How much adrenal insufficiency should be tolerated?

[Sharitone]

I have now been on 4mg for 2 weeks, with increased fatigue. This morning, in addition to a very sore muscle behind one hip that is making it difficult to walk, I can't stand up without feeling very dizzy and sick. I've looked at the FAQs on adrenal insufficiency and it seems likely that's what it is. However, I'm wondering how bad it can be before I need to report it, and should I increase the pred a bit, or would this be counterproductive?

We're supposed to be going on a family outing on Saturday, and I can't do my poor husband out of yet another treat.

[SheffieldJane]

You are absolutely right of course, taking more just delays the inevitable. This stage just has to be got through. However, you are in pain with a physical challenge ahead. I would be tempted to go up a bit. If these symptoms seem to be worsening, I would see your doctor about your hip and the adrenal symptoms. Sooner rather than later.

[Sharitone in reply to SheffieldJane]

Thank you for answering so quickly, particularly when you are not well yourself. I've taken and extra 1mg, and if it doesn't improve, I'll do an e-consult.

[SnazzyD]

Personally if I’ve ever got to the stage of even standing up and feeling like that, I’ve given myself 1mg and then lying down for a few hours to see it it helps. Make sure your ‘housekeeping’ is right such as fluids, food and not overdoing it. Did this episode follow a period of activity or stress in the last 24hours? I’d see what the result is because it will help diagnosis and if it works well I’d chat with your GP also about the pain as too. However, any worsening at all or introduction of other symptoms seek help sooner. As for the weekend, get through this first and find out what it is.

[Sharitone in reply to SnazzyD]

Thanks. I have taken the extra 1mg, and I'll see how it goes. Never sure whom to contact, the GP or rheumatology helpline.Yes, I must admit I struggled along to band practice last night, because I hadn't been able to for a few weeks. Mind you, it is all sitting down. I'm a bit taken aback if that was enough to cause this.

[SnazzyD in reply to Sharitone]

Ok, if this isn’t just today you need to seek help. Generally speaking the GP’s are faster than hospital depts but you may have a good one. Try both?

[PMRpro Ambassador]

What concerns me is more the fact you are saying it is getting worse AND you now have pain. The nuisance at this point is that you are balancing not only returning adrenal function (or not) and are also bound to be closer to the aimed-for dose: the lowest effective dose. My flares of PMR almost always start with an episode of myofascial pain syndrome.

[Sharitone in reply to PMRpro]

That's the one that feels like sciatica?

[PMRpro Ambassador in reply to Sharitone]

It can cause sciatica - but there are other things it can do too

[Amkoffee]

4mg is almost the normal dosage for people with adrenal insufficiency. Typically you start at 5mg pred or 20mg of hydrocortisone (which is equivalent to 5 mg of prednisone). I suspect your symptoms are more likely PMR related then adrenal insufficiency related.

[Sharitone in reply to Amkoffee]

Yes, I was quite surprised to get below 7mg without the AI. Thanks for your answer. Nothing's simple, is it?

[Wizards]

Hi SharitoneI'm in adrenal insufficiency right now and have been since 4mg but it got extremely worse at 3mg.

I put my foot down with rhumitologist and have now seen an endocrinologist. He want me to get to 1mg then run a battery of test.

One thing I don't have is pain and if I did I would never reduce but do a slight increase.

I stay after each drop a minimum of 2-3 months and check blood work before the next drop.

It's been 7yrs but I've never flared and stayed at 10mg for 1 yr .

Good luck

[Sharitone]

Thanks for your useful insight. I hope you're getting there now. 1mg seems awfully low before getting any help!

[Karendeena]

I lost my appetite and lost weight very quickly when my GP tapered me 1mg every 2 to 3 weeks until I stopped them. The 3 months I was off pred completely was the worst feeling in the world and my ESR makers rose again. Rheumatologist put me back on 5mg to reduce 1mg every 6 weeks, was ok until a couple of weeks ago when I got down to 2mg now I don't feel so well with disturbed sleep and some shoulder pain 😥

[PMRpro Ambassador in reply to Karendeena]

That is an absolutely typical story of the final tapering being done so fast you have no idea where you passed the "lowest effective dose". Sounds now as if your LED is 2.5 or 3mg - the dose Prof Dasgupta says he keeps patients at longer term as it reduces the risk of relapses. And that GP put you are risk of an adrenal crisis - loss of appetite and weight loss aren;t just linked to the lower pred dose - they are symptoms of adrenal insufficiency.

[Karendeena in reply to PMRpro]

Thanks PMRpro, I really appreciate your experience and knowledge. I am due to go back to GP on Monday (a different one) and I will explain and tell her about the shoulder pain, it's not too bad but seems to have deteriorated since I pulled out the hose pipe every day to water the plants (takes some pulling as it's automatic rewind). Do you think this has added to the problem/pain. Just in your opinion do you think it wise I increase to 2.5mg daily for a bit? I never thought 1mg reduction would make such a difference 😢

[PMRpro Ambassador in reply to Karendeena]

Oh - almost certainly!! Tough things hosepipes!!! Can you leave it unfurled? I would.

I once wrote a post called "What a difference 1/2mg can make" - and that was 1/2mg over TWO days! You can only find out whether increasing would help by trying it. If it is injury it may not. If it is injury on top of a threatening flare it may well.

[Karendeena in reply to PMRpro]

Thanks again PMRpro, I have left it unfurled tonight. My brother is away so I have no one to help me. My muscles seem very weak and my arms have gone a lot thinner 😢

[PMRpro Ambassador in reply to Karendeena]

Yes - know that feeling. I often leave things when I know I'll be using them again. OH didn't like it - but he wasn't going to be helping so it was a case of tough ...