Does anyone know if you can take steroids and also have your natalizumab infusion as planned? I forgot to ask the neuro who prescribed the steroids Going through a ‘bad patch’ which I think is a relapse neuro thinks it’s not so he prescribed them at a&e saying ‘it’s upto you if you want to take’.
Problem is I have my dmt infusion in a few days so not sure if I should I start them even though I need to asap cos I feel so wiped out. Thanks
I’m not sure I understand: are you saying that a neurologist in A&E prescribed steroids for something that he/she doesn’t think is a relapse? Did I read that correctly?
If you are in any doubt as to what is the matter and what you need, I think you should do your best to check in with your neurologist or MS nurse and make sure that you understand what is being recommended and why.
Yes I emailed my ms nurses last week as I think I’m having a relapse and no response yet due to them being overstretched . So as a last straw took myself to a&e, neuro who saw me said he thinks I’m having a ‘bad patch’ and he doesn’t think it’s a relapse but he will prescribe me steroids if I want to take them. He also booked me an emergency MRI after the bank holiday.
However I’ve also got my Tysabiri infusion appt coming up this week so was wondering can I start the steroids if I still have this upcoming appt to take my usual dmt, or do the two interact badly together.
I presume neuro or drs at a&e would’ve told me if it wasn’t safe I’m just a worrier as always
I do not know the answer to your question. Your back-stop is that you’ll be asked before your next infusion about any changes in medication and if you’ve taken the steroids they either will or won’t go ahead with the treatment. If you haven’t yet taken the steroids, it’s still an opportunity to ask the question for next time.
I do think you need to keep at your local neurology team, though. It’s weary work, I know, dropping messages into an apparent black hole and getting nothing back. But it’s the only show in town, so please keep trying. An email to the consultant’s secretary can sometimes help, as can a letter - an actual paper letter - to the consultant. A friend of mine who is a frequent flyer in another specialist area swears by sending that latter marked ‘private and confidential - addressee only’ and says it’s her nuclear option if she’s desperate and all else has failed, but I haven’t tried it myself so can’t comment.
I spoke to my neurologists secretary a few days back and she said she’d just do the same thing as me and that was email the nurses and that I would have to wait because they’re just too busy.
I got a bit annoyed as this could be a relapse which they really need to take a bit more seriously especially if it’s affecting one’s ability to mobilise but I digress.
Thanks Allison will call the dept before infusion and ask if there’s any point me going in for my infusion.
I am sorry that you have to make a decision (whether to take the steroids) without all the information you need to make an informed decision.