After being with Avonex for around 5 years, due to side effects I have been offered to move to Mavenclad , I am considering it among other.
I am concern about the time your immune system will be really down. How have you managed that? Have you gone to work or worked from home? Social events…? did you wear mask?
I don´t wish to fully isolate myself.
I have raised it to my neurologist who suggested to do normal life, no mask really needed..contrary to what I would have thought, she lessened the risks.
So I would appreciate your experiences on how to handle this time if you took precautions since day one or the 3rd month when the lymphocytes tend to go down.
No experience, but this is from the professor of neurology at Barts and might be of interest.
" As cladribine is an immunosuppressive therapy, it may increase the likelihood of infections. To derisk infections, we recommend routine baseline screening for HIV, syphilis, hepatitis B and C and tuberculosis. In addition, we screen for exposure to VZV, and if seronegative, we recommend getting the VZV vaccination before starting cladribine. Because the T-lymphocytes are only partially depleted by cladribine, leaving behind sufficient numbers to protect you from opportunistic infections, which are very uncommon in cladribine-treated pwMS. For example, to my knowledge, there has not been a case of progressive multifocal leukoencephalopathy (PML) in cladribine-treated pwMS. You will notice in Mavenclad SmPC that cladribine is associated with a higher incidence of cancers. With time, this risk has dissipated as more data has been collected. Therefore, I don’t think cladribine is associated with a secondary malignancy risk."
I finished my first year of Mavenclad in September last year. Although in the back of my mind I am conscious of very busy environments and my immune system being lower, avoiding people who have a cold etc, but from my personal experience, I have led a ‘normal life’, and haven’t actively worn masks or isolated; I think it falls down to personal choice, and what you feel comfortable with. Mask wearing is a lot more socially easier now over the past few years, so wouldn’t think anyone would bat an eyelid if you decided to wear one
You’ve clearly thought it through and found that middle ground between being cautious and still living your life — which isn’t always easy with treatments like Mavenclad in the mix. It’s good to hear that, in practice, you’ve been able to keep things feeling “normal” without it taking over everything.
