Hello to all and hope you are all as well as you can be.
I was sent home from work today, right leg just not doing what it is supposed to do,right hand not working as well as normal and I had something I have never had before really dizzy.
I left this morning feeling a bit stronger than the previous day but things changed quickly.
This has got me a bit frightened as I am on tysabra and have tested positive for jc although levels low.
I am truly hoping its a virus I’ve picked now that schools are back. I am negative for covid thankfully. I did ask if it could be progression but the ms nurse did not think so. The ms nurse will call back tomorrow once she has spoken with the neurologist.
Thanks for reading guys, I just wondered if anyone had a similar experience.
Thanks and stay safe and well. Mary x
MS nurse just rang, the neurologist wants an MRI done and for now they are putting a stop to the tysabra treatments. I have the gp and hope I have an infection and that is the reason for all this…
Oh blimey Mary, that’s enough to put the wind up anyone.
I’m so glad your MS nurse and neurologist are looking after you so well.
Try not to worry too much. It’s pretty unheard of for someone to get PML in the first 2 years of taking Tysabri, so I doubt they are looking for that with the MRI. It’s only been a few months for you hasn’t it?
It may be more that they’re thinking that the Tysabri isn’t working for you. The MRI would show up new inflammatory activity so confirm this is a relapse.
As you’ve said, hopefully you just have a virus and can restart Tysabri soon. (Just had a thought, you don’t have a UTI do you? That can give you symptoms resembling a relapse too.)
Sue
Hi Sue, thanks so much for your kind reply. Yes its been a rubbish few months but hopefully things get better soon.
Just in from GP and obs are all fine, throat quite inflamed and lymph node up a bit.
The GP thinks viral so I can let ms team know.
I started Tysabra in December and although things have gotten a bit more wobbly of late, my way of thinking was “if I was not on tysabra how much worse would things be?”
I would really like to continue with tysabra and when I get my MRI look at things then, although from the way the ms nurse spoke the decision to halt has been made.
Again thanks a million for always being there.x
hi,i had the same wiv my right leg and arm wen i was working to,i also was on tysabari, was on it for 9 and a half years n was like u a low posotive. then one day jumped to a high posotive.they took me off tysabari n put me on ocrevus (which isnt as good as tysabari-unfortunetly)
I’m so glad your GP has checked you over. That must reassure you. If you can stay on Tysabri, you should (imo), it’s such a good drug.
Sue
Thank you all for your kind replies. I have left a message with the ms nurse letting them know about the virus.
I really hope tysabra can continue but I will have to wait and see what the neurologist feels. I hope if I miss a month I can get back on if mri is ok,xx
Thanks again, Mary xx
MS nurse just off the phone. MRI is down as urgent so should hear soon.
Even although it seems that it has been a virus that made me have such a scary day, I now know that virus will render me this way. The nurse has said that they have halted the tysabra until MRI results are read just to be sure no relapse/pml which she feels will not be the case but they have to put the safety of patients first. Hope you are all well
Mary
Hello (again) Mary
I reckon you’ll be fine to restart the Tysabri so long as your MRI is soon. In fact, when I read your last post I remembered some research on spreading the interval between Tysabri infusions to 6 or even 8 weeks rather than the normal 4 weeks (Extended interval dosing of natalizumab – The MS-Blog )
The research showed that spacing out the infusions didn’t affect the action of the drug. So it’s a good thing for people who are JCV+. Ultimately this research isn’t conclusive on its own as it was a small study rather than a big double blind trial. But it does seem to indicate that you’d be fine to restart.
They’d restart you anyway (so long as it’s not PML - which is highly unlikely), but there’s a small chance that if the gap between infusions is too long, you could have an allergic reaction to it. Not everyone does. In fact I had Tysabri twice - the first time for 5 months, then a break for about 3 years followed by 4 more infusions. No allergic reaction, although I did have elevated liver enzymes (aka hepatitis) the second time! If your break between infusions was more than about 8 weeks, they’d watch you carefully on the next infusion to ensure there’s no allergic reaction.
So obviously your GP has reassured you about PML. All you need is a speedy MRI then restart the infusions!
Sue
Sue,
I truly think you must know me so well as that is what I have just been thinking about when chatting to my daughter about this predicament.
Pauline, the ms nurse said I have been referred as urgent for mri as even urgent are taking up to 4 weeks… I am not going to overthink things and keep my fingers crossed that it will be sooner rather than later.
I have promised ms nurse and doctor that I will stay off for a few days. I know I am very very lucky to be able to still be at work. I will let you know as soon as I find out about the mri and again a huge thanks from me for all your help.
Mary xx
Have just received MRI date. Thursday 9th September. The lovely girl at MRI appointments said there is a big backlog due to a couple of machines being broken down.
The girl said she would keep me informed if there are any cancellations.
I’m kinda coldy still but feeling a bit stronger. Here’s hoping.
Love to all
Mary
9th September, aka just over a week from now. Good. I’m so glad it’s soon. And very shortly after that you should hear the results. It does sound like you have a straightforward virus (you must be kind of strangely enjoying the cold type symptoms!)
Sue
Hello Sue,
You are so right I actually cheered when I got the cold. Here’s hoping the mri is ok and treatment can go ahead. I will keep you all posted. I hope things are as well as they can be with everyone.
Maryx
A wee update, MRI is now Friday at 7pm. I’m a very lucky girl. xx
Woo, good. The sooner the better.
Sue
Got my MRI results today, the neurologist said it is stable which is good.
I have been feeling better these past couple of days. I am off work until next Thursday although I had thought maybe go back sooner if I continue to get stronger. The gp and the ms nurse think it’s best to leave it until next week. They reckon a virus messed the MS up. At least I’ll know for the next time(hopefully I’ll avoid Viruses). Thank you for all your help and I hope you are all as well as can be. Getting my Tysabra on Wednesday as planned.
Mary x
So glad to hear it Mary.
Sue
Hello everyone, just a wee update.
When back to work yesterday, first day in 4 weeks. I managed ok and now know my limitations. There has been a wee change in my walking/mobility but am back and going to give it my best shot for as long as.
I contacted PIP for the first time purely just to get my name down incase I may need help with driving etc in the future. I have been told motability do not assist unless PIP involved however I don’t know if thats the case. I did a lot while I was off, contacted O.T and spoke with them.
Kevin, my hubbie will put a railing out the front as we live on quite a steep slope and it’ll help me getting to the car. Changes a plenty but I have to try and be prepared. Not at the stage yet for an extension, wetroom/bedroom downstairs but will cross that bridge if and when I need to.
Once again a big thank you to you all for the support you have given me over the years. I know I’m not always on but think of you all often.
Take Care. Mary x