I am signed up to be Tysabri infusions in the next week or so.
I had five new lesions in a nine month period, so my neuro thought we should be a little aggressive.
I am fearful too, however, I feel that I can atleast due 11 infusions, as no MS patient has gotten PML in that frame. I will decide then if I want to continue or not.
It is a tough decision....there is a sub group for Tysabri users.

http://www.dailystrength.org/groups/tysabri

RelyonHim, thank you so much for your response! Do you know if after using tysabri one can go back on weaker ms modifying drugs? Would they still help?

It decreases your immune response so PML could become a problem. However, your doc should start testing you for PML. Just like the other drugs can cause liver problems so they test your liver enzymes and if you have issues take you off.

Best wishes,
EP

http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/11337630-more-steroids

I just checked another post (URL above) and there is another concern to speak to your doctor about. Specifically, the "JCV virus caused three people in clinical trials to develop progressive multifocal leukoencephalopathy that can cause death in immune suppressed patients." Maybe they can test for this possible issue too.

Thank you EPagain! BTW I found your website exceptionally inspirational ;0) and started working on checking myself for all sorts of allergies! With regards to tysabri that JCV virus thing, it's not really can-be-deadly type, it is fatal (there is no known cure for that) and only about 5% of people live up to 12 month, majority only live up to 6 month (in a shape that can hardly be called living ;0/ Hence I find it very difficult to make that decision.....

And scary thing is, we all have this virus! Our immune system is the only thing that keeps it at bay and if it becomes too weak this virus in question is unleashed and one dose not stand a chance of survival. It's such a paradox, we carry inside ourselves chemicals that can easily destroy us (jcv, gamma interferon etc.)

to answer the question you asked of Reyolin--sorry for butting in she was doing great, i just happened to read it.

yes you can go back to the standard drugs, new oral drugs or a stronger immune suppresant like cellcept if you want

tysabri should always be used before a person uses a immune suppressant..

once tysabri is started, some people have an infusion reaction or get an increase infections, the doc decidesit would be better if they stop using tysabri and they go back to a dmd.

there is a risk of the rebound affect when stopping tysabri-which can cause a persons ms to be more active for a while after stopping Ty then when they stated tysabri---so its important to start a med immediately after the washout period when stopping tysabri.

about 40% of people will have a rebound affect when stopping tysabri. it seems to occur about 6 months after stopping tysabri for the people who get the rebound affect,. When it happens is more likely to occur when tysahbri is stoppred between 12-15 (?) months or somewhere within that range.

thanks lynn....
you definitely answered that better than I could have. I am just starting this Ty journey. I talked to the Ty case worker today....they have the insurance info, so just waiting to schedule my infusion.

Question: I am going on vacation Feb 10- Feb 18th....should I get my first infusion in the next two weeks, or just wait until I get home? Would I have many side effects that would keep me from traveling? We will be driving, staying at hotel and etc...

nnl1 - Thank you my dear!!! That is an incredibly useful peace of information!

:) Reylon, i'm glad you have the paperwork done. I would be more likely to schedule the first infusion after your vacation.

After the first few infusion a person is incredibly sleepy. it actually is a very pleasant relaxed feeling,if you can just go with it. for the people who plan things right after the first few infusions, it rather stressful. So schedule an extra amount of sleep time for the first week after the infusions at first.

You never know how it will affect the person--you may or may not have this effect. I remember that relaxed feeling, and wish i could have it back sometimes.

and tysabri makes my period more difficult. it affects some woman that way..it was even noted the trial.and it affects me that way :(

i was so excited to start ty, i started the first day my doc said i could. which was during my period. then tysabri is on a 28 day schedule so it stayed the same as my period....until more than a year later i went to 6 month infusions to get them separate--i'm really glad i finally did that!

I would schedule after your vaction and after or near the end of your period.. if my ty infusion is before my period, my peroid is much worse. make sure you are well hydrated before yo go to the infusion and eat something light before you go to the infusion. an empty stomach really has caused infusion discomfort in many-not me but that not being well hydrated was the one that got me.

you might want to take some claritin tablets before you go, because that is what they will give you for any jnfusion reactions like hives. maybe you can avoid it by having an anti hystamine in you the first time you get a ty infusion. but i do use claritin daily anyway & i think it helped.

6 week infusions not 6 month infusions

thanks.....

why did you go to every 6 weeks for infusions instead of 4 weeks?

just to get my period separated from my infusion. it was best if my period happened the week before my infusion--so I went to 5 weeks,actually not the 6 i wrote incorrectly, until my period was the week before.

I had the understanding that it was ok to schedule an infusion up to a week after it was due, without needing the doc's permission. so i did that until they were in order.

i have thought about going to 6 week infusion, because some do that in the hopes that it reduces the PML risk. I had planned to talk to the doc about it, but i never did. i just did 5 weeks to get my cycle in a better order with the infusions-that i didn't have to talk to the doc about.

now I just read that the risk might decrease after 30 months...next week I go for my 30th infusion. so it looks like i passed through the highest risk time unscathed. :)

with the announcement that 6 more PML cases had occurred in dec, with no new deaths, biogen also said the risk appears to go down after 30 months & that's were I am at :)

it said....

The risk generally increases with the number of monthly infusions that a patient receives, but that rate appears to drop after 30 months of use. Biogen warns that the drop is inconclusive, because there aren't enough data from patients at the longer duration to have confidence in that finding.

http://news.morningstar.com/all/dow-jones/us-markets/201101201805/000623/biogen-six-more-cases-of-brain-infection-in-tysabri-patients.aspx

months and infusions get confusing. with a 28 day infusion cycle-- a year has 13 infusions but 12 months.

I'm going for my 30th infusion but it has been 39 months since i started Tysabri.(Oct 08)

i save all my appointment cards that they give me when i schedule the next infusion. I write what # infusion that is on the card. then i tape the appointment card to my printer so i don't forget the time i'm suppose to be there.

I write on the back of the card any difficulties or unusual stuff that happened during the infusion or after ..lots of notes on the back of the cards when i was so tired & figuring out that it was the infusions made that made my period more uncomfortable... not many notes after that. it helps keeping track of how many infusions it has been, if i write the # at the top of each card.

the first infusion center I went to, i was their first person using tysabri--not knowing any difference, they just scheduled my appointment monthly, the same day every month- not every 28 day. When they started scheduling it at 28 days,the same schedule as my period, I realized it made a difference for me. at least when it was the same day every month they weren't always the same.

between the first infusion center scheduling monthly and my deliberate scheduling at 5 weeks, i have only had 30 infusions in 39 months. but it should have been 42 if i had followed a 28 day schedule the entire time.