I recently had a two week course of low dose oral steroids. The effect was dramatic ! Mobility, fatigue, bladder all greatly improved. However, the benefits largely disappeared as soon as I finished the course. I know that I can’t take steroids long term, but are there any other drugs that would give the same benefits? John
I’m likely PPMS and did find things were good when I was on my 5 day high dose steroids but deteriorated again when I stopped - have you tried LDN yet? It was something I had to try after hearing the positives from other PPMS users - it stimulate endorphin production so it’s helped with a lot of symptoms (not too much with me walking tho). There is a LDN trust site that worth a look, (it’s Low Dose Naltrexone by the way) - my GP didn’t want to prescribe as it’s not and MS approved drug but your GP is worth asking first, get the pack from the website and ask your GP. If it’s a no go, the website cab help you find one that will privately prescribe it for you.
I had my first MS Physio appt the other day and she said I should ask my gastroenterologist to prescribe it given the positive for me. I’d been seeing the gastro team for nearly 2 years and had lost weight etc. the LDN is also good for crohns which was what my diagnosis looked like (there’s ulcers but all biopsies/bloods are normal), between the steroids and LDN I’ve managed to claw back a stone in weight and despite a PPMS diagnosis which is pretty awful, everyone keeps saying I look so well!
Sorry if you’ve heard about it before, I’ve been really happy with it. I did have to pretty rapidly reduced my dose, when I got to the optimum dose - my spacticity actually worsened so I’m back down to 2.5ml a day and that suits me fine just fine - that reminds me, there’s a facebook group too
Hi Sonia Thanks for the post. I’ve been on LDN(2mg) since I was diagnosed eight years ago. I’m supposed to be ppms as well and steroids aren’t supposed to work for us !
Yes, I know, I had my fingers an toes crossed that I wouldn’t be told PPMS when I had my 2nd neurology appointment BUT I had already caved and bought a walking stick between finishing the steroids and going back. The steroids did make the L’hermittes subside a lot, in fact I don’t even have it all the time now. I think part of MS is the unexpected reactions to different meds. Interesting to hear you’re on 2mg, 4.5mg freaked me out a bit as I felt worse so suddenly.Take care - Sonia x
I’ve tried the oral steroids, not much benefit for me. So I guess I am ppms although the last neuro who prescribed the steroids reckoned I may be RR but with very long cycles!! Prescribed me 6 other things as well to test her argument even though I’d told her I’d already had 2 opinions from top specialist. So just tried the steroids and threw the other scripts for drugs she was pedalling away!
Incidentally use them too much and it causes brittling of bones, so would want that as a complication getting older !!
Hey, don’t just presume that, it seems the goalposts do move a lot with MS!
From what I’d read, steroids don’t work for everyone, even with RRMS (sometimes it’s just a case of waiting for the body to repair itself). I keep hoping I might just have very long cycles…, when I first saw the neurologist, I was literally only just at the stage of starting to panic - probably in the couple of weeks before I saw him, I truly thought I was fine and maybe had some trapped nerves or something! Because they don’t work for everyone, I suppose that’s wjy I was still convinced it was RRMS.
So when people say I’m brave about my diagnosis I sigh - brave or stupid?! I really can’t decide even now. I do accept I have MS but I still can’t quite shake the belief that I could get better (see, stupid), even if it’s hard work! lol
I saw a physio this week and she recommended Baclofen for my stiff/jolty leg muscles - I still found myself negotiating with the GP about taking a reduced dose, I just can’t quite give in to it either!
Phew, apologies if that turned into a bit of a rant - my point is, I really don’t think they know! Let’s see if we can’t surprise them eh? I don’t see my neuro again for over 9 months - I intend to at least walk into the room, even it it’s with crutches