avonex or tysabri??

[allHailye2]

i don't know which med to go with...avonex or tysabri. when i mentally narrow down my choices, basically by side effects, risks, & administration, i come down to avonex.

my neuro thinks i should try tysabri, but of course pml scares me, which is why it was mentally crossed off my list. i understand that you can't get pml unless you are jcv+ & my dr said that i could get my blood tested monthly if i wanted. so that puts tysabri back on the table.

i know the decision is mine to make, but i'm hoping y'all could help me with pro/cons, stories, thoughts, whatever to help me with my decision.

ps, i've been on rebif & tecfidera in the past.

[goblue]

i don't know which med to go with...avonex or tysabri. when i mentally narrow down my choices, basically by side effects, risks, & administration, i come down to avonex.

my neuro thinks i should try tysabri, but of course pml scares me, which is why it was mentally crossed off my list. i understand that you can't get pml unless you are jcv+ & my dr said that i could get my blood tested monthly if i wanted. so that puts tysabri back on the table.

i know the decision is mine to make, but i'm hoping y'all could help me with pro/cons, stories, thoughts, whatever to help me with my decision.

ps, i've been on rebif & tecfidera in the past.

Tysabri is more for a "last resort" option, after others have failed. Currently the most effective, with the most potential side effects. There are several others in between rebif/tec to Tysabri. If it were me, I'd try others before going to "the big gun". Just my opinion. Out of curiosity, what was it about rebif/tec,
that didn't work for you?

[fairpace]

Since you've tried Rebif, I find it interesting that Avonex is a consideration since it's also an interferon (side effects would be similar, you didn't mention why Rebif failed?)

Make sure you research Tysabri, it's effective and your doctor may have good reason for recommending it (depending on your disease activity and such). Many people use it that are jcv+.... And it sounds like your doctor would monitor your blood work regularly. My understanding (I'm no expert) is that the risk for PML is lower during the first 2 years.

I wonder why Gilenya, Copaxone or Aubagio are not recommended? Certainly, they are at least equal (or better, in case of Gilenya) to the Avonex.

I have no experience with Tysabri. However, Avonex brought me depression and progression.

[Kimba22]

Hi allHailye2,

Can I also ask why you stopped taking Rebif? If it was because it wasn't helping cut back on new disease activity, I wouldn't recommend Avonex. I'm kind of surprised that was given to you as an option. They are both interferon 1a's and Rebif (44 mcg 3 x week) is actually stronger than Avonex (30 mcg week). The only reason it was approved after Avonex was on the market was because it was actually shown in clinical trials to work better than Rebif at lowering the risk of relapse, reducing active inflammation (as seen on MRI), and increasing the time to another exacerbation. If anything, the other DMT's with the same efficacy seem like they might work better because they are different than Rebif. Betsaseron is interferon 1 b, Copaxone works by targeting T cells, and Aubagio targets both the T cells and B cells.

Tysabri has the highest efficacy, followed by Tecfidera and Gilenya. My assumption is your neurologist offered you Tysabri because your MS wasn't fairing well with the other two meds? Staying ahead of accumulating new damage is important in your fight against MS. It can't be fixed afterwards. And it may take years for you to finally experience the symptoms from any new damage.

Tysabri does have a scary PML risk, but it has helped so many people with their MS. The first 2 years that risk is low. Besides being JCV+, your risks would also increase the longer you are on the drug and/ or if you ever had chemotherapy.

It sounds like your neuro is willing to do what he can to put your mind at ease and stay on top of any possible PML risk. MRIs can detect PML (even before you have symptoms). So if you were to go on Tysabri, stay on track with any MRIs he orders, and make sure to report any sudden decline so PML can be ruled in or out. The quicker it's diagnosed, the better the outcome.

Even though it requires an infusion once a month, it's also nice not to have to worry about taking it the rest of the month. I also haven't had any side effects from it (and am still JCV-). I developed some serious reactions while on Rebif and Gilenya. Overall, my progression has finally slowed down with Tysabri. Things spiraled downhill fairly quickly with all the other treatments I tried. In my case, I really wish I would've started Tysabri sooner. But, the first time it was recommended for me there was no blood test to check for the JC virus test.

If you are not ready for Tysabri, then maybe ask about Gilenya?

Good luck with your decision. I hope you'll let us know what you eventually decide.

[allHailye2]

i was actually in the avonex/rebif clinical study & rebif was chosen for me i was on rebif for 13 years. after such a long time, finding injection locations was getting harder & harder because it formed fibrous areas under my skin. that's why i switched from rebif & also why i don't want to go on another sub-q shot.

with tecfidera, which also helped me, caused my lymphocyte count to drop to 260 (not good!). i was on that for 19 months & still would be if not for my blood counts. that's how i got to the predicament i'm in now.

& like i said i don't like the possible side effects of the other 2 oral meds. (why i didn't switch off rebif sooner at the time) my neuro tends to agree with me on that one.

that's how i figure i'm down to avonex & tysabri. a reason i'm considering tysabri is because it does have a higher efficacy rate than avonex.

i just don't know!

[ru4cats]

I would like to recommend a youtube video " Maximizing brain health" by Dr. Vollmer from the RMMSC in Colorado. He describes the need to maintain brain health as the main goal of DMD's and halfway through he goes through the current DMD's and which ones are best for what purposes. I found it enlightening.

IMHO, I don't understand why someone wouldn't choose Tysabri since it has the highest efficacy of any drug currently on the market. Why would you wait to take this drug since in all likelihood, your MS will only progress more quickly on the other DMD's.

It is one stick, once a month, and is no worse than the allergy shots I took for 20 years. For me day 1 is just like day 28. Depending on your age and available brain reserves, Tysabri could, possibly, eliminate or at least mitigate, your current disabilities. I know it has kept at bay one new symptom that was just beginning just as I was taking my 1st infusion. Friday will be my 61st! Five years! I consider that success!

Good luck with your decision.

[allHailye2]

I know it has kept at bay one new symptom that was just beginning just as I was taking my 1st infusion.

can i ask what that symptom was?

thank you for the info. i liked seeing a couple of the charts on the video.

[ru4cats]

I was beginning to develop weakness in my left hand due to nerve demyelination somewhere that was just in the early stages before I was diagnosed in 2010. It was most noticeable when I was attempting to use the keyboard. The progression since 2010 has been very minimal and seems to have actually improved somewhat over time. I am convinced that beginning Ty is the reason for the very, very, slow progression. I could be blowing smoke, but that's my story and I'm sticking to it!

[allHailye2]

ru4cats is tysabri the first/only dmd you've been on?