Query Re First Few Days: Prednisolone :Edited

[Hopeful66]

Firstly, a huge thank you for everyone's support/responses to my introductory post - I am bowled over, obviously feeling a little sensitive because I spent most of the time catching up on your replies with a snotty nose and tears running down my face - the overwhelming relief that there is recognition/understanding out there, really is, at the risk of sounding sentimental, (which is something I have never been accused of, ever!), is heartwarming x

My question is that the doctor, who will be seeing me Monday, (I will be on day 6 on 20mg), was extremely positive and said that I would make a significant improvement before then - it's day 4 and my symptoms, pain in neck, shoulders, wrists, back & hips are still all present - albeit lessened - is this normal? I did notice on waking on day 3 that I most certainly felt better in myself and movement was not as restrictive but that's it, the residual discomfort/stiffness is present all day.

Am I expecting too much at this early stage, (I still have a nagging worry about the diagnosis being correct, but appreciate that it's probably down to the years of misdiagnosis)?

Thank you all again for your very kind advice.

Edited to say, saw Dr this morning - she immediately saw that the relief wasn't as she expected it to be and upped me to 30mg - booked me in for further bloods on Monday, with a follow up Tuesday - so, hopefully all in hand. On the plus side, pelvic pain has abated significantly and getting out of bed in the mornings is easier. Pain and stiffness is reduced around midday, but returns late evening - I'm not sure how much this is to do with there being a lot more sitting down in the late afternoon, early evening? Big thanks to all of your replies x

[Twopies]

We’re all different, but it took me 3 days for any significant relief. I am one of the rare ones, I believe, who has never been totally pain free although from following this board, it seems that most are. After 3 days, like you, my pain was greatly reduced—I could get out of bed by myself, dress myself, etc. progress! Best wishes to you, keep us posted!

[piglette in reply to Twopies]

I would say that the majority of people are never truly pain free with PMR, but a million times better since taking steroids!

[Twopies in reply to piglette]

I thought I was in the minority??? Like 20% not pain free?

[piglette in reply to Twopies]

I think it is the lucky few who are totally pain free!! The aim of steroids is to make you at least 70% pain free if you have PMR.

[Koalajane in reply to piglette]

I agree with your comment

[Charlotteab in reply to Twopies]

I have never been totally pain free either, on 15 mg of Prednisone, but it's 1,000x better than it was at the beginning, when the pain was intolerable and totally debilitating. I can deal with minor stiffness in my legs and arms in the mornings -- it's a walk in the park compared to what it was like before diagnosis. It did, however, take a few days for the Prednisone to take effect for me too. Some people report almost instant relief, but that wasn't my experience.

[SheffieldJane]

I think that your symptoms can take a while to settle when you’ve gone undiagnosed for a long time. Some people need 25 mgs initially, so keep an eye on those symptoms!

Sorry that we made you cry but crying is good for you and that’s what coming home can feel like.

Patience and acceptance are qualities we have to work on always.

I think day 3 was key - an improvement is indicative of a correct diagnosis. Wishing you a continued improvement, every day. 🌺

[suzy1959]

I got PMR when I was 52 but it took 9 months to get onto the Pred. If I remember correctly, it took about 6 days to feel the full effects and I have never been completely out of pain. I tell you this just to emphasise how individual the experience is !!

Good luck on your journey and, hopefully it will not be too bumpy a ride.

[Charlie1boy]

Hi,

For what it’s worth, I was started on 20mg, then saw my GP for a second time 3 days after the initial diagnosis.

She’d seen me struggling up the stairs to her consulting room, and when I sat down, she told me she’d seen me, and was putting me up to 30mg!!! I stayed on this dose for three weeks until the inflammation was controlled, before starting to taper down.

We are all very different. For some, the prednisolone works almost instantly, whereas for others, it takes its time. What matters is what works for you.

Good luck.

[DorsetLady PMRGCAuk volunteer]

Some people seem to get a miraculous response, but that doesnt mean everyone does... and 4 days in is not all that long...if I wasn't getting a response by say 2 weeks then I might be concerned.

The criteria often quoted for a PMR diagnosis is at least a 70% reduction in pains - and that can be over a 3-4 week period.

Just monitor how much you think things have improved day by day so you can discuss honestly with GP on Monday.. he may advise staying on 20mg for longer and let me know how that goes, or maybe increase to say 22.5mg or 25mg.

I suspect the former.

[Zebedee44]

Hi, you might find you need a higher starting dose to get more relief and to clear out the build up of inflammation. My doctor prescribed 50 mg for the first three days but I don't think he knew much about polymyalgia. My notes show recovery enough to make me think I could do some long awaited tasks, big mistake. Be patient and kind to yourself at this stage.

[paulus65]

Hi Hopeful - when I started at 20mgs the dose wasn't quite enough so on docs advice upped to 25mgs for a couple of weeks. That got me to 70-80% pain free and over about 5years have tapered very slowly to 1mgs.

You'll find that everybody on this site will have a different experience of PMR/pred but I think the trick with all this is to take a dose which is slightly higher than the absolute minimum you need. It's worked for me and so have have avoided flares.

Best of luck

[Sueloucam]

I had to go up to 30mg for several weeks, so don’t be surprised if that happens. Be strong and do not let the doctors try to reduced your steroids when you are still in pain. I have battled with my GPs throughout the 4 years and I am a Consultant Nurse (prescriber). Luckily I had worked with my rheumatologist and she had confidence in my own decision making regarding reducing or increasing my steroids as necessary. Good luck, it’s a long journey you have started but there is plenty of support here. Take it day by day.

[Hopeful66 in reply to Sueloucam]

Many thanks, I saw the Doctor this morning, didn't say a word, she took one look at me and upped me to 30mg - I did assure her that there was some relief - but in her opinion it needed upping - booked me in for more bloods next Monday and a follow up appnt. on Tuesday. So hopefully things will be brought under control sooner rather than later.

[Sueloucam in reply to Hopeful66]

Best of luck.

[DorsetLady PMRGCAuk volunteer in reply to Hopeful66]

Good move by doctor... you might find the extra gives you relief for longer - hope so, but it might take a few days... so do keep a diary

But you may be one of those patients that needs to split their dose... but before that is considered, you need to give the increase time to work.

[PMRpro Ambassador]

Sounds like a keeper - realistic!

I started with PMR at 51, wasn't diagnosed for 5 years. Six hours after 15mg pred I had at least 70% relief, it took a few months to get to over 90% but it was good. But nearly 20 years on - I still have it. Everyone is different and no two people will have identical pathways.