Unique Tysabri risks?

[RockysMom]

Thank you Myoak. Gives me more questions we can put in here even though I know you're away for a while. I'm putting them down while I think of them.

The people who recovered from PML, do you know if they were part of a study or had special access to experimental treatments? Every source I read it that PML said that it was fatal or caused severe disability and there was no known treatment. I did read about some studies where treatments were tried but or unsuccessful. You seem to know some inside information about this.

So basically my question is, if I should get PML does that mean that I would have treatment available to me in the new ordinary own healthcare setting? What do I have to be some special patient in a study in New York were some big city?

I also read that taking steroids before, during, or after treatment with Tysabri increases your risk of developing PML. So if I had a flareup while taking it then it would be really risky to have treatment for the flareup?

So scary.

[RockysMom]

I'm sorry that the dictation did not interpret everything I said in previous post very clearly. I hope you can figure out what I'm saying.

[DexterMorgan]

It's true that steroids increases the risk of PML, that's also the reason why my doctor does not give it to me. The combination of Tysabri and the steroids is not good.

I've also learned that whether you take steroids during a flare up or not, the end result is the same. The steroids will just make the process faster. So for me personally I don't opt for it anymore unless I'd have an optic neuritis, in which case I would need to have my sight back as fast as possible.

[KatieAgain]

Several of us here have had a break-through flare while on Tysabri...me included. In fact I got to spend a week in the Hospital earlier this year. The treatment Solumedrol. I did not get PML, but believe me at the time, I really wanted something to happen because I wanted it all to end...I was extraordinarily sick.

What is not a good idea is pulse steroids in addition to Tysabri. And you can't take Solumedrol all the time...but a 3 or 5 day course if you have a flare...probably going to be O.K.

When you read about PML on Doctor Google...keep in mind that Tysabri is not the only drug that causes PML. MSers are not the only people who get PML. Cancer patients and AIDS patients can too. I believe 90% of AIDS patients die from PML vs. 20% of the MSers. And yes PML can cause serious disability if you do not die. But treatments are getting better...but they are not anywhere near perfect.

There are medical protocols in place for people who get PML. Any of the major medical centers and probably most of the Cancer Centers in the Country are equipped to handle PML. You do not have to be in a trial or go to Johns Hopkins or anything like that.

Both my MS Specialist and my Oncologist who administers the Tysabri are able to handle PML. I can't even begin to tell you how lucky I have been to have been assigned to a Cancer Center for my Tysabri...they know more about PML than anyone.

RockysMom- My advice to you is this. Get a JCV test. You just might be Negative. How cool would that be? Then you could take Tysabri with little risk for the next 24 months. Googling leads to bad info out there...and lots of anxiety.

They say MS stands for "Mighty Strong". Those of us that take Tysabri understand that very well.

[RockysMom]

Thanks for sticking with me

Thank you Dexter & Katie, I'm having trouble getting accommodation to take the test. The only one is a ways north of here and only open until noon. I left a message with my neuro to get me an order to have it done outside of Biogen's contract. No way can I get myself & power chair anywhere before noon.

My neuro wanted me in the lab the same day I saw her but I guess she didn't know they closed 3 hours before I even saw her. I wish I could get it done outpatient hospital. That's where I'd get the infusion done, somewhere in that system.

[RockysMom]

Forgot

I've only had one relapse in the last 14 years. I think I've only ever been on solumedrol twice, maybe three times, for 3 days. My initial diagnosing neuron said he thought I had PPMS but that dose knocked me into RRMS. Maybe that was more than three days but pretty sure it was three.

But now it is more progressive since my second relapse 3 yrs ago. Also my first relapse was combined with onset of active neuro Lyme's and was a devastating relapse.

Just the one other relapse three years ago since 2000.

[Myoak]

Hi RockysMom,

Katie did a great job pointing out there are medical protocols for treating PML.

The points I posted earlier were presented at the recent MS conference in Boston by doctors from Rush University Medical Center, U of Chicago. There were thousands of attendees at the MS conference so this info is well-known by neurologists. Doubtless any neuro dealing with PML would absorb the latest research concerning it.

RockysMom, IMO, you wouldn't have to go someplace special or be in a study to take advantage of the research presented because there was nothing exotic in procedure or medicines used for these 15 people at Rush. BUT, treatment issues should always be discussed with your doctor; that includes the steroid use, also. Best to you, I know it is tough going right now for you. Hang in there, kid.

Kathy the Pennstater, I'm so glad you are getting stable on Tysabri. That is great! I appreciate Penn State because of the many good doctors there... Turel, Zagon, McLaughlin and Dr. Jill Smith is one of the most wonderful people you could ever meet.

Katie, I understand the horror you went through is something you never want to face again. Since my earnest thoughts for you during that time I have felt closer to you. Perhaps, at times I become too personal and it becomes uncomfortable. But I just don't have time or desire to be impersonal. How can I possibly pray effectively if I cannot be touched with the feeling of someone's infirmity? Someone has said that only heart touches heart.

Caring, human concern, seems to be a way through which God touches someone's life. One spiritual touch can make a huge, huge difference. To me, it remains a mystery, but it happens and people affected know it. More than medicine, more than prayer, somehow in someway circumstances and people change because someone cared about them.

Well, enough of the Sunday sermon. What I want to say today is that new research is leading to more people recovering from PML. And, dose extension may largely prevent PML in the first place. We will know in a few months if dose extension reduces PML risk; right now, it looks as though it does.

Katie, your posts are always clear, helpful and appreciated by everyone. Good job, girl.

[KatieAgain]

Myoak...you are an absolute dear. Such a kind person. Your words always mean so much to me...thank-you.

It sounds as though RockysMom is finally in the hospital...yea! Has had a JCV test...double yea! Maybe she will come back online and let us know how she is doing.

[RockysMom]

Hello all

Thanks so much for all of your support and knowledge. Let me just say I'm home and am fine but I will recount my adventures in my other thread.

I'm so grateful for all the experience and concern in this forum! 😘