LOL Sal! It's so nice of you to notice my absence.

It's been very busy around these here parts, our Governor is of the mind that none of the disabled need services, mind you it all hasn't been cut yet but we're rationing Depends...

I am sooo glad to see that you are back safe and sound!

I noticed that they have the risk profile in the new insert with the vial of Tysabri and you can also get the revised booklet from your infusion center that has the new stats in it.

When was the last time you did the JCV test? My neuro is planning on doing it yearly now, I think, since we can still be exposed without knowing. He still gives me the standard warning-any changes that last more than 24 hours, etc. Even worse, he gives it to the old man too, because he knows I think I am Superwoman...

Let us know how it turns out!

Thanks for the info RW ! When I called Active Source and they didn't have info, it didn't dawn on me it could be avail anywhere other than my neuro's office.

My last jcv test was Nov 2012. I made an appt at a Quest lab for Wed to do the test.

I'm glad you are doing well, other than the issues your Gov is causing

Linda

Wow. I just realized I forgot to post getting #32 in January! This is the first time I forgot. Just had #33 last Friday. They no longer do infusions in the doctor's office. They built an infusion clinic. It's pretty swanky--private rooms for each person, flat screen TVs, new chairs that pull out almost like beds. BUT.... now it's considered hospital based treatment which means my insurance pays 80% and I pay 20% rather than me paying a $30 copay per infusion in the doctor's office.

I also have to buy the Tysabri through the clinic on the same 80/20 plan instead of through Medco Pharmacy. I'm not a happy camper. However, Biogen has some subsidy plans so it knocked the cost of the Tysabri down to $10 a pop. Wow!! They also offer some help for the actual infusion. If you don't know about this you should call Biogen right away and try to save yourself some money.

Hope everyone is doing well. Still no relapses since starting Tysabri and it will be 4 years this July (now getting every 7-8 weeks because of infections).

Natalie, glad it's all working out well for you
Linda

Sooo....

Three and a half years on Ty - just had the JC Virus test. Don't know the result yet - did anyone here continue the Ty even if they are JC positive? Thinking I may continue regardless of the test result. It just works too well to go on anything else.

Regards

Lyn

My mom is having her first Rituximab infusion next Wednesday for her severe rheumatoid arthritis. She also suffers from Scleroderma which has made the RA much worse. With this new treatment, she too will have the risk of PML.

Has anyone heard about or known anyone on this treatment? I worry for her because she is getting really frail. I hope more than anything that this treatment will improve her QOL, because it is getting worse by the day....

Hi Amy, I was at a RMmsC seminar Sat. I read that Retuximab (used for ms tho, not FDA approved) was a bit better than Tysabri (highest efficacy of ms meds) was lower in risk (much, as I read the stats) than Ty. Hope your mom responds well

Hi Lyn, yes I stayed on Ty when I rec'd the report that I was jcv+ 2010. I found out yesterday that was a false + because I have now had 2 blood test jcv- First 2 test were thru the Strata study and this last Quest labs.

So.... YAY ! jcv-.

In a previous post I answered a ? from RW saying my last test had been 11/2012-WHOOPS-how about 11/2011

Linda

Do you know if they tested her for JCV antibodies yet Amy? I am curious because the test is not limited to Tysabri patients, it's for use for anyone on any drug that has risk of PML. I am guessing that your mom has been on many drugs for both RA and scleroderma. I think the concern about previous immune suppressants has or should have been taken into account by her doctor who prescribed the Rituxan, but it wouldn't hurt to ask questions if you are involved in assisting her with her health care choices.

I was in my infusion center and overheard the nurse in the cube next door doing the standard talk to a patient who was starting Rituximab. It sounded a lot like the Tysabri warning, but seemed to have more side effects listed. I do know that the patient had some sort of reaction during his infusion, but have no details on what was going on other than there was a commotion. I do know they resumed the infusion at a slower rate and gave him IV Benadryl just like they would with Tysabri.

Please let us know how it goes for her. I hope it helps!

Mom did great yesterday. They gave her a steroid drip to start with, along with Benedryl I think?, and boy was she talkative last night!! It was a long day for her, but with the 'roids'....she did great. She goes in for another infusion on May 2nd, then another 6 mos from there.
The side effect list does seem much longer than Tysabri, but so far she is doing really good, she even went to a support group meeting last night!