day 12: Prednisolone beginning to make a difference!

[Preposterous]

It’s Day 12 of my steroid trial to see if this is PMR (am on 15mg prednisolone) …. this isn’t a question but I just wanted to share that I woke in the night feeling something was different / inflammation not kicking in … and I woke just feeling a bit achy but able to leap out of bed, (well not leap exactly), move about relatively freely - I feel so thrilled something has begun to shift. And reading posts here and advice offered has been / is being so helpful. I know this is just the beginning…

[DorsetLady PMRGCAuk volunteer]

Good to hear slight improvement so as we said before you may be one that needs longer on starting dose or slight higher dose than some.

Don’t let doctors be in too much of a rush and make sure they give you time to get proper control of your illness.

[Preposterous in reply to DorsetLady]

Yes, I’ll definitely follow your advice on that. My next GP review following more blood tests is in 2weeks or so. I’m noting down observations on how I feel on a daily basis so I can really get a sense of changes. But today feels like a milestone !

[PMRnewbie2017 in reply to Preposterous]

In the longterm you'll find keeping a daily diary so valuable. After 7 years I still keep notes but not as detailed as before. It's easy to see patterns emerging and provides evidence to back you up at your Dr appointments.

[PMRpro Ambassador]

Good - I remember that feeling of being able to move freely after pred worked as if it were yesterday! Luckily I didn't have to wait that long! As DL says - resist any attempt to rush you.

[Preposterous in reply to PMRpro]

And the sun is shining!

[PMRpro Ambassador in reply to Preposterous]

Always a plus!!!!

[AtopicGuy]

That's good news. Better late than never. Be careful not to over do things, however. Autoimmune conditions tend to wax & wane whether they are being treated or not. "One swallow does not a summer make", as they say. Fingers crossed!

[Preposterous in reply to AtopicGuy]

Thank you! I was literally just replying to a friend’s text saying I’m not so euphoric today as yesterday but haven’t gone into reverse. I’m trying to assess how much to do as exercise (going for a walk in this case) seems a positively good thing but not too much. How long have you had to deal with this?

[AtopicGuy in reply to Preposterous]

I first tried prednisolone almost 5 years ago. I've been on and off it three times and it always works quickly. Unfortunately, despite my symptoms being most like PMR, the doctors can't decide which autoimmune disease I have. Therefore they are denying any further treatment. It's a Kafkaesque nightmare.

[Preposterous in reply to AtopicGuy]

I’ve just read your Bio, and I can’t even begin to express my sympathy - indeed horror - for all you’ve gone through for such a very long time. Good luck with all your future investigations and I hope one day things will be better.

[AtopicGuy in reply to Preposterous]

Thank you. I should open a book on which comes first: death or diagnosis!

[sidra1968]

Wonderful to hear!

[UnicornDancer]

Hello Preposterous, in my experience my first 15mg of pred, prescribed by a Locum, worked almost instantly - took the first dose at about 10am in the morning and at 2pm I was lifting a kettle, opening fridge door, buttering cream crackers and generally rejoicing that something was available to help my woes!!!! Almost two years since first symptoms and now on about week 58 of being on pred as my own GP HUGELY reluctant to keep me on the pred that the Locum prescribed., despite my pleas and tearfulness. The Light At the End Of The Tunnel is in view and I hope it is all power to our elbow - Literally!!!! TALKING TO PEOPLE AND RAISING AWARENESS HAS NOW GOT PEOPLE ASKING HOW I AM, AFTER SOME PRETTY VICIOUS COMMENTS WHEN I WAS FIRST PRESCRIBED - all good wishes x

[walkingalong43]

I've been taking prednisolone for a different reason (hypersensitivity vasculitis) but my mother had PMR which she developed when she was in her 70s. Her GP tried to take her off prednisolone many times when they thought it was under control but she always ended up going by going back on it. She died at 101 taking 5mg every day for a very long time, though I don't know for how many years.

Good luck with maintaining control of your PMR.