I am writing to you on behalf of my wife as she is not able to right now.
She had/has relapsing remitting type. She was given TYSABRI since 2012 every 4 weeks and then around 2 years ago started every 6 weeks (her JCV+ was up and down but under control) and this drug made her life beautiful (running, cycling, swimming – nobody would say she has MS! ) until this April. She started to develop spinning head symptoms and then vomiting (she started to take different drugs to stop it or maintain it with better or less success) has appeared. Soon after in May her balance was very disturbed so started to use walking aid, etc,etc. Her MS nurse and MS Neurology Doctor in hospital immediately gave her course of oral steroids in May and took her off TYSABRI (most likely got antibodies and drug become ineffective for some time but nobody noticed, blood test awaiting results) and recommended OCREVUS. In the meantime, she ended up twice in A&E due to dehydration from vomiting and symptoms were getting worse. (As mentioned above testing combination of different anti-sickness drugs to stop it – currently on Ondansetron + Betahistine works well)
Several weeks ago, double vision and speech problems has started, and her walking ability is now nonexistent. She had received first does of Ocrevus few eeks ago and second dose just 2.5 weeks ago, but her symptoms didn’t stop there.
Since last week she is in hospital going thru heavy relapse (small lesion in Posterior Fossa – unfortunate region ). She has received 3 days of steroids IV and a lot of fluids and continue anti sickness drugs. She really didn’t react to IV steroids too much, small improvement in swallowing and some others but not much. Neurology team with MS Neurologist is looking for even additional DMT drugs to implement, maybe also plasma exchange but nobody said yet what exactly. I don’t think they know themselves.
My question is, do we/you have any experience/evidence that TYSABRI given every 6 weeks is as effective as 4 weeks, cannot find any confirmation online to confirm or deny it. MS nurse mention that it is as effective as it would be every 4 weeks.
When I am reading about TYSABRI “rebound effect” it comes to my mind that it does not work every 6 weeks and that is why she developed new lesion.
What are your thoughts…
I am so sorry to hear this. I have been on Tysabri for about the same time. 4-weekly throughout, until I went 6-weekly at my own request in 2020 to minimise hospital visits during Covid - everything I had read suggested this was an OK idea and that EID was just as effective. Not for me it wasn’t- I felt myself starting to relapse half way through the second 6-week stretch - having been relapse-free for more than a decade. The MS nurse was brilliant and got me back on 4-weekly super fast, the new activity ebbed away without really getting a grip and life went on. In short, I was very lucky and got away with it. I do not doubt that EID is okay for most people but my personal experience tells me that it is not for me.
I am very sorry that your wife is in such trouble and I wish you both well.
Thank you for sharing your experience.
My wife still has not improved much but can eat solid and drink,her all other problems with hands,speech and bladder still there.Vision had supposedly improved slightly but she is not 100% sure.Today she had 3rd MRI scan (head and spinal) and hopefully MS consultant will review it tomorrow.
I don’t really know what to expect,whether they will do more treatment or not…I don’t know.I have been contacted few days ago by occupation therapist from hospital about equipment she will need at home in the nearest future.They talking about to deliver before she will be back home.I cannot see her being back home in this state.I hope they will refer her to rehabilitation centre first?.
It is probably a good idea for you to insist on being actively involved in plans for what happens next. If there isn’t a definite plan for a transfer to (for instance) a rehab facility, what can end up happening is that the person gets sent home from the acute hospital by default - not because anyone thinks it’s a great idea or even an OK idea, but there is natural tendency for it to become the thing that happens in the absence of a definite alternative plan.
I am actively involved with all Neurologist doctors and her MS nurse as well who is a bridge for MS consultant. Today they will review her MRI scans of brain and spinal and go from there. We do want her to be rehabilitate in the rehab center so I will discuss this for sure.
I would like to say that my beloved wife has passed away few days ago.Unfortunately she was fighting ruthless PML- IRIS thing…due to TYSABRI.
She has passed away in my arms being loved.
The MS consultant and Neurologist (in cooperation with other hospitals specialist) on the ward had no experience with this PML however they were doing what they can to gain the time for her to be able to survive such as Plasma exchange,steroids,etc
We all(including doctors) originally thought it was a relapse however it was not any more after 3rd MRI scan and lumber puncture.One would say what if they would start PML treatment on first symptoms??? like they maybe should when TYSABRI is used for 11 years but there are no clear guidance yet.
I would like to thank you all for your support.
I am so very sorry to read this. My thoughts are with you and your family.
I’m sorry for your loss Woj.