No more Tysabri for me

[KarenR]

I called the neuro on Wednesday because I had been experiencing some changes in my thinking and changes in my personality.

He scheduled me for an MRI that evening.

I saw him this morning. The MRI was 'normal', thank God. But we have still decided to stop my Ty infusions.

The combination of 47 infusions, JCV positive, being on an immunosuppressive (Imuran) prior to Ty, and these new symptoms...well, we're not going to gamble.

Starting next month I will be on IVIG. (I have antibodies to Avonex, Beta & Rebif; Copaxone didn't work for me.)

Wish me luck on this new chapter in my MS journey...

[tommylee]

Good luck!!!

I just quit Avonex after more than a decade of steady use.
The side effects were just getting too bad.
So far so good?
I am sticking with the rest of my program. Just dropped the Avonex.
Seem to be feeling better?

[jazzgirl]

I'm sorry, Karen. I know that you thought the drug was a good one for you.

Honestly, I don't know how I feel about any of the treatments they send our way. Such a complicated disease.....

[0485c10]

I'm sorry for the loss of this ms treatment.

it's the same decision i would have made.

i hope what ever is around the corner has less risk for you!

Good Luck on your journey, lots of good wishes sent your way.

[tellnhelen]

Finding a suitable replacement

Jazzi

I'm sorry to hear that Tysabri is no longer a good option for you I just started my Tysabri journey (4 months now). Ill be seeing my neuro nedt month..we'll see (I guess) how well I'm tolerating with it. NTMT, have you ever thought of a clincal trial? I have. I'm going to be asking my neuro about it next month. Not sure about timing for me but since you stopped Ty maybe timing will be better for u

[jazzgirl]

I don't qualify for any of the clinical trials now, tnh. I've had the disease for far too long, and unfortunately, am now disabled by it. Plus, at the ripe old age of 54, I'm at/after the expiration date for most of them.

[lindaincolorado]

Karen, I am so sorry I know that you felt about Tysabri like I do.

As you continue on your journey I will be thinking of you and wishing you well, my best.

Good luck on this next chapter
Linda

[CasinoKathy]

Karen, sorry that you have to stop Ty. Good luck with the IVIG. It's been so long since I read up on it that I forgot what it's all about. It is an infusion, isn't it? Can you give me some info it? Good luck and keep us up to date how how that's working for you.

[LL60]

Karen-
How scary for you! As I understand an MRI doesn't 100% disprove PML, right? They go more by symptoms? Did they do a spinal tap? I don't know what IVIG is either.

How could you tell your thinking and personality was different? Did someone else notice. When I was on steroids in Feb. my thinking and personality was way off. Way way off. The doctor said it was due to the steroids and a lot of people go off of them early because of that. I stuck it out. So, is it sort of like that - like when you are on steroids, only you aren't on steroids?

I wish you only good things on the IVIG. How about the pill that is out? And there are newer things coming along too, although my doctor said all the new meds work way better than the old ones, but they all have way worse side effects. So what's a person to do?

Please keep us posted on how you are doing. That is good that your doctor acted quickly. I think mine would too, she is a little nervous about Tysabri and only has a few patients on it. She said there are other things to worry about besides PML and just always sends me home with a long list of things to watch out for.

But my life is as different as night and day on Tysabri, and I hope I never have to give it up. Your post sort of scared me. Was there one thing that got your attention that you felt was "off." Or just a bunch of things.

I go for #23 next Friday.

[KarenR]

Thanks for everyone's well wishes.

LL60 - No, they didn't do a spinal tap, but they did have the head radiologist read the MRI. I'll have another MRI in July.

We decided against Gilenya because I'm leery of going on another new drug. I went on Tysabri shortly after its re-release and, as great as it worked for me, every month was still a gamble. And now the risk has finally outweighed my patience!

I noticed over the past month or so that I had become much, much more short tempered, almost argumentative. Anyone who knows me well knows that I am generally a very even keeled person and really quite happy most of the time. It was like a bad case of 'roid rage or PMS, only times 1000. But I'm post-menopausal and haven't had steroids in over a year.

It's very scary. Especially when I have to make a concentrated effort to be nice and not bite everyone's head off.

In addition, a very dear friend, who has also had 47 infusions, was diagnosed with PML in January. She's been in and out of the hospital since then. She was discharged last week, but then she had two seizures and was readmitted.

