Polymyalgia info

[Loyd]

I’m a new member. I was diagnosed with Polymyalgia a year ago and started on 15 Mgm of prednisone. Worked like magic. My doctor has three times tried to get me come off them gradually. I am on 3 milligrams and all symptoms back - in agony and can’t move my arms etc and so tired. Has anyone else had a similar experience?

[PMRpro]

Did you mean to post here? There is a dedicated PMRGCAuk forum

healthunlocked.com/pmrgcauk

PMR requires management with pred for from anything under a year to an average of just under 6 years - and half of us require pred for longer:

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are two articles with slightly different empahses about the same study. Only 1 in 5 patients are able to stop pred after a year - and they remain at a higher risk of relapse. By 2 years 1 in 3 succeed in stopping pred.

You have done well to get to below 5mg - I'm assuming you are OK at 5mg? You are never reducing the dose relentlessly to zero, you are looking for the lowest dose that gives the same relief from symptoms as the starting dose did. If you were OK at 4mg for a month then that is where you should try for longer term. if not then 5mg. Though you are obviously not staying long at any dose to know if it is still enough - the answer to PMR is patience - the tortoise wins this race. Unfortunately far too many doctors haven't read enough of the literature and are terrified of the use of pred long term. You seem to have landed with one of them.

I'd suggest trying 8mg/day for a week to clear out the inflammation that has accumulated and then dropping back to 5mg and see how that goes.

[Loyd in reply to PMRpro]

Thank you so much. I speak to my doctor on Monday - I hopefully will go back up to 10 MGM’s - seems to be the level I have no pain.

[Loyd in reply to PMRpro]

Hi PMRpro - you were kind enough to answer my initial post. I would love to ask for your thoughts. I had my phone consultation with my Doctor on Monday and she was very supportive. I had reduced my pred from 10 to 3 quite rapidly because of concern over Covid but symptoms returned quite rapidly and at 3mg I was not coping well. She said to go back up to 10 mg but after 3 days only a little improvement so I took 12mg yesterday. This morning I am no better. I’m thinking I should go back to my original dose of 15mg I started on a year ago. Do you have thoughts?

[PMRpro in reply to Loyd]

It is common for it to be difficult to get things under control again when you try to get off pred asap and allow a flare to develop. That's why I gave you the links I did. If 10mg was the dose you felt good at then it is not likely to clear out the accumulated inflammation AND provide daily management as well. You will need at least 15mg - after all, the flare started from 10mg really didn't it?

I hope you don't need more - but I have to point out it is a real possibility. It is why we bang on about not rushing the taper - once you open Pandora's box you don't know what may happen.

Do please come and visit PMRGCAuk if you haven't already done so - lots of people there who can help.

[Loyd in reply to PMRpro]

Thank you so much again. I seem to have ended up in the Lupus group on here. How do you get into PMRGCAuk? I really am appreciating the help. 👍

[PMRpro in reply to Loyd]

The link was in my first reply - here it is again

healthunlocked.com/pmrgcauk

[Loyd in reply to PMRpro]

Fabulous! I have joined that page now and also paid £15 to join PMRGCAuk. You are a star.

[happytulip]

PMRpro is literally a pro on pred and PMR.

I am sorry your symptoms are back. It does sound like you need an increase in pred.

Good luck

[Loyd in reply to happytulip]

Yes I hope the doctor will agree to going back up to 10mgs. Thank you for replying.