I had infusion # 39 yesterday, with no problems and no concerns.

It was also my third anniversary since I started Tysabri. I've missed one infusion. Since I started I haven't had a relapse. My MRI showed no new lesions, no enhancing lesions. My doc said I am among the 34% who show no clinical signs of disease activity. I have no signs or symptoms except for the lingering spasticity and fatigue.
My MRI report said that the MRI was "unremarkable". It's the only time I have liked being unremarkable!

The assay is in the works. He says he should have it in hand in 2 weeks. He says that everyone who is tested will have to listen to the informed consent speech, and the informational speech, but that the assay is a simple blood draw and that results will be available in 4-6 weeks and that they WILL be releasing the results to the neurologists. He says that the test has a supposed 2% false negative result at this time and that those who test negative will be retested in six months.

I for one am looking forward to being tested so I can move forward with my choice of treatment. Here's hoping that all of us who are tested come out negative!!

I hope everyone's doing well!!

Hi RW -- That's great news on all fronts. Congrats on #39 and the lesion free MRI's and relapse free life. Unremarkable is wonderful!

So your neuro says he will have the assay in hand in 2 weeks? Does that mean anyone can be tested, even those not participating in any of the trials for the assay? I wrote to my research nurse to ask about it but haven't heard back. If I'm a negative I will stay on it. If I'm positive (or no news) I am heading toward Gilenia (fingolimod).

I am hoping many of us have negative results too.

Natalie,
According to my doc he had to apply to be a testing site. He wants to do all his draws on the same day so he can send them all out at the same time, but that is due to costs for shipping, since they have to be shipped according to specs. He applied for all his Tysabri patients. He has a number of people who he monitors, because MS is his specialty and because a lot of other docs send their patients here for infusions, and he takes over when they start as he is the doc associated with this hospital. In addition, we are in a very rural area and for many people this infusion center is the closest to them. I was amazed at the number of people who are being infused here now. I spoke with the nurses while I was there and they said they have grown in numbers over the last few months. He said he will release the results to those who want to know and if the patient doesn't want to know, they will know anyway if they test positive since he will be taking them off Tysabri and steering them towards one of the others drugs available.
I know that if I test positive, I will be off Tysabri. We didn't discuss what would happen after that, whether I would be on a drug holiday or off completely and I don't want to know until the results are in. I prefer to wait and see what comes of the testing.

I suppose i have to start doing homework again on the new drugs. I am not looking forward to that and I figure if I am positive, I'll deal with it then. I want to enjoy my summer without having to read scientific journals and textbooks and studies!!!

I just heard from the research nurse at my MS clinic. They will be doing the antibody assay testing. She is waiting on approvals and as soon as she gets that they will call patients in to give blood. My plan was to drop Tysabri after the next infusion in July (#22), wait a few months until it clears from my system, and then go on Fingolimod (now called Gilenia) which I'm hoping is out by Fall. However, if I test negative on the assay I think I would probably stay on Tysabri. Thank god there are new medications on the horizon, though!!

I had my 36th and last Ty infusion in October 2009. My neuro and I agreed to stop Ty because the 'adverse effect' information released by Biogen had ceased. We could no longer make an informed, educated decision to stay on Ty. I had done very, very well on Ty, to the point that most days I almost forgot I had MS!

I started Copaxone at the end of December. I had no complaints or issues with the daily injection. Thank God for the auto-injector!

I had my 6 month follow up MRI last Monday. The neuro called me on Thursday to say he needed to see me "sooner rather than later". Seems as though my MRI is lit up like a Christmas tree again- new lesions, many enhancing, a lot of disease activity. My MRI was very active in the first 2 years after my 2005 diagnosis.

So, he wants to talk about going back on Tysabri.

I'm a little freaked out about the whole thing. I was so hoping that the Copaxone would keep my disease activity in check.

Do I risk PML and feel oh so better? Does the # of infusions count start over because I have been off of Ty for 6+ months? Do I refuse Ty and continue down the slippery slope of progression?

Any advice or suggestions are appreciated.

