lowering prednisolone

[Guilluame]

I have had pmg since last September and have very gradually lowered my dose from 15mg to 1mg. which I have been on for the last six weeks. I decided to try to go without steroids for the last two days and apart from the usual shoulder ach when getting up, so far so good, I am now worried about getting an adrenal crisis/problem as haven’t a clue if my adrenals are working properly. Trying to see or get advice from a doctor in this area is nigh on impossible. Has anyone on this forum any advice for me.

[DorsetLady PMRGCAuk volunteer]

I think you’d know if they weren’t working at all… you’d probably feel absolute rubbish. But how well they are working is a bit difficult to say as they can take up to 12 months after you’ve come off the Pred to be back to normal.

For that reason you should carry a supply of Pred with you, just in case something happens to cause an adrenal insufficiency issue.

Plenty of info regarding all things adrenals in this link-

healthunlocked.com/pmrgcauk...

..and just be aware that going from 1mg to zero is not always as easy as people think….1mg might have been doing a lot more than you realised- for your PMR and your adrenals.

[Guilluame in reply to DorsetLady]

Thank you so much for your useful comments. This forum is really great.

[Dunkel in reply to Guilluame]

I did. the same, after getting extremely low doses for some time, it’s not at all easy, but I went through this and I didn’t go back to take prednisone ever again. Painkillers when absolutely needed, lots of sports, especially water sports, I don’t know why, but that makes a difference, I read it from an other person in this group. Following time wise a very precisely daily routine ! Slowly with some desperate days in between, it gets better, every month much better, after one year it’s all over! Good luck!

[MalloryMoss in reply to Dunkel]

Hi, I’m interested in what water sports did you do? I’m a swimmer and keen (when it’s right) to get back, eventually competitively 🤞

[HeronNS]

I guess you have been taking pred for just over a year? So to be off pred completely is quite remarkable. I am sure others more knowledgeable than I am will be along soon. However, it's a good idea to keep some pred on hand for a while, up to a year, in case you encounter some major stress of any kind, physical, emotional, health challenge, and find yourself shaky and feeling unwell as there is always the risk, they say up to a year, that your conrtisol production may not be quite adequate to meet an unusual challenge.

And after only two days you really can't know. In 2020 I reduced to zero extremely slowly, much more slowly than you, after five years on pred, and within six weeks I realized, very reluctantly, that I needed to go back on pred. But the problem in that case was increasing physical symptoms. Because we were in covid partial lockdown and not doing much of anything I had no specific emotional or psychological stresses and was not aware of any adrenal problems. Otoh three years on I'm being extremely careful approaching zero again because this time I haven't got the physical PMR symptoms, but definitely feel shaky and headachy at times, particularly when I have a zero pred day in my taper. The rest of the time I'm taking half a mg.

If I were you, I'd be concerned about that achy shoulder. My flare, which actually occurred a few months after returning to a small dose of pred, which seemed adequate, started with stiff shoulders with limited range of motion, spreading to my neck, which I attributed to osteoarthritis. After some time of increasing pain I took a larger dose of pred as an experiment and it was like the initial pred miracle back in 2015! It certainly had not paid off for me to be in denial for so long. But all seems well now, just needed more patience! I don't expect this will be your fate, but please be aware.

[Guilluame in reply to HeronNS]

Thank you for your prompt reply , it’s great to,know that there are people on this forum who really care and are so helpful.

[PMRpro Ambassador]

You haven't been on pred that long so it is likely the return of function will be smoother than for someone who's been on pred for years.

Just be aware of the potential signs of adrenal insufficiency and a crisis, especially if you end up in a very stressfull situation or ill.

Did your PMR start after a Covid infection or a vaccination?

[Guilluame in reply to PMRpro]

my pmg started about four months after the death of my Partner of 32 years, and I attribute it to my battle with HMRC who wanted payment before probate, the stress of that was awful. I have suffered anxiety and thanks to this forum found out that this is one of the symptoms of prednisolone, hence me trying to get off them. I will keep an eye on my shoulder ache and if it doesn’t go away will go back on them, but fingers crossed. Thank you so much.

[PMRpro Ambassador in reply to Guilluame]

Such lovely people HMRC!

But just little warning - even 1/2mg can be enough to keep really low activity PMR under wraps but at zero the tiny bit of leftover inflammation each day can build up until you are back where you started, If you admit that may be happening and go back to taking a low dose of pred quickly you should get away with it, But being stubborn and trying to beat it isn't a good idea. PMR almost always wins!

[Guilluame]

thank you, I was being a bit blaise about this, but I’ll try to cut the 1mg in half. Will do this tomorrow.

[HeronNS in reply to Guilluame]

That's a good idea. I know in the UK you can get coated tablets, which must not be cut, so just be sure that you are taking uncoated tablets.

[Guilluame in reply to HeronNS]

Yes they are j coated.

[Guilluame in reply to Guilluame]

Uncoated

[HeronNS in reply to Guilluame]

If I weren't experiencing the benefits of half a mg of pred myself I wouldn't have believed it could make much difference. But it does!

[Missus835 in reply to HeronNS]

Try to explain this to the medical professionals Heron. My rheumy for starters. Lol

[HeronNS in reply to Missus835]

The family doctor who diagnosed my PMR actually told me that she had patients who kept a supply of 1 mg tablets on hand, even after they had tapered off, just in case they needed it from time to time.

[Guilluame in reply to HeronNS]

thank you for your reply, I too will keep a supply of prednisolone, just in case. I still have some aches on waking, but during the day when I am busy or distracted, I don’t really notice.

[Boss302Fan in reply to Guilluame]

I’d recommend cutting it in quarters! Nothing to lose but possibly everything to gain.

[Mansplainer101]

We are exactly the same age, different sex, were diagnosed at the same time, began with almost the same dosage and are down to almost the same dosage: I have been taking 1mg of pred. every other day for a few weeks with no PMR recurrence so I am eager to see what responses you get.

[Guilluame in reply to Mansplainer101]

thank you for your response. My shoulders still ache in the morning, but otherwise I am ok. I hope you continue to have success.