NeuroTalk Support Groups - Tysabri Information and Check In part 2

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- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Information and Check In part 2 (https://www.neurotalk.org/multiple-sclerosis/84538-tysabri-information-check-2-a.html)

I hear you! 31 cases is a lot to handle mentally, especially since we only had 13 supposedly in September. I am also anxiously awaiting the assay test.

I go for #19 on Monday after 8 weeks break. I'm taking prophylactic antibiotics (Cipro) around the time of the infusion. Cross your fingers that I don't get UTI #5. The only thing I have noticed after 8 weeks is the vision in my left eye is only slightly less sharp (that was the optic neuritis eye) and maybe the balance is a little bit more off but other than that everything seems fine. My energy level has not gotten any worse. I will tell you that my depression has gotten WAY better which makes me wonder if the Tysabri has been causing depression as a side effect.

Still, I am sooooooo glad I went on this drug.

Quote:

Originally Posted by shayna (Post 612713)

The infusion center I go to has 10 recliners for the patients receiving chemo or Ty. I don't know if they infusion anything else......they refer to it as "the chemo room". The drs are oncologist. My Ty infusions cost between $5500 and $6000 per infusion depending on whether or not they draw blood and I talk to the dr. I'm lucky that I only have to pay the $25 co-pay for a visit to a specialist. But, my monthly medical insurance is $900 :( It's hurting us financially but I refuse to give up my medical insurance. They can't kick me out because this is covered under my husband's plan and he is "grandfathered" into their insurance policy :) If I give this up I'm not sure that any other insurance will take me. Ty is expensive!!!!!!!!!!

When I went for my last infusion there was a Ty patient there that I had not seen in a very long time. She told me that she couldn't afford her medical insurance last year so she had to go without the infusions. She's back in a wheelchair now :( She's really hoping that once she's had several infusions she'll be able to walk again. Prior to having to stop the infusions she had been on Ty for 2 years.

My next infusion is scheduled for February 19 because I'm trying to wait 6 weeks between infusions. I'm hoping it will decrease my chances of getting PML. The fact that there are now 31 confirmed cases does not give me a warm fuzzy feeling. I hope they have that assay available soon!!!!!!!!!!!!!!!!!!!!!! But, if I test positive I'm going to hate giving up my Ty.....LOL

Biogen and reporting on Tysabri numbers-
NEW YORK (Dow Jones)--Biogen Idec Inc. (BIIB) will communicate with doctors once a month on the occurrence of new cases of a rare brain infection in patients using its multiple sclerosis treatment Tysabri, as the biotech strives to find the right balance in keeping the medical and financial communities updated on that important number...

I think we played a part in educating Biogen on this one! The article I have is for subscribers only. Drop me a PM for the full article.

I had infusion #19 today (after an 8 week break). The slowed down infusion (2 hours instead of 1) is still the way to go for me. I am having relatively few side effects from my infusion which is nice. My eyesight went back to being really crystal clear sharp again!! Strange, huh? It had started to blur up a little over the 8 week break. Anyhow, if I don't get a UTI this time we may go to 6 weeks in between infusions. I'm not sure I want to go back to every 4 weeks for fear of PML and UTI's. It's all still play it by ear.....

That's great news about your vision, Natalie! It's nice that they're willing to be flexible about giving you breaks from the infusions as needed.

-----
There is an article in Motley Fool telling how to get PML updates:

http://www.fool.com/investing/high-g...do-is-ask.aspx

It seems that ordinary people (non-MDs) will have to ask for the PML updates every month from Biogen's investor relations department.

Quote:

Originally Posted by Natalie8 (Post 614376)

Glad to hear it went well, Natalie! :hug:
I noted some lessening of muscle control of my eye when I had the break due to appendectomy last year, along with blurring. It just proved to me yet again that Tysabri actually has a beneficial effect on symptoms for me!

Thursday is #35 for me.

Good luck with #35 RW!! Very interesting that you also noticed eye issues with your Tysabri break. My neuro told me Ty. was particularly helpful for cognitive, eye, fatigue problems which is why she recommended it. I hate to mess with the vision which is why I go back and forth about what to do as I near the #24 mark.

Actually, I had a delay in Ty. side effects from the infusion. Later last night I felt very achy, nauseous and spaced out to the point of messing up words. But I've had this happen before and know it goes a way in a couple of days.

Quote:

Originally Posted by Riverwild (Post 614709)

Natalie, sorry to hear you were feeling rather lousy after infusion :( I am so fortunate that I do so well with my infusions. Tomorrow will be 42 for me :p

RW, hope all went well today :)

Anyone see their neuro... get any Ty/pml info?

Linda

# 35 down and done with the usual no problems and no concerns. :)

The only new info I have until I see the doc next month for the news from the KOL Conference is from Pit. His chart notes 33 PML cases with the last two unconfirmed as of yet, which is the same number I have. I'll post when Biogen opens their sticky fingers tomorrow and confirms the last two via their investor relations department. The bad part of the new cases is that they all are up there on their doses, ranging from 37 to 52 doses. The US leads now with 11 cases, one more than Germany.

http://chefarztfrau.de/?page_id=716

OTOH, Tysabri has now reached what the pharma business refers to as "blockbuster" status, with a billion dollars in sales in 2009.

I for one look forward to the assay and a vaccine in the future, cause after 5+ years I am growing weary of working to separate truth from rumor. Biogen's open and honest communication truly needs more work, regardless of the steps they have taken to appease us in the past few months. :mad:

Hey Natalie?

The vision problems I reported could also have been due to all the meds I was on after surgery and during recovery, I forgot about that.

I was looped and was happy to stop them, even though I was in love with that measured dose pump full of Demerol! :D
It was much easier when I was younger for some reason! I'm a lightweight now and even Tylenol 3 and Vicodin hit me hard. :p