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Steroids and SPMS

Hi has anyone tried steroids that has SPMS? Thanks Deborah

Deborah,

I was under the impression steroids were only given for a relapse.

With SPMS, the condition is constantly progressing - in theory you’ve already experienced and gone passed the relapsing stage, so I’ve never heard of steroids being prescribed for SPMS ? (…and I believe they’re only just starting to test if various medications might help the progressive stage of MS, whether that’s ‘secondary’ or ‘primary’ !!)

Of course, I’m no medical expert and I’m sure others will be along soon to share their experiences and knowledge.

Dom

you can still be offerd steroids in spms if you still have relaspes with the spms,

a lot of people think that you cant have relaspes with spms,but you can.

my relapses have got more severe since i was diagnosed spms.

mrsJ, that makes perfect sense to me, developing SPMS does not mean you don’t have RRMS at the core! That’s why it secondary - it’s an add on (I’m sure someone will correct me if I’m wrong!)

I’m likely PPMS but some things did improve a little with my first dose of steroids and from what the consultant said to me, there were steroid infusions that I could sign up for on a trial basis (I don’t have much more info on that as I was a bit upset at the time!)

Sonia x

l have SPMS -31yrs - and never relapsed. lts here and its never gone - so no remitting either. Came on when pregnant - and has stayed. Must like me. l did have my amalgum fillings removed about 28yrs ago. [had lots of fillings prior and during pregnancy] - and had a definite improvement after that. My speech was so slurred - not only did l walk like a drunk - l sounded drunk to. But since then its been the same. My worse problem now is - l have worn out my ‘good’ leg- its had to support and balance me all these years and has now said enoughs enough -so now my good leg is my bad leg. Did not think after all these years of trying to keep mobile l would now be crippled [l can say that about myself] by arthritis in hip/knee/ankle joints. l have had hip-relacement - but still can’t walk without holding on to rollator because of knee/ankle. On the list for knee-replacement.

Did have a course of anabolic steroids - injections in my bum! about 25 yrs ago. And - for me - l would have been better without. Never do it again.

What l can’t understand - Everyday - l get on my HealthRider machine and Eliptical Trainer and work away. lf you saw me you would think - ‘She’s Fit’ Then l get off and can’t walk without holding on to my rollator. And l am in such pain with it - but nothing hurts when l am ‘working out’! Anyone seeing me would be in touch with ‘Saints and Scoungers’ tv prog! l have been told by physio - to do exercises to strengthen muscles after my hip-hop and now before knee-op.

Anyone else like this?

Fx

ps.meant to say after removal of fillings my speech came back as normal - and has never ‘slurred’ again. And the electric shock type pain in my jaws went - plus the metallic taste and sensitivity.

And since taking LDN - l have had no Trigeminal Neuralgia. Something that nearly drove me to suicide. Not joking - the constant pain in my ear and jaw - that nothing would stop. All the ENT appointments and ghastly test l had - nobody came up with ‘it could be the ms’.