Forum

Primary Progressive and Steroids

I asked these questions on Everyday Living but nobody really knew the answer. Do steroids help primary progressive patients? If steroids dramatically improved my ms does that indicate that I have RR ms? Can anyone help? John

John, I think as suggested in EL, you need to speak with a Neuro. I know it’s frustrating but you may need more MRIs etc. and I saw you initially asked how to maintain the positive effects of the steroids.

Nobody here can tell you with any certainty. I think that the steroids do give you a certain “rush” and that is not something that can be maintained with steroids (as they also cause damage over the longer term).

I had some improvements from the steroids and those things have stayed good while other things have worsened. My neuro said I ‘likely’ had primary progressive and said only time would tell so I need to be reviewed by him.

Sorry John, I know it’s not the answer you want to hear but you really need to be seen by a neuro as others have suggested.

Sonia x

Hi John, generally it’s considered that steroids don’t work for PPMS … But some neuros do seem to try them, and Sonia has had improvement so who knows. So little seems to be known about PPMS and one bit of research concluded that people with PPMS might in fact have had very mild RRMS and only realise something is wrong when it becomes SPMS (I think that’s true of me as have had years of strange symptoms that came and went). What that research does highlight is how little is known about PPMS. So I agree with others, only a neuro can answer your question, but with dramatic improvement I would lean towards RRMS. Hope you get some definite answers soon and come back and let us know what neuro says. Pat x

Hi John

I was given a 5 day course of oral steroids on dx and they did absolutely nothing for me apart from ruin my taste buds and give me a slight tan!

I’ve probably been PPMS since 2007. From all I’ve read and heard, my story if typical for most PPMS folk. My neuro was not surprised and gave them to me in a spirit of ‘no harm in giving it a go’…(apart from my tastebuds!)

Thanks for all comments and advice. You’re all correct , of course. I should see a neuro. My doc has prescribed another course of Prednisolone, and if it helps, I’ll see the neuro armed with the information. (I’ll see neuro anyway !) Sonia, I’ll heed your advice. John