Tapering

[craighead72]

I have been on prednisolone since April 2022 starting at 20mg. Currently on 11mg a day. Have various side effects including weight gain swollen ankles skin blood splotches midriff swollen with fluid retention. Never given any proper advice on tapering dosage but prescription just kept being renewed automatically. Had a consultation with another GP last week to be told that my CRP and ESR blood tests taken a few days before are “normal” and at the time of diagnosis were only borderline! Also when I said I would come off Pred overnight if I could (but understood it had to be done very gradually) I was told I could do that as I had been on it for so long and had not had any PMR symptoms for months and months. That almost sounds like I have not or maybe never needed Pred!

Does that make any sense and should I try it?

[123-go]

NO! It doesn’t make sense to stop pred abruptly! The prednisolone has has halted your normal production of cortisol and if you stop suddenly you would be putting yourself at serious risk of adrenal issues. I am horrified that the GP thinks it would be fine to stop without tapering and he/she needs to read guidance re PMR and it’s treatment…seriously. I would be looking for another GP who is knowledgable in the management of Polymyalgia Rheumatica.

Please tell about your early symptoms and what prompted you to see a GP: there is nothing in your bio to inform us.

[craighead72 in reply to 123-go]

Thank you. I will continue with my normal tapering approach.

[DorsetLady PMRGCAuk volunteer]

hi,

Couple of points….

Your bloods at recent tests would be within ‘normal’ range - that just means the Pred is doing what it should be doing- I.e. keeping the inflammation at bay,

Up to 20% of patients don’t have raised markers, before diagnosis or throughout their PMR…. Which is why symptoms are the key… and presumably you had enough of those plus slightly raised markers to get your diagnosis.

Just because you aren’t having any PMR symptoms at the present again confirms the Pred is doing its job, doesn’t necessarily mean your PMR has gone into remission.

I can’t tell you whether you have PMR or not , but looking back through your posts I’d it’s looks very PMR ish…

Suggest you taper as if it is…so 1mg per month as usual guidelines… and see what happens. And if you need to see a GP again, find one who knows a bit more about PMR.

[craighead72 in reply to DorsetLady]

Thankyou. I will carry on with my normal tapering approach which seems to be working. I asked my question because this is a GP with over 30 years experience and the most highly regarded by patients in the area and I could not reconcile that with what she was saying about Pred. I will raise it with my allotted GP (in the same practice) when I get the chance.

[SnazzyD]

I will echo 123-go. Stopping Pred at 11mg suddenly could be life threatening and your GP should know that. You adrenal function that produces your own natural cortisol will be temporarily shut down. If you stop Pred suddenly, you may have an adrenal crisis. This is basic knowledge for doctors. It can take a year or so before full function returns after you have stopped Pred which is why we reduce ever so slowly once under 10mg.

As for the PMR, the median time for it is 5.9 years and you are still about 18 months. You can’t tell whether it has gone into remission until you have been off Pred for some months. Your inflammatory markers are meant to be normal; you’re on Pred. They can’t just say PMR is gone because of time and 11mg is plenty to keep your symptoms at bay.

As for side effects, have you yet tried a low salt (fluid retention) low carbohydrate (weight and diabetes) diet? It is often a necessary part of taking steroids. Nearly all doctors seem to forget or not know this vital bit of information.

[craighead72 in reply to SnazzyD]

Thanks. You will see my replies to 123-go and Dorset Lady. I will look again at low salt diets which I did try before without much change.

[SnazzyD in reply to craighead72]

I had to practically eradicate salt from my diet to avoid fluid retention. Sometimes it’s difficult to know if it is fat or fluid but fluid retention shifts in days not weeks or months. Have you mentioned it to the doctor who might want to check your kidney or cardiac function or other meds. What is it that makes you think it is fluid retention and not fatty tissue? Almost total salt eradication was a trial so being fairly certain which it is can be a good idea!

[craighead72 in reply to SnazzyD]

Probably both but stomach swells up after eating even modest amount and subsides a bit overnight. Also ankles swell up during day and subside back to normal overnight.

[SnazzyD in reply to craighead72]

On Pred I used to get puffy ankles and wore light compression socks during the day. I assumed it was not helped by the Pred effect on veins and capillaries such that they weren’t able to fight gravity as get blood back up the legs so easily. Dose reduction helped. If I had had too much salt the fluid tended to end up round my face, arms, middle and legs. Is this a new thing? Might be worth checking with the doc anyway and also mention the bloating. My innards were never particularly happy on Pred and meds like stomach protecting one such as Omeprazole can cause bloating. However, other things can cause it.

[craighead72 in reply to SnazzyD]

Funnily enough I took myself off Omeprazole recently for about 3 weeks and stomach swelling after eating reduced. Went back on to it a week or two ago and the problem resurfaced so I will ask about this next time I get hold of my GP ! Thanks for your input.

[SnazzyD in reply to craighead72]

Omep’ blew me up like a blimp. I tried the ‘old’ sort of stomach med which affects the H2 histamine receptors and found this side effect reduced. This sort fell out of favour when the new kid on the block was the proton pump inhibitor but still has its place.

[Denbo51]

I have been exactly same , Doc told me this is normal,and thinning of skin especially bottom of my legs I bruse and rip Very easily, which I hate.iv been on just over two years I'm down to 3mg a day from 20ty mg it's got to be done slowly as a flair up will come if trying it to fast.I have been doing a week on then lower,it's been fine so far no flair ups just hope the skin on legs and arm gets thicker,take care good luck 🤞

[PMRpro Ambassador]

NO! Not unless you want to risk being very ill, possibly even life-threateningly so. It isn;t even a GP who knows about PMR - it is adrenal function too. Stopping pred when you have PMR that is in hiding is unlikely to kill you but stopping at 11mg after being of more than that for 18 months as you have could result in an adrenal crisis. I would be inclined to report their suggestion as negligence ...