Tysabri for Inactive MS?

[Special Kay]

I'm switching off of Avonex after 5 years because of side effects, and my neuro is supportive of me switching to Copaxone but also wants me to consider Tysabri.

Her thinking is: why not use the strongest drug you can tolerate at the earliest stage of the disease? She acknowledges there is more risk with Tysabri, but also much more potential benefit than Copaxone. I am JCV negative.

(FYI, she recommends against Gilenya for a variety of general reasons and also because, as a runner, I already have an extremely low resting heart rate and BP.)

As to my MS: I have only had one flare, in 2006, took a year to be diagnosed, and have been on Avonex since 2007. My MRIs have been stable that whole time with no flares at all and no new lesions.

Does anyone have experience taking Tysabri at such an early/quiet presentation of MS? My initial thought is that it would be more risk than I need, but I want to gather as much info as I can.

[techie]

Just Me

But I wouldn't take any drug that is as dangerous as T
techie

[jbell2435]

My neuro is at the Mayo Clinic, Scottsdale, AZ and when he 1st brought up the dmd's, he gave me 4 choices to choose from, Avonex, Rebif, Gilenya, and Copaxone.

I asked him about Ty (I didn't know anything about it, just the name) and he said "that is usually for the more agressive MS". I only had one minor flare in December at the time.

I am now on Copaxone and had a major flare in Mar/April but he said it was too soon to say it wasn't working for me.

Just some feedback...I've read other posts about other neuro's wanting to fight it agressively right away, but IMHO I wouldn't want the risks when I was fairly stable and would try everything else first.

[palmtree]

When I first got diagnosed, I read about all the different DMDs. All of them said that MS progression is slowed by 30% except Tysabri, which was 75%. I wanted to STOP my MS in its tracks ASAP. I decided I wanted Ty. Why setle for 30% when you can have 75%? Then I read that it was only for patients who cannot tolerate or are not helped by other DMDs. My neuro suggested Copaxone but the skin rashes didn't appeal to me so I choose Avonex.

Well, 3 months later I end up on Ty because of a rapid downward spiral that I never recovered from. I wrote the FDA and told them I wanted to and could have avoided the disability that I have now if I had been able to get TY to begin with. [2 years on Ty and no new plaques]. I've noticed that people are being offered it as an option from the beginning now. Did the FDA pay attention to my letter?

PML is always a consideration but anyone who has seen what MS does...when you are looking at 70% possibility of disability from MS with very small odds for PML, for me, there was no decision. To answer your question, I wish I did. JBELL, any relation to JEBELE?

[Scooter24]

Not aware of anything in writing saying who can and cannot take ty, just recomendations. I went on TY after Avonex and copaxone per my request not the drs. I believe I have progressive rather than RR ms as I do not remember ever having a flair in the 35yrs I have had sx. I feel something is better than nothing. Would you stop putting oil in your car engine if the mechanice said it is getting worn and not sure how long it will last or would you do whatever you can to keep it going as long as possible?

[ru4cats]

I'll have my 28th infusion on Friday, have never had a flair (to my knowledge, and like Scooter, believe I am SPMS), and Ty has been my only DMD. When Ty was reintroduced to the market in 2006, I believe it was restricted due to the PML risk. However, after several years, and seeing the upside potential to Ty, more and more neuro's chose it as the DMD of choice. For most, the risk of PML in the 1st 24 months is extremely low. I am JC negative, and I have no plans on leaving Ty for any reason. My only sx is right leg weakness and walking difficulties, due to spinal lesions causing nerve damage in my core. Ty has been very good to me, and I am glad I made the decision I did. I recommend a YouTube search for "Wellness and Multiple Sclerosis", 3 parts. Dr. Vollmer of the RMMSC really explains all the current and future DMD's, and he recommends Ty if JC- and BG12 (when it comes out) for JC+.

[jbell2435]

JBELL, any relation to JEBELE?

No relation!

[BigA]

Kay,

you bring up an interesting question. Is there any benefit to starting aggressively?

I think we all feel tempted. I was always interested in Campath, which seemed to come the closest to stopping the disease.

But have you had much progression in 5 years? Is there any reason to believe you're stopping something terrible?

Tysabri does seem to get to the heart of the disease. I'm interested in what you decide. Be sure to ask your Dr. about the possible rebound effect of Tysabri. It's an important consideration.

