newly diagnosed with PMR

[Thiago1396]

hi, I am 78 year old male, had Covid from Christmas Day 2022, lasted 3 weeks and was dreadful. Afterwards was taking time to fully recover, early March 2023, started experiencing pain in my right shoulder, doctor diagnosed strained rotator cuff, put onto co-codamol 30/500 for pain relief and exercise regime. Over the next 3 or so weeks pain spread to left shoulder, back of my neck, buttocks an hands, wrists and fingers. Eventually early May 2023, following blood test and discussion of my symptoms I was diagnosed with PMR. Put on 15mg prednisolone daily, take the after breakfast. Around 90% pain relief after 3 to 4 days and continued to improve for 2 to 3 weeks.

Then doctor advised me to reduce to 12.5 mags prednisolone for 2 weeks and then 10mg for another 2 weeks. However after 5 days of the 12.5mg the pain in my right shoulder started returning. So on the 7th day I put myself back on 15mg. It took 3 to 4 days for my pain to subside. Another blood test arranged for next week and I need to inform the doctor of my decision to go back to 15mg level. After reading the experiences of others, it is obvious that PMR is a very personal experience, in that our bodies determine our pain and level of prednisolone needed and the reductions tolerated without pain. I want to reduce my prednisolone, but only with regards to remaining relatively pain free.

Thank you all for your contributions, they are helpful and appreciated.

[PMRpro Ambassador]

Hi and welcome!

I think that is a very succinct appraisal of life with PMR!!! Why, why, why are they in such a hurry!

[Nextoneplease]

Hi Thiago and welcome 😊

I have to say I agree with you, your doctor has suggested a very quick reduction in your dose. Generally people seem to need at least four weeks on the full effective starting dose, before starting to reduce. And even then, it’s best to be sure the new dose is effective, before reducing again - so that’s another month on, in your case, 12.5mg.

Have you seen the reducing/ tapering plans in FAQs to the right of this page? Some excellent information in there.

It is not a race to zero pred, as you know, but a quest to find the lowest effective dose for you. And quality of life matters!

Good luck and again, welcome 😊

[Thiago1396 in reply to Nextoneplease]

does my weight have an influence on the level of prednisolone I need to control the pain?

I am 21 stone, currently on 15mg daily, reducing to 12.5mg on Saturday 16th June.

Someone half my weight on the same dose of prednisolone would surely have a much higher concentration of prednisolone in their body, on a daily basis.

I am experiencing some pain twinges from late evening and this causes me concern regarding my imminent reduction and my tel consultation with my doctor next week.

[PMRpro Ambassador in reply to Thiago1396]

Not necessarily -there are so many variables and weight is just one of them. I got an amazing result in 6 hours with 15mg, I am not very overweight but am borderline obese according to my BMI - but there are others who weigh a lot less and are slimly built who either took much longer or needed more to get a result. It depends on the version of PMR you have, what your pred receptors are like, other comorbidities, lifestyle and even diet possibly. The bottom line is, you need what you need although if you need an awful lot more it must be considered this may not be the PMR WE talk about since PMR isn't the disease, it is the name for a specific set of symptoms.

[DorsetLady PMRGCAuk volunteer]

hi and welcome,

As said many times - most people find that 2 weeks at one dose is not enough to know it is enough before you reduce - and if you do that a couple of times [as you have], you end up in a pickle - do wish doctors would realise that…

Maybe have a look through this for you info,- and try and impress upon your GP [ politely] that his way hasn’t worked -

healthunlocked.com/pmrgcauk...

[Thiago1396 in reply to DorsetLady]

my relief from pain will dictate my dose of prednisone, that paramount!

[piglette in reply to Thiago1396]

Spot on. If you feel fine great, if you have problems on reducing after a week or so STOP. You have gone past your particular level of reducing for the time being. In fact it is better to reduce by a small amount steadily than by larger amounts that make you yo yo.

[Thiago1396 in reply to piglette]

I will suggest to my doctor that I stay on 15mg for at least a couple of weeks, then reduce by 1mg steps.

My doctor planned that I go from 15mg to 12.5mg for 2weeks, then 10mg for 2weeks, then after 4 weeks on 10mg, start to reduce by 1mg at a time (period not specified)

[piglette in reply to Thiago1396]

Some people can manage that sort of reduction, but delicate little flowers like myself can’t!! I did find that under 10mg reducing by 0.5mg every four weeks was preferable in my case. I would always leave four weeks between reductions as otherwise you may overstep the mark without realising it.

[Thiago1396 in reply to piglette]

Thank you, never realised 0.5mg reduction was an option. I am attracted to that, once I reach 10mg daily. I also like the 4 weeks periods, before another reduction.

[piglette in reply to Thiago1396]

Be a tortoise not a hare!!

[diana1998 in reply to Thiago1396]

I did exactly the same as Piglette and it worked well re no pain. Be a tortoise! Slow but sure.....

