And ,now another type of pain........

[billydownunder]

Being diagnosed with PMR in about 2006 and using varying amounts of prednisolone ever since,

my legacy is Adrenal Insuffiency plus the usual things like bruising, skin rips of easy etc......

But now some new type of pain..........

Last year my rheumy said you no longer have PMR, and wanted some tests done.....

This was when i was told i have Adrenal Insuffiency from long term pred use..............

Pred would be required for life. (unless the Adrenals came good)......

Roughly at that time i was getting more pains that seemed like PMR flaring and was told

no PMR just old age and arthritis ...........

The pain and stiffnes was getting worse so i bumped my pred up to 10mg daily for 4 days.......

Not much difference, thats strange , if it was PMR, the pain level should have at least dropped a bit.

Waited a few days and took a course of Panadol Osteo tabs that i had.......there was great relief

virtually over night.........

A couple of days after that i was raking up some stuff in the back yard ,when i spotted a couple of white cabbage moths (butterflys)........ so i took a swipe at them with the cane rake.......

Instant tremendous pain in the right upper arm area that stayed for days. Seen my GP ,had a

shoulder scan that showed a torn tendon ............

Outcome of this (i am told ) is, i am losing (or lost) elasticity of my muscles , tendons etc......

highly likely from (you guessed it )........long term Pred usage ??????.

So now i also take Panadol to help with the new type of pain.............

Slow movements are the order of the day, any quick reflex movements result in terrible pain......

Just the other day, a sharp movement of my left arm tore another tendon ..........

My GP seems to think any operations may not be successful because of the elasticity problem.

So ,there you go , i now move around like a tortoise...........

The diagnosis from my GP seems to slot in with all my symptoms, so until we find out otherwise

i shall say the elasticity thingo looks like the problem.

................Billy................

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this.. but the butterflies might think it's Karma..🦋🦋..😊

[billydownunder in reply to DorsetLady]

Yep and the little devils got away too.............

[DorsetLady PMRGCAuk volunteer in reply to billydownunder]

They very often do… 🤨

[tangocharlie]

You can take Hydrocortisone instead of Pred if your adrenals aren't working, so long as the Pred isn't needed for controlling the inflammation any more. But in my case when I came off steroids I had to go back on the Pred after a few months as the PMR hadn't fully gone away so flared up again.

[billydownunder in reply to tangocharlie]

The Endo bloke said to take HC and i did first up but it played up with my tummy

so went back to pred, i am going to give HC another go now..........

[powerwalk]

Sounds awful. Really hope you heal as quick as possible. Bit scary.

[billydownunder in reply to powerwalk]

Right , it is scary and annoying too..........

[PMRpro Ambassador]

To be fair Billy - age does have a bit of a role here! The older you are, the harder a job the adrenals have to wake up as their functions fades as we age anyway. And muscles and tendons get a bit worn too,

Your rheumy was a very clever chap - another believer in his crystal ball opinions. Which generally are wrong! If you have had PMR since 2006, you presumably have the Long PMR version, several of us on the forum. And it doesn't go away in 2 or 3 or even sometimes 12 or 13 years, whatever they may think.

[billydownunder in reply to PMRpro]

GDay Eileen.....

About my Rheumy.........(believe it or not sort of thing).......my first visit to him after nearly two years of GPs fiddling around was successful.............

He is an oriental gent and quite a character..............

He said what is the problem young fellow, i told him how things had been for the last two years and he said hold out your hands palms up, ok now roll your hands over ok

now clench your fists tightly, ok my boy you have PMR , but we will do some tests to be

sure...........

Last year when i went to see him, guess what.......hold your hands out palms up ok

now roll your hands over ok now clench your fists tightly ok my boy your PMR

has gone .......... that is when i had the next and last round of tests.............

Make of that what you will...............

.................Billy................

[PMRpro Ambassador in reply to billydownunder]

And what was the difference in the two demonstrations?

[billydownunder in reply to PMRpro]

I really have no idea at all.........when i asked him he just smiled and said just believe me.

[PMRpro Ambassador in reply to billydownunder]

Woo ...

[CamGina]

As a matter of interest- did you have to be completely off the Pred before you could be tested for adrenal insufficiency? My rheumatologist thinks I could have it, but I'm still tapering very slowly - on 2 mg at the moment.

[PMRpro Ambassador in reply to CamGina]

2mg is still planty to be suppressing cortisol production but doing basal cortisol levels - cortisol on a sample taken between 9am and 1pm - will give a very good idea where you are.

Normal values for a blood sample taken in the morning are 5 to 25 mcg/dL or 140 to 690 nmol/ and they don't vary significantly through the morning.

A level of under 100 is adrenal insufficiency, a level above 450 is normal, Everything in between gives an indication of how far your adrenal glands have recovered. Nearer 100, there is a long way to go, nearer 450, you are getting there. It doesn't require a special hospital appointment, the GP can request it along with other tests providing the timing of the blood sample is OK.

[CamGina in reply to PMRpro]

Thank you!

[billydownunder in reply to PMRpro]

What PMR pro is saying is what is the norm.........

However with me, i couldnt get to 5mg per day without feeling terrible......

so it was at that point that i had all my tests............

Three lots of blood tests...........A scan of the adrenal glands to check the size and to see

if there was any tumors etc..............

Then into Sydney to one of the major hospitals to have the stimulation test, .......

I told the boss man i was still on 5 mg of pred , can the test still be done...........

yep he said , the way this test is done that is not a problem...........

Result of all that...........Adrenal Insufficiency...........

.............Billy.............

[PMRpro Ambassador in reply to billydownunder]

It might not interfere with the results estimating the cortisol, but the fact you are on 5mg of pred interferes with whether your body is producing cortisol to measure. Biochemcally it is fine - physiologically it isn't!

[tangocharlie in reply to PMRpro]

But they will do synacthen tests if you're below 5mg, so long as you haven't taken any steroids or HC in the last 24 hours

[PMRpro Ambassador in reply to tangocharlie]

Yes, they DO them, they measure cortisol levels, but they don't show whether the HPA axis is recovering from being suppressed by the presence of exogenous corticosteroid, At 5mg there is mostly no need for the HPA axis to signal a need for cortisol. Think of my central heating and wood burning stove analogy.

[tangocharlie in reply to PMRpro]

My adrenal problems kicked of when I went from 5 to 4.5 then 4 mg and felt absolutely dreadful. I got taken totally off Pred and switched to HC, still felt dreadful. Then my 9am cortisol readings went up from 0 to about 140 if I remember right and as that supposedly showed my adrenals were recovering I was discharged from Endo. I protested at the time that how could one reading conclude I was on the mend, that I needed a follow up, but got nowhere. A few months later I was back on Pred as the PMR that I was told emphatically must have gone away after 5 years but I thought was still there flared up with a vengeance. So with me, and no doubt many others, there are two issues: has the PMR actually gone and are the adrenals going to recover. The docs totally dismissed the idea of PMR still being present because they have it tattooed in their heads it only lasts 2 years.

[PMRpro Ambassador in reply to tangocharlie]

Quite ...

[CALGD]

Billy, have you (or anyone else on the forum) tried hyaluronic acid supplements for this type of tendon pain and arthritis? I have been reading glowing testimonials from some folks but don't have firsthand experience. It is my understanding that HA is not considered harmful at least. Maybe worth a try?

[billydownunder in reply to CALGD]

CAL ... Never heard of it , (but that doesnt mean much) but i shall try to find out a bit about it

Thanks for the interest.............

....................Billy...............