Tested Positive to JC Virus

[cocogirl]

I went to the neuro yesterday because of some flaring I was having. They wanted to check me before okaying me to have infusion or so I thought.

Good news, it seems to be a flare and not an all-out exacerbation. Bad news I guess, I was told that the blood test showed I am positive for JC Virus.

Once again, I told them that I would stay on the Ty. I very well could have been positive all these 31 infusions and didn't know it because I wasn't tested before last month.

All I know is that I have a quality of life that I love and don't want to give that up again.

I have a higher risk of a major injury or death everytime I get on the crowded Houston roads.

While I was there I was informed that the incident rate actually fell to 2.5 from 2.8 for positive testing people. This is the latest as of Monday evening.

I am close to coming out of the most dangerous time frame but even that doesn't come into play in my decision to stay on the Ty.

I know my eternal destination and have no fear of death. I am not too fond of the dying process but death doesn't scare me. My decisions are made in total peace and confidence because of my faith.

It should be a very interesting time ahead.

I know that there are several from my clinic that have stopped Ty because of finding out they tested positive and I wish them a well life ahead.

Each persons decisions is just that and I applaud everyone's ability to decide what is right for them.

Those of you who are believers in the power of prayer, please continue to lift me up and I will do the same for you!

Patti

[0485c10]

While I was there I was informed that the incident rate actually fell to 2.5 from 2.8 for positive testing people. This is the latest as of Monday evening.

this is what i am expecting to happen all year as people who have previously been on an immune suppressant don't start ty or d/c ty along with some jcv+ people who decided the risk is too much in their personal benefit-risk analysis as the risk becomes "stratisfied". i suppose as the risk goes down it will encourage more of the higher stratified to continue, so it might be a roller coaster for a few years...but just like gas prices we will get used to a higher risk level that is still low.

if in 2004 they had re approved ty with a 2.5 in 1000 risk level that would be our marker.

like the gas prices $5 a gallon is still high where i'm at, but who would have ever thought we would consider $2 a gallon low? $4 is just normal, nothing to cause any attention who could have predicted that when we were paying less than a dollar for a gallon of gas?..that it would be this high in the future.

[0485c10]

Just the trend changing from upward to downward is welcome news. we are alert enough, look for trends changing on the economy causes positive consumer confidence that ends up effecting the economy again. kind of optimistic that the effects of the great recession will come to an end.

[Lendi]

CoCo, it sounds as though you're at peace with your decision. Congrat!

I'm pretty sure I'd be right there with you if I were tested pos although I can't say for sure. Anyway, if I were't on TY I probalby wouldn't be on anything. That, for me is scarier.

[0485c10]

I don't think swearing allegiance to any med is healthy i always keep my eye open to what coming on the field--and the next big one will be lemtrada at 80% effective compared to tysabri 60-70% effective.

roughly it sounds to me it has very serious but treatable, not curable side affects, treatable, side affects that have a greater % of happening than tysabri PML which isn't treatable. lemtada has greater efficiency with its greater risk of treatable serious side affects..

reported today in Medcsape Today in an article called
Update Shows Higher Incidence of Natalizumab Associated PML which reported the presentations at Consortium of Multiple Sclerosis Centers 25th Annual Meeting. June 7, 2011 (Montreal, Quebec)

they report the risk is going down which is mostly because people got cold feet and were getting off tysabri after 3-4 years. but it is going back up as people are reassured and remain on Tysabri. the overall length of time continues to hold and likely a person will just have to choose when the risk is too high for them 1,2.5,5,8,10? maybe the risk of natural death will have occurred before TY-pml risks gets that high, a person will outlive the risk getting that high. we'll see.

[cocogirl]

I have done Avonex with liver getting a little toxic after 2 years so dr. took me off.

I tried Copaxone and had a serious allergic reaction requiring immediate intervention. Dr. then tried me on BetaSeron which I had milder but bad allergic reaction, no not the red swelling at injection site reaction but a true allergic reaction.

I have had prednisone numerous times in the course of 30 years for the M.S. but in 2004 I developed a true serious allergic reaction with the dr. present. I know that it is used to treat allergic reactions but I am truly allergic to the med.

I am so thrilled to be able to take Tysabri without allergic considerations that I really don't want to consider anything else. I will take my chances and risks with Ty.

[Scooter24]

I would much rather take my chances with Tysabri than to under go another chemo treatment of any kind, also lemtrada sounds to me like it could be just as dangerous, with a poss side effect of causing cancer, as a male I already have a 50% chance of getting cancer and already have and beat it once, and since I am HPV virus positive my chances increase. You think MS and its treatments are bad you have no clue what you will go thru with reg cancer treatment of Chemo and radiation, I am still trying to recover completely from it after 2 years and some of the problems will never go away. I have not had any sweets such as ice cream, chocolate, cake, cookies since as my taste buds are fried and all of those foods cause my mouth to burn as I they had hot sauce on them.

I'm sticking with Tysabri.

[cocogirl]

Scooter, I agree completely about the Ty over the regular chemo and radiation for Cancer. My dh just died after 2 years of battling esophageal cancer. I don't want to see anyone go through what he endured.

I am sorry that your tastebuds have been fried. I have known several that had this happen, my MIL for one, and it was awful for her and the others.

I will take Ty over all the rest of the drugs out there for MS. I do keep my eye out for new developments though. Maybe someday they will discover the gene that is involved in this thing and we can get gene targeted therapy. I don't know that it will occur in my lifetime but someday perhaps a real cure!