Can I stay on 10mg for four days then drop to 5mg?

[crafty_grannie]

Have been feeling really awful for a while, lots of pain etc. GP thought it was a bad flare of fibromyalgia. I don't think she knows too much about PMR/GCA, and I rely on my very good rheumy who unfortunately is dealing with cancer at the moment. I have a fill-in rheumy who doesn't know me and I won't see her for about four weeks. Obviously, my own thought processes weren't working. Because I've been following the DSNS method I assumed ???? things were going OK. My GP said my recent Synacthen test was good and in my foggy state, I forgot 'good' might mean 'able to' but not actually working.

Today, instead of my 3.5mg I had 10mg, and felt like I'd come alive, almost like when I was first diagnosed and started Pred.

It seems I may have been well below my best dose, so I thought I might stay on 10mg for the next 3 days then go back to 5mg and, if that works, stay there till I'm sure it's ok. Does that sound reasonable to you experienced people out there?

Thank you very much in advance. I really appreciate the support. Actually I'd be very stressed without it.

[PMRpro Ambassador]

It should help to show you if the pain is PMR - fibro won't improve with more pred. Unfortunately, adrenal insufficiency can cause similar problems - and the cure there is also more corticosteroid. But a bit of evidence might well inform a discussion with one or other of your doctors about where to go from here. Quality of Life is also important,

[crafty_grannie in reply to PMRpro]

Many thanks for your quick reply PMRpro. Everything improved so doesn't look like it was fibromyalgia. Will discuss it when I see the rheumy. Quality of Life is so important. You can't explain to everyone you see why you look and sound like a dishrag. Made me just want to never go out or speak to anyone. Thank you very much.

[PMRpro Ambassador in reply to crafty_grannie]

I am very lucky - all my doctors here are really big on QOL. What's the point of living longer if you spend most of your time wishing you were dead?

[crafty_grannie in reply to PMRpro]

Totally agree, but I think sometimes I forget so when I'm struggling, I can fall into survival mode.

[PMRpro Ambassador in reply to crafty_grannie]

As soon as you are struggling - time to post and get a re-set!

[SheffieldJane]

I think you are right. A good Synacthen Test means that your Adrenals are capable of working. It will take at least a year for them to wobble into full life, if I have understood the advice I have been given correctly. In the meantime I think we might expect to feel various degrees of horrible sometimes. It is, however a process and more Pred interrupts it. In my opinion an extra 5 mgs for 4 days won’t hurt - check with a doctor. I did it a little while ago but unfortunately it just made me feel cross and worsened the patch of bad insomnia I’m going through. No skippity hoppity for me. I am on 6 mgs of coated and suspect that I’m absorbing a bit less. Did they give you an emergency hydrocortisone injection kit? They should do, just in case of an Adrenal crisis. Mine sits gathering dust on my wardrobe shelf ( from my PMR only days). Good luck!

[crafty_grannie in reply to SheffieldJane]

No Sheffield Jane. I've never even heard of an emergency kit. I've found my doctor very good usually, but she does tend to think she knows best and when I'm not clear in my head, which is usually the case when I'm not sure about something, I find it hard to think of the right questions. One day when I'm feeling on top of things, I'll give her some info to read and tell her what it's really like. One of the big difficulties here is that a doctor's visit is a quick in and out in ten minutes unless you book a longer appointment, and even twenty minutes flies. I think it's been a bit more difficult because of my rheumy being away. He has leukaemia, unfortunately, but we've been told he's going well, and hopes to be back in a few months. Usually it's been easy to get messages to him and he replies quickly, but I don't know the other doctor but I will try to get on to her and see what she suggests. Many thanks

[SheffieldJane in reply to crafty_grannie]

It was my Endocrinologist who sent one following my Synacthen Test, I failed on at 5 mgs Pred and got a good result at 3 mgs and this injection kit came automatically. Perhaps enquire at the Endocrinology Department where you were tested?

[crafty_grannie in reply to SheffieldJane]

Thanks for that Sheffield Jane. I'll check that out when I talk to the Rheumatologist. Didn't realise it was done through the Endocrinology Department, just an office I was sent to at the hospital for "special testing". It's wonderful, the more I learn from you people, the more questions I can ask, and the more information I can get. Thanks😊