Morning everyone, hope you’re all well? Bit of a longish post this and I’ll try not to confuse everyone!
I’m currently signed off work until next Saturday (13th). I’ve heard back from my MS nurse yesterday and my bloods are all fine so I’m good to go with starting Tysabri, the date I’ve been given is the 19th. I was always planning on asking for the night off on the day of my first infusion and had made work aware that I may need another day or so too, although I don’t think they ever really got how the side effects may affect me.
Now my problem is do I go back on the 13th as I do feel able to? I’ll only be working three shifts then have a few rota’d days off before I have my first infusion. I’ll be due to work the night of my first dose. If I go back and then am off for a couple of days after my first dose that’s going to then count as two occasions of absence or do I stay off, ask for the doc to extend my sick note, until I’ve got the first dose out of the way.
I suppose the uncertainty of if I’ll get any side effects from the first one are making me a bit cautious. I may not get anything in the way of side effects! Work have been ok so far but I don’t want to push my luck with them. I don’t think I could explain my thinking to them because they really don’t get what’s involved with this. I swear they think I’m just getting a new prescription from the GP and popping some new pills.
What would you guys do? Should I expect side effects, I know tiredness is pretty common, how bad is it?
Hope you all managed to make sense of that! xx
hi claire
we all understand your concerns.
stick with your sick note but make your gp aware of your worries.
i don’t have any experience of tysabri but i hope it beats up your ms without any nasty side effects.
carole x
I have been on Tysabri for 3 years now (time flies when you are having fun!) and I have been very lucky in that I haven’t had any bad reactions to it. HOWEVER the first couple of infusions did make me a bit “wiped out” so I wouldn’t have been happy about doing a full shift straight afterwards. Whether this was a genuine side effect or a manifestation of my worries about a new treatment I don’t know - but I was absolutely zonked! (Didn’t help that my neuro likes to accompany the first transfusion with intravenous steroids! Not all neuros do.)
If your boss thinks that it is simply “popping a few pills” you can educate him/her hopefully by pointing out that when you go into hospital for Tysabri you are counted as an IN PATIENT in hospital which shows that it is a serious procedure. I have also managed to explain it to people by saying that it is a “procedure like chemotherapy” which helps them understand that this isn’t like popping a paracetamol you can just “gulp and go”. I would consider getting your well note extended by a week to cover the couple of days afterwards. Hopefully - like the vast majority of people - you will be fine.
clairebear76,
I tend to agree with the comments above, probably good to stay signed off - and see how you react to the infusion. My own experience with Tysabri was that I did not have any significant reaction but as with any treatment there is a slight stress and tiredness impact.
Good luck
Mick
Hi Claire.i would get the note extended also. I have not had any bad experiences with Tysabri either but i do get a bit tired leading up to my infusion and can feel a bit wired for a day or 2 after. I would take the extra time just to get your first one out the way and then you can see how you go. I would also say no to worry yourself about it,you get all built up then once its over you think WTF was all that about 
Hope all goes well for you…