Adrenals had it.........

[billydownunder]

After about 18 years or so with PMR it looks as though i am finally away from it.......

My only success was tapering at a quarter Mg per month on a system similar to DSNS...

Now i am left with inoperative Adrenal glands (so i am told )......from the long term pred use.......

After a pile of tests including checking for tumors, i am told i have to stay on pred (or HC )

for life.......because the Adrenal glands are never going to recover (maybe yay ,maybe nay )

Hydrocortisone just did not agree with me , so pred it is ..........

The endo bloke would like me to be under 6Mg....but at 7Mg it also helps my other aches and pains.

That is where i am staying at present..(i may lower the dose one day just to see what transpires....).

At 85 years old 7Mg will do me just fine if it helps me get through the day........

I try to stay on a sugar free diet (definately no biscuits and that sort of stuff )........

Carbs i do not worry about.......moderate exercise is a must......

My weigh is around 73 Kgs.......keeping to that is fine..........

Side effects from pred.........a bit of a weight problem before ditching processed sugars......

I do bruise easy and have to carry a box of Bandaids...........

And of corse the Adrenal bit...........

I feel crappy a bit at times but just roll with the punches.......same as before, if a bit crook just

up the pred a bit for a few days...

I do have a Medical Alert pendant for critical info hanging around my neck .......

and a Blue card in my wallet that states i have Adrenal Insufficiency...............

Also a sheet of sliding scales of Pred (or HC )..for any injuries or what ever........

Yeah.....thats about it for the present....i guess time will tell.........

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

[DorsetLady PMRGCAuk volunteer]

Hi Billy,

“I feel crappy a bit at times but just roll with the punches.......same as before, if a bit crook just up the pred a bit for a few days...”

Good philosophy to have….it’s all we can do sometimes….take care, and all the best…😊

[billydownunder in reply to DorsetLady]

Thanks......

[PMRpro Ambassador]

Keep on keeping on!

[billydownunder in reply to PMRpro]

I will do just that...........

[SheffieldJane]

You seem at peace with it Billy. Wishing you all the best for the future. 🌈

[billydownunder in reply to SheffieldJane]

Yep no use getting all aerated............

[PMRpro Ambassador in reply to billydownunder]

My family used that expression too!!!!

[billydownunder in reply to PMRpro]

And a good one it is too................

[billydownunder]

Just shows you should never give up hope, our body can be really resilient ........

Yep , i might try lowering the dose to see what happens but i am not going to

suffer too much............

[Bobbury]

Hi Billy, well you've just outlined my whole life with pred. So there's the GP telling me to keep the pred down and try to reduce as best as possible at 7mg. So there i am reducing like a good boy that I am 0.5mg every 2 months or sometimes 3 months. Get down to 3mg..boom!!

The usual aches and pains, up the pred, start over again!! Then I see this bloke type consultant who says to me, what are you playing at, there's no way in this world your adrenal glands are ever going to work after 10 years or so. They are comfortable being supported by pred and they have no intention of trying to work! Great I says, so what happens now? He says your on Pred for life now. Oh i say what about trying something else then. Nop he says that wont work either. Ok I say so pred it is then. Yep he says and I don't need to see you anymore. Something I said I ask or is my deodorant? Nop he says nothing I can do now, any problems speak to your GP. Dismissed!!!

So i'm left with peripheral neuropathy in both legs and cataracts in both eyes, which apparently are not quite yet matured for them them to be removed! So yeah rubbish at times, can't be asked, or like a Duracell bunny, which after a couple of days runs out!! Oh if you would like any instructions on how to fall over, I'm you man!!

[PMRpro Ambassador in reply to Bobbury]

He's wrong - there ARE people who have been on pred for more than 10 years who have got off pred. But I hope he's explained to your GP but you will probably get grief from someone in the future!

[PMR2011 in reply to Bobbury]

I was on Pred for 8 years and managed to come off. I suspect this is just like the story we get about PMR lasting 2 years, true for some but not for many!

[Smithie49]

Sounds like you are doing really well. Congratulations 🎊

[billydownunder in reply to Smithie49]

Thanks Smithie............

[Telian]

I would never say never with the Adrenals Billy. You know your illness well and have a good attitude towards it. Best wishes. 🙃

[billydownunder in reply to Telian]

Thats true Telian ....i just dont feel like going through the pain to try and kick start the adrenals at this stage.............

[Telian in reply to billydownunder]

Agree Billy - only when you’re up to it. Sounds like your body needs a rest for now….

[Jackoh]

Agree with Telian. You have a good approach Billy and all the best for the future. 💐

[billydownunder in reply to Jackoh]

Thanks Jackoh ...........

[LemonZest11]

Hey Billy, from one Aussie to another ... you'll be right mate!! Great attitude and realistic acceptance, true Blue. 😘

[billydownunder in reply to LemonZest11]

GDay Lemo............Yeah, i have found that complaining doesnt seem to alter the situation too much at all............Good onya mate ................Wadda we say ,,,sheel be right..........

[LemonZest11]

But seriously, take care. 😘

[billydownunder in reply to LemonZest11]

Yep....seriously !!!!!!! i may sound a little lakadaisical ....But i do keep a regular check on things ......like bone density etc etc..... even though my PMR seems to be in remission, i still check with my rheumy (who is a good chinese bloke ) and my GP is ok. Sometimes i may not agree with her, but , looking back, she has pretty well been on the ball .............

I would still like to (and will try to ) get off pred , but if a little bit permanently can keep my other aches and pains at bay , that is the road i will travel.

All the best ..............Billy........

[LemonZest11]

That all sounds positive Billy, wishing you all the best! 😊