Hey RW, so happy for you :D trip sounds wonderful (other than the temps) and that you had such a good time !!!
Congrats on #41! I think I had #47 on 7/16-now that I'm going every 5 weeks I am not able to keep track like before:p
Linda

Interesting article from July 20, 2010 about new treatment option for PML.

"Specialists explore options for treating natalizumab-associated PML"

http://www.mstrust.org.uk/news/article.jsp?id=3941

Joy another infusion today! I have to admit that I am a bit jealous of those of you who actually get results and mobility improvement. Ok, I am a lot a bit jealous. And frustrated.

I don't want to play guinea pig anymore! And it would be so nice to not see my veins explode today.

Hoping for a MUCH better experience for you!!!
Linda

No such luck! On the plus side, they only blew one vein and I got to spend the day with my best friend, and DH2B went to store and decided to surprise me by picking up most of the stuff DD needs for school, and a new external hard drive for me! That was pretty sweet.

But, on the not so plus side... best friend went with me today because she had an appt with my neuro about a brain stem injury from years ago. While I was there I moved my follow up to next month, and talked to neuro. The newest set of tortures my body is creating seem to scream "new lesions!!". I had planned on doing one more infusion next month and then looking at MRI to make the decision whether to stay on the Ty or to get off of it and try to fix the broken back.

Now she wants a new set of scans BEFORE my next infusion, and if I am presenting with new lesions as she suspected she is pulling me off of Ty all together. Can't say it is a crying shame as I have yet to see any improvement, but I can say I am tired of trying every drug they have available and I am not too sure that I want to go play lab rat at clinical trials, so I dunno.

I had another infusion last Friday.....it may have been #35 but I'm having difficulty keeping track and my calender isn't on my desk so I'm not sure. Between the infusion and the antibiotics for the sinus/ear infections I keep getting my stomach feels like it's being torn to pieces :( But, I've had sinus infections most of my life. They seem to pop up at regular intervals. The infusion dr seems to be upset by them and keeps asking if I'm sure my neuro is ok with the antibiotics and the infusions. Actually, my neuro is thrilled that the infections no longer last 8-9 months. Having an infection every other month or so and only taking antibiotics for 2-4 weeks....sometimes 6 weeks....is a major improvement!!!!!!!

Leggz, I'm sorry you're having such a hard time!!!!!!!!!!!

RW, your vacation sounds wonderful :)

I heard on the news that some MSers are responding well to meds for high blood pressure. That is great!!!!!!!!!! I can't take them because if my blood pressure falls any lower they won't be able to find a pulse...LOL But, the neuros are speculating that in a few years there will be m.s. cocktails that will help improve quality of life and give MSers a normal life span. They have developed cocktails for AIDs and childhood leukemia both of which were once considered fatal. I have a nephew who has AIDs. He was dx HIV + at age 19. At the age of 20 he was dx with AIDs. He is now 41 years old and living a normal life :) I hope to hang in there long enough for the m.s. cocktail!!!!!!!!!!!

My neuro is waiting for the go ahead to begin testing for JCV. She also plans to get an infusion nurse to join her practice and will eventually begin administrating the infusions in her office :) I'm looking forward to that...as long as the infusion nurse can hit a vein without blowing it. Her office is only 10 minutes from my home. The infusion center I go to now is 1 hour away from home...but, the nurse is fantastic!!!!!!!

Take care everyone and have a great weekend.

hugs,
Shayna

more information on JC virus assay and risk for PML
 

http://seekingalpha.com/article/2154...all-transcript

Biogen Idec Inc. Q2 2010 Earnings Call Transcript, July 20, 2010

I’ll be providing an update on the pipeline a bit later, but let me begin with our TYSABRI risk stratification efforts. As I’ve mentioned before, one of our goals has been to provide prescribers with tools they can identify individuals who might be at risk for PML when taking TYSABRI.

We began with a premise that only patients who’ve been affected with the JC virus are at risk of developing PML. Our hypothesis that our two-step ELISA assay that detects antibodies against JCV will be informative in estimating the risk of developing PML for patients receiving TYSABRI.

Based on testing, nearly 2000 MS patients from STRATA and TYGRIS studies, we find that approximately 50% of MS patients are still positive with our assay. We currently estimate that our assay has a false negative rate of about 2.5%. When we tested archived samples that were available from 17 patients who developed PML while on TYSABRI, all 17 tested positive with our assay.

These samples have been collected 16 months to a 180 months prior to the onset of PML for various reasons, including participation in clinical studies and national registries. With antibody status, we’re not a risk factor for developing PML, one would have expected that roughly half of these 17 patients would have been antibody positive. So we believe the finding all 17 to be positive was extremely unlikely to be due to chance.

Encouraged by these preliminary data, we have initiated two studies to test our hypothesis at the anti-JCV test that we have developed will be helpful to clinicians as risk stratification tools. These studies are STRATIFY 1 and STRATIFY 2, both of which are being conducted in the United States.

As George mentioned, STRATIFY 1 is now fully enrolled and STRATIFY 2 is off to a great start with more than 700 patients enrolled at over 90 sites around the United States. This study which will enroll a total of 8000 to 24000 patients will provide an estimate of the risk of PML in TYSABRI patients test negative in our assay. Our hypothesis is that those who test negative in our assay will have a lower risk of PML than those who test positive.

We plan to show preliminary data from STRATIFY 1 at the ECTRIMS meeting in October of this year. Also, our manuscript on the anti-JCV assay methodology and its potential use as a risk stratification tool has been accepted for publication in the Annals of Neurology and will be coming out in approximately six weeks.

We also want to update you on a change to the US TYSABRI label that we along with our partner Elan have just made. After a thorough evaluation of our post-marketing surveillance data, we have concluded that the risk of PML is increased in patients have been treated with an immunosuppressant prior to receiving TYSABRI.

This increased risk appears to be independent of treatment duration and there was a broad range in the time interval between the discontinuation of the prior immunosuppressant and the TYSABRI initiation. Recall that the original label had warned that patients receiving TYSABRI should not be treated with concomitant immunosuppressants. We have added an additional warning about the prior use of these drugs to the existing warning.

Based on data from the TYGRIS observational study, only 13% of US patients and 24% of ex-US patients have had prior immunosuppressant use, whereas about half of the PML cases had previously received these drugs. Thus, there was a disproportionately higher representation of prior immunosuppressant use in the PML cases. The new label changes were posted online as of July 15th. Overall, we continue to learn more about factors associated with the risk of PML and we’re looking forward to providing data to the MS community to help with their decision-making for treatment choices.

Hi Maryann--I hope you are feeling better soon. Glad to hear the celexa is helping you. Depression can be such an awful crippling thing. :hug: Natalie

#10 for me today. The reason why i'm saying so is because one time I read someone ask if anyone else felt like they needed a "tysabri fix" in the final days before next infusion. Well I sure as heck have-had? increased numbness the past few days. The CT I had yesterday (or lack of eating for 17hrs) didn't help things either. Ty never gave me a stomach ache like others have. None. I drink water & do bicep curls so veins are super easy to hit 1st time.