Well it’s Friday and I have been on pins and needles all week. The waiting game is horrible and when it comes to my health I’m NOT very patient. After making several calls today to the neuro’s office, and I left messages each time with no return calls, around 3 pm I decided I was not waiting to hear back from the main clinic and called the infusion center instead. I called my infusion nurse I have known a very long time. I left a message asking her to call me when she has a chance regarding my JCV results. She returned my call in less than an hour. She also took the time to obtain the information I asked for prior to calling so that she was able to give me my JCV test results. Unfortunately my results came back even higher than the one in October. I’m definitely disappointed. 😥 I went from 3.44 to 3.66! 😱
Of course I then asked her a thousand questions, she was very patient and answered as many as she was able to per her own knowledge. I was very grateful and appreciative for whatever information she shared with me. She suggested I wait until I hear back from my neurologist or the PA before canceling my Infusion appointment for next Thursday. She also advised me they will more than likely want me to set up an appointment for an MRI and another with my neurologist to look at the results ASAP. One thing I didn’t know is that even though a person is JCV positive you may still be OK to switch to Ocrevus. From what I was told, the risk of PML is actually lower when on Ocrevus than Tysabri. Too bad I didn’t know that when it first became available. Even though I had turned that down when I was first given the option. It was just too soon after my gallbladder was removed and I was not recovering very well from that either. But I will definitely explore this and other options. Until I have the MRI and meet with my neurologist it’s another waiting game. Very frustrating.
I will attempt to continue updating as much as possible. Also, I’m sending a huge heartfelt “Thanks” to all who responded to my concerns of testing JCV positive. ❤️
Until then here’s wishing everyone a healthy and happy day/week!
Written by
KrittyKat60
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I am sorry to hear of your news, also I am sorry that I cannot help you in anyway as I do not understand the JCV situation. I just hope and pray that they can find the right treatment for you. Blessings Jimeka 🤗
Thank you Jimeka. Just the kind words of support I’m receiving are enough right now to keep my spirits uplifted. This website is so supportive that’s why I chose here to get feedback.
I am the same way! I want answers TODAY as though the test I may be taking on that day, was done yesterday. I am also JCV positive. I'm on Ocrevus. Not sure what my # is. Just remember 3.XX and doc telling me at the time in 2016 what med I couldn't have due to JCV. I started with Avonex, than Aubagio and now Ocrevus. Good luck with everything
I was on the daily copaxone for the first 5 years after my diagnosis. When that no longer was working I had to switched to Tysabri. I’ve been on it for 6 years. Your numbers sound high like mine are right now. Once they reach above 3.0 the risk of PML goes right up as well. If I may ask, how do you like Ocrevus? What kind of side effects do you have? I’m 99% sure that’s the next DMT they will recommend to me. Most people I’ve met at the Infusion Center that are already on Ocrevus say they feel so much better. About 5 months ago this lady came in for her 6 month Ocrevus infusion, she was in a wheelchair. Another patient (very humorous guy) asked her if she liked it & how it was going for her. Her reply to him was, “Well I know I can’t walk but I feel like dancing”! She made the whole place bust out in laughter. By the time he was leaving he had given her the nickname “Dancing Miss Dorothy”.
Lol that is funny! So she felt good! Ocrevus has stabilized me far as MRI results looking good. My body doesn't feel great. I don't fault the drug. I believe and I'm hopeful for a better day! I go to MS meetings and meet other MS patients and neurologist. The bottom line answer is primary progressive for how I feel. It's unfortunate that some of us may continue to experience progression. I hear that new meds are in the works. I'm sure I will switch again. It's unfortunate that I'm looking for something that the meds aren't intended to do. Such as go back to the life before MS.
Some people have notice a huge difference physically with Ocrevus and some are just like me, no different physically.
Thank you for sharing that.....so appreciative for the info. Yeah that reply from the lady in the wheelchair was awesome. I figured if someone in a wheelchair could feel as if she could get up and dance from the Ocrevus treatments it’s must be having a positive effect for her. It was the first time I met her so I don’t know her struggles.
I’m fortunate that I can still walk, drive and get around as needed. The copaxone worked for me for about 3 years even though I stuck with it for 5 years. In early 2011 I started to have MS pain for the first time (which I did not know it was from the MS) and it continued to worsen. The pain was mainly in my feet then eventually effected my hands and legs. Fast forward to March 2013....my complaints were finally heard by my neurologist and he ordered an MRI. I knew deep down something had changed. The MRI was to confirm or rule out if there was an increase in MS activity. On May 1st I met with my neurologist to review the MRI results. That’s when I began to look at what other DMT options I had. After a lot of blood tests and waiting for the results to come back for final approval I narrowed my options down between Tecfidera and Tysabri. I had my first Tysabri infusion in August and the rest is history at this point. LOL Except... now I find myself full circle looking for more new options yet again. Hope your next treatment is more positive, I’ve heard the benefits increase the longer you are on O. Good luck and keep me informed if you remember.
You're welcome Thanks for sharing the info you provided too! The plus side with Ocrevus is knowing you've completed your MS meds for 6 months. Sense of relief that you're doing all you can do on medication side. I have tried to get it in within 4-5 months because my body seems to know when it's time. My doctor said no I can't schedule you before 6 months.
Met an ambassador for Tysabri and he is doing awesome! With my levels for JCV, Tysabri wasn't an option for me. I believe some medications make things better with MS. It's just not necessarily advertised that way. But we can kind of read between the lines of what can possibly happen based on research.
