those who have been on tysabri for a long time

[pennstater]

Yes it is working

so it is working for you? Have you stablized? Symptoms not worsening?

Yes, it has worked for me. I haven't experienced the physical improvement some people do, but for the most part, I am not progressing, which is really the goal of the medicine. I have had some worsening of my right arm, which is my oldest symptom. But it has been slow. I think the damage was done long ago and no matter what, would progress. All else stabilized.

[poppydarling]

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

For the eight months I was on Tysabri, I thought it was a little like a miracle drug Had to come off it due to an allergic reaction and had a massive debilitating flareup though (this was about five years ago), so just have a plan ready in case that happens. I think you're doing all the right research and evaluations of your options at present, so I would move forward with confidence!

With the TOUCH program being required to administer Tysabri, you will be monitored very closely for side effects or adverse reactions , so I wouldn't worry there. I had zero side effects beyond a little flu like feeling the day of the infusion, and had so much more energy.

Then I moved to Gilenya and had terrible side effects and depression and had to come off it within two months, and it's taken about three months for the drug to leave my system. I don't think waiting a month to start Tysabri will make that much of a difference, and could save you time in the long run, but ymmv of course. Sending you healing vibes and well wishes.

[chatmagique]

Hi. I thought I would share my experience with Tysabri in case it's helpful to you. I have been on Tysabri since October after a 2-month try of Tecfidera during which I had a minor relapse and gained 10 pounds in 2 months.

I was just diagnosed in June 2014 after my first real attack. I'm a woman in my forties. I live near a major MS research Center where the doctors are extremely knowledgeable and treat MS aggressively, based on what is known about the disease's progression and how important it is to stop damage from occurring.

Like you, I was very nervous at first and initially wouldn't even consider something like Tysabri. But after doing more reading, talking to doctors, learning about PML and JCV (I am currently negative for it), I became more open to it.

Then I watched some extremely helpful videos by Dr Vollmer and Dr Corboy at the Rocky Mountain MS Center and became convinced to give it a try.

I just finished my 10th infusion. My only side effect has been mild dizziness the evening of or day after an infusion, but I'm still not even certain it's related to the infusion.

I am lucky in that my only ongoing symptoms are some sensations in my right hand and right leg- not enough to interfere with movement but enough to notice them. And these are only occasional and have decreased in frequency since I started Tysabri. Only happens when I'm tired or over stressed.

I have good insurance but still get copay assistance from Biogen, and I make a good living for now but that didn't seem to affect my getting assistance from them.

I have had 1 MRI since I started and there was no change and I've had no relapses in this period. Of course I might not have had them in that timeframe any way, but I certainly won't question it.

All of my bloodwork has remained normal so far and I haven't had any opportunistic infections so far. I see my neuro next week for a checkup and three-month blood work. Hoping I am still JCV negative as I'd like to continue Tysabri for as long as I'm able.

Anyway, that's been my experience so far.

[lindaincolorado]

Hey Shel,
my biochemist son told me many years ago to take Vits especially C and E. My ms specialist said to take B-100 and magnesium, my now ms specialist (RMmsC) said D. I take these and I, also, take lecithin.

Thank G-d I have never had a uti, respiratory infection. I don't think I've had more that 3-5 colds in the 8 1/2 years on Tysabri. I probably have had about 110 infusions. I don't think about ms or the meds I take to halt it. I LIVE my life and appreciate the QOL I have and have had. I use a Bioness L300 to help me walk 25-75 ft and a cane, to go further I have a scooter-this all happened approx 10 yrs ago...Tysabri halted my progression Some of the cooking and baking I do wears me out, BUT I do it (not always)

On another post I said I am grateful to G-d and Tysabri-I am !! For others it has done more, for some they cannot take it and it does nothing for them. I am blessed - there is not guarantee, But it is still the biggest gun out there other than maybe Lemtrada and it has BIG side effects that aren't that rare .. I need a lot more info on it!

Even if you are jcv+ those on it have a year that there has not been any pml. There is someone on this site that has been high positive for years and chooses to stay on Ty. We need to get info and then make a decision with our Dr.

Good luck with your decision!

[shel67]

Thanks y'all. Im greatful for your help. This will be a nerve wrecking choice no matter what.