Saw GP on Thursday, who I think is a little in the dark about PMR, he said he has never seen a case before, but reads all the guidance. I started at 15mg and great results. After 3 weeks went to 12.5mg, also comfortable, then on hi guidance, went to 10mg after 3 more weeks. After 5 days on 10mg, started getting shoulder ache, not as bad as before but more than when i was on higher dose. Booked appt with doc who said that it is common as your are coming down on the pred, to get a few aches, but he will do a blood test in a week and see whats happening. He told me to up the prednisone to 15mg for the 4 days before the blood test as that will see what is happening and then come down to 10mg again.
I asked if the upping of the dose will make the blood test faulty, he said no, wont make any difference, but will stop the aches for me.
My question is, that doesn't sound right to me. Surely the blood test should be done on the dose he wants me on, not an inflated one?
Any advice please.
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pastamaid
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No he doesn’t understand.., and going up to 15mg Pred will not give him a true reading of what is happening at 10mg.
Whilst the guidelines may say reduce form 15mg to12.5mg to 10mg at 3 weekly stages.. it certainly doesn’t suit all… and if he reads them he see this is what it actually says.
The suggested regimen is:
. Daily prednisolone 15 mg for 3 weeks
. Then 12.5mg for 3 weeks
. Then 10mg for 4–6 weeks
. Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg alternate days, etc.)
**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.
Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.
Some benefit from a more gradual steroid taper.
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
* note the comments - these are just guidelines, not everybody is able to conform.
What a load of ... If you take higher pred for 4 days before the blood test, that will lower the amount of inflammation and - how surprising - also lower the markers that show the presence of inflammation.
Yes, it is usual to get some aches as you taper - but a return of the PMR symptoms after they have improved is not acceptable, it shows you are now at too low a dose to manage the inflammation. PMR is a chronic condition and as long as it is active you need enough pred to manage the current level of inflammation. And actually, he obviously knows that - or he wouldn't have said it would get rid of the aches for you. Needs to get his brain in gear ...
He may have read about PMR but he definitely does not understand it. You have reduced by 30% in six weeks for an illness that you expect to have symptoms for an average of two years often longer. As PMRPro says you may get some aches in reducing. If it is steroid withdrawal it usual happens in the first two or three days and can be helped with a paracetamol. If you have reduced to fast and you get a flair that does not usually happen for a week or two. Going back to 15mg should knick the PMR on the head, but I would not go back to 10mg but above that. Normally it is suggested you go back to the dose you last felt comfortable.
Out of interest have you been prescribed vitamin D with calcium and been offered a Dexascan? It is recommended as steroids can affect bone density as a side effect.
Even without increasing your dose, your blood tests could be normal at this point since you have been on prednisone for weeks. Reducing your dose should be driven by your symtpoms and not the blood tests. Steroid withdrawal pain is definitely a thing but usually happens within a few days. Pain that returns after a few days to a week is likely means your dose is too low for your disease activity.
Also, the recommended drop of 3 weeks is too short for many. It often takes 4 weeks or more at a dose before reducing the next step. In addition, many of us need smaller drops… like 1/2 mg once you successfully taper to 10. It sounds like you are being rushed too quickly. I would suggest printing out the slow taper from this site and present that at your next appointment.
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