I’m diagnosed primary progressive. I was able to walk about fifty yards with a rollator until six months ago when I deteriorated to only being able to take four or five steps before having to sit down. Saw neuro in February who ordered an MRI with contrast.of my brain. He said I had no active lesions or inflamation. He said the DMDs act on inflammation and therefore wouldn’t help me. He asked me what my worst symptom was. I told him fatigue so he prescribed modafinil. Didn’t help. I spoke to my GP last week and told him how bad my fatigue , and therefore mobility, was. He said he didn’t know much about ms but suggested I tried a course of steroids . He prescribed 14 days of Prednisolone 50 mg. I’m on day five. Walked out 20 yards to my car ( with rollator ) and back again! First time ‘walking’ for weeks ! I’ve just walked from room to room using my stick. So, my question is, being primary progressive , why are the steroids so amazing ?
Mmmm, interesting. I was under the impression that there is nowt to help PPMSers.
But your experience says different. Great stuff!
Why not post this on the PPMS board?
I tried them when first diagnosed but they did nothing but make me feel “high” and sleep all the time…lol
Think you will have to contact your neuro and tell him about this…Happy for you x
Hi Johnh, I am diagnosed ppms I was prescribed mythoprednisolone 500mg for 5 days back in January when one day I just couldn’t stand unaided within 3 days I could walk around the house again.My consultant was very surprised that they worked despite scribing them over the phone for my g.p to give me as an alternative to being an impatient. They worked wonders for me. I had a further episode in March where I was completely wiped out and was seen at the relapse clinic Consultant told me they can only give a course of steroids maximum 3 times year, instead they gave me meds for the fatigue& a neuro pain killier,have since received a letter saying I have ppms with relapses. Pauline
That’s great news for you Johnh. Did they scan your spine as well?
Lets hope they carry on working for a while after you Finnish taking them, or you will be thinking, give me this tab on a regular basis, they won’t of course, I’m on day 8 of 15, (2a day)(1a day) (1alternat days) 15day total feeling sort of up @ down, daughters wedding 11th July hope it lasts till then? The pharmacy messed up a bit, gave me three times the amount I needed ms nurse said keep as back up, (ask me 1st) told my wife I was going to take 300mg on the day, should be a good speech. Lol
Blossom No, my spine wasn’t scanned. Maybe I have active lesions there. Day 6 and even more improvement. Drop foot gone and showering and dressing much easier.