[Special Kay]

Thanks to all of you for your responses.

To answer your question BigA, I have not have any disease progression to speak of in 5 years. I have some weakening in muscle strength but it corresponds to existing spinal cord damage.

If I decide to take Tysabri, it would be a risk and definitely a long hedge against the chance of future disability. They now are starting to believe that Tysabri has the best effect when taken early, in fact it seems to be most effective in those who are "therapy naive" -- that is have not taken other immunumodulators at all.

Now that there is an antibody test for JCV, neurologists are starting to look at Tysabri as a first-line treatment and not simply a "last resort" treatment. The efficacy profile relative to the CRAB drugs really is no comparison.

The questions remain: if I take Tysabri now for a few years (and then switch when/if my PML risk goes higher or due to other side effects) will it still have a positive impact on my longterm outcome? If so, how much of an impact? Surely I'd be better off than just spending the next two years on one of the CRAB drugs.

But, yes, the rebound effect is an important consideration. It seems to be lowest in folks with very low disease activity prior to Tysabri use (i.e., me).

Anyway, the research continues...

Please continue to post on this subject!

[Special Kay]

I just (selfishly) wanted to bump this thread in case anyone has any additional experiences to share.

Thanks!

[msmoonlite]

Not selfish at all!! I would love to read more opinions on the questions you asked.

[Myoak]

According to Biogen data as of July, 2012…

JCV antibody negative equals < 1 in 11,000 chance of PML.
1 in 3 patients free of disease activity (Havrdova E et al. Lancet Neurol 2009;8(3):254-60).

11,000 x 33% = 3,630 chances in 11,000 of being free of disease activity if JCV- and on Tysabri.

All depends on how you view risk. Some will conclude if they are not on Tysabri and opt for something less effective they are choosing to take the very big risk of not being free of disease activity.

Love to see the percentage of patients on the 4 crab drugs that are classified as free of disease activity. I’m sure it would be a helpful stat for comparison purposes.

PML is absolutely horrible, I can understand wanting to eliminate that risk entirely, but…

Let’s say I have 11,000 cards in 5 separate card decks, representing Tysabri and the 4 CRAB drugs. I get to choose one of the 5 decks and one card out of that deck.

In the Tysabri deck of 11,000 cards, one is a death (or near death) card, 3630 cards are free of MS disease activity, and all the remaining cards carry a significantly greater health probability than any of the 44,000 cards in the CRAB drug decks, but…

I consider Tysabri too risky??????????!!!!!!!!!!!!

If we judge risk soberly, with reason of intellect rather than the emotion of fear we usually have better success in life.

To me, it appears that the level of health now enjoyed is at far, far, far greater risk of diminishing if a CRAB drug is chosen over Tysabri. Choosing a CRAB drug is very risky, IMO. PERSONAL OPINION ONLY!

Everyone must make treatment decisions for themselves. Be at peace with your choice is the only advice I have.

[Myoak]

Tysabri Benefit/Risk

Quote pulled from Aug. 14, 2012 press release sourced in the link below, “58 percent of neurologists perceiving Tysabri's benefit outweighs its risks in seronegative patients compared to 13 percent of neurologists for seropositive patients” End Quote.

http://www.marketwatch.com/story/us-...ort-2012-08-14

[Special Kay]

Myoak:

Thank you for your comments. It mirrors what I have deduced from my own research into the risks, assessment of my personal risk profile, and in discussion with my doctor.

SO...I have decided to take the plunge and start on Tysabri, though many think I'm crazy. Because while I continue to be relatively well I want to do everything I can to keep myself this way.

I have to say, reading on these boards of the challenges and difficulties so many of you face in general with this disease, has contributed to my decision. I do not take my disease's current "inactivity" for granted at all. Also, I know that the other, non-inflammatory, degenerative aspect of the disease is certainly underway in my body even now, whether I have flares or not.

Thanks to all! I'm sure I'll be posting as I get started on Tysabri and have questions, etc.

[LL60]

myoak - I like how you put it.

speical kay - good luck as you start your journy. When we make an informed choice I think it helps us deal with any thing that comes along with that choice.

I find out Thursday morning 6 am!! if I have PML. If I'm cleared, I go for infusion #41 Friday. I don't have it. None of the symptoms. None. Just having a little lightheadness and my doctor is freaking out.