Adrenal insufficiency?: I'm dropping from 1.5mg to... - PMRGCAuk

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Adrenal insufficiency?

JanetRosslyn
JanetRosslyn

I'm dropping from 1.5mg to 1mg and I'm feeling fine... Working full time and doing lots of walking when time permits. My question is this... I'm suspecting my adrenal glands are working okay, so would it hurt to join my husband on Europe's longest zipwire ride? I so want to do it, but don't want to jeopardise my progress and I guess it will involve a lot of adrenalin?

22 Replies
oldestnewest

Ask your GP. That is what I would do. Mind I would not contemplate a Zip Wire, long or short.

However, whatever floats your boat and makes you feel good.

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Hi Jane..... The longest zip wire - sounds like fun but are you up to so much excitement you don't want it to send you over the top (and I don't mean literally)!

It is probably best to speak to your Doctor though re the g-force, I think that's what they call it.

If you get the OK enjoy.

D

PMRpro
PMRproAmbassador

Why not - take a one-off extra dose and do it! But asking your doctor would be a good move first and be sure you don't have any other contraindications (I can't for a few reasons):

zipworld.co.uk/medical-rest...

Which one is it? The one up the road from me was the longest when it was built. And no - haven't done it!

HeronNS
HeronNS in reply to PMRpro

Google says it's in Wales - longest in Europe, that is. But the longest one in the world is in the UAE. A friend of mine was on one in Costa Rica which was part of a rainforest experience. Not for me. I can't even climb a ladder higher than the second rung and I feel insecure on my own balcony (only on third