Cedelle 07/06/12
Last reply 5 years ago
Switching Meds

I just read a story on the BBC website whereby someone swapped daily injectios, maybe Copaxone, (which i have been on for the last 2 years) to a monthly infusion, (not sure which meds this man swapped too) but he said it was brilliant!! and he benefited hugely from it! Has anyone else had any good results from swapping meds? I am considering it myself as i dont beleive i am getting the best from Copaxone anymore. Thanks xx

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aardvark
5 years ago

@Cedelle we need a link to the story 🙂


stumbler
5 years ago

A monthly infusion suggests Tysabri to me? Couldn’t find the BBC story though.


Becks
5 years ago

sounds like tysabri to me too – just started it myself – 5th infusion next week – been talking on separate post re: steroids (i think it was) which turned into a discussion about switching DMDs which may be worth reading – consensus was if the current treatment is working for you, you may want to think long and hard before switching, as you may be having hidden results with your current treatment in respect of your long term condition that you may not realise but the best people to discuss this with is your MS nurse/consultant who know you, your symptoms and recent medical history/progression of ms symptoms 🙂


Cedelle
5 years ago

When I have access to my laptop I will place the link on here, its not that I have bad reactions I’m just worried I’m becoming a bit immune to the copaxone injections, I am just entering into my 2nd relapse I think, and that’s 2 in 11 months out of 5 years!


DJDsouza
5 years ago

Cedelle
5 years ago

aardvark
5 years ago

That was a great article wasn’t it? I think that quite a few people on here will have already seen it – as it was how they discovered shift.ms – it was certainly the reason why I’ve ended up here 🙂


CaptainKristoff
5 years ago

Hey Cedelle, the only monthly infusion I’m aware of is what people have mentioned on here which is Tysabri. I think you need to have 2 relapses in 12 months to qualify for it. It’s what I’m on as I was due to take part in a trial for a successor to Avonex but I started having relapse after relapse and went straight to Tysabri. It’s the only treatment I’ve had for my MS but I feel great on it and a monthly hour long infusion is no big deal. There are, however, some serious potential side effects to consider, so if it is something you’re looking to change to then you’ll need a good chat with your neuro and MS nurse. Also you get tested for the JC virus, I think it’s about 65% of the population that carry it (though you hear different stats quoted wherever you look!), it sits harmlessly in people kept in check by their immune system, issues could potentially occur on Ty though as it’s supppresses ur immune system.
Just something to look into and consider carefully if you are going to change to it.


Cedelle
5 years ago

Thank you for that, i have just returned from an apt with my MS nuse and she told me i dont qualify for Tysabri, however she has prescribed me Baclofen or something for the pain and stiffness. Have you had any dealings with this at all? x


CaptainKristoff
5 years ago

I’ve just had a look in my box of all the meds I’ve been given over the past 12 months and baclofen wasn’t one of them, sorry. Undoubtedly someone else will chip in who has had it though! This site’s good like that!
Not qualifying for Tysabri is probably a good sign tbh, it’s the “last line of defence” really so things need to be quite serious to warrant it, so I’d take it as a positive.
Do you keep a diary of your symptoms? I write mine down as things change (for better or worse) so when I speak with my neuro I can give as complete a picture of my circumstance as pos, if you don’t keep one, then that may be something to consider so they can get a better idea of how well your treatment is working.

I hope the Baclofen helps anyway.

Kris


Cedelle
5 years ago

thank you, at the moment no i dont keep a diary, but maybe i should. Im going to have a read back through the posts to see if i can find something regarding Bac, thanks for your help x


gpeps
5 years ago

Hi Cedelle. I think I’m the man your referring to! I was on copaxone for five or so years. It seemed to be doing the job well and as Becks points out in an earlier reply, if your treatment is working, then probably good to stick with it.

Last year I had a couple of nasty relapses in quick succession and my neuro decided it was an appropriate time to change to tysabri. I’ve been on it a year now and so far so good.

It seems we all react differently to different treatments. I hope the copaxone continues to do the job and the Baclofen helps. Its always worth asking your neuro when you see them if they think you’re on the best available treatment.

Good luck!

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