Jcv

[luvhair]

Is it normal my jcv levels are goin down ..trying to get ahold of dr about this does anyone knowmm

[Jesmcd2 CommunityAmbassador]

Hi luvhair I don't have an answer for you. But I'm here with ya! 🤗💕🦈

I hope you get an answer soon!!!

[luvhair in reply to Jesmcd2]

Thx you..yea i think it mite be a good thing its going down idk..im praying she always puts a smile tht its going down on papers she sends me i just wanna know why and how ya know..

[ahrogers]

I have heard the level can change both up and down. I only had mine checked once when first diagnosed to decide which DMT to choose. Since Ocrevus didn't have the PML risk I didn't need to repeat before switching.

[luvhair in reply to ahrogers]

Thts awesome..yea i wont ever risk takin any ms meds the risk n side effects she said would be worse than disease itself!

[CalfeeChick CommunityAmbassador]

I've only been tested one time and never again. I don’t have an answer and hope someone can help you. You might find some answers on the MSAA site. Keep us posted & hope you get an answer.

[luvhair in reply to CalfeeChick]

Ok ty yes its blood woork the Elisa test is what they are testin now..i guess its a good thing i stiil dont know

[ahrogers in reply to luvhair]

Why are they testing you if they aren't going to prescribe a DMT? I didn't realize there was another reason to be checking.

[luvhair in reply to ahrogers]

Because of how bad my symptoms were gettin..2 years ago..i have 7 autoimmune diseases..so cant be on alot of some meds because its just not ms meds tht can be a risk..chrons infusions are a risk..some ra meds are a risk

[ahrogers in reply to luvhair]

That makes sense. I didn't know if maybe I should be tested again.

Thanks!

[luvhair in reply to ahrogers]

Ok ur welcome xo

[Nikkijean2]

What are the jcv levels??

[luvhair in reply to Nikkijean2]

Wow it was really high 2 years ago i have to look but in 6 months its went down 60 so its 105 now which i cant believe its goin down..do you have it

[Sukie427 in reply to Nikkijean2]

John Collins Virus. Your neuro should test you for JCV antibodies (which means you have the virus) and while it's basically a dormant thing, those positive for JCV are more prone to a brain infection called PML (having cogfog and can't recall what that stands for at this moment) but it's a form of encephalitis that is almost always fatal, and if it isn't, you wish it had been. Certain DMTs can cause PML and the risk is higher in those positive for JCV. The level of antibodies present in your body can be higher or lower, depending on what your JCV viral load is. I don't want to pick on an y particular product because Tecfidera, which I have been on since 2014 when it hit the market, can cause PML (rarely) but Tysabri seems to be a DMT with a higher risk of PML. My neuro would never use it with me because I am JCV+. Although I do know some people who have been on Tysabri for years who are JCV+ and have had no problems. Your neuro just needs to monitor you closely if you are JCV+ and on a DMT with a PML risk. I wanted to switch to Ocrevus because of the PML risk with Tecfidera, but I have a hx of liver cancer at age 19 and he didn't want to switch me to Ocrevus because of that. Using the risk:benefit analysis, he thought that the risk of liver damage from the Ocrevus outweighed the risk of getting PML from the Tecfidera.

[luvhair in reply to Sukie427]

Yes its antibody..mines positive

[LCAL in reply to Sukie427]

JCV is John Cunningham virus

I remember it because it’s my bff dads name. Lol

[Sukie427]

Don't know, but I think mine went up....

[luvhair in reply to Sukie427]

How do u know

[Sukie427 in reply to luvhair]

I had another test two years ago with my neuro in AZ--6 yrs after my first one

[luvhair in reply to Sukie427]

Oh ok i see

[kdali]

Yes, it’s a good thing.

[luvhair in reply to kdali]

Yes it is