jc virus positive

[JerryD]

This jc virus story has been around for a couple of years. I think this story has been around a couple of years. The story was about a patient who died who was on Tec. It was discovered, upon further review, that the patient had low WBC for a long time.
It is good that you said that you were going to 'read up' on this.

[rsinger]

jc virus

Check out Wikipedia. Very good explanation about the virus. About 3/4 of the population will test positive for the virus but will never be effected by it. When the immune system is suppressed the virus can be reactivated and cause PML.
The most recent death of a patient taking tecfidera was due to severe low lymphopenia for about 3+ years. This was certainly a very unusual case. Most patients are being followed closely by their neurologist with blood work being done annually or at 3-6 month intervals.
Speak to your doctor about having the jc virus blood test. Depending on the results you and your neurologist can come up with a plan.

[Marco]

My neuro-ophthalmologist alerted me to the JC virus news so I will have that test when I see my new neuro in January.

I do not know my status currently, haven't needed to know in the past. Need to have my research done on this topic so I can ask intelligent questions in January.

Toomny - I'm glad you have a desire to become better informed. The JCV is extremely common; infecting 70-90% of humans. A normal immune system is capable of keeping the JCV dormant, or prevents the JCV from reactivating. When an immune system is seriously compromised or suppressed the JCV can reactivate. Once reactivated, the JCV will mutate and can eventually manifest as PML. Blood monitoring allows you to keep tabs on your immune system and ensure it doesn't drop too low, increasing your risk of PML.

From Tysabri, we know there are a few things that can increase your PML risks:

• the presence of the JCV
• prior immunosuppressant use (roughly 50% of MS patients that contracted PML while on Tysabri had prior immunosuppresant use)
• the time on therapy (in this case, Tysabri) that is suppressing your immune system.

If you get sick (pneumonia, persistent cold, shingles, etc) or lose blood (car accident, surgery, etc) you should contact your doctor immediately. These incidents can hinder your immune system leaving you more vulnerable to PML and other opportunistic infections.

Currently, Biogen is not paying for the JCV tests for Tecfidera patients. They are paying for JCV tests for perspective, and existing, Tysabri patients.

[pballer76]

My lymphocyte counts are low

I have been on Tec for 6 weeks now.
My Lymphocyte count went from 42.5% to 5.8%.
Absolute Lymphocyte went from 1.91% to .35%

The first time I was on Tec my Lymphocytes didnt drop this much. The crazy part about is my WBC count went from 4.49 to 6.08. I do have a sinus infection so thats probably why my WBC is up.

I just saw my neuro and he order a MRI. He is also checking with my MS specialist about whether to continue the Tecfidera.

I think it was 4% of the clinical trial had a low lymphocyte count. I have some bad luck.

How low is too low for lymphocyte counts?

[nosrepmodnar]

I don't see biogen recommending a jcv test. If they did they would have to follow with a dont take ot of youre positive recommendation.
If your worried and your neuro won't script the test then to you should get a new neuro.

[mobee41]

JC Virus

I was positive for JC and switched off of Tysabri back in 2010 bc of it. I will have to research on this, and I hope this shouldn't cause much concern. My appt. with Neuro is in January so I will definely be bringing this up. Has anyone else got any feedback from their Neuro?

[goblue]

I have been on Tec for 6 weeks now.
My Lymphocyte count went from 42.5% to 5.8%.
Absolute Lymphocyte went from 1.91% to .35%

The first time I was on Tec my Lymphocytes didnt drop this much. The crazy part about is my WBC count went from 4.49 to 6.08. I do have a sinus infection so thats probably why my WBC is up.

I just saw my neuro and he order a MRI. He is also checking with my MS specialist about whether to continue the Tecfidera.

I think it was 4% of the clinical trial had a low lymphocyte count. I have some bad luck.

How low is too low for lymphocyte counts?

My lymphocyte went from 1.7 to 1.0. Neuro is not concerned, but said if I get down to around. .3-.4, then maybe consider stopping for awhile, or switching.

[dachshundmama2]

JC antibody +

Hi. I was informed by neuro's nurse, that at my last checkup I was given the JC virus antibody test and that I tested positive. I thought that one only needed to be tested if trying to switch to TY. I was diagnosed in 2006, and the only thing I have taken is Copaxone/ Ampyra was added a year ago, and have not had to use a cane since. I was told a new MRI has been ordered, and that there is no reason to be alarmed, that it is just additional information for my "long term care plan". I am very scared, as I have read way to much about PML back when we were selecting a medication in the first place. What to do now?

[Marco]

Call the nurse and ask what your lymphocyte count on your last CBC were. If they are low you may need more frequenst monitoring. If they remain low your doctor needs to talk to Biogen. If your lymphocyte counts are closer to normal, or normal, your statistical risk is considered low. The highest danger happens when your lymphocyte is abnormally low for a prolonged period of time allowing the JCV to reactivate, modify and eventually cross the blood brain barrier. This process take time, so it's important to talk to your neurologist about your concerns.

I am JCV+, and have nearly 2 years on Tecfidera. For me personally, I'm not going to worry, unless my lymphocyte counts are critically low through multiple CBC tests. Even then, will simply request more frequent testing while continuing to take Tecfidera. It's certainly a personal decision how much risk you are willing to accept. I am glad you are getting better informed and hope your neurologist will spend time addressing your concerns. I wish you well.