It's been vewwy quietttt in here.

Hopefully it's because everyone is out enjoying spring weather!!

Lots of rain here.

I had infusion #11 today and it was so infuriating! I don't want to go into the whole long story but suffice it to say that 1) my infusion started one hour late 2) I was forced to sit on a tiny couch because they "overbooked" (???) and there was no room for me in an infusion chair 3) I spent almost 5 hours in the infusion clinic 4) the usual clueless and unhygienic nurse messed up my infusion. I lost it at the beginning with the nurse and my husband lost it at the end. I rarely raise my voice or lose it in public but I was mad!!!!

One example of many: the nurse put on rubber gloves before a patient's IV (normal, right) but then put his hands in his pockets to fish out keys to open a cabinet and went on to use the same gloves to work on someone's IV! He also forgot to start my saline flush after the slowed down 90 minute infusion. Then he remembered much later (but I wasn't sure what was going on...I kept asking questions and he was dismissive).

I don't trust this place anymore. I think I have to go somewhere else even though it will probably cost me much more. Just so everyone knows, I reported this clinic to Biogen months ago for not asking the 4 questions or following protocol. Biogen sent me a personal letter telling me the clinic had to go through TOUCH retraining again. But the MS infusion clinic still is ridiculously screwed up.

In addition, my neuro apparently wants to do a Tysabri antibody test again (I got the order today by paper) since I may have had some mild optic neuritis a few weeks ago...I think in conjunction with feeling somewhat crappy after the infusions it is probably a good idea. Of course I am speculating this is the reason why. But now I am extremely worried. I have to wait 2 weeks before I go in to get the blood drawn (not sure why the nurse told me this) and then of course 2 weeks to get the results.

It has been a long frustrating day.

Good news. Maybe getting mad yesterday worked. Out of the blue I get a call from a nurse at my clinic wanting to check in. He said my neuro heard that I was unhappy with my experience with the tysabri infusion because of overcrowding and they had an alternative. The general neurology dept. has it's own infusion clinic and they could move me there permanently. I know the infusion nurse who works there and she is awesome!!!!!!

Yay Natalie! The squeaky wheel gets the oil!!

Natalie, I'm so happy for you After reading your first post I felt really bad/sad for you-I'm having my own issues and then I saw the 2nd YEA!!! I hope mine works out as well!!
Linda

Congrats on the progress, Natalie! Ty infusions are no small thing ~ you need to have confidence in the people who are administrating it..
My next infusion is coming up Monday. I'm thinking positive thoughts, especially since the first one went so well.

Thanks Wiz!

Linda, I'm sorry to hear you are having problems too. Hope it gets resolved. Keep us posted.

Polar, good luck with the next infusion. You are so right about having confidence in the people who administer it. That is so important -- it is stressful enough being on this drug.

The best news of all that I forgot to report is that the cost will stay the same (still a $30 co-pay visit for the infusion instead of 20% of the total infusion cost). Yea!!

Thanks Natalie-I think it's resolved AND the way I wanted it
Another YEA for your best news

According to the VP of Drug Safety at Biogen the chance of getting PML on Tysabri are lower than initially suspected based on the clinical trials. Maybe someone posted this article already.

http://www.medscape.com/viewarticle/702373

The incidence of PML in patients taking natalizumab for 1 year or more is 2.4 per 10,000 patients, 1.4 per 10,000 in patients treated for 18 months or more, and 3 per 10,000 in patients treated for 2 years or more, with confidence intervals "that are overlapping," said Dr. Bozic.

I'm not sure what "confidence intervals overlapping" means.

Finally, some good stats on Tysabri & PML..Thanks!