HELPFUL INSIGHT WANTED

[greeneye0808]

Hello. I am about to begin my exit strategy of my Tysabri infusions after 2+ years. Unfortunately, my JCV has been reactivated and I am not about to continue on it, and amp up my chances of PML. So, my neuro and I are discussing different options at the moment. Has anyone taken Aubagio or Mavenclad? If so, could you please share your insights on these medications. I am a nervous wreck at this point and any information would be greatly appreciated. Thank you.

[Kenu]

I went on Aubiago after having to quit Tysabri and did really well 👍🏼🙏😉

[greeneye0808 in reply to Kenu]

Thank you so much for your response. Would you be willing to discuss if you had any side effects, allergic reactions or hair loss? The more I read up on it...the more freaked out it can make someone, which is why I'd love to hear personal experiences. Thank you

[Kenu in reply to greeneye0808]

The only side effects from Tysabri was fatigue the next day so I had it done on Friday afternoon so I could make it to work Monday. Had no side effects at all from Aubiago 👍🏼 Aubiago I stayed same on MRI’s and no new lesions or changes. I have heard some women had minor hair loss but it returned within a couple months. I did enjoy not having any needles 💉 was nice 😊. If I hadn’t had ♋️ cancer I would have stayed on Tysabri, but everyone is different on the same DMT. Aubiago was really easy to adjust to one pill a day. I started on 7mg for ten days and then went to 14 mg a day. Didn’t have the 2days fatigue like Tysabri. You probably need to find out what your insurance covers and what you’re co-pay will be? Then touch base with MSAA about grant’s for co-pays. MSAA was a big help for me and my research 🧐 about different DMT’s 👍🏼 Good luck and feel free to ask any questions 😉🙏🤞🏼

[mrsmike9 in reply to Kenu]

Aubagio has a place that'll pay for it for you until your insurance kicks in. I've never paid a penny for mine.

[greeneye0808]

Thank you so much for sharing with me your DMT information. I am sorry to hear that you are fighting cancer, as well. May you continue to do well on Aubagio. Happy to hear that it's a good match for you. Unfortunately, my appointment with neuro yesterday didn't have the results I was hoping for. Aubagio has been taken off the table due to a show of progression on mri. It would seem that my DMT choices are dwindling the longer I have this disease. Yes, those grants are a blessing when available. Be well and take care of yourself. I truly appreciate you for responding.

[mrsmike9]

I have been on Aubagio for years after the first two meds made me react badly to them. I have had NO bad effects and it's (knock wood) kept me stable. (Not mentally but nothing will do that! 😃)

[greeneye0808 in reply to mrsmike9]

Thank you for sharing your experience with Aubagio. Unfortunately, my neuro just informed me yesterday, that with being on a high efficacy therapy, and just learning of recent breakthrough progression, going on Aubagio would not assist, and could quite possibly set me back. Uggh...I am beginning to need something for my mental status too. 😜. Right there with ya.

[greeneye0808 in reply to greeneye0808]

Btw...I wish you continued success on your DMT. Stay well.

[i4design]

I recently finished my second year of Mavenclad treatments. I had no side effects such as hair loss or a rash. I also have not had any relapses. I understand that Mavenclad is the treatment of choice in Europe. Prior to Mavenclad, I used Copaxone injections for several years. I have a question for my doctor when I see her at my next appointment, which is what follow up treatment I may need.

[greeneye0808 in reply to i4design]

That's absolutely wonderful. I am happy to hear that it's working so well for you. According to my neuro, he informed me yesterday that after being on Mavenclad for 2 years...it continues to work for 4 in our systems. Normally nothing should be needed after Mavenclad as far as a DMT. He also mentioned that studies show once finished with Mavenclad due to it being a med that severely lowers our immune system...high efficacy meds like Tysabri or Ocrevus will higher our chances of developing PML from like 1 in 1000 to like 1 in 100. It's all such a gamble and I guess we all need to try whatever works for us individually. Thank you for sharing your experience. I greatly appreciated it. Wishing you continued success.

[i4design in reply to greeneye0808]

You are welcome and I wish you success with your treatment.

[DIsneyQueen]

I went off of Tyssbri for the same reason as you. Went on Ocrevus for 2 years but MS continued to progress so switched to Mavenclad last year. I am ready to start my 2nd year. No side effects. I am a 68 yo female diagnosed 10 1/2 years ago. Good luck and don’t let fear stop you from getting the best treatment for you.

[pamgarner]

there are so many new meds, you will find one😋