Can the JC virus be killed before PML

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gramcjk
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Can the JC virus be killed before PML

Post by gramcjk » Sat Aug 17, 2019 11:56 am

After recently discovering that I am JC virus positive I have been reading about the possibility of being able to kill off the JC virus before it can trigger PML. I have been reading that drugs like Mefloquine and Cidofovir might be effective in destroying the JC virus before it can trigger PML rather than after. Does anybody out there know if this is true? With all of the medications on the market that expose us to PML risk it would be nice to know if there is a preemptive strike to be used if we are JC positive. I would appreciate hearing anything that would help this battle.

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Re: Can the JC virus be killed before PML

Post by ElliotB » Sun Aug 18, 2019 7:18 am

Likely not, otherwise that info would be readily available, wouldn't it? What does your doctor say?

But frankly, it does not make sense to take a drug that can possibly trigger it when there are many other DMDs that do not.

My neurologist wants me to change medications and I told him I will not consider any medication that might lead to PML. I just had a MRI done and am seeing him tomorrow for his recommendations.

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Re: Can the JC virus be killed before PML

Post by gramcjk » Sun Aug 18, 2019 9:48 am

My doctor is far from the newest treatments. He had never heard of Tecfidera when I approached him to start me on it after FDA approval. My doctors like mine do not act, they only react. There is a new antiviral drug being developed by Chimerix called Brincidofovir (CMX001) that might be applicable but when I approached my neurologist about getting JC under control I got no response which is why I started this post. MS is a textbook example of a disease where patients must be proactive in their treatment. If a patient is not proactive the may end up worse off than current. I ended up with Non Hodgkin's Lymphoma because of some previous MS treatments and I don't want to risk PML if there is any option to minimize that risk. When the treatment creates a potentially greater problem, patients need to explore every possible option.

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Re: Can the JC virus be killed before PML

Post by NHE » Sun Aug 18, 2019 11:41 am

gramcjk wrote:
Sun Aug 18, 2019 9:48 am
I ended up with Non Hodgkin's Lymphoma because of some previous MS treatments and I don't want to risk PML if there is any option to minimize that risk.
Thanks for sharing. Just curious, which treatment resulted in lymphoma?

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Re: Can the JC virus be killed before PML

Post by gramcjk » Sun Aug 18, 2019 5:26 pm

According to my pharmacist it was my Solu-Medrol infusions interacting with my Rebif and Copaxone.

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Re: Can the JC virus be killed before PML

Post by NHE » Sun Aug 18, 2019 5:44 pm

gramcjk wrote:
Sun Aug 18, 2019 5:26 pm
According to my pharmacist it was my Solu-Medrol infusions interacting with my Rebif and Copaxone.
Thanks for letting me know. I'm sorry you went through that. I'm not familiar with combining Rebif with Copaxone. Was there a trial that showed that to be of benefit?

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Re: Can the JC virus be killed before PML

Post by gramcjk » Mon Aug 19, 2019 6:27 am

The Rebif and Copaxone were not taken at the same tine but it was the sequence. I was taking Rebif and the injection site reaction was so bad my almost my entire body was a huge flaming sore so I was switched to Copaxone but the Solu-Medrol was administered between them.

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Re: Can the JC virus be killed before PML

Post by NHE » Mon Aug 19, 2019 6:25 pm

gramcjk wrote:
Mon Aug 19, 2019 6:27 am
The Rebif and Copaxone were not taken at the same tine but it was the sequence. I was taking Rebif and the injection site reaction was so bad my almost my entire body was a huge flaming sore so I was switched to Copaxone but the Solu-Medrol was administered between them.
Thanks for the clarification. Subcutaneous Ifn-beta has been reported to cause injection site tissue necrosis. It's in the prescribing information. It sounds like the lymphoma was due to immune suppression.

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Re: Can the JC virus be killed before PML

Post by ElliotB » Tue Aug 20, 2019 12:13 pm

My neurologist wants me to change medications and switch from Copaxone to Ocrevis. Although no cases of PML have been directly linked to Ocrevis, they do warn about PML in their literature as other drugs that function in a similar manner in 'controlling' MS progression have, so I am not sure what to do. A very difficult decision. The drug has only been on the market for a couple of years so it would be difficult at this time to know if PML is an issue with Ocrevis or not.

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Re: Can the JC virus be killed before PML

Post by gramcjk » Wed Aug 21, 2019 8:21 am

That is exactly the reason why I am trying to determine if there is a way to kill off the JC virus before exposing myself to PML risk. It seems that the newer medicines with higher efficacy usually come with PML risk.

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Re: Can the JC virus be killed before PML

Post by ElliotB » Wed Aug 21, 2019 9:40 am

Are you taking a DMD now?

What do you think you are going to do at this point?

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Re: Can the JC virus be killed before PML

Post by gramcjk » Wed Aug 21, 2019 9:53 am

I'm taking Tecfidera. If I can find a way to kill off the JC virus I will go off the Tecfidera and get rid of the JC virus. To me getting rid of the JC virus is more important than treating the MS.

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Re: Can the JC virus be killed before PML

Post by ElliotB » Fri Aug 23, 2019 2:57 am

I have been doing some research about PML and found this very informative article titled "Everything You Should Know About Progressive Multifocal Leukoencephalopathy (PML) Virus"

Here is a link:
https://www.healthline.com/health/plm-virus

According to this article (and other similar ones I have read):
"There’s no known way to prevent the JC virus."

According to WebMD:
"It doesn't cause problems for most people, but it can be dangerous if you have a weak immune system. There's no known way to keep yourself from getting it. The virus was first discovered in 1971."

AND according to everything I have read, there is no cure once you have it.

So, anyone with a weak immune system is at higher risk, and many MS drugs do just that, suppress the immune system. And of course those with MS have compromised immune systems so, putting 2+2 together...

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Re: Can the JC virus be killed before PML

Post by gramcjk » Fri Aug 23, 2019 8:57 am

The WebMD info is outdated. Because of all of the monoclonal antibody medications out there and the risk they create, more effort is being done to address the need to rid ourselves of the JC virus. If you look into how Mefloquine and Cidofovir and Brincidofovir (CMX001) might be players in the JC virus battle it will demonstrate that there is work being done. How soon we will benefit from this research is the question here.

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Re: Can the JC virus be killed before PML

Post by vesta » Fri Aug 23, 2019 10:30 am

ElliotB wrote:
Tue Aug 20, 2019 12:13 pm
My neurologist wants me to change medications and switch from Copaxone to Ocrevis. Although no cases of PML have been directly linked to Ocrevis, they do warn about PML in their literature as other drugs that function in a similar manner in 'controlling' MS progression have, so I am not sure what to do. A very difficult decision. The drug has only been on the market for a couple of years so it would be difficult at this time to know if PML is an issue with Ocrevis or not.
Greetings: Why does your Doctor want you to stop taking Copaxone? Thanks, Vesta

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