Brabio

[Catherine]

Hello,

I hope all is well with you all and the new year is treating you kindly so far. Do any of you take Brabio? After three years of taking Tecfidera, I'm about to start taking Brabio instead. I will have injections three times a week and can't say I am looking forward to it. I was taking Avonex before Tecfidera, and had hoped that was the end of injecting for me but sadly here I am again. Any advice would be greatly appreciated.

Thank you,

Catherine

[Stumbler]

@Catherine  , Brabio is the generic version of Copaxone, one of the initial Disease Modifying Therapies ( DMTs). So it's been around for 30 years.

 

Going from Tecfidera to Brabio is a bit of a retrospect move in terms of efficacy. There are now many DMDs, so there may be a better, more effective choice available to you. Have a read through this document for details of these choices :-

 

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf

 

The following website will also help you choose :-

 

 

MS Decisions aid | MS Trust

WWW.MSTRUST.ORG.UK

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Filter, compare and select treatments for relapsing MS

 

 

[Catherine]

Unfortunately I can no longer take other oral DMT's as I have a low lymphocyte count and problems with my liver. The intravenous therapies are something that may be considered in the future, depending on how things go on Brabio. I am doing fairly well so far, twenty years after my first MS episode - so fingers crossed. I wondered if anyone had personal experience of taking Brabio as the list of possible side-effects don't sound too great. But then none of them do really.

Catherine

[Stumbler]

@Catherine , well, Copaxone was always considered best for side-effects, so I'm sure Brabio will be similar.

 

Injection site reactions seem to be the worst problem, but this can be mitigated by discipline rotation of injection sites. The following Copaxone instructions/advice might be useful :-
 

COPAXONE® Injection Instructions & Tips

WWW.COPAXONE.COM

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Recommended depth settings, timing, storage and disposal tips.

 

 

[Catherine]

Thanks for this but the drug companies are always going to try and show their drug in a good light. I was hoping someone who takes Brabio might be able to share some first-hand experience and tips. I have found a group on Facebook so hopefully I can find answers there. Thank you again.

Catherine

[Stumbler]

@Catherine , undoubtedly, there are more effective treatments available now, but each treatment has its pros and cons and Brabio is therefore worthy of consideration.

 

I always get concerned when "cheaper" options are offered on a "let's wait and see if you get worse" basis. We don't want to get worse, we just want the best treatment to keep our MS under control.

 

 

[Catherine]

I agree about the cheaper options being offered. I didn't go through with Brabio in the end. The nurse didn't fill me with confidence, it's a complicated process with too many things that could go wrong. What with the side-effects, which are more scary that I had originally thought, I decided to not to inject at the last minute. I'm not sure what my options are now, if any. I will speak to my neuro and see what he suggests.

 

I feel liken I am back to square one 

[Stumbler]

@Catherine , you need to understand that you have MS, so the decision regarding Disease Modifying Treatments ( DMTs) is like crossing a road.

 

Crossing with your eyes open, you can see the risks coming. Or, you can cross with your eyes closed and hope for the best. That's how it is with deciding on a DMT. You either accept that there may be risks that you can see coming or accept the unpredictable risk of a disabling progression of untreated MS?

 

The bottom line is that it is your body. So do you want to adopt a low efficacy DMT, one with higher efficacy or keep your eyes closed and hope. It's what suits you. Unfortunately, Neuros don't always know best so do your research and let the Neuro know which one you want and why.

 

[Catherine]

Thank you. I had such a fight to get Tecfidera, it's depressing to think I might have another fight on my hands. But there you go, nobody ever said managing this disease was going to be easy.

[Stumbler]

@Catherine , we have to do our homework, then we can make a reasoned request. If we don't ask, we don't get!

 

Anyway, whoever said that life is supposed to be easy!