JC Virus positive

[bps25631]

My specialist wanted me to try Tysabri, but I just found out that I am JC virus positive. He says that it is not a good choice for long term treatment. He is talking about Rituximab instead, but it also has a risk for developing PML. Does anyone have experience with being JC+ and still taking Ty? I am feeling frustrated and so far I have tried 3 other dmd's with no luck.

[LL60]

I have been on Tysabri for 6 1/2 years. I have probably always been JC+, when I started they were not testing. My numbers go from 2.1 to 4.2. My doctor would like me to discontinue the infusions, but I refuse. For me, it has been like a cure. As close to one I think I will ever find. Many symptoms are gone gone gone. Some are improved. The fatigue sticks with me like glue and I just adjust and try to live with it. The first 4 or 5 years Tysabri even took care of the mind blowing fatigue. Not so much lately. I am not a gambler, and will not go to another med that I have no idea if it will work or not and take the risk of some of their side effects and give up a med that is working beyond my hopes and without one single side effect.

This all being said, you must understand that this is my story with Tysabri and my story will not be your story. For years I went deep deep into the internet looking for facts and answers that my doctor could not give me. I have had the new test that I paid dearly for, but it showed good results and did get my doctor off my back a little about it. It is like a treasure hunt sometimes trying to find up to date information. Try all the investment websites. They seem to get information before the medical community. It can be exhausting. And overwhelming. But, for me it was worth it since I feel like, FOR ME, I have come to an informed decision that is the best decision for me. My doctor is part of my team, he is not running things. I am. FOR ME, that is the only way I am comfortable treating my own illness.

PML is not to be taken lightly. The death rate remains around 23%. Others are left with a life long battle of different levels of disabilities, besides dealing with MS.

Only you can make this decision. And live with your decisions. Rituximab is good drug. Research it.
I understand your frustration with trying 3 meds already. Isn't this a wonderful time to have MS (if someone can ever say that!!) in that if one drug doesn't work, we have many others out there that we can try and just possible hit on THE one? Being on Copaxone for 5 years was like injecting myself with water each morning. I had a reaction that eliminated all injectables, so at the time, there were not a lot of other options for me. I spent 6 months researching what was out there and took a chance on Tysabri. Best thing I ever did. For me.

[lindaincolorado]

I would ask for the #s of your jcv test. I am considered positive and my #s fluctuate between .23 and .27 Negative is .20 and below and positive is .40 I am in the intermediate range but, my Dr calls it positive.

As LL60 advised, get all the info you can to help you make your decision.

Good luck

[Myoak]

Hi bps,

Both are very effective in treating MS. My wife has been on Tysabri continuously since 2002 except during 2005 when it was off-market about a year due to PML concerns. She was JCV+ from the first test.

Literally, there have been hundreds of studies on Tysabri (natalizumab) so a great deal more is known about it than rituximab relative to MS. However, rituximab has been around for many years, also, but it is not as studied in MS.

Rituximab is coming off patent so a new drug was developed very, very similar to rituximab called ocrelizumab. Phase 3 trial results were recently reported and it was found highly effective.

Probably, the reason why your doctor said Tysabri was not a good long-term option is because of PML risk. Depending on several factors PML risk can run between about 1 in 100 to 1 in 3000 after two years on the drug if you are JVC+. There are variables and I am speaking in general terms. If you have taken prior immunosuppressants the risk is higher. Talk to your doctor about it. There are charts which list PML risk.

The Handbook of Clinical Neurology listed the risk of PML with rituximab at 1 in 30,000. Many believe that PML with rituximab is under reported but even if there were 5 cases in 30,000 it would still be far less risk than with Tysabri.

All these issues need to be discussed with you doctor and verified!

I just wanted to let you know our experience and give you a few facts. The QOL we enjoy is because of Tysabri and a total lack of disease progression because of it. Other people may not have the identical experience; some may.

I guess the other thing about Rituximab is that Ocrelizumab will very likely get FDA approval in about a year and transitioning from R to O should be convenient because they are so similar.

All MS drugs have risks but MS disease has notable risk, also. JMHO, but I believe, and firmly so, that the best chance for a life less affected by MS is to opt for an early aggressive treatment before irreversible damage occurs. Both Tysabri and Rituximab are good options in that regard. They are far more effective than the older meds, IMO, and as seen in trials.

Good Luck and congrats on having a really good neurologist willing to consider the two options you mentioned. Pay attention to him, I'm sure you do, you have a good doctor.

[ru4cats]

I wish I could add something additional, but I would just like to say,
"You couldn't get any better advice than that given by LL60, lindaincolorado, and Myoak. They know of what they speak."

[22cyclist]

I am JCV+ with an index of 3.5, I have chosen to stay on Ty despite my neuro's opposition to the idea. She did concede that it was ultimately my decision though, so I will take my chances for 0 progression. I just have an MRI every 3 months to check for PML to catch it early, and call with ANY new symptom. I am willing to take the chance with Ty. Its totally up to you which med you choose.

Take care
Lisa

[DexterMorgan]

I am JCV+ with an index of 3.5, I have chosen to stay on Ty despite my neuro's opposition to the idea. She did concede that it was ultimately my decision though, so I will take my chances for 0 progression. I just have an MRI every 3 months to check for PML to catch it early, and call with ANY new symptom. I am willing to take the chance with Ty. Its totally up to you which med you choose.

Take care
Lisa

Good point! The doctor that treated me at first told me I HAD to stop because my index increased, so I'm in another hospital now with a doctor that says the index can decrease after a while too so why quit? I'm glad she gives me the choice about my health. I'm going to suggest the MRI thing, didn't even think about that!