My experience of PMR . As a retired nurse, I knew what was happening to me.

[greekdog]

I also checked out NHS website My GP started me on 10mgms of prednisolone plus the calcium&vit d. 1-2hrs after taking the first dose it was as though I had been unchained !!!!(bodyweight influences dosage) I am 56-57 kilos.After approx 6 mths I had to reduce by 1mgm per month . I managed to get down to 3 mgm but very uncomfortable, tender hands, wrists as well as the upper arms and below waist. The severity is variable.I am now o n 5mgm, I don't wish to go lower, as well as tenderness there is the lack of strength, like being unable to release the handbrake on the car!!It is written that this disorder lasts 2-6 yrs, I'm hoping for the 2yr option.If we can be com fortable and functioning perhaps we need to be patient.It is 14mths since PMR arrived . Re the lady who feels her heart beating,it is quite common. Wishing all a quick recovery.

[DorsetLady PMRGCAuk volunteer]

Hi

Patience is something we all have to learn!

Bit more info - if needed - healthunlocked.com/pmrgcauk...

[Papapaul28 in reply to DorsetLady]

Hi I’ve seen reference to Dorset Lady’s taper, could you please post the taper plan as I’m interested in following it. I’m currently taking 4mg of prednisilone per day, having come down as directed from 30mg and struggling a little even taking paracetamol to suppress the discomfort.

Many thanks

[Bcol in reply to Papapaul28]

Hi, you can find the taper plans, as below.

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer in reply to Papapaul28]

healthunlocked.com/pmrgcauk...

But you may well have reduced too quickly and are below the level you actually need - and if thats the case, whatever way you reduce you’ll have issues....

Maybe a bit more info would help us help you.

[PMRpro Ambassador in reply to Papapaul28]

If paracetamol suppresses the discomfort it is questionable as to whether that is due to PMR. Ordinary painkillers rarely do anything for PMR - especially paracetamol which has little antiinflammatory effect.

[Papapaul28 in reply to PMRpro]

My GP has suggested paracetamol during the early stages of reduction which he is proposing should be 1 mg per day, I am currently taking 4 mg. He did say I need to take a full daily dosage of paracetamol, 2 x 500mg tabs 4 times per day. He advised taking the full daily dosage as most take 1 one off dose of paracetamol so don’t get the benefit of the cumulative effect. He also suggested paracetamol was more advisable to help during early stages of reduction as the focus was on reducing steroid dosage.

I am also trying to identify which foods and drink trigger a flare up.

[PMRpro Ambassador in reply to Papapaul28]

One lady had a GP like that - he was convinced her pain was returning OA pain and/or withdrawal. She agreed to try paracetamol but it so happened a few weeks later she had a routine blood test. The liver results were so high that it triggered an emergency ultrasound because they were afraid it might be cancer. It wasn't - it was the paracetamol. The difference between therapeutic and pathologic dose is very narrow - and far more so in older patients. Pred may have adverse effects - they rarely kill your liver.

PS - you don't really mean you are reducing 1mg a day? Just 1mg on the daily dose?

[Papapaul28 in reply to PMRpro]

No sorry 1mg per month.

[Papapaul28 in reply to PMRpro]

I’m concerned about paracetamol’s affect on my liver and also anti inflammatory use which I haven’t introduced nor do I intend to. Hence the question about reduction plans, I’ll give Dorsetlady’s plan a try.

[DorsetLady PMRGCAuk volunteer in reply to Papapaul28]

Some find paracetamol does help with steroid withdrawal - but I would be concerned that your GP is trying to reduce your Pred too quickly, but as we have no information on your tapering plan it's difficult to give pertinent advice.

[Papapaul28 in reply to DorsetLady]

I’m interested in following your suggested plan hence the initial question. Once my PMR had settled and after a few months I reduced by 5mg per month until 10 mg following which I have reduced by 0.5 mg per month. I have tended to take the reduced dose on every other day for say a week and then drop down to the lower dose for the remaining 3 weeks before dropping further by 0.5mg and following the same pattern the following month.

I’m debating whether to go back to 5mg and following your tapering plan from that point.

Thanks

[Papapaul28 in reply to Papapaul28]

Although uncomfortable, particularly in the morning, I’m still playing golf 3 times each week, attending Crossfit on 4 days per week and outdoor cycling on 2 days per week. Perhaps the stiffness is continuous lactic acidosis build up 😩

[PMRpro Ambassador in reply to Papapaul28]

That is a very real possibility!

[DorsetLady PMRGCAuk volunteer in reply to Papapaul28]

It might be sensible. At such low doses, 0.5mg can make a big difference to being okay - or not being okay.

You seem to have done so well, so far- you don’t want to spoil it now.

[Louisa1840]

We ALL wish for the 2 year option!! I am a very positive person and was sure mine would only last 18 months! Not so. I am now 3 and a bit years in. I am down to six and a half mgs of prednisone and possibly feeling adrenal function shortage. I get walls of fatigue but always have since I started the PMR journey.

All the very best to you. Be patient and recognise that we are all different. This wonderful forum will be your salvation.

[Lollybygolly]

Bless you! The same happened to me. Hip and knee problems then painful wrists with carpal tunnel. 10mgs of Prednisolone and I was ‘cured’! I’m down to 5mg. The Covid has kept me indoors too much so weight gain is pretty bad. But I’ve painted about 50 paintings since I started in January. A marvellous bonus and antidote to loneliness and disability. I dread coming off them as I’ve tried and it’s an immediate return to pain.