It’s too bad Tysabri seems to have a higher risk once positive for PML. One thing I forgot to mention and just thought of this after I read your reply. When I first started Tysabri I lost 40 lbs very rapidly beginning Sept 2013 to Jan 3, 2014. On one hand I was happy to lose that weight but on the other side I was concerned as to why. I hadn’t changed my diet or exercise routine nor was I trying to lose weight. Averaging between 12-15 lbs a month of weight loss was not normal.
Fast forward 2 years later to July 2016.....I had lost a total of 65 lbs and had to invest in an entire new wardrobe. Beginning from a size 12 as I continued to lose & buy smaller sizes of jeans and T-shirts. I skipped sizes 10 to 8 jeans completely and stayed with a size 6. I was continuously dropping lbs over a period of 2 yrs until I had no more weight to lose. There was a lot of other 💩 happening in my life at the time that was out of my control. Very stressful....I’ll skip over that part. I did what my Mom taught me from birth, rely on your faith in the lord. I prayed a lot during that time until I finally couldn’t bear any more pain and grief. I looked up and asked him 😇 to take over my worries. I was so broken I believe in order for me to heal and continue life, my body went into survival mode for a long time until one day I made the best decision in my life, even though it wasn’t what I had planned or wanted to do. That decision led me to where I am today. By the time I retired from a job I held for 27 & a 1/2 years I weighed 105 lbs & wore a size 4 in jeans, which were starting to fall off me as well. Since retiring 2 years ago I’ve gained back 20 to 25 lbs. I’m still wearing a size 4 in jeans & dresses and size small in shirts. I can’t explain that mystery.....but I’m more conscious of keeping my weight where it is now. No more weight gain and I’m limiting any weight that I may lose. Sorry that was much longer than I intended to add. I hope I didn’t bore you with my rambling 😴 🥱. Haha
Thanks I’m trying to stay optimistic though. Maybe it was meant to be.....if the Ocrevus works out then my husband and I can travel like I’ve always wanted to do when we retired. The monthly infusions were kind of a road block for me, kind of like an inconvenience but necessary.
I hope you hear back from your doc real soon!!! Stopping tysabri without a plan in place could be risky. I’ve read that a relapse after going off the tysabri is a rough one. Good luck🙏
Thanks, yes I’ve heard that too. I don’t think I could be without taking anything at all. Thankfully they no longer take people off without putting them on another DMT. Just the daily fatigue alone is overwhelming enough for me, I can barely function by the 3rd week (which coincidentally is where I am right now) 🤦♀️
I’m proactive when it comes to my health and especially my MS. I’ll be calling the clinic on Monday probably before anyone has a chance to call me first. LOL I’m not very patient waiting for people to return my phone calls. 🤣
Oh the waiting game so sucks KrittyKat60 ! I'm sorry about your results! One of the reasons they put me on O was because of JCV. So Def talk to your neuro about it!🤗💕🌠
I have only had the 2 1\2 doses. Fri will be my first full dose. So, it's a little bit early to tell.🙄 And the only results anyone should expect, hope for is a slowing of lesions.🤗
Oh so you are a newbie to the Ocrevus....gotcha. Well hopefully you have a good outcome from it and if that is the DMT I end up on, I’m hoping I do as well. Blessings to you. 😇
stay positive for you to change over to Ocrevus and get the infusion on the date planned ...did you mention that when calling the clinic about that your apt..is coming up very soon ....sorry not doubting you but i know when i am upset and worried about something getting done as fast as i think it should for i can't wait either ....good luck someone hears your calls ...
Thank you. Yes my appt is soon....it’s on Thursday morning (11/21). My neurologist or his nurse needs to contact me tomorrow as early as possible. All of this has to be taken care of no later than Friday to allow me time to make any decisions going forward and not feel pressured to make them.
Yes, I’m a believer in that everything happens for a reason. We just don’t know at the time what it is. I also believe it’s 99% always for the better. 👍😊
Blessings and prayers to you, I need to learn more about JCV so I too can better understand. I know it's frustrating trying to wait and find what works best grateful you had a clincian who cared with calling you. I will be praying for the best and hope they find a good treatment plan.
Thank you. I’m positive it will work out in the end. I just hate waiting.
I knew a little about the JCV risks but not really fully understanding what or how a person gets that. Supposedly it’s very common not just for people with MS but in general. The thing that disturbs me most is that no one seems to know where or how you come in contact with that virus. The PML is where I am going to start researching and learning more about.
I'm JVC positive as well and researched Ocrevus before starting it and found that during their trial testing for FDA approval they tested 1,400 on Ocrevus. There were no cases of PML reported. I have been on Ocrevus for 2 years now and only have had two small exacerbations. I was previously on Avonex and was having exacerbations on average 1 every 3 to 4 months. I definitely would not continue Tysabri any longer. Good luck with everything.
Sorry to hear about the JCV results. But I have heard that you can still get the Ocrevus infusion depending on the JCV level if it's low. You seem to have a pretty good attitude considering all that you have been through, which is wonderful. God is good and will be there for you. He has been with me since my dx in 2005. It really makes a difference. Prayers for you that you can still get the Ocrevus infusion. It has done wonders for me.
Hi KittyKat60 my name is Mary calm down dear I have been dealing with MS for over 25 yrs. & JCV+ for over 10 yrs. I went to Ocrevus a year ago I am doing good as are many others that are on this site I am also praying for you It's the only thing I know for sure that does not hurt. Sorry your JCV is so high but stressing yourself out isn't going to help either so take a few deep breaths have a nice cup/glass of your favorite beverage hot/cold & relax. Sorry I didn't see this sooner but I don't get on everyday, I see where you have gotten some very nice & comforting replies. We are all sisters & brothers here I hope & pray that you are feeling much better now. Mary
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