I meet with the neuro today at 1 o'clock. Please wish me luck and send good vibes my way.

Be well,
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I'm sorry I didn't get here in time to answer this because I had this discussion with my neuro last week when we talked about the assay and what he would do for those who test positive. My doc said he envisioned people going on and off Tysabri as needed, that your system clears it naturally and that his patients are back to normal immune status within 90 days at most, so theoretically, you could go back on after drug holiday with good results. He said that he hasn't seen any one of his patients who chose a drug holiday have antibodies when they returned to Tysabri but that it could be a concern for some.

Is your doc involved in the assay testing?

If you are looking for personal opinions, if it was me and I had been off for 6 months and saw the same results, I'd be back on Tysabri in a heartbeat. I'd also consider doing infusions on a longer time frame, maybe every six or eight weeks as opposed to every four weeks. I am not hung up on time anymore, since I know that the every four week schedule is just what they tested, and that a longer time frame may work well for some of us.

Let us know what happened will you? I'm pulling for you!

Oh the many reason I hate this stupid disease. So I was on antibiotics for a UTI (ps, caused by the TY I am told) when I went in for my infusion last week. The infusion seems to have washed out the Avelox from my system. UTI is still there and the sinus infection I thought I had that started the day after the infusion...nope, it's strep throat. I don't know if that wsa from the infusion or from being in the hospital all day for the infusion. I was there for 5 hours. This doth sucketh!

Hi Krohe,

How did the meeting with your neuro go?????? Have you decided on what you will do next????? This is a very personal decision. I can only tell you that if it were me I would get an infusion of Ty immediately. But, for me quality of life is so much more important than quantity. I'm 63 years old and once I was finally diagnosed we were able to trace my m.s. back to when I was in college.

I'm sending lots of good vibes your way, keeping my fingers crossed for you and sending you lots of hugs!!!!!!!!!!!!!!!

{{{{{{{{{{Krohe}}}}}}}}}}

Hi, newbie here, been on Tysabri 18 months, diagnosed 06. Just now I'm on steroids for first time since starting Ty, two days now, and I swear if anything I'm worse. I'm having trouble finding clear info about differentiating between MS relapse and PML; is it really almost impossible to tell for weeks? Difference seems to be only if you've got optic neuritis or it's fast onset, then definitely MS? An MRI a week ago showed active lesion in brain stem and I'd been having symptoms for a few weeks, steadily increasing all this time. Anyone have any similar experiences or knowledge could help me out? I'd so appreciate that.
But prior, I'd improved dramatically and rapidly after starting Ty--especially cognitively, an area which I'd been hit hard in (my neuro sez about a quarter of MS-ers are hit hard that way, as I am).

Hi Shayna (and all that have replied),

We (DH & I) met with the neuro on Monday and I am going back on Ty.

They promise us (and I believe them) that they will keep an ever vigilant eye on me and any "new or worsening symptoms"

Their office is enrolled in he assay testing, so I will also be getting that as soon as possible.

In the meantime I continue to stab myself with Copaxone, which, according to the neuro, is better than nothing. I'll only need a 2 week break in between C and Ty.

I need to start the enrollment process all over again, so I am imaging it will be a month or so before I can have my first (37th?) infusion. According to the neuro the clock doesn't start over at "1", but is definitely less than 37.

He said that those of us that went on Ty shortly after its re-release are all trailblazers. He honestly admitted to not having all of the answers. (which I respect. That's better than giving me an answer that turns out to be false only to save his ego)

I asked about lengthening the time between infusions to 6 or 8 weeks and he was not in favor. Mostly because my MRI is so active and my symptoms are back with a vengeance. Maybe when I schedule I'll just tack a few extra days on, and go 30-35 days instead of 28.

I guess I'm just looking forward to (hopefully) feeling better before the summer is over. I have a lot of stuff going on in my life right now (selling our house, buying/building another, SSDI appeal process, etc.) that I will need all of the energy I can get.

Thanks for everyone's well wishes. I will keep you posted.

Be well,