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**0485c10** · 10-03-2011, 06:57 AM

Hi Punny,

I've watched your post since it got here and no one answered, perhaps you should reframe it to something more common that people could answer?

I've used Tysabri for 36 infusions. about 3.5 years?
When i started is in my treatment description below. At my last 6 month appointment, i requested to go down to 6 week infusions because i get so darn tired with the infusion, i never got the energy that other posted about.

I thought it might have something to to with my hormone cycle, them both being on 24 day cycle. i thought it it might be because i wasn't drinking enough. I played with 5 week infusions & drinking more to see getting it off the same frequency as my hormone cycle would help. I didn't find any thing. Drinking more helped. After 2.5 years i asked to go to 6 weeks to buy a few more weeks in the month were i felt good. It worked well for me. At my most recent appointment with the doc I told her I want to stay at 6 weeks and maybe switch to something else because I have read the inflamation stage of MS ends for MOST in the late 50's early 60's. I'm 48. I thought it was time to go to something less effective so i could stop altogether once i got to my late 50's. small bumpless transfers down through the steps. i worked as a control engineer in my past life...bumpless transfers are good.

she said she would prefer i stay on tysabri until i have had 5 years relapse free. my last relapse was 1.5 years ago, so i will stay on tysabri at 6 week infusion cycle for 3.5 moreyears. And then see how everything looks from there.

I do not know my jcv status as my doc will not test for jcv until it is approved by the fda until then she said she will make no treatment decisions base on the jcv status. She told me right now the doc's at the clinic are more concerned with someone ignoring symptoms of PML because they have a negative jcv status, or causing unneeded anxiety because they have a positive jcv status and she would not change her treatment decisions because of a positive status..she trust the touch monitoring program more than the FDA unapproved jcv. When the fda approves it she will use it then.

there were some articles on the ty "holiday" if your interested in reading those. Mostly the ty 6 month suspension has been discredited as being useful.

http://www.medpagetoday.com/MeetingCoverage/AAN/25882

http://www.internalmedicinenews.com/...9f8d81052.html

**REG53** · 10-03-2011, 05:24 PM

Hello Punny,

I am jcv pos. I have gone for 55 mos. none stop.

**MSW1963** · 10-03-2011, 10:33 PM

Hi Punni, glad to hear you found TY a good fit. I started Tysabri this January so I really can't answer your question. My doc has not discussed a 6 mo interruption in my infusion schedule. I recently found out that I am JCV positive from the neuro's assistant.

I have had huge improvement in a couple of my big ms sx's, I'm thrilled to be sleeping again. But increased fatigue has been a set back since I started TY.

**Aslan** · 10-03-2011, 11:58 PM

Infusion #51

Hello Punny:
I will have infusion #51 in a few weeks. My neurologist at Baylor College of Medicine has also been called "Dr. T" due to his research and expertise with Tysabri. No medication vacation has ever been recommended, but then, I'm doing very well on this medication. Actually, my only complaint is that I have to wait 28 days between infusions. I experience a noticeable drop in strength and energy levels around day 25 or so. Not interested in the JCV test. We discussed it, and agreed that it really doesn't have any value for me.

Best regards,

**lindaincolorado** · 10-04-2011, 11:29 AM

I have gone 5 years non-stop! This Fri will be my 60th infusion

I am jcv+ My now Dr is at the Rocky Mtn ms Center. I am so happy to have found a Dr with more ms knowledge than me

**Punni** · 10-05-2011, 12:15 PM

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Thank you all for sharing your thoughts, very insightful.

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