Question about meds: I have been on... - My MSAA Community

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Question about meds

Takersgals profile image
11 Replies

I have been on aubagio for a couple of yrs and like taking it but they found 1 new lesion after a VERY stressful holiday season. My dr wants me to switch to one of the meds that has the pml assoc with it and Im jc positive and refuse to take any of them. Already got off avonex cant take shots..so thinking of quiting meds if she wont let me stay on aubagio...any thoughts would be appreciated 😊

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Takersgals profile image
Takersgals
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11 Replies
ssdw1958 profile image
ssdw1958

Have you thought of Ocervius just saying why not look into it.

Takersgals profile image
Takersgals in reply to ssdw1958

No i havent

Takersgals profile image
Takersgals

Only one lesion no relapse but she still wants me to switch...im either staying on aubagio or nothing..not going near pml stuff...couldnt stand thought of it all the time...

tnolan2006 profile image
tnolan2006 in reply to Takersgals

If you're still getting brain damage while on Aubagio, you should switch. Two meds would meet your needs, I think. Rituxan has much more of a safety record than ocrevus, otherwise very similar. Cladribine is the other one. I've taken both. They're both high efficacy, safe, convenient and very tolerable. PML isn't a problem with these drugs, they both allow immune system monitoring of the brain to prevent it.

Rituxan and cladribine are both currently available in the US for different indications than MS, so getting these drugs here is possible, but isn't very easy. I got my cladribine off-label with a bit of persistence, and the rituxan as part of a clinical trial. An oral version of cladribine is approved for MS in other countries like Canada and in Europe. US registration may happen this year.

You'll need good meds, not just for now, but for yourself 20 years in the future. For various reasons, my favorite is cladribine.

Kenu profile image
Kenu

I have been on Aubagio for the past fifteen months and doing well. MRI stable and no relapses. I don’t know, but I would think that staying on it would be better than nothing 🤷🏼‍♂️. It has been so nice no shots or infusion 😁. I just received some grant money or I would be going with out 🙏. Good luck and I hope it works out 👍🙏🐾 Ken

Takersgals profile image
Takersgals in reply to Kenu

I want to stay on it..dr wants me to change...cant afford it if she takes me off

mrsmike9 profile image
mrsmike9

I am also on Aubagio. It's the only one I've been able to tolerate and have no bad reactions to! Can you have a discussion with your doctor and explain why you want to stay on it and have an actual conversation? Perhaps that would help both of you get your explainations across so you both understand each other.

CloverPrincess profile image
CloverPrincess

Ocrevus has little to no side effects and is very effective for me. I think Ocrevus might work well if you’re JC positive.

Please don’t quit meds they control the lesions. Feel better! :)

Edit: thanks terry oops 😅

MS_Indestructible profile image
MS_Indestructible in reply to CloverPrincess

If you are jcv positive you want to stay away from Tysabri, but Ocrevus would be the best option in my opinion. ~terry

CloverPrincess profile image
CloverPrincess in reply to MS_Indestructible

Wow I forgot because I was scared when the doctor was talking to me that day 🤣🤣

MS_Indestructible profile image
MS_Indestructible in reply to CloverPrincess

glad we got that cleared up :) lol

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