DMD's

[candy158]

Hi guys, yeppers, it is me again.

Just some comments and hoping a good story from someone.  I  found out today that I am JC positive ( don't know numbers yet, as nurse wants Neuro to tell me)

There was apparently a note on my file that if it was positive that I was not to go on Tysabri.  We never discussed this with her, and if the numbers are high of course I would not try it.  , but, I know of people who are positive and low numbers and have done very well on Tysabri.  I just want o give it a shot.  I have to wait now till Wed. when my neuro is in and the nurse will chat with her as to what to do.

Neuro actually did say that, Tysabri would be looking at an MRI and if there are active lesions then it would go, but if not, they may not approve this.  So, there is apparently no appreciable change since 2012, but the cord is thinning and flattening C3-6 , but again no enhanced lesions.

So, they think I am stable, so if that is the case, would this not be a good time to take something to keep me stable, especially since we have a new 3 month grandson and 4 yr. old grand daughter. ???

I'm kinda ranting, I'm sorry, but I don't know where to go from here if the answer is NO !!  I don't want to try Gilenya as I have heard alot of negatives on it, as well as the Lyrica, and Humira which are basically the same drug, apparently but  are used for RA, and Diabetes, and nerve pain.  

I'm at a loss, and again, feeling discouraged. ..... here we go again, !!!

thanks, should I be upset, or jumping for joy, I don't know !!!

Candy
:(

[candy158]

thanks JJ and Sarah, I will keep you posted !!!  

[SarahL2491]

It will all depend on your JC number.  Mine is still less than .50 after 3 yrs and as I've said, I was positive before starting Tysabri.  Half the population, if tested, in the states would show positive.

Take a deep breath and wait to talk to your neuro….I got the same "as nurse wants Neuro to tell me" from the nurse too…..in fact, well, I'll tell you about that snafu later…..

[supermum_ms]

Hey Candy, I'm not actually sure you would be a good candidate, not only because of being JCV positive putting you in the higher risk category but because of the higher rate of urinary track infections and your history of infections. See below the linc from the national MS society for the doctors prescribing information to get a full picture of the known issues and if it is worth trying or not.

http://www.tysabri.com/prescribingInfo

A lot is out there regarding the risks of PML but most is in regard to people already on Tysabri and then becoming JCV positive, not much actually discussed risk prior and choosing it. All i can surmise is possibly patients and doctors are not choosing Tysabri when they their is a high risk factor.....    

"For JCV antibody–positive patients with no prior immunosuppressant use, the risk for PML increased with longer natalizumab use. For 1 to 24 months of exposure to the drug, the risk was 0.6/1000. With 25 to 48 months of exposure, the risk increased to 5.2/1000, and with 49 to 72 months of natalizumab, the risk was 5.4/1000. Patients who were antibody negative had a risk of 0.07/1000."
http://www.medscape.com/viewarticle/806294

I would do some reading, gather a list of questions and then discuss it with your neuro, consider discussing it with your family if Tysabri is still a possible option for you, but your choice may take some serious thought which may take a bit of tooing and frowing, before you are even at the stage of decision making......one step at a time

Hugs.........JJ