Hi, folks! I know I’ve not posted on here in ages, but blame life for getting in the way…new granddaughter (well, she’s a year old now) but she was born 3 months early, so it was a long haul for a while. To add to that, Emily is now11 and entering middle school (!) and is super active, so we’re hauling her around from drama to dance to church, while her parents (both high school band directors) prepare for this next season.
I came on here to tell you all some good.news. Several months ago, after my last trip to see my neurologist in San Antonio (5 bourse away from home), she did the JCV test as usual. After that brief visit and her telling me I was doing great, we turned around and came home. A couple of days later. I got a call from her assistant saying that I was positive for the JC virus and to stop my Tysabri treatments immediately and that I would hear back from the doctor as to the next steps. That was back in February. After numerous calls, and numerous getting my appointment pushed back, I gave up and met with a neurologist down here….only 20 minutes away! He just moved here about 3 years ago, and is the ONLY MS specialist in the Rio Grande Valley, which encompasses a large portion of south Texas. I met with him yesterday, and LOVE everything about their practice, the staff, and the doctor himself.
After a good forty-five minutes of us talking and him looking into my records and MRIs, he indicated that recent studies have shown that if a patient has been relapse free and shown no difference in their MRIs, and is over 65 (I think that was the age he said…I just know my brain locked onto the fact that I totally fit that profile), said patient does well with NO TREATMENT!
So, bottom line, because I am an old lady, I no longer need treatment! I will continue to see him every 6 months, and will of course contact him if I get new symptoms or feel a relapse coming on.
YIPPEEEE!
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Texandyroe
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Congrats on not having to take any ms medication anymore!! I was also tested for the jc virus while on tysabri for 12 yrs , and taken off. I cant wait until I do not have to take M.S. meds anymore.
Aren't grandkids the best?! What joy they bring to our lives!So glad you found a MS neuro close to you. Good luck with no meds. I am 64 and don't want to stop mine because I'm afraid.
I totally understand your fear, mrsmike9 . Because I have shown no change in my MRIs since 2012, and I’m almost 71, I felt pretty safe. And yes…grandkids are the greatest! I have 2, and they invigorate me every time I’m around them.
Sorry to be a Debbie Downer, but make very sure you read up again on relapse symptoms and stay very aware of what your body is doing. While it would be wonderful if you are able to happily stay off meds, there are many people over the age o 60 who come off meds because the docs reckon they don't need them, and then go on to have a whole new bunch of lesions and relapses. Part of the reason that docs let people go off meds when they are older is because virtually none of the clinical trials have ever included people over 55yo so the data is extremely limited. And there are increasing numbers of people aged in their late 50s, into their 60's and even 70s still being newly diagnosed with MS. (I was in my mid-50s when diagnosed)
You are NOT a Debbie Downer at all, and I totally appreciate your concern and advice. Due to the fact that my old neurologist virtually dropped me when I tested JCV positive, I have been off Tysabri 6 months already. She didn’t really drop me…when they called to tell me I was JCV positive they set up an appointment for the following week to “discuss next steps”. Then, proceeded to call and push my appointment back a month…for 6 months. Because she is supposedly the premiere MS specialist in that area, she is frequently called to speak at different events. So, the Dr factored in the fact that none of my MRIs have shown any change nor have I had any relapses or new symptoms since 2012 and I’ve gone 6 months off of Tysabri and I’m 71 years old and I’m JCV positive, and felt that this was a safe move. I will continue to see him every 6 months, and more frequently if any changes occur.
Hi, Texandyroe! Congrats on the new grandchild. I was diagnosed two years ago at age 60. Here's what Dr. Boster thinks of stopping the DMT for us "seniors". But if it works for you, go, girl!
I too was In Tysabri and got the JC Virus. I’m 66. My dr did not say I do not need treatment anymore. In fact my symptoms are getting worse. I’m now on Mavenclad. I’d I were you, I would do research or get a second opinion.
I am so sorry to hear that your symptoms are worsening! My MS specialist in San Antonio has been pushing my appointments back every month for 6 months. So I’ve been off Tysabri already for 6 months. And my MRIs have all shown no changes since my original diagnosis in 2012, nor have I had any relapses or new symptoms since then, so he felt it was a safe move. I will continue to see him every 6 months and we will discuss Mavenclad if anything changes.
So nice to hear from you, Texandyroe , and of your good news, becoming a grandma (again), your new neurologist and your approach to your DMT. I wish more good news from you and I look forward to your future posts!
I am happy for you! I had the same experience. My neurologist retired. The new one told me the same thing about age, stability etc.. I have been off Avonex for 13 weeks now. I was excited, but now I am nervous about it and notice everything going on in my body. When you say you are watching for new symptoms, do you mean even a small, slightly different sensation? Thank you!
Hi! How long have you been odd Avonex? I’ve been off Tysabri for 6 months (because my old neurologist kept pushing my appointments back a month every month!) and so far NOTHING new, not even small things. Yes, I am to report back to him every small sensation, and while I will be meeting with him every 6 months, I’ll be meeting with his PA on the 3 month intervals before my appointments with him. So I will be being seen by a professional every 3 months, and can call in anytime I have a concern. Take care and best of luck to you ❤️
the girls are very precious and i bet for sure you really are enjoying them .....love is great isn't it ....love them babies they never get to old for it even when at times as teenagers they don't act like they need ya ...still LOVE THE DEVIL OUT OF THEM ... they will love you later for it ...hahhha....love them babies....
oh, trust me, I plan to. We disrupted our lives and moved down here to be close to them, so we will be loving the heck out of them. The oldest is already showing signs of early teenagerhood, but just when I think she’s grown too old for us old farts, she’ll call me out of the blue and ask if she can have a sleepover with me. ❤️
I am happy for you, I was told that also then had a very bad episode with my MS that landed me in a nursing home for over 2 months. so be very diligent. God bless & keep you always. Mary
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