those who have been on tysabri for a long time

[shel67]

Is it still working for you?

What type of improvments do you still have? Are the improvments lasting?

And has there been any cases of enchpaltist or meningitis?

[ru4cats]

This month I will celebrate my 5th year on Tysabri with my 65th infusion. Since I was an older 58 1/2 when I was diagnosed, my neurologist encouraged me to use Tysabri. She was fairly confident I would progress more rapidly than a younger individual, and Tysabri was the best hope to hold off the ravages of MS as long as possible. Improvement was an aspirational goal, but unfortunately, it wasn't in the cards. I have continued to progress, but I truly believe I have progressed more slowly than I would have if I wasn't on Ty.

Tysabri continues to keep at bay further MS damage, so I plan on staying on it indefinitely. Yeah, they say DMD's don't help once you have progressed to SPMS, but I, for one, am not willing to take the risk.

[lindaincolorado]

I have been on Tysabri for over 8 1/2 years I have had over 100 infusions-I am now getting them every 8 weeks. My progression has halted, my MRIs show no new or active lesions and with Baclofen and PT that I do for balance my sx are holding.
My jcv #s are between .23 and .27 which is indeterminate-even tho my Dr says positive. .20 is neg and .40 is positive.

I am very thankful, first to G-d and then Tysabri. I was dx in 1988.

[shel67]

Yep. That's why I want this drug. To give me the best chance at slowing this disease.

[ru4cats]

You only asked about whether it was working, but I'm sure Linda would agree that another benefit is the ease of taking this drug along with no side effects; none, nada, ziltch! Sometimes I look at the new drugs on the market and the side effects that accompany them and just wonder at the willingness of others to endure these effects, using a drug that is not as effective as Ty. On Tysabri, Day 1 is just like Day 28, and this month there will be a celebration when I take my 65th! Ice cream cake for all!

Kris

[shel67]

I've read the side effects and the liver is still an issue and it says headaches and depression.

[ru4cats]

Blood work is done at least every three months, and mine has never shown anything. Never had a headache related to Tysabri.

[shel67]

I guess like everything it'll effect people differently. I'm nervous as hell and I'll be no matter what medication I end up on. I want the medicine that will give me the best chance. I don't want to start at the bottom, I want to start at the top.

There's a lot to consider, like the rebound flare that can happen if I have to go off it.

[ru4cats]

I went into my first infusion scared to death. I had just been diagnosed at 58 1/2, 6 weeks earlier, and I had never been seriously sick a day in my life. I had a fear of needles and blood, so the concept of the infusion had me sweating bullets. I had two horrid infusion needle placements and moved to a different infusion center. Remember you are the one paying the bill. My philosophy is , "My money, my arm, my choice!" At my new center with a new nurse its, "This is Kris, and she'll tell you where to place the needle. She's in charge." I love going back each month and seeing how everyone is doing. They are like family.

There are lots of posts on how to prepare for the first infusion. Follow those and you'll be fine. I assume you're JC negative, so that is one hurdle you've cleared.

I wouldn't be concerned if you have to come off Tysabri for some reason. The medical field has gotten a handle on it, and I haven't heard of anyone having problems recently.

Good luck. Feel free to ask any other questions you might have.

Kris

[shel67]

Thanks Kris. No. I haven't been tested. I don't know if I even can have this drug. I have been set up to take Aubagio but I don't want it. I don't have insurance and Aubagio is giving me the meds. I don't know if Tysabri is an option. That's what I want to talk to the doc about. If not Ty then I'd like to try G. The side effects with Aubagio is too much.

[jreagan70]

I don't know if Tysabri is an option. That's what I want to talk to the doc about.

Hi shel:

You're not out of line to want to be on Tysabri. You can make the argument that, with already having black holes, you're behind the treatment curve and should be on an MS medication with much higher effectiveness than Aubagio.

But if you're going to argue for Tysabri, you have to really know your stuff. You'll gave to basically memorize the Tysabri website, become extremely familiar with the prescribing information and read as many scientific articles about Tysabri from reputable sources as you can so you have an answer for every objection your neurologist might bring up. You can't just sit there and start drooling because you can't answer any of your neuro's questions about why you want Tysabri and how aware you are of the risks.

You'll have to be tested for the JCV antibody, be in the low-risk group and sign a waiver saying you accept all the risks. But to get that far, you'll have to convince both yourself and your neurologist that you're ready to take the risks. So do your homework, and then go for it.

[ru4cats]

Although risky due to PML, Tysabri is now considered a first line drug because of its effectiveness. That wasn't the case when I started. I was lucky enough to slip in and have managed to stay. Dr. Vollmer from the Rocky Mountain MS Center has some excellent video's on YouTube. He considers Tysabri the 1st choice if you are negative. If you have the time, you might want to watch some. They can also be found under a MS Center search.

Also, I have read posts from others without insurance who say Biogen has been very helpful about providing them the drug. I've always been surprised that MS drugs basically cost the same, with costs going UP rather than down when a new drug hits the market.

I learned very early in my MS journey that if you don't advocate for yourself, no one else will.

Kris

[pennstater]

jreagan is correct in that you need to become your own best advocate and understand the stats.

Most of the pharmaceuticals have programs for people without insurance. The problem you may have though is getting the recommended bloodwork and MRIs needed based on your jcv titer and length of time on Tysabri. This is something you do need to consider and see if there is any assistance available.

As for side effects, when I was first worried about starting a DMD due to side effects, my neuro told me to go home and read all the side effects for aspirn and other anti inflammatory/pain relievers. His point to me was that all medicines have side effects, but it is really important for me to understand the statistics to evaluate the risk to me given any other health condition. And some may be unknown to me, a risk in itself. That is the only way to make as informed a decision as I can. By law, they have to report all side effects, so really need to understand the numbers.

As for Tysabri, I was beginning to relapse more frequently, so it has slowed that down. I do have some worsening of symptoms, but mostly sensory that has not affected my EDDS score. MRIs mostly unchanged, but slight shrinkage in largest cervical lesion. Also, OCT by opthalmologist showed slight improvement in thickness of retinal nerve. So I guess some clinical improvement.

I am in the group that starts to feel it the week before next infusion. Fatigue really increases, which then causes increase in other symptoms. I also have had 4 respiratory infections in 12 months. Even with this, I hope to stay on Tysabri as long ad I can.

Good luck to you.

[shel67]

thank you all

I just got fished reading how dangerous tysabri is on another site. I feel this drug is my change at being able to get to have some QofL. As of now it's not going good. I'm having a real bad day today. Yesterday was okay (I use the term loosely). I need to get to feeling better or I don't know how I'm going to do this. I really don't. And if I have another attack I'm done.

[pennstater]

I just got fished reading how dangerous tysabri is on another site

She'll - I am curios. Aside from the PML risk which increases as JCV titer increased, as well as number of infusions, what are dangers you are referring to?

PML risk can be managed, terminating use of Tysabri if too risk, and also by use of MRIs.

There is also the Rebound effect when Ty is discontinued.

Aside from that, I am not aware of all the danger you reference.