Thank you all so much for all the wisdom you've shared. I have already greatly benefited from all your advice. Please can I have your thoughts on this?
I have a GP appointment this afternoon and realised I don't fully understand if there is a relationship between the blood test results of ESR and Serum Ferritin and what PMR is doing.
I've read that when tapering the key is how you feel and symptoms but I've also read that people have blood work done to inform their tapering plan.
I started on 15mg Prednisolone on 26th March, then went onto 20mg on 16th April. I have done my first taper to 18mg on 17th June and have been absolutely fine so far.
I had a blood test on 26th June and ESR was 2 (it was 10 on 30/4 and 86 on 26/3)[0-19]. Serum Ferritin was 174 (it was 477 on 26/3)[11 - 307].
I was planning to taper to 16mg if still feeling pain free on 15th July but I wonder if my GP will say that because my blood tests show low inflammation that I should do a bigger drop or do it sooner. What do you think?
Am I correct in thinking that the only reason my ESR is lovely and low is because the Prednisolone is doing it's job as expected and the result does not give any indication on what the PMR is doing? Or can I infer that the PMR may have dropped back from it's previous level from those results?
I think I am very worried of getting all the pain back because 15mg was not enough when I was originally given the Pred, but at that stage my inflammation makers were very high.
Thank you as always for all your kindness and generosity in sharing your experience and advice.
(Well chuffed that the latest blood test shows my HbA1c is now normal and I have stepped back for the moment from the brink on Diabetes! It's now 38, was 47. 48 is diabetic. Yay!)
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The reduction in ESR levels shows the Pred is doing what it should, that is keeping the inflammation caused by the underlying PMR under control… it does nothing for the PMR itself - that is still chugging along.
By now the built up inflammation pre diagnosis/pre Pred should be out of the way, so the steroids are only working on the daily shed of substances [cytokines] which cause the pains so hopefully you don’t need as much Pred on a day to day basis as you did at the beginning when it was doing both jobs. Does that make sense?
If have another read through my intro post I linked to your first post - it explains it more fully in there… and on how to manage things ongoing.
Thank You. I will have another read of your intro document.
Yes that makes perfect sense and is reassuring that the reason we expect to be able to taper is because of the built up inflammation no longer there. As you say the Pred is now just doing the one job of working on the daily shed.
Thank you once again for such a clear helpful explanation.
"Am I correct in thinking that the only reason my ESR is lovely and low is because the Prednisolone is doing it's job as expected and the result does not give any indication on what the PMR is doing? "
Exactly. The autoimmune disorder underlying the PMR symptoms is there in the background at some level but there is no way of assessing that directly. The only test is to reduce to slightly BELOW the amount you need and see when the symptoms return - hence the emphasis on slow tapering with small steps to get that titration result.
The higher dose is to achieve a springclean to get the stored inflammation cleared out before starting the taper - it allows a buffer so you can reduce. You are looking for the dose that is equivalent to the daily batch of new inflammatory subtances. To start with too low a dose means it isn't clear that out - the full bucket of inflammation must be empty or there isn't room for the new stuff ...
Thank You PMRpro for your reply. You and the wonderful Dorset Lady are so good at explaining all this. I've reread DL's intro information and of course she does fully explain it there too. It does seem to take me a bit longer to get my head round things so I appreciate everyone's patience and kindness.
I now have it straight in my mind so know what to say if the GP wrongly thinks the good results indicate something else. I've no reason to suspect she would but just want to be prepared. She's been fantastic so far.
We get plenty of practise - and it has allowed us to develop a range of analogies that help people without a medical background understand what is probably going on, Sometimes I think it might behoove a doctor or two to read it because they don't always get the basics of PMR!!!
Yes you certainly do! I so wish the Doctors would do some reading on here. But I guess they are a bit busy and have to know a little about lots of conditions so tend not to be experts on many. I'm just really pleased my GP knew exactly what was causing all my pain and could help.
We're very lucky to have this group with experts in.
That’s why I usually say hang on to it , and reread in 3 or 6 months when you have a better understanding. It’s all a bit too overwhelming at the beginning.,
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