5 years of PMR and reducing again - need help please

[ricardian1]

My PMR diagnosis was 5 years ago when ESR was 66. I was feeling awful in May this year on 4 mgs. On 21st June 2016 after 2 x 6 weekly checks it had risen to 16 so my GP put me up to 10 mgs a day which made me feel OK as I still do. 5 days later my husband was desperately ill and went to hospital as an emergency - I thought I had lost him. After 10 days he has been home under my care. Without those 10 mgs I am sure I could not have coped. The last 2 ESR checks have been 10 and now 8. My GP suggests a reducing plan that works out at 3 mgs less every 4th week/month. Does this seem reasonable to those of you who understand? The last time I asked for advice, a kind person warned about reducing much slower at the 6 or 5 mgs mark. I so want to do the right thing and get off prednisolone or find my maintenance level. At 79 my eyesight is not so good, I have recently lost my sense of smell and painful knees and feet mean I walk with a stick at a snail's pace. I read all posts and my heart aches for others who are suffering. BIG THANKS to all who help others and best wishes to you all.

[PMRpro Ambassador]

Below 10mg reductions should really be no more than 1mg at a time and even that quickly becomes more than the 10% of the current dose advised by top US experts years ago. This is not only to find the right dose more accurately but to give your poor adrenal gland system a bit of slack to have a staged return to work.

This paper from a top rheumy group suggests 1mg/month.

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

Many of us think that is more than enough - and many of us do it far slower than even that and it has worked well to avoid flares. Persuading GPs to accept that isn't so easy - they are used to reducing pred in bigger steps in the things they usually use it for (asthma and chest infections for example).

You are still under a lot of stress looking after your husband - I'd say that 1/2mg a month would be plenty until he is much better so you feel up to doing what you must. I'd find it hard - you are a few years older than me!

Or perhaps would your GP countenance using this plan:

healthunlocked.com/pmrgcauk...

It is being used in a clinical study on pred and PMR in the north of England and has been used by several rheumies with great success already.

I do hope your husband continues to progress well.

[DorsetLady PMRGCAuk volunteer]

Hi richardian1,

Would agree with PMRpro, you are still going to be under a lot of pressure caring for your husband - know, I've been there.

Would also agree that 1mg per month much more sensible reduction at least until you get to about 7mg. Then, your own adrenal glands are waking up, so you may need to reduce by only 0.5mg per month.

I know it sounds slow, and your doctor may not like it, but you cannot hurry things, especially with external worries etc. Fortunately my GP was very understanding and has allowed me to reduce at my own pace, after all as he says - I know my body better than he does.

Try and persuade your GP to let you reduce at your pace, and best wishes to both you and your husband.