I have had MS since 2021 and have been on Ocrevus since then. Iv had yearly scans and they have all been stable.
My recent scan is now showing increase in size on current lesions and also new lesions identified. The remainder of the other lesions are stable.
This has hit me rock bottom today as this is the first time in 4 years that iv had new lesions appear. I really enjoy Ocrevus and was over the moon when it was working. My Consultant is taking my case back to the MDT to discuss and she will let me know.
Just wondering if anyone else has been on Ocrevus and has had new lesions appear ? did they change you to Tysabri
The most confusing and upsetting part is that I have no new symptoms that I know of. These increases in lesions and new lesions are all on the spinal cord. I am still able to do over 10k steps a day without any helping aids.
That is very disappointing news for you to hear and I’m sorry.
I’m also glad that they are keeping such a careful eye on you and not waiting for disabling trouble to strike before considering a drug upgrade.
It’s a kick in the teeth to find out that your MS is not being well controlled at the moment. That just sucks. But thank goodness they are good drugs to switch up to if that’s what you need.
Iv had some news on this which is great but has made me question the NHS now
So since my report had new lesions, my MS consultant took it to the MDT to discuss and look over the report.
The new person who looked at the report compared it to my past scans, she reported back that in fact there is no change and my MS is stable. She mentioned that there are no new lesions.
Apparently the method that was used for the scanning may have resulted in the scan showing new lesions, the person who viewed the scan in the first place was the person who reported new lesions.
I had a chat with my Consultant about this and she apologised and said that she will take this up the ladder and find out what happened. As you can imagine I have lost my trust with NHS, Since iv had my scans iv been sent to different hospitals with different MRI machines, iv always heard the phrase that “our scanner is better and newer than others”. Iv told my Consultant that I want scans at the same hospital at the same machine going forward.
Has anyone else had any false reports before like this ? Luckily my Consultant took it to the MDT as she was shocked, had she not I would have had to change medication and would have thought that iv got new lesions.
@Andy45, I’m so sorry to hear you’ve been through this - really upsetting and distressing to be given the wrong information. Must have been such a shock, then another big suprise to have processed everything but then be told that it’s actually an technical/interpretation issue instead.
Very glad to hear that at least you can stay on the medication that works for you and you don’t have any new lesions after all. But I’d also have my trust shaken a lot and would be feeling a lot of anger/uncertainty etc.
I haven’t heard of anything similar happening but thanks for the update - useful to know in case anyone else experiences a similar issue. Now you’ve flagged this, I hope your medical team really ensure that the sure the same thing doesn’t happen again for you and other patients.