Ty was so very good to me. I really got my life back, especially during my first 36 infusions (not so much after a 7 month "holiday" and restart).

I hope the IVIG will simply maintain what function I've recovered. Time will tell.

Again, thanks for everyone's good thoughts.

Be well,

[REG53]

krohe I am so sorry you are having to discontinue TY.
I hope you do very well on IVIG and I hope your friend recovers well.

[ewizabeth]

Karen,

I'm sorry you had to discontue Tysabri but I'm glad you were able to see symptoms that might suggest it is time to do so. I had been on it for three years and I was feeling worse so I did the same thing. But I was able to go back on Copaxone. I hope the IVIG will work out for you. Keep us posted.

I'm also sorry about your friend having PML. I hope she will get past the symptoms and recover soon.

[LL60]

Hi Karen, how are you doing? I guess you are the first person up close and personal I have "known" with symptoms of PML and it really makes you stop and think. And then that you have a friend with PML just brings it that much more into realitity.

Are the symptoms continuing for you? Are they worse? You said you would have another MRI in June, what does your doctor plan until then?

Sorry for all the questions. It's just that if PML is a posibility for people, then I just want to know what steps are taken to try and treat it. You just had an infusion a short while ago, right, are there plans to try and remove the Tysabri from your system? I can't remember what that is called. It sounds like it has been a long hard road for your friend.

Just know you are in my prayers and I hope that this may have other causes and goes away soon.

[KarenR]

Hi Karen, how are you doing? I guess you are the first person up close and personal I have "known" with symptoms of PML and it really makes you stop and think. And then that you have a friend with PML just brings it that much more into realitity.

Hi LL! I'm doing fine. I'm actually relieved that my last infusion on 4/5 was truly my last.

Are the symptoms continuing for you? Are they worse? You said you would have another MRI in June, what does your doctor plan until then?

The symptoms of my alter-personality are still there. There are times when I have to consciously think of not being nasty! Until my next MRI we are just watching me for any other changes.

Sorry for all the questions. It's just that if PML is a possibility for people, then I just want to know what steps are taken to try and treat it. You just had an infusion a short while ago, right, are there plans to try and remove the Tysabri from your system? I can't remember what that is called. It sounds like it has been a long hard road for your friend.

The procedure my friend went through is plasmapharesis. It's kind of a blood cleansing & exchange. It seemed to work for her. But now she has had 2 seizures.
We don't have any plans for me to have this procedure at this time.

Yes, it's been a very hard road for my friend. She's been in and out of the hospital (mostly in) since late January after her routine 6-month MRI showed PML. She had no symptoms.

Just know you are in my prayers and I hope that this may have other causes and goes away soon.

Thank you, LL

[LL60]

Karen, you have been a great teacher today.

I have been reading about IVIG and also reading all I could, once again, about PML and its symptoms. The fact that your friend just discovered it by chance when you got her routine MRI is a scary fact indeed. "No symptoms." OMG. That is not in any of the articles I read. In fact most of them say people put off going to the doctor only because they confuse the new symptoms for MS when in fact it is PML. How can you fight something when you have no symptoms?

I only get yearly MRI's. And I only see my neuro every 6 months as required by TOUCH. She wanted to start seeing me every 3 months since I have almost reached the 24 infusion mark. (that will be in June) I said no. It is a long drive in city traffic, to be there for a few minutes for $170. She has me touch my nose, walk down the hall, and she asks me what the numbers for PML are. She knows I kept track, and she does not. I didn't feel it was worth it to go every 3 months. I am now rethinking that choice. Maybe at least though #24 - 36 infusions, when the risk slightly goes up.

You have given me a lot to think about. I even read an article from the Irish Times. The drug company is getting ready to make a fortune with the JCV test. Only about 10% of the MS population are now on Tysabri. Since they think only about half the MS population is JC positive, that will give them 50% of the population to market their drug to. Their stock has already gone up.

I hope you continue to do okay, and I hope each day your get more and more of your sunny personality back. Even though they said 12 weeks for Ty to get out of your system, I was off of it for 8 weeks when I was on steroids, and I felt like it was totally out of my system. I feel like I am starting all over again. I hope it leaves your system quickly.