PMR Update

[Sungolfer]

Good morning everyone - sunny chilly day here in Devon - uplifting after all the grey and rain!

So it’s now 7 weeks since I started Pred at 15mg and after return from golf holiday in Spain which went very well and was in no pain at all - so after 3 weeks cut to 12.5 which also settled well and body seemed to adjust well. So 2 weeks on that and then tapered to 10mg which I have been on for almost 3 weeks. Fine to start presumably because had a reservoir of pred in my system - but last 4 days have noticed more morning stiffness which takes longer to dissipate. Still active walking dog which gets everything going and playing golf - will take a Paracetemol before that - but totally pain free after for rest of the day and evening.

I have been on antibiotics now 3 courses for cystitis/uti which I’ve never had before - so don’t know if that can have any effect. In all other respects apart from taking Omeprazole, Cal D and Levothyroxine 75 mcg - im not currently taking Alendronic Acid as I’ve recently had a tooth out - to be honest having read up about it not sure if I want it - maybe a Dexa scan? - I’m healthy and despite being aware of nasty side effects of Pred I still regard them as my friend knowing that without them I would be barely able to move!

I’m due to taper by 10% a month from next week but wondering actually whether my body is finding 10mg slightly too little. I’m having repeat bloods done on Monday to check inflammatory markers etc. I’m lucky I do have a brilliant GP surgery.

So that’s where I am and would just be interested to hear from this very helpful and supportive group re the tapering and whether it’s a balancing act to expect return of some symptoms which are manageable as you taper down?

Thank you so much!

[DorsetLady PMRGCAuk volunteer]

Hi

Have to say to be down to 10mg within 7 weeks is a bit quick….in hindsight you probably would be haven better to stay at 12.5mg for longer than 2 weeks. That’s only just long enough to know current dose is sufficient before you reduce. Now at 3 weeks into 10mg, I think your PMR is saying ..’hmm, not quite enough Pred”…

I would hold next week’s taper… and maybe even go back to 12.5mg another week or two.. and once you get to 10mg - stay on each dose a month at least. ..and 1mg a time initially.

It’s not unusual to feel a bit ‘off’ when you reduce, but you need to learn the difference between steroid withdrawal and a flare - so see this -

healthunlocked.com/pmrgcauk...

UTI etc are very common when you start Pred - makes you more likely to be unable to cope with minor infections etc …

As for AA request a DEXA scan before taking it, and then only if you really need it… most don’t..

Lovely morning here in Dorset too…sunny and frosty.. 😊

[Sungolfer in reply to DorsetLady]

Thank you for that- I will wait for Bloods but certainly won’t reduce from 10 until after that - have just ordered 1mg tabs so might go up 1.

Yes definitely will ask about a Dexa scan.

Hoping this third dose of AB’s will knock the UTI on the head - yes I thought that Pred would make me slightly more susceptible to uti and urtis! Oh joy.

Enjoy the beautiful day and thank you again.

[DorsetLady PMRGCAuk volunteer in reply to Sungolfer]

1mg may well be enough -hope so! But if not, you have options,

[Rugger]

We are all different, of course, but my initial pred regime was 15mg for 2 months; 13mg for 1 month; 12mg for 5 weeks; 11mg for 2 weeks; 10mg for 2 months and after that, a slow taper.... Even so, my PMR 'flared' at around 7.5mg!

Having 1mg tablets will help and enable you to use 0.5mg steps too.

Your symptoms as well as your blood markers will tell you how things are at each stage. Mine were checked by my GP every 2 months in the early stages - 3-monthly now.

Best wishes.

[Sungolfer in reply to Rugger]

Thank you for your reply. I think the dosage and initial 2 tapers my GP got from the “guidelines” for reduction from 15mg - in fairness he did say you may find a recurrence of your symptoms a little in which case contact him. As symptoms are manageable but not virtually pain free as I was I will as you say see my blood results after Monday - and go from there. This is such a great site - so helpful - and yes also as you say we are all different and respond in different ways. Thank you again and best wishes to you too!

[Rugger]

Your GP sounds great. I had an amazing GP until he emigrated to Australia this summer!

Just for information, here is an extract from the British Guidelines for managing PMR:

"The suggested regimen is: 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.

Daily prednisolone 15 mg for 3 weeks

Then 12.5 mg for 3 weeks

Then 10 mg for 4–6 weeks

Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5 mg alternate days, etc.)"

For you or anyone who is interested the full text is under 'Resources' on the PMRGCAuk website.

pmrgca.org.uk/information-a...

[Sungolfer in reply to Rugger]

Thank you again - so he’s almost right! maybe should have held at 12.5 for another week before dropping to 10 - will see what happens next week.

How very inconsiderate of your nice GP to emigrate to Australia! Hope replacement will be half decent!

[SpaghettiWestern99]

Don’t be surprised that every time you taper there is a wobble of some description as your body adjusts

[diana1998 in reply to SpaghettiWestern99]

Very true. I always felt irritable and off colour for 5 days every time I dropped. Some of us are more sensitive than others. My close friend has no symptoms at all, lucky soul. Under 5mg the feelings disappeared thankfully.

[Sophiestree]

you could try cutting out the Adcal I know PMRPro often mentions that it can irritate the bladder so maybe up the calcium in your diet if you can instead and when all is cleared up try DMannose. I would definitely have a Dexa so at least you know your base line. Also consider Vitamin D which is good for your bones, Pro and I both take 4,000 iU but I also take K2 as I do have Osteoporosis.

[Sungolfer in reply to Sophiestree]

Hello and thank you! I have just bought Dmannose - and was waiting to finish my antibiotics before starting - which I have and now will. I will attempt to organise a Dexa - whether I will be able to do this on NHS who knows! Will ask at surgery tomorrow when I go for my bloods. Pretty sure that 10mg is but too low for me judging by stiffness am in thighs and weirdly just one arm! Thank you for your advice - much appreciated. Best wishes

[PMRpro Ambassador in reply to Sungolfer]

D-mannose actually helps when on abx - it is said to get the bacteria out of the bladder wall where they hide and exposes them to the abx which are in the urine

[Sungolfer in reply to PMRpro]

Thank you very much for that info!

[Orange_2022]

The lower you go, the slower you go in my view although I got to 8mg in 4 months but stuck for a long time on 7-6mg. I've learnt (thanks to this forum) to stop when the aches start...

Definitely get a Dexa scan. My GP kept telling me to take Alendronic Acid and eventually I said I wanted a scan first. I now take it - reluctantly because i was at the top end of osteopenia - but no adverse effects 6 months in. My dentist says there's no problem with dental treatment unless it's surgical. Extractions, crowns, fillings all fine in his view.

[Sungolfer in reply to Orange_2022]

Thank you for that - reassuring what your dentist said. Mine said it is so rare to have complications but that he would not want me to take it until my gum was totally healed following an extraction three weeks ago. Will attempt to get a Dexa scan first though. Best wishes

[Orange_2022 in reply to Sungolfer]

I was reassured. I'm already on AA so maybe the advice varies but hopefully you won't need to take it anyway! Good luck.

[Sungolfer in reply to Orange_2022]

Thank you - mentioned at surgery that i was keen to have a Dexa Scan - GP to contact me - we shall see!

[PMRpro Ambassador]

You might like this - from a top PMR expert group and the author is now Prof Quick at Luton and she still uses the taper! Because it works better ...

rcpe.ac.uk/sites/default/fi...

I think the year at 10mg is the clue to its success.

[Sungolfer in reply to PMRpro]

Wow a year at 10mg - interesting read, thank you. Will look up Prof Quick too. Best wishes