I got my antiblody test from my neuro. He is participating in a special trial. This test is not open to the public yet. I understand it might be sometime in September. Hopefully nnyl1 will be responding to this post, and she has all the latest information on the JV antivirus test.

I've been on Tysabri for about 9 months. I get nauseaus the whole time I am taking the medicine in. I take 2 tylenols and a claritin before I go for my infusion. The doctor gives me an antiacid tablet when I get there. It doesn't help. I haved not notice any improvements in my MS symptoms since being on Tysabri, in fact I had about a month where I suffered a flare while on Tysa bri. My doctor is evaluating my continuing on Tysabri now.

I take alot of other medicines, about 11 in total. I also take magnesium and calcium supplements.

My co-pay is about $42.00.

There is a Tysabri support group here on DS MS group. It's called Tysabri Users. I don't have the web site handy now to share with you but if you do a search on "tysabri users" it should come up. There may be more interesting threads for you to read there.

There is a lot of information on JCV, PML in the tysabri group. as a matter of fact i found another article about PML this morning & i plan to post that in the Tysabri group. I thought best to answer your questions in that group too because it may get long although you asked it in a very logical order i can't gaurentee you get an answer the same way. ;)

Here is a link to it in the Tysabri Group.

http://www.dailystrength.org/groups/tysabri/discussions/messages/12226267

Thanks - I will check out that group.

I really liked Tysabri - I would feel tired for a day or two after taking it but other than that no real side effects.

Unfortunately, I developed swollen lymph nodes. After several needle and excisional biopsies, they determined that the lymph nodes are not cancerous but definately not normal. They suspect, but it is unproven, that it was likely from the Tysabri so I was pulled off and moved to Copaxone and later to Gilenya.

In answer to your questions copied and pasted here....

Did you get the anitbody test and what were the results? NO! thank goodness

How long have you been on it? 2 years this Sept.

Do you have any side effects? No

Did you experience any improvement in your MS symptoms? A little in my walking

What other medications are you taking? Gelnique for bladder urgency

What supplements are you taking? Multi, calcium w/D Magnesium

How much is your co-pay? 30 dollars for an on site doctor (specialist)

I have a wonderful facitlity. Nurses are great! Fun even (if you will). I hope that you have as good an experience as I have!

God bless!
Amy

bumping this up - hoping for more replies

yes, don't know
4 years
no
at 1st many but now just fatigue
Dronabinol
Fish Oil, Mangosteen, Herbalife Formula One nutrional shake made with soymilk
zero

I have been on Tysabri since it has been out. I have no side effects, Since I have been on it I have only had one flare-and that was because I had a urinary tract infection.
I had the antibody test
on it since oh 2006
I have not had any further progression-mri is the same as prior starting tysabri
other meds- Neurotin, baclofen
supplements taking-not really anything- vitamin D3
copay-I have insurance-but I am also on the Tysabri copay assistance program-therefore I only pay 10.00 for the med

I hope this helps

Hi beemergirl
I'm from Aus but can give you my experiances...been on just over 2 years touch wood no side effects..my energy levels do go up a day or so after my infusion I can feel it when I am due for my next infusion ..take high dose fish oil vitd3 magnesium, muti and a mega b
plus other stuff for (other medical probs)
love the fact I dont have to inject its only once month....of couse think about risk of pml.....You really do need to feel comfortable,and updated on everything...but speaking for me I have felt an improvement especially in fatigue.....I use to nap all the time was always absolutely exausted.....
good luck with making your mind up its not an easy one

Did you get the anitbody test and what were the results? got the test, and I do carry the JC virus
How long have you been on it? 3 months
Do you have any side effects? none
Did you experience any improvement in your MS symptoms? vast improvement in leg strength, walking and energy
What other medications are you taking? 5 mg valium, prozac
What supplements are you taking? vitamin D, multivitamin
How much is your co-pay? don't know yet

Tysabri has been a miracle drug for me, and well worth the risk of PML, which my dr assures me there are NO cases of within the first year. There are times when I feel like I don't even have MS anymore, but those are the times I have to be careful not to overdo things like I did this past weekend and ended up spending all day Sunday in bed. Even my dr is amazed at what Tysabri has done for me. I go for my 4th infusion on July 8th, and I can't wait. Dr. says we will evaluate where I am after the first year and see whether or not I should stay on it, but if how I'm feeling now is any indication, I will be on it until something better comes along. Best of luck to you. :-)

That is great news Deb. Thanks everyone.