JCV +- ??

[newbie but goodie]

I had been on Copaxone for about 6 months but couldnt handle the shots. I went without meds for about 2 months. At my last neuro appt, I had 1 new lesion and had been experiencing symptoms but wasn't in active relapse according to MRI.

MY neuro wants me on meds and wants it to be either Gilenya or TY as I am obv not doing well with the shots. He prefers TY over Gilenya but both scare the bejeebers out of me. I guess after all that blabbing, all I really want to know is does anyone know the incidence of PML for JCV- folks?

I won't do it if I am positive- I'll have to figure something else out. But if I am negative, I would like to know exactly what I'm dealing with.

[ru4cats]

JC- the odds are between 1/11,000-1/22,000. Check out the video's on youtube by Timothy Vollmer, "Wellness and Multiple Sclerosis". He gives a great description of all the current treatments and even newer ones coming up. He also makes recommendations depending on your status. I just had my 3rd JC- result, so I'm on Ty for the forseeable future.

[moolk]

I'm JCV + and I'm so glad I'm on Tysabri. It is a lifesaver for me.

[newbie but goodie]

ru4cats and moolk: What is so great about Tysabri? Does it really help that much? WHat are the side effects like? My neuro was clearly in favor of Copaxone when we were choosing a med but he is clearly in favor of Tysabri now. I feel like I'm jumping from one extreme to the other.

ru4cats: I don't really like those odds either. To be honest, I am just scared to death to choose TY and scared to death not to choose it. This is so complicated.

[22cyclist]

Tysabri's biggest side effect is obviously PML, but if you are JCV-, you don't have to worry as much. Also, you are monitored very closely with the TOUCH program.

Other side effects are:
1. It makes some people a little sleepy the day of the infusion.
2. Others it gives full energy the day of infusion.
3. For me it gives me insomnia.
4. No flu-like symptoms.

For the most part, people say it gives them a little boost of energy after about infusion #6 and that lasts for a few infusions. Otherwise, it is barely noticeable.

It is just a couple of hours out of your day once a month. No big deal.

[rickalex2]

I used to do Avonex but didn't like the side effects, plus my hubby gave me the shots. I couldn't do it. (Intramuscular).. I have now been doing Tysabri for 4 and 1/2 years... I have now turned Positive for the JCV virus... SUCKS. I LOVED Tysabri.. no side effects and just one needle stick a month at the clinic. But your right, it is complicated! I knew there was always a chance of PML even without the positive result and it was always scary to think about... but my MS has been in remission and the relapses I've had have been very short and just needed short bouts of steroids. It was working amazingly and now I have to make the choice.. and with the amount of years I've been doing it (which already had raised my risks) and now the positive result tells me time to go off of it.. really bummed about that. I could never tell someone to do Tysabri or not do it. That has to be a personal choice. It is complicated...

[lindaincolorado]

Hi newbie, Tysabri has been a true gift for me. After 7 infusions I had an MRI that showed no new or active lesions... same since then with some of the old lesions going away or gone. I have more energy, less fatigue - do a lot of living every day Progression has halted-I have a good QOL. I just had my 74th infusion

[ru4cats]

Newby,
Read my thread under informs newsletter from rocky mountain ms center. It has a good discussion on risk. For me, no question, Ty is the best and I have no problem with the odds. Of course, I'm also 60!

[Mynamegoeshere1]

Ty

Hello. I am due for my 3rd infusion next week of Ty. The bad thing for me is the sleepiness. It makes me sleepy ALL the time. From infusion to infusion. They said that is a very RARE side effect though and my Neuro is working on finding a medication that will help me stay awake during the day.

My understanding is that even if you are +, there is very little risk in the first 2 years. I had a hard time making my decision as well. Even though I am super tired, I still feel confident in my decision. I even went to another Dr. to get a 2nd opinion when my Dr. suggested it. I had tried Copaxone (allergic reaction) and Betaseron (rapid decline) before the Dr suggested this. Your Dr. will do the test to see if you are +/- before you will make your decision.

What made me feel safer was knowing that BG12 (I think that is what it is called) is coming out soon so if I have a reaction, or if I start to feel uncomfortable, I know I can switch to that. All in all, you need to feel comfortable with your treatment. It was the scariest decision I made. My BP was outrageous before my 1st treatment, but went down once I realized I wasn't going to die (as dramatic as that sounds) Good luck with whatever you decide to do.

[cocogirl]

I am JCV+ and just had my 41st infusion. I am a little more apprenhensive right now because I had to be off for 6 months and didn't know what affect that would have on me. I went ahead and had it and am ok. It is about quality of life for me and I discovered through taking a risking taking survey, I take a good deal of risk to have a chance at a good life. I will have my MRI at the end of the month and hopefully it won't show any new lesions even with the hiatus of the infusions. Like it was said previously, I wouldn't presume to tell someone what they should with their health. As for me, I have been doing great on Ty.

[Andy75]

MRI Frequency

For those that are JCV+, how often do you have MRIs?

My doc says I need to have them every three months. To me, this seems a lot. I know that MRIs don't pose the same risks as CT scans, but I find it unsettling.

Thanks

[LL60]

Andy,
It amazes me how different everyone's neuros are.

I am JCV +, just had #43. I am not on any sort of schedule with the MRIs. I had one last month only because I had some dizziness that I couldn't explain. It had been 10 months since I had one. Before that it had been a little over a year.

My insurance charges me $1800 for an MRI, so I go to a place in the city on my own, my neuro just writes a prescription and I pay $500. If it is the time of year that I met my deductable - like last month, it is only $50. No way could I afford every 3 months.

The contrast could be hard on your kidneys if they are not perfectly healthly I have been told. I do have to get blood tests before each one to make sure they are okay.

I will be interested to see how often others get MRIs.

[REG53]

Andy- Since I tested jcv+ I have a mri every 3 months without the dye.

[LL60]

Had a neuro app. today and asked about MRIs. She said once a year, unless I had any symptoms - then one right away.kind

[Myoak]

Hi Andy,

There can be a great deal of difference on frequency of MRI’s according to individual neurologists. Some want an MRI every 3 months, some every six months, some once a year. One advantage of having an MRI every 3 months is that doing so creates the very real possibility that PML might be identified early enough to treat in a much more effective manner than if the disease had progressed before it presented clinically.

For a JCV+ patient an MRI every 3 months might be considered a prudent safety measure by many neurologists. If insurance goes along with it, or, if it doesn’t cause economic hardship, having a MRI every 3 months has little downside and may not only save a life but the quality of that life also.