Hi there,
My doctor is thinking that tysabri might be a more effective treatment for me in the long future, I am currently on plegridy and happy with it.
But I need to think about the possibility of tysabri if it protects me better in the future.
In any case, regarding tysabri, I understand I would need to visit the hospital once a month for injections or infusion. My nearest hospital for this treatment is 1.5 hour away from home. Plus the waiting time, recovery time after the procedure … I think that once a month I would either have to take medical leave for the entire day, or just call sick at work. 12 working days per year of absence then, just for tysabri. Note that my employer does not know about the MS, and I would like not to disclose it.
So, can you please help me with ideas? Anyone else in my shoes? How do you manage tysabri hospital visits and work / work leave, please? And have you explained your tysabri absenses to the boss? Thank you very much.
M.
Hi MariaB123, appreciating that you would not like to disclose the fact that you have MS to your employer; it might be the best route, particularly if you are in the UK.
One of the reasonable adjustments employers can make is allowing time for medical appointments/treatment (in addition to your annual holiday allowance).
Thank you for your prompt response, Theresa. I worry about disclosing it as I truly worry she will find a way to make me redundant. It goes wothout saying i do consider starting applying for remote, flexible jobs just in case. Xx
I am sure that you have good reasons not to have told your employer about your MS, but I cannot easily see how you can keep that up if you’re spending the thick end of a day a month at the hospital. It’s a bit ironical that the very treatment that gives you the best chance of staying well and being able to keep the news of your MS to yourself is the very one that will, practically speaking, oblige you to spill the beans to your employer. But there it is.
Well, it’s a far better reason than having to own up because you’ve been flattened by a relapse that keeps you off work for six months. Avoiding that grizzly fate is what natalizumab is all about. It gives you the best chance of calling the shots in your own life.
For what it’s worth I think that legally speaking your employer once they know you have MS is pretty much obliged to give you time off for treatment although the law is silent on whether that time off needs to be paid. So you shouldn’t have to use either sick days (which they aren’t) or holidays (which they aren’t either). It’s probably getting worth getting proper advice on that and I would give the MS Society Helpline a ring
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Tysabri is one of the most effective treatments and totally agree with what @alison100 says. Apologies if I’m intruding but a) is your Dr/Neurologist suggesting that you start now? And b) if you are sure your employer would find some way of making you redundant then are you sure you want to continue working there?
I’m now retired and on a weekly injection of Avonex which sort of leaves me feeling a bit rubbish for a day or two. When I was working I used to inject on Friday evening , thus leaving me OK for work the next week. ( this wasn’t because I was worried about work so much as I quite enjoyed work and would enjoy quiet weekends). I’ve no idea but do hospitals do e.g Saturday injection clinics?
As Alison100 suggests, give the MS helpline a call for advice on employment etc .