Advice needed

[Mfaepink1973]

I’m 71 and until last October I was very fit and healthy then suddenly had aches and pains in my shoulders, hips and knees and felt like I’d aged 10 years. I was diagnosed with PMR in April and started on 20mg prednisalone. My symptoms disappeared within a week which was like a miracle. I’ve been having blood tests every 4 weeks and had dose reduced as my blood count improved so went from 20 to 15mg then 10mg then to 7.5 but now my symptoms are returning (fatigue, pain in shoulders, hips and knees) I had a phone appointment with GP this evening and he doesn’t want to increase prednisalone until I have another blood test. Is the GP right to base treatment entirely on my blood count regardless of my symptoms?

[SheffieldJane]

This taper is too fast. Your blood tests are not a reliable guide for tapering. Pred alters them by banking down the inflammation levels so that your CRP and ESR results can look normal even when the symptoms ( the only reliable guide) are running riot. Always be guided by how you feel and never taper more than 10% of your dose at at time. Allow 4 weeks between drops and pause if your symptoms are building up after a taper. Your first drop should have been 2mgs. You can use a pill cutter when you get to the low doses under 10mgs. I needed to drop by half a mg after 10 mgs. I would return to the last dose where you felt comfortable and rest there for a bit. These too fast tapers just land you back at the beginning again. DorsetLady lady has written good clear guidance in FAQs. I would familiarise yourself with it. With the best intentions doctors often make this mistake.

[piglette]

It sounds like you are starting a flare and as SheffieldJane says your taper is probably too fast. Did you go from 10mg to 7.5mg in one go? It also sounds like you doctor is not very conversant with PMR or steroids.

[Bcol]

Morning and welcome to the forum. As SJ and Piglette have already said, your initial tapering sounds far to fast, you need at least four weeks on each level of Pred and depending on you, everyone is different, maybe even longer. Think about not reducing by more than 10% every time. With PMR symptoms trump blood tests. Blood tests are useful but around 20% of patients don't show raised markers.When you get the chance have a peruse through the FAQ'S where as well as many other things, there is information on the various tapering schemes. There is a lot of information there so don't try and take it all in at the same time. Take care and don't hesitate to ask questions.

[Mfaepink1973]

Thanks, I feel that doctor is rushing things and reducing my prednisalone dose too drastically but not sure he would appreciate me telling him that, he would think I was trying to tell him his job. He’s phoning me tomorrow when he has my blood test results but if they are ok he’ll probably tell me to stay on 7.5 mg.

[DorsetLady PMRGCAuk volunteer]

Short answer - no. Symptoms are always the key, sometimes confirmed by blood tests but not always.

As others have said too fast a reduction - and whether he likes it or not, the guidelines do state -

“from 10 mg reductions should be 1mg every 4-8 weeks depending on disease activity and patients wishes…”

This from NICE as well -

cks.nice.org.uk/topics/poly...

As suggested by  SheffieldJane maybe have a read of this -

healthunlocked.com/pmrgcauk...

[alangg]

Yes - far too fast! Taper the reduction by no more than 10% over at least 4 weeks using a slow taper plan. Then stay on the lower dose for a couple of weeks and if symptoms return, go back up. If they don't and you feel ok, you can start the next taper.

My theory is that Pred is a powerful drug that you have introduced in to your system and so your body needs time to adjust to any change in the dose. 'Cliff edge' reductions are too much for it to cope with and so there is almost bound to be an adverse reaction.

[Loyd]

Far too fast!! I’ve been there - rushed to taper when Covid happened and had a dreadful flair! (Had a few more since!!) from 10mg you have to go sooooo slowly. So many good tapers recommended on this forum by the clever professionals. Best of luck with your doctor.

[PMRpro Ambassador]

We think not - and so do the top doctors in the field. The blood markers only respond to enough inflammation present for long enough and when you are on pred that often doesn't happen. Symptoms ALWAYS rule.

Anyway - the GP is wrong in his chosen taper - all the tapers in the literature say 1mg at a time below 10mg. The general rule is never more than 10% at a time - 2,5 at 10mg is 25%, no wonder it was too much.

A better approach than his and from top people in the field:

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

Professor Quick is now a GCA specialist at the Luton&Dunstable hospital, collaborates with Professor Mackie in Leeds and really knows her stuff - Prof Q still uses the taper BECAUSE IT WORKS BETTER, Your GP won't like it - you stay at 10mg for a year!

[yogabonnie]

I agree with all of the above. If the rheumatologist disagrees go to someone else or just listen to this forum. My GP has agreed with everything I come to him with from this forum! Good luck.

[Mfaepink1973 in reply to yogabonnie]

Thanks