help please - Im day 10 of 15 mg Prednisolone

[JessJess21]

hello all, im so glad you are out there. Im on day 10 of meds - 15 mg Prednisolone and its sadly not a magic wand. But i do feel some changes. My night time range of motion is a little better but still shoulder s and knees and now hands. How long should i leave it before telling my gp and do you think the meds will work? Feeling down about it - it all came on so suddenly ( end of march 2024). Thanks to you all.

[Antirrhinum]

hi JessJess, I was started on 15mg of pred and it was 6 weeks before I could drop to 12 and a half. After a month of that I’m now on 10mg. It seems that everyone’s journey is slightly different but don’t worry, you will get there. I’ve had to learn to be more sedentary and restful- a difficult thing for me, but it’s necessary for now. I’m learning to love jigsaws ! Best wishes .

[JessJess21 in reply to Antirrhinum]

Thanks so much! X

[DorsetLady PMRGCAuk volunteer]

As said, you might need a bit longer in 15mg or even slightly higher dose. In the past, patients were on initial dose for longer - so perhaps weren’t expecting a miracle cure in such a week or so - but expectations of patients and doctors seem to have changed. Would you say there’s a 70% improvement - that’s the criteria..

When are you discussing with your doctor again, or were you just given a plan? If no better in another week then contact them.

In the meanwhile, have a look at this -

healthunlocked.com/pmrgcauk...

[SnazzyD]

You may need longer, which is why 4-6 weeks on the starting dose is often recommended. Some do get a more rapid response but not all. It may be that your dose is not high enough also but it’s a bit too early to really know. What are you doing in your day? That can affect things too.

[PMRpro Ambassador]

Fifteen mg is towards the bottom of the starting dose range quoted in the recommendations for managing PMR - "lowest effective dose in the range 12.5 to 25mg" and I would say your doctor wouldn't be wrong to up the dose to 20mg. Even 1mg can be the difference between a response and not so it is worth adding 5mg for a short time to see if that works better. You only get the magic response when the dose is enough to deal with the daily dose of inflammation AND remove some of the stored up inflammation too.

[Positive__]

Hi JessJess21,I do so sympathise. I also was started on 15mg Prednisolone but it was not a high enough dose, initially I got a big improvement to neck and shoulders within the first week but not the fabled pain free from all symptoms I'd read about.

In my case my symptoms in Gluteal (bum) muscles and legs gradually got worse during the next 2 weeks and I could barely walk downstairs first thing in the morning.

I then (following advice on here) asked my Dr if we could try 20mg Prednisolone to which she agreed.

Then I had gradual improvement and after 2 weeks at that higher dose was largely painfree except in hands/fingers.

I did get completely painfree after another 3 weeks on that level.

So do keep the faith. 🙂 You may still get a slow improvement but if anything starts getting worse go back to your Dr.

Hopefully you may still get to be painfree. 🤞

There's so much good wise, helpful advice on here from people that know this condition inside out.

Really wishing you well. Good luck. 🍀

[NewPMR53 in reply to Positive__]

So interesting re your hands. I started on 15mg but increased to 20mg after 9 days - now much more under control apart from my hands and fingers. Have had to move from 5am meds to 8am due to the now weekly addition of alendronic acid (can’t go back to bed once that is taken) and am stiff in the am again now but that wears off by 10/11. So only constant issue is the hands and fingers.

[DorsetLady PMRGCAuk volunteer in reply to NewPMR53]

You don’t need to change the timing of Pred every day… just the day you take AA.

[NewPMR53 in reply to DorsetLady]

Really??? I swear I read should be taken at roughly the same time. Hurrah though - I see my husband off at 5 then go back to bed so it really suited me letting it work its magic before I get up to face work. Thanks DorsetLady 😊

[DorsetLady PMRGCAuk volunteer in reply to NewPMR53]

Ideally should be taken at a similar time… but once a week probably shouldn’t be catastrophic 😏..and always worth a try.

Why have 7 iffy mornings if you can get away with only 1, once a week..as we always say, do what’s best for you…

Let us know how it goes..

[Positive__ in reply to NewPMR53]

Hi NewPMR53, Yes it is strange. I didn't really notice the stiffness/pain in my hands until I'd started on Prednisolone. I really don't know if it was because it wasn't there or the neck/shoulders/Gluteal etc. pain/stiffness was so bad I couldn't think beyond that. Once I was on the 20mg and was painfree apart from the hands/fingers it was strange. The stiffness/pain in hands and fingers always disappeared by noonish. I was eating anti inflammatory and noticed that when one day I had a lot of carbs and pork they were way worse the next day and for 4 days after. Then the stiffness/pain subsided. Then when I had a tiny portion of cake (so white flour and sugar) an increase in pain the next day and for a few days after. Luckily the pain has now completely gone. I am careful to avoid sugar. I'm also on Alendronic Acid but take my Prednisolone about 7am each day so no change.

Good luck with it all and really hope you get completely painfree soon. 🙂

[Fatsiajaponica]

Hi Jess,

You will get there, good advice on here. I am 10 days into a 20mg dose and did improve dramatically, I was in a poor state and it needed to be given a good wallop to quieten the inflammation. I'll be on 20 for another 10 days and then down to 17.5 if all is well.

Having read avidly the posts on here and the research papers etc..I recognise the importance of understanding this illness and also being in control and real collaboration with your medic.

Good luck, we'll be looking out for an update.

[Meggsy]

Hi Jess21,

15 mg was not enough for my symptoms. GP raised the dose to 25mg which still took a few days to remove all symptoms. I then came down to 15mg by 2.5mg drops each 3 weeks. I hope you find your answer soon.

[WilfDog]

Hi Jessjess. Unfortunately, it may take more than 10 days before you see significant improvement. Everyone is different in how they react to medication and some don't see any change before 2-3 months have passed. I know it's difficult and frustrating when you just want to be well, but hang on in there, hopefully you will have noticeable improvements after a couple of months. If not return to your rheumatologist for advice. Here's hoping the pred starts to work for you x

[PMRpro Ambassador in reply to WilfDog]

If it takes 2-3 months for pred to work in PMR the main question is whether it really is PMR.

[WilfDog in reply to PMRpro]

Indeed, you're right, that is a possibility. If there is no improvement at all after 8 weeks I would start to question it, but as we know the efficacy of any medication can differ with each person. I would expect a much earlier response than 8 weeks though.

Hopefully, you'll see some noticeable improvement really soon Jessjess21.

[JessJess21]

thank you all. Yes so frustrating- and feel for you all too. Ive just asked doc for 20mg - maybe she will say no - but worth a shot? Thanks for all help and advise. X

[Flivoless]

I was started at 15 but it didn't touch the sides had to go to 25 before I obtained the blessed pain relief.

[sidra1968]

15 mg is probably not enough. Only one way to find out

[JessJess21]

Hi everyone - you are all so helpful. What an amazing resource this is - and a real eye opener for me too (as I work in NHS uk health etc- this shows the power of patient experience and community !!). I followed your advise - and asked my GP to increase to 20mg and almost immediately that night i noticed a difference in my night time range of motion and energy (the pain is so sapping). This morning i took 20mgs and noticed how much quicker i was getting up in the morning, bathing etc and no longer need a stick to get downstairs. It shocks me how I was normalising the pain too. no tears this morning. so the 20mg must be helping a bit. not the miracle yet - as i think its early days - as you all advised. I'm managing my expectations too. But thanks to you guys - the extra 5mg seems to have made a quick difference. wishing you all much love and thanks. Jess x