Are there any signs

[JJackdaw]

I'm Just wondering. When reducing pred to a minimal amount, are there any physical signs that your adrenals are kicking back in, if so, what are they? Does anyone know?

[PMRpro Ambassador]

Your adrenal glands start to have to function from about 7mg so by the time you are well below that it is less a case of "signs they are kicking in" than "NO signs they are NOT kicking in". Symptoms of chronic adrenal insufficiency can start slowly and include:

Fatigue and weakness (common feature).

Anorexia.

Nausea.

Vomiting.

Weight loss.

Abdominal pain.

Diarrhoea.

Constipation.

Cravings for salt and salty foods such as soy sauce or liquorice (primary insufficiency).

Muscle cramps and joint pains.

Syncope or dizziness (due to hypotension).

Confusion.

Personality change.

Irritability.

Loss of pubic or axillary hair in women, delayed puberty in children

If you have got down to "minimal pred" without any such problems it's unlikely you have a problem. On the other hand, many people complain their fatigue gets worse after about 7mg and some doctors like to keep patients on 5mg for 6 months or even longer - it allows the body to catch up and means less risk of problems due to adrenal insufficiency.

[JJackdaw in reply to PMRpro]

Thanks pmrpro, I'd be lost without you guidance through this disease.

[suzieh in reply to JJackdaw]

Agreed .... Advice so valuable for each of us with PMR. Thank you for always relying in detail and so quickly

[PMRpro Ambassador in reply to suzieh]

I have my email open all the time I'm on the computer and it is far easier to respond straight away than be faced with more than 40 emails to look through in the morning! That's why it is often fast - you have to wait if I've gone to bed though, I'm an hour ahead of you in the UK!

And the detail - why give half an answer that is confusing and have to explain again? Do a job properly the first time I say - and a lot of doctors would do well to work to that concept. My current GP does it well: no appointments, you sit and wait. One patient may be 3 minutes, the next half an hour or even more - but you know you get the same when you get in.

[Bagshaw]

I'm down to 2mg per day and have been for some while. At least three months. My plan now is to reduce slowly to one mg a day. I have a bit of fatigue but not any of the other symptoms you mention. Does this mean my adrenals are working again, and that I might get away with reducing to zero eventually?

[PMRpro Ambassador in reply to Bagshaw]

It sounds pretty like it - and yes, people really DO get off pred! But this is the stage you often have to be very cagey at - rush it and you will undo all the previous good work. There have been a few people on the forums who got to 1 or 2mg, their doctors said such a low dose couldn't be doing anything so you might as well stop - and a few months later, back came symptoms. Some doctors feel there are some patients who simply do better on such a really low dose - and the side effects are minimal so why worry?

The Dead Slow and nearly Stop approach can be pulled out by repeating each stage a few times - going from 2mg to 1mg is a 50% reduction! One lady had got to 3mg and dropped to 2mg and felt awful - the irony is she is one of the proponents of SLOW REDUCTION - and had forgotten her own rules!

[Bagshaw in reply to PMRpro]

I plan to reduce to 1 mg on Sundays, and stay on 2 the rest of the week, for a couple of months. See how I go on that. Then go to 1mg on Sundays and Wednesdays for the next couple of months. I agree with you that gradual is good on this, as I came off altogether before and suffered return of symptoms almost immediately. I know these small doses are keeping me well, so reduction will be slow and perhaps I may stay on 1 permanently. Thanks as ever for your input, PMRpro. What would we do without you!

[Hidden]

Dear PMR PRO

I read your answers with great interest as other people often ask my questions.

I too am currently on 7mg reducing from 20mg after following your Wonderful 'Slow Reduction Plan' along side the Second Opinion of a new Consultant who started me on Methotrexate at the end of April last year. And I've lost 2stone of the 3stone I've gained on the Prednisolone.

It hasn't been without its issues or side effects, however when I reached 6mg the Old Symptoms reoccurred proving that PMR was still there & merely being held at bay, CRP confirmed it too.

I spoke to the Rheumatology Nurse & she suggested going back to 7mg, but it took well over three weeks before I started to pick up.

I'm now on my 2nd month at 7mg but I too get this sudden over whelming tiredness with an inability to concentrate when it happens & I just feel so ill, I'm also getting pain in my knees especially when going up & more so downstairs

So I popped along to see GP ~ picked the Wrong Day, running late & not in the best mood! Despite this he listened, offered stronger pain killers, he double checked if I could I have anti Inflams for my knees but we settled on a rub in anti Inflam gel but said he'd get in touch with my Consultant but to stay on 7mg for now.

This was only meant to be a 'Thank You' but you know how it is! I've had PMR almost four years, I had to Retire early & it's been a long, arduous journey; so I'll sit at 7mg until I see My Consultant next month.

But Thank You I feel you've allayed some of my fears, I was beginning to think I was developing something else but deep down I think 7mg maybe where I have to sit for now until the Old Adrenal Glands Wake Up.

Best Wishes to Everyone on this Forum & hope you are all enjoying the lovely weather!

[PMRpro Ambassador in reply to Hidden]

Once there is a flare it either needs time or a hard hit with a week of the dose plus 5mg and straight back to the old dose.

Yes, I think you are right - sit at 7mg for a couple of months if you can - and really don't rush any steps from now. I discussed it with one of the top PMR specialists a couple of months ago and she agreed my theory really did fit and 7mg is a very common sticking point.

Do be careful with even topical NSAID gels (like ibuprofen) and stronger painkillers - they all have side effects too! I know - I'm such a misery-guts sometimes!

[Parijm in reply to PMRpro]

PMRPro how much 'time'? My flare at 7mg resulted in going back to 10mg which I've been on a month now. Am happy to sit at 10 mg a while. Alternatively, could I have gone up to 12mg for a week and back again to 7 mg? Or was I reducing too swiftly anyway?

[PMRpro Ambassador in reply to Parijm]

Without knowing more it's difficult to say - but I'd bet most people try to reduce too quickly.

Read this and see what you think:

healthunlocked.com/pmrgcauk...

[northants in reply to PMRpro]

I would like to see a PMR specialist how can I go about finding one.I am being treated by my doctor but sometimes I would like a second opinion but only if they specialise in PMR

[PMRpro Ambassador in reply to northants]

Depends where you live. Leeds is very good but doesn't have any private access. There is also a very good man in Chertsey who also does private work. But neither of those may be an option for you. I live in Italy - I'd travel to go to either of them!