@Cel17

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Cel17

Treatment advice/ experiences on Betaferon or Glatiramer acetate

Hi, Just wondered if anyone has thoughts or experiences, side effects, affecting of daily life of either Glatiramer acetate or Betaferon. I have been given the option of these two above or Ocrelizumab.... cannot choose!! Thanks!

Tee_Bee

@Tee_Bee

Hello, I was diagnosed August 2020 - decided to go on glatiramer acetate because I didn't want to rule out a second child and this was the only safe drug for pregnancy. However had an MRI three weeks ago after mentioning to my medical team new symptoms - and on Tues my neurologist just told me my MS is 'active' (still a bit confused by what that means) and I need to go on stronger treatment ASAP. I'm now trying to decide between Ocrevus (your other option) and cladribine... In retrospect: I am now wishing I'd have gone straight onto the stronger stuff from the off. But this is just my experience and your MS might not be as active as mine - in which case you might prefer to start on a treatment with less side-effects, like GA or the betaferon. With regards to those two specifically: I opted for GA because I read that the betaferon had a side-effect risk of depression/suicidal thoughts - and the only side-effects linked to GA were specific to injection site reactions. I'm currently on GA and it's fine - you soon get use to the regular injections! It's thought that the GA takes up to six months to build in system - just another thing to point out. Wishing you well!

Cel17

@Cel17

@tee_bee Thank you so much that’s really helpful. I’m so undecided!! I’m thinking stronger option maybe a better idea too. I just can’t bare thought of having daily/ weekly injections just to interrupt my life further! I’ve heard good things about Ocrevus too. Good luck with everything!

1

Tee_Bee

@Tee_Bee

My pleasure! Yes I know what you mean about the interruption that the injections pose... it's not that I dread mine, but they're definitely on my radar (in fact you've reminded me I've got to take my next one out of the fridge!) Plus I've sometimes found it frustrating having to chase drugs delivery (and then you've got to make sure you're in to take receipt of them every month...) And I guess they're just a constant reminder you have MS. But you can train yourself to minimise their disruption on your day-to-day life... Lots to think about anywho, but you'll definitely find a good bunch here to discuss any issues :) Good luck and keep us posted how you go!

HelenJR

@HelenJR

Hi @Cel17 I'm on Copaxone (glatiramer acetate) and largely that was due to "encouragement" from my neuro that until I decided whether I wanted to have children, I needed to stick to treatments that don't prevent pregnancy, and Copaxone is one of the few. I'm keen to move on to Ocrevus, it seems to be the fav these days, and after injecting for 18 months, I've had quite enough of sticking myself with a needle. Having said that, it is a very low hassle treatment with side effects limited to injection site reactions, so it's worth considering as a temporary home if needed before committing to Ocrevus.

MayClaire

@MayClaire

Hi, I was offered a choice between those two also 15 months ago. I chose Avonex because it's only once a week and I thought it wouldn't interfere with my life as much. Unfortunately for me, I made a mistake because it made me very tired for a few days after having it. I had to take paracetamol to deal with the 'flu like side-effects and it made me very depressed. I lasted for about 4 months. I have now had glatiramer (as Brabio) for 7 months and I feel so much better - no obvious side effects. Although it's 3 X a week I don't find doing the injections painful at all. Except I don't use my thighs - for some reason it is painful there!

Cel17

@Cel17

Thank you all, very helpful. Much appreciated!

Stumbler

@Stumbler

@Cel17 , it's no contest as it's not really comparing like with like! Ocrevus is the most efficacious treatment. Additionally six monthly infusions versus regular injections............

AndreaG

@AndreaG

@Cel17 I started on Avonex, don't like needles but it was all that was offered. Same reaction as stated, used to "dip" after injection, struggled to function but was OK the day after. I was offered a place on a clinical trial, that has now finished, and I'm now on Gileyna (fingolimod, once a day tablet). Remember, you are allowed to change your mind. It will be a case of trial and error until you find something that suits you.