Jcv Postive...to proceed or not?

[myeber22]

So I just got my blood tests back and I tested positive for the jcv virus. I have already tried betaseron and copaxone with no success. I am 28 years old and the dr stated with the amount of active lesions in my brain and spine that this is the way to go. He feels if its not taken care of aggressively that I will be disabled in a few years. I have weighed the pros and cons and I feel that this is my best option. I only have 1 risk factor of the of 3 so getting PML is still pretty minimal.

Does anyone else think I am crazy or feel the same as I do?! I've been getting snide remarks and horrible feedback from family but I also feel like they dont take anything else into consideration except for the possibility of contracting PML. Any help or suggestions would be greatly appreciated.

[LL60]

myeber22,

Welcome.

Boy, you are in a situation that many of us have been in. All we can do is share our own experiences. MS is so different for each person, and the medications that treat it can be so different in each patient.

It sounds like you have done your research and mainly just want to hear from others in the same situation?

I have been on Tysabri for years after having a septic reaction to Copaxone. I have no side effects from the infusions after a few bad headaches the first couple of months. I am a person with tiny rolling veins and sometimes have to be stuck a few times before they can get in, but I have learned to ask for a heating pad, drink a lot 24 hours before and do weights with my arms to build up my veins too.

I found out in September of last year that I was JCV +. I found out in July that my number was 4.1 for the titer test they can now do. I get MRI's, not on a schedule, but more often than every 12 months. I am very aware of what is going on in my body. I have never taken any of drugs on the list of immunosuppressants. So I have 2 of the risk factors, plus having a fairly high titer count.

The fatigue I have at times is overwhelming. The heat and humidity do me in. At times I have some minor cognitive problems. I stumble at times walking, but have not fallen in years. I use to have a problem with what may be the "ms hug" that was some of the most painful times I have gone though. Have not had one of those times in over 3 years. They were coming about every 6 months.

For me, Tysabri has been almost like a cure. I have a new normal state in my life, but it is very doable. I continue to work. It's hard at times, but so far that to is still doable. I just could not go backwards. I lost my ability to use my right arm, and on 3 different occasions, my left arm. I have fallen many times and have the scars to prove it. My cognitive abilities were to the point where I was almost fired from my job and was hospitalized many times for related problems. I just can not go back.

My family was against me starting Tysabri. They now see the real change in me. I share information with my husband as it becomes available in bits and pieces. I don't scare easily, he does. Most of my family and friends - we don't really talk about the ms. Because of the Tysabri infusions, ms is not a big part of my life, so it is not a big topic when we get together.

Your first year on Tysabri is almost - almost, no guarantee, a free year. So why not start it and if you are one of the ones with good and even great results, you family can see the difference and be more supportive.

Being in your 20's is a factor. I am in my 60's, so may make different choices for different reasons. I can say 100%, I made the best choice for me. Even if I get PML, I would do it again. I have enjoyed 6 years with grand kids, that I never ever would have been able to with the infusions. I hope to have many many more years enjoying all life has to offer to the best of my abilities.

I do think about PML. Each month when the new numbers come out. I wad hoped I would be JCV -. I wasn't. I had hopes that my titer numbers would be low. They weren't. I made a informed consent to stay on this drug. For now. With the information I have.

I don't have a lot of choice to go on anything different. And why try the unknown when I am on a drug that is proven for me.

If you have a specific question? I hope a lot of people here weigh in on their thoughts. This isn't as an active site as it use to be. Don't know if people are stopping Tysabri and on something different, or if people just are content with their decision and have no need.

I just learn so much from these boards. And "you guys" are the only ones who really understand what an ms day can be like.

[lindaincolorado]

Hi myeber22, I have been on Tysabri for 7 years way before they knew to test for jcv. I knew what ms could do to me and thought that risk much higher than that of pml.

Ty has stopped progression - Thank G-d - given me a decent QOL !! I am very grateful to this med

You have approx 2 years with a very low risk factor for contacting pml. I would find out what the number is not, just that you are positive for the jcv. Then at around 2 years and knowing the number, of course, seeing how you are responding to Ty. I, also, would get as much knowledge as you can about all the meds especially Ty. You, also, say your Dr wants you on Tysabri.. This all is in my opinion

Good luck and my best wishes,

[MSW1963]

I totally agree with LL60 and indaincolorado. I would only add to the discussion the risk of MS Rebound associated with stopping or interrupting Tysabri infusions. I interrupted Ty infusions for a few months and had significient regound/MS progression during that period.

Rebound aside, I've had great success with Ty, and couldn't agree more about staying on it versus changing to a new med with side effects that are not fully realized.

Also, I was dx'd much longer and older than you are now when I took the plundge and started Ty infusions.

Good luck and take care.

[palmtree]

I don't know what the risk number is for people who are JC positive. But if you don't stop the MS your risk is near 100%.

I am in a similar situation. My MS was progressing so fast that (risk or no risk) I had to do something to stop it. I just finished 3 years and my MS has stopped progressing. My doctor offered the JC test but she said, "if you get the test and it comes back positive, what can you do? Worry!"

I told her I want to stay on Tysabri anyway. So I'm not getting the test. I've made peace with the possibility that I might ge t PML. MS is too scary. I'm willing to take the risk.

So if you decide to go with Ty, you are not alone. My opinion: go with Tysabri. It's a chance to get your life back. When it comes down to it, the most important thing is to do what's in your heart. What others say doesn't matter.

[KatieAgain]

I was negative two years ago but decided not to start Tysabri. I just retook the test today and am starting Tysabri whether I am positive or negative. Because, now is the right time for me to start.

It is a very personal decision that only you can make. For me, and I am 50 years old, I can not handle any more MS Progression. So, I am starting Tysabri and will reassess in a year or so.

Good Luck with your decision.

[jiljb]

It is such an individual decision but I will tell you what my experience has been. After switching neurologists several years ago my new doctor (an ms specialist) suggested I switch to Tysabri because I had one new active lesion while on Copaxone.

I took his advice and had been on Tysabri for about 4 years (with no new lesions and minimal progression of disease), when he suggested I go off Ty and switch to Tecfidera due to being JC positive and having been on
Tysabri for 4 years.

I took his advice again. I was off Tysabri for a little over 2 months before trying Tecfidera for about 8 weeks. I was unable to tolerate the gastro side effects of the Tecfidera so decided to discontinue and look for another med. My neuro said we could retest for JC virus and see how high my numbers were. I agreed as at this point my MS seemed to be progressing rapidly ( I started using a cane).

My numbers came back low (.55) so I decided to restart Tysabri. I am hopeful to regain the energy that I had while on Tysabri previously and hopefully get back to where I was before I went off of it. If not, I know that it is my best shot at keeping the progression of this disease at bay for as long as possible. I don't like that my risk of contracting PML is about 1 in 2,500 but I can see where I am headed without a good disease modifying med. I know that for now Tysabri is that medication for me, despite the risk.

I wish you well with your decision and hope that you can have many years of symptom-free MS.