I strongly suggest all go to the last post Riverwild. River is out of town, but please review the post.

Thanks Pink I would've missed it!
Linda

I thought there was interesting/useful information in this article.

"Lessons Learned from Post-Marketing Experience with PML-Associated Natalizumab" Neurology Today: 20 May 2010 - Volume 10 - Issue 10 - p 17–18

http://journals.lww.com/neurotodayon...rience.13.aspx

I had my 11th Tysabri infusion yesterday. Everything went well. Getting out in the heat has made my arms weaker, and I'm hoping the T will get me back to weak-normal.

I had a neuro appt. last week. He mentioned that protocol is to take Tysabri for two years, then take a 6-month break from it. Is that correct?

Also, I had an MRI two weeks ago. Results were that nothing has changed. So, that's good. My veins are becoming hard to put an IV in. The woman who put my IV in before the MRI was a little too rough, and I should have said something but I kept my mouth shut. It felt like she was digging around with an ice pick.

With my tremors, the technician puts pads between my ears and the plastic helmet to hold my head perfectly still since I can't do it myself. Before she put the pads in, I requested earplugs. She tried to tell me that the pads would be enough, but I insisted. She acted like I had asked her to scrub my kitchen floor! The B----. This is the same person who used an ice pick on my poor vein.

The other technician who got me out of the MRI and helped me back to the changing room was a whole lot nicer. He acted like they all should act, instead of getting all hot and bothered because I made a very small request. Oh well, hopefully that will be the last MRI now for two more years.

azoyizes, congrats on #11!!!

"I had a neuro appt. last week. He mentioned that protocol is to take Tysabri for two years, then take a 6-month break from it. Is that correct?" No - Check the tysabri site - I do not see this as protocol! The is your neuros opinion. I'm going on 28 now and many here with over 40 and no break.

I hope soooo tysabri can get you back also. I was dxed late and have had a hard time due to other problems, but I have regained most. typing is crap and fatigue now is my worse. I have found tysabri works in bringing back some, but in it's own time.

Good Luck

Hi azoyizes, I think I just had #47 Fri. I have not had a break nor do I want one at this point in time. I quit a neuro who decided "his" protocol was to stop Ty at 2 years and this was this past May. I do not believe there is any set protocol.

My veins are not easy to get but my many different nurses do a good job and when one has a hard time she is apologetic. Your nurse sounds like a witch! If it were me I would speak up about her.

Hope you upcoming infusions go much easier and that Ty works well for you
Linda

Grammie: My infusions are going great, the problem was when I had my last MRI.

Thanks everyone. This is why I usually get my second opinions on this board.

Hi Maryann, Congrats on the no change MRI!! I think that everyone's doctor has a different "protocol" ...probably dependent on the doctor's level of aversion to risk. And then it depends, of course, on the nature of someone's MS, how long they have had MS, what their MRI looks like as well. I get the sense that there are still a lot of unknowns with this drug so doctors make their own call. I have decided that I will be going off it soon. I've had 22 infusions now. I LOVE Tysabri but since my MS is mild the doctor thinks the risk is probably not worth it at this moment. I do have to agree. I went on Tysabri because I couldn't tolerate interferons or copaxone and there were no PML cases at that point. Now there are a lot. However, if I test negative for the antibodies (once my clinic gets that set up--hopefully soon) I will definitely stay on the drug. Natalie

according to Biogen: “Accumulating experience indicates that the risk of PML increases with longer treatment duration. In addition, patients treated with an immunosuppressant (IS) prior to receiving TYSABRI have an increased risk of PML; IS use includes agents such as mitoxantrone, azathioprine, methotrexate,cyclophosphamide, mycophenolate and cladribine. This increased risk appears to be independent of TYSABRI treatment duration and is based on the fact that 46% of TYSABRI patients with PML had been treated with an IS prior to receiving TYSABRI. From the TYGRIS Observational Study, it is estimated that 20% of TYSABRI-treated patients (13% in US and 24% in EU) have been treated with an IS prior to receiving TYSABRI. Hence, there appears to be a disproportionate representation of prior IS use in the patients with PML compared to the TYSABRI-treated population overall,
The data indicate that patients with prior IS use have ~4-fold greater risk of PML compared with patients without prior IS use.
Patients with prior IS use have ~2-3 fold greater risk of PML compared with the overall TYSABRI-treated population, and patients without prior IS use have ~50% lower risk of PML compared with the overall TYSABRI-treated population. The US TYSABRI prescribing information now reflects these observations. Nevertheless, the overall worldwide incidence of PML associated with TYSABRI therapy since reintroduction remains generally consistent with the rate previously observed in clinical trials (1). Databeyond 3 years are limited.”

I'm baaaaack!

Had a wonderful time at a week long music festival, hotter than...yanno.
I walked everywhere in 85+ degree heat/humidity. Kept cool with an umbrella, a mister/fan bottle, froze three cases of water bottles for the cooler to keep food cold and drank them ALL as they thawed, wet down when I could and just had a great time!

Spasticity kicked in on the drive home. I have a tiny car and we had all the gear ofr a week packed into it along with two 6 foot plus people, so there was NO stretching room. My leg started spazzing during stop and go traffic on a turnpike. That was no fun but we did a LOT of stretching stops and I made it through it!

Baclofen and Provigil were definitely my friends, but I made it through it all and had fun!

I had #41 prior to leaving, no problems, no concerns. I had the blood draw for the JCV study. Now we wait for results. I'm chanting negativenegativenegative for luck!

Hope everyone's doing well. I'll catch up when I unpack and slow down!