves up from the initial one next week so fingers crossed it continues to go well!

Margarita

@Margarita

I found it useful to make a table/spreadsheet for comparison. I included how long each drug had been in use, delivery method/frequency, the way it works, percentage effects on relapse/atrophy/progression, and then the common and less common side effects I was most concerned about. Helped to see it all on one page and then choose according to my priorities.