Tysabri: Positive for JCV

[LL60]

Tomjadg,

Good luck with the news meds. Please keep posting here if you will so we will know how you are doing with life after Tysabri.

What pill are you on? Did you do a wash out period? What were the shots?
Sorry to be so nosey. Just curious about what people do after they stop Tysabri.

My doctor has brought up Rituxan. But.........I don't know.
Still fighting the fight.

Keep a good attitude. Other meds work too.
Glad your last shot is tomorrow.

[Tomjadg]

Hi LL60...not being nosey at all.

I'm taking a kind of steroid shot 5 days, once a month. My wife has to do it because my hand can't do it. It just goes under the skin, and the first 5 have been no problem.

I think they are going to start me on Aubagio pills. One each day. I have to call my nurse to update things with her.

Yeah, it's just continue on, and hope something works. I'm not holding my breath, because after being told 4.5 years ago I was RR, I decided 2 years ago I was PP since it has been a steady decline from day 1.

They still left the decision up to me, but strongly suggested the change. They were right.

[22cyclist]

I went to my neuro's PA today and asked for some Valtrex, she flatly said no. That has no effect on the index its a herpes drug. I think she needs to read up. So in the morning I am calling hospitals in search of those that do use Valtrex for high titers. I am at 3.5.

They gave me the option of staying on with MRIs every 3 months or, Lemtrada (but we don't know if that causes PML yet). She did recommend another chemo drug though, Mitoxantrone.

Good Grief

Lisa

[Kimba22]

Sorry, Lisa. I hope you find someone that uses Valtrex.

Best of luck ,

[rsinger]

JC Virus

Is there any scientific evidence that antivirals do affect the JC Virus titer. If so I would like to research it. I can't seem to find any literature that speaks about this. Sometimes it's just a coincidence that may occur. I think it is interesting that my JC Virus titer dropped during the time I was taking Valtrex. Is this just a coincidence?
So many knowledgeable people on this site. Hopefully someone has some interesting info.

[KatieAgain]

I wish Myoak was here. I miss his informative posts. He is certainly the expert on Tysabri. Where is Myoak? I miss him. Would not blame him for leaving...but I miss him...read every single one of his posts.

I don't think there are any published reports on JCV and antivirals. But honestly, if I go positive, I certainly will be asking for them.

I went through a period of getting canker sores in my mouth...very painful. They gave me antivirals. It worked. And anti-virals are not the regimine for canker sores. Its usually 10 days of pure pain and not eating.

So Katies opinion...and its not worth much is, its not a coincidence that antivirals could possibly bring down the JCV Titer. Now whether it could produce a false reading or not...I don't know. Pure specuation on my part, but worth the try.

Lisa, try your PCP for a prescription. Anti-virals are not a contradiction with Tysabri. You could tell them the stress of your marriage is causing cold sores and canker sores. Geez...its not a controlled substance. If Nexium can be purchase OTC, so should Valtrex. IMHO.

I also am suspect of your high titer. Titers from what I read usually go up slowly. If you were negative a year ago, became positive in between...thats a high titer over a year. You might ask for a retest.

[LL60]

Yes, there is information out there on antivirals and using them while on Tysabri. Give me a few minutes to find them again. I sit and read articles on my phone at night. Research started in treating HIV patients, who are a risk for PML and who take antivirals. In fact in the beginning when I would look for research on PML I was sent to mostly sites on AIDS.

Your titer numbers go up and down. Mine have gone up and down over 2 points and more.

Lets just keep sharing information. I went to a talk that Dr. Vollner did (think I spelled that right), who is with the Rocky Mountain MS Center in CO and he said that we can't expect our doctors to be up to date on everything MS, that information changes very rapidly. That we have to be our own researchers and advocate for our treatments with their guideance. He said no doctor should get defensive when we bring in articles and not have a problem about answering our questions.

But it is a lot of work getting though some science articles, especially if they are not indented for the lay person. It's worth it. If you have the energy. I would have been taken off of Tysabri years ago if I hadn't been prepared to state my case. I may be losing the fight, but I had 6 great mostly symptom free years. I can't regret that. But it has been exhausting and overwhelming at times fighting the fight.

Okay, let me search for those articles.

[LL60]

"Data from studies demonstrated that CMX001 selectively inhibited the replication JCV, the cause of potentially fatal progressive multifocal leukoencephalopathy (PML) in immunocompromised or immunosuppressed patients. "With cases of PML on the rise due to increased use of immunosuppressive drugs used to address autoimmune diseases, we're are particularly pleased by the noteworthy in vitro activity observed against JC virus." This is an antiviral drug that I read about a few years back. I gave information about it to my doctor and he found that it is still in clinical trials. But I have found articles that this would be an antiviral specifically to get rid of the JC virus and is used in patients who have developed PML along with Mefloquine that is an antiviral used to treat malaria.
The name of the article is: Chimerix Antiviral CMX001 inhibits JC Virus Replication in Preclinical Study

This is not the article I took in. This is just the first one that popped up in my lists of ones I have read. It is hard to wade though, I have read much easier ones to understand. I will look for them also, but I have to leave for work now.

Just type in antivirals and JCV and antivirals and Tysabri.
There is also some good articles on research that there are theories that MS has a viral cause. That would make sense to be on a antiviral drug.

[allHailye2]

is valtrex something u can take regularly? i know it's usually given as a 10 day regimen.

[Tomjadg]

Ty update

[QUOTE=LL60;1473257]Tomjadg,

Good luck with the news meds. Please keep posting here if you will so we will know how you are doing with life after Tysabri.

Hi LL60

Just wanted to let you and others know, I just got the paperwork to have blood drawn and tested before I start the pills. The pills were approved by my insurance, so I expect to start them in the next week or two.
I have been off Ty for about 11 weeks now, and my balance and walking is much worse.
Not much else I can do.