Flare up

[Greekyogurt]

I was diagnosed with PMR in March 23 and put on 20mg Pred which relieved all my symptoms. I was so happy. Reduced to 15mg in April 23 and was fine. Continued reduction and was fine on 10 mg. Then on 7.5mg since beg July 23. PMR symptoms returned in early Aug 23 to my lower back and hips, but not to arms hands shoulders areas. Is this usual?I am going to consult my GP today (probably by phone as difficult to get appointment) and ask if I could increase Pred. Is this a good idea and what if he refuses? It's all such a worry and so painful.

[DorsetLady PMRGCAuk volunteer]

hi, and welcome.

As you are fairly new going to attach this link if you haven’t already seen - and say generally too fast a taper -

healthunlocked.com/pmrgcauk...

If you reduced from 10mg to 7.5mg in one go, much too fast…from 10mg down needs to be 1mg steps every 4-8 weeks.

But if lower back and legs only affected at moment [although rest may join in] it could be bursitis - have you tried ordinary painkillers?

newcastle-hospitals.nhs.uk/...

[Greekyogurt in reply to DorsetLady]

Thanks. Yes I take paracetamol but only dull pain slightly. Good news I contacted my GP and she put my prescription back to 10 immediatelyfor 8 weeks. It was consultant who recommended the reduction. Advice to reduce by 1m welcome. Thanks all.Pain reduced slightly and hoping to soon get back to virtually pain free soon.

I love his site do helpful.

[DorsetLady PMRGCAuk volunteer in reply to Greekyogurt]

Good -but as I said when you start reducing again -1mg a time only, no bigger… and as you get lower might need to be even smaller…

[SnazzyD]

In addition to what DL is saying, are you being very active? PMR and Pred make one less able to take on muscular work, particularly if it is repetitive and strenuous, even if you were used to it before. A bit of gardening, window cleaning, loft clearing etc can be enough to make one feel a bit done in, often a day or two later. It is a common mistake to continue with daily life as normal when Pred has dealt with the pain.

[Greekyogurt in reply to SnazzyD]

Thanks Snazzy. I have reduced activity now. I was probably doing too much and will stick to light enjoyable activity and get help where needed. Bit frustrating but worth it. Still keeping mobile .

[PMRpro Ambassador]

Hi and welcome.

"Is this usual?"

It is if you are told to reduce the dose like that- I won't grace it with the name of "taper"/

You didn't take the pred, achieve a cure and now all you have to do is reduce to zero as you do with other illnesses. You are tapering or titrating the dose to find the lowest effective dose. Pred is just a management strategy, the disease process is ongoing, it lasts a couple of years at least, often considerably longer.

The first part of your taper was fairly standard even if we think it is often too fast for many, but below 10mg you must slow down. 1mg per month is more than enough and for many, too much. No taper step should be more than 10% of the current dose. Half a mg can be the difference between enough and not enough.

[Greekyogurt in reply to PMRpro]

Thank you so much

[Greekyogurt in reply to PMRpro]

Such helpful advice. My main concern is getting the correct reduction prescription. My GP was very helpful and increased to 10mg immediately. I will have to tell my consultant what happened at my next consultation in September. It was consultant who wrote to my GP and arranged the reduction. This all takes a lot of administration! Thanks

[PMRpro Ambassador in reply to Greekyogurt]

If your GP sees that side of things - they will also provide 1mg tablets. You will need them from now on.

[Greekyogurt in reply to PMRpro]

Thanks

[Greekyogurt]

Several weeks on. Pain in just back and hips became unbearable even though pred raised from 7.5 to 15 mg few weeks ago. Sleeping lots in day. Felt unwell. Pain walking and v painful to get out of bed.

Saw different consultant who said didn't think was PMR but my diagnosed osteoporosis in spine and hips. Referred me to hospital for Xrays, blood and urine tests. He reduced pred every 2 weeks till Nov eg: 15 to 10 to 7.5 now. Then 5 to 4 to 3. Follow up appointment with results after my holiday, at end Oct. Said to keep walking about.

I am following advice and working through pain and this week pain feels better but I still keep falling asleep a lot. I feel better in myself.

Should get prognosis and treatment plan at end Oct. Hope I can manage my relaxing holiday and stick to pred reduction plan.

🤞

[PMRpro Ambassador in reply to Greekyogurt]

Except osteoporosis per se is not painful. Do you mean osteoarthritis? However, what YOU are describing is also typical of back muscles involved in myofascial pain syndrome. Oral pred rarely helps, steroids injected into the trigger points do and so does manual mobilisation of said trigger points. And so does a flooding dose of 800mg ibuprofen and a hot water bottle where it hurts. I have been dealing with this for the last 18 months since a major flare. I can't have the best and fastest approach for me as I'm on anticoagulants but I am finally getting there!

[Greekyogurt in reply to PMRpro]

Thanks for replying. My consultant checking things out but doesn't think it's PMG as not in shoulders etc and was before. Reducing Pred not made things worse and I think gentle excercise and swimming is helping. I had osteoporosis confirmed in DEXA scan last year, doctor is looking at annual zoledronic acid infusion but not yet decided. Thinks I may have damaged back or hip bone and it's causing pain. Hope cause and more important relief found soon.Sorry to hear you have been suffering for 18 months and glad you say you are getting there, hope that means pain is less. Wishing you well.