Hello all,
I am being basically refused steroids by my MS nurse, and my MS neurologist is just blanking my requests for this - helping to spiral me into a relapse that is worsening at a time where I have much that I need to be alert and at my best for especially around my career.
I am not sure why they are reluctant - I have only once in my life (6 years ago at diagnosis) had a course of steroids.
Try your GP. Way back when I used to have relapses quite often, my GP at the time was happy to prescribe as he knew I wouldn’t take them more often than recommended. I always had a course of steroids in the house so I could start them as soon as possible.
Mind you, not sure how that would work these days when it’s such a minefield getting a GP appointment in the first place! Worth a try though. Good luck
What’s your ms nurses reasoning for not going with steroids @Camaban ? And as for your neurologist ignoring you, that doesn’t sound very professional. Them and your ms nurse could explain why they don’t want to prescribe them. As kestrel says, you can always try your GP. They might be more accommodating, especially if you have a good relationship with them. Wishing you the best of luck in getting the steroids.
I think there has been a change in prescribing guidance over recent history. (I’ve only been diagnosed for 9 years).
I received IV steroids after the major relapse that hospitalised me and led to my diagnosis.
From observation a few people were still being given steroids as an occasional pick me up.
Others were having problems with their bones because of frequent steroid use.
The guidance was MS patients should only be prescribed steroids for immediate use (not to be held as a reserve supply).
They should only be prescribed for significant relapses (for example those impacting mobility or sight).
The final recovery from a relapse was the same regardless of whether you took steroids or not, but would be quicker with steroids.
This meant that they should be used in the same way as antibiotics. Only when really necessary, so you had them in reserve.
When I tried to get them after a major dip in my mobility it did prove difficult. The delays did prove useful as the severe relapse symptoms preceded those of COVID. (Steroids and infection are not good bedfellows).
I suffered nystagmus in an agreed relapse but we decided against steroids.
Hope this helps with understanding the issues and that things have changed.
As with antibiotics they may be prescribed by some practitioners to show they are doing something.
This makes a lot of sense to me. Sometimes nothing else will do, but like all heavy duty drugs they have heavy duty side-effects and are best avoided until you are firmly at the ‘nothing else will do’ stage.
Has your Nurse explained why?