Needing to decide between copaxone and t... - My MSAA Community

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Needing to decide between copaxone and tecfidera

Vally37 profile image
19 Replies

Hi everyone! I have to decide between copaxone and tecfidera. I’m Jc positive at 3.19. Does anyone know if this is too high and puts me at worse risk for PML if I go on tecfidera? Does anyone have experience being JC positive and on tecfidera? Thank you!

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Vally37 profile image
Vally37
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19 Replies
Kenu profile image
Kenu

I was on Copaxone twenty years ago and after eight years it quit working 😐. Have been on seven different DMT’s thru the years as they stopped working and new ones come out 👍. Don’t miss the shots. Tried Tecfidera and had too many side effects and switched after three months to Aubagio for the last fifteen months and no side effects 👍 also my last two MRI’s were stable and no relapses 🙏. Sure like taking a pill and no shots or infusion 👍🙏🐾 Ken

Vally37 profile image
Vally37 in reply to Kenu

Thanks so much! Wishing continued success to you on your current treatment! 🙏🏻🤗

greaterexp profile image
greaterexp

This shows user reviews for some DMTs, but keep in mind that these are patients describing their experiences and NOT medical information:

drugs.com/condition/multipl...

This gives a side by side comparison of the most common DMTs:

nationalmssociety.org/Natio...

I know it's difficult to choose a DMT, even with our doctor's input. Let us know what you decide and how it works for you.

Vally37 profile image
Vally37 in reply to greaterexp

Thank u so much for this! I really appreciate it and will keep you posted!

greaterexp profile image
greaterexp

Emily kindly gave us a link to MSAA's chart, which I just posted in a separate link. I wish you well with your decision process.

Amore55 profile image
Amore55

I am jc positive too. I used Copaxone for two years, then tysabri for six years until my jc numbers went very high. Tried Tecfidera, but did not like it at all. Developed new lesions and symptoms rapidly declined to the point that I often use a wheelchair, need help getting dressed, all fun stuff I never thought would be a part of my life. Good luck on your journey, it can be difficult to decide.

Vally37 profile image
Vally37 in reply to Amore55

Thank u for ur help! I hope you are able to find something that works for u!

hairbrain4 profile image
hairbrain4

I am not jc positive but I was on Copaxone for 5 years then changed to Tecfidera for two years. During the two years with Tecfidera I had more relapses than the Copaxone. I went back to Copaxone 40 mg -3x a week. My relapses have stopped. I hate the shots, they hurt more at one time but still better than everyday & better than having relapses. With Tecfidera I also had to have my blood drawn every month to check for jc. Not worth it to me to not have as good of results with a pill then having to endure a little pain 3x's a week with much better results. So far one year with no relapses.

Vally37 profile image
Vally37 in reply to hairbrain4

Thank u for this! I am happy the copaxone is working for you! I have just comes from an MS walk and heard about Aubagio. According to the drug rep it’s same mechanism as copaxone and no risk of the PML brain infection. Only down side is you can’t have kids while on it and it stays in system for 2 years. Did you hear about this pill?

Kenu profile image
Kenu in reply to Vally37

I have been on Aubagio for fifteen months and doing great 👍 My last two MRI’s were stable and no relapses 😁. I also have had no side effects either 🙏🐾 Ken

Vally37 profile image
Vally37 in reply to Kenu

I am so happy it is working for you! Thank u for this! I will definitely look into this medication also. Is it true that PML is not an issue with Aubagio?

Kenu profile image
Kenu in reply to Vally37

Yes, from what I know 👍. Good luck with your decision 🤞 I really enjoy not doing shots or infusion 😉🐾Ken

oklaguy profile image
oklaguy

I had no side effects while taking C, and still take it. T has too many.

Sukie427 profile image
Sukie427

I am also JC+ and have been on Tec since approved by FDA. The risk of PML is supposed to be very low with it and this is a conversation I've had with my dr on quite a few occasions because I am very paranoid about PML. They do watch for it on my MRIs and so far no evidence. I don't know if Copaxone carries a risk of PML but I was on it and it didn't help at all. In fact, I used to hate taking it because it felt as if I were injecting fire ants under my skin and II used to cry every night when I went up to get the injections. The dr finally took me off of it and I waited 8 months for Tecfidera to be approved by the FDA. The decision as to what you should do is between you and your dr and make sure that you're honest about your concerns, especially those regarding PML. Good luck.

Vally37 profile image
Vally37 in reply to Sukie427

Thank you so much! I appreciate your help! :)

janetb1968 profile image
janetb1968

Hi Vally37 I'm also JCV positive at 0.65 I'm on Tysabri only had 4 infusions so far and I was diagnosed with very active RRMS in December last year. Hope it all goes well for u xxxx 😊😊😊😊😊

Vally37 profile image
Vally37 in reply to janetb1968

Hi! I’m sorry you’re is very active, but I hope the tysabri works for u!

janetb1968 profile image
janetb1968

Thanks hun let's hope but I'm ok plodding on and have work meetings to look forward to lol xxxx

RoyceNewton profile image
RoyceNewton

Tecfidera, the tablet is very easy. Copaxone is as well, I just do not like needles.

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