[Francesbarbara in reply to Thiago1396]

Below 5mg I actually reduced by 0.25mg and it has been good for me. (I am 81) Now at 2mg - steady as she goes. You will learn a tremendous amount from this forum - I don't know what I would have done without it. Welcome to the group.

[PMRpro Ambassador in reply to Thiago1396]

If you can cut the tablets - even 1/4mg is an option and one very dedicated gentleman bought a precision scale to weight tiny amounts!

[MiniSpec in reply to Thiago1396]

You can buy pill cutters at the chemist. They cost around £3 - £4 and are very useful for cutting the 1mg tablets in half. I can recommend them!

[PRL1957 in reply to Thiago1396]

You will probably have to use a pill-cutter to split 1mg pills. I have found the Fullicon pill cutter to be very effective.

[Thiago1396 in reply to PRL1957]

thank you, bought!

[Hunter134 in reply to Thiago1396]

I've been tapering on and off over 4 years.I realized my body didn't like me too taper quickly .I tapered only 1mg from 15 til 10.mg.Iam at 9 now and dropping .5 from that .I've stayed on the dose for 5 weeks.Ready to try taper again.Good luck.The body let's you know if it's too fast!

[Thiago1396 in reply to Hunter134]

when reducing from 15 to 10 @ 1mg steps, I take it you went 5 weeks before the next 1mg reduction. Thereafter 0.5mg reduction steps at 5 week intervals. This ruduction pattern appeals to me. I want to remain pain free and I think being a tortoise will be better than being a hare for me.

I am now seeing if taking my prednisolone 15mg after breakfast is thirst for me. I am planning to take 10mg after breakfast and 5mg after evening meal. I’m joining this reduces my shoulder twinges when I go to bed. I hope I don’t need to go u to 20mg daily to control these shoulder twinges.

[Hunter134 in reply to Thiago1396]

I hope it helps your shoulder.Some don't like to split doses.I would take the 15 mg to mop up the inflammation.Then reduce by 1 mg when u feel better.

[Loyd]

A big welcome to this forum! PMR is not easy. I’ve had it for 4 years and have tried 4 times to get below 5mg pred. Still stuck on 5mg. You will probably have to go go much slower. Doctors don’t seem to understand! Wishing you the best.

[Temeraire]

Excellent advice as always. Also It seems the lower we get the slower we drop. Everyone different of course and you will learn what you can tolerate. Good luck.

[PMR_sufferer1]

I would suggest monthly blood tests and pred taper once results are through with agreement from your doctor by 2.5mg as that seems to be the preferred taper amount by month.

Again talking to doctor considervsoreading the dose as it does hrlp reduce pain especially in the morning.

Good luck.

[Tiggy70]

Welcome to the forum. You have come to the right place for help and reassurance from very knowledgeable people. Good luck with your journey 🌸

[Missus835]

Well done you to up your Pred to 15. That taper was way too fast. Pred does not cure PMR, it does relieve the symptoms. The slower the taper, the better. Quality of Life is important and there is no need to be in dire pain while reducing (if it's even time to reduce yet). I've been on Pred since Jan. 2022 and still tapering. PMR is a very personal experience, but most on here have experienced everything that goes with it. Stick with this forum and we will help you along the journey...and it is a journey not a mini vacay.

[PMRCanada]

Welcome! I stayed at my initial dose of 20mg for about 6 weeks to ensure all the inflammation that had built up over 5 months prior to diagnosis, was mopped up. You too had symptoms a number of months prior to starting pred, so perhaps you would benefit from staying on your initial dose longer.

You also have the option to taper your dose down by 1mg a month instead of a 2.5mg drop every two weeks. As others have mentioned, symptoms and quality of life rule.

All the best in your journey….glad you found us.

[Thiago1396 in reply to PMRCanada]

thank you, I believe you are correct!

[Mayadill]

Hi. Like PMRCanada I was on my initial dose of 20 mg for many weeks, in fact 7, after which I readily came down to 17.5 mg.

[Hosers2]

If you are taking any type of statin (for cholesterol), you might want to talk to your doc about statin side effects. They may be part of your problem.

[Thiago1396 in reply to Hosers2]

This report: ncbi.nlm.nih.gov/pmc/articl...

[Thiago1396 in reply to Hosers2]

and this: ncbi.nlm.nih.gov/pmc/articl...

[Hosers2]

Thanks for the links.

Finally, researchers are realizing that Statins may be the cause (in some cases) of PMR, RM, Lupus, and other muscle related illnesses.

I firmly believe my taking Simvastatin for three years was the cause of my eventually getting PMR. The muscle aches and weakness (shoulders, hips, wrists, hands, and neck were identical in both Simvastatin use and PMR.

Thank goodness I did not go through with rotator cuff surgery (both shoulders) and carpal tunnel surgery (both hands).

[paulus65]

People on this forum who have best results seem to be those are in full control of their tapering regime, without too much interference from docs.

Best of luck and take is slowly, then a bit slower.