Hi guys,
I was on ocrevus for quite some years but afterwards I needed a change as I felt progression and my doctor suggested Mavenclad.
Mavenclad didn't really work for me, my lymphocytes got back way too quick, MRI shoved enlarging leisons, symptoms got worse, started to have mobility issues.
My doctor (working for kind of neurology private practice group so a very large company that cover everything from doctors to all testing and many related medical issues not only neurology) told, that he doesn't have anything for me and I should look for BTK inhibitors clinical trials. What I was ready to do.
I found a way to a head of MS Center, at a large city Hospital, one of the most important in the country. And I got a meeting with one of the Head Doctors who specialise on clinical trials in MS, as a second opinion.
He was happy that I approached as they are recruiting for clinical trials for Remibrutinib for Spms, what u seem to be moving into now...
Until he got to know that I had Mavenclad...
The moment he saw that I used Mavenclad he told that all 🆑 nical trials are closed for me as Mavenclad is immuno modulator that potentially may have effect on your body for years.
I was so pissed at my doctor. I asked the other one immediately to take me over, so I wouldn't have to go back. I know that the trial requirements are always different and doctors might not know about this factor, but for me Mavenclad was just a rapid decline for me and it shut all the doors in front of my nose.
Now because of that I will go back to Ocrevus ASAP, I can't be admitted to BTK inhibitor studies. So I have to wait for their approval.
Tolebrutinib was approved in Europe, anyone got it? I can't as my liver is not too great by itself, but would be super curious to hear about anyone's experience. 🤔🤗
PS: Wow, so many people who want to shove it in my face that it is my screw up and that Mavenclad "cured" them. I am genuinely happy for u if it is so... And they have the audacity to tell me that I did something wrong, navigating the biggest health crisis in my life. I did something wrong - I trusted my doctor who didn't disclose all the facts - and that is not my mistake. IMHO. that's why he won't provide health care services to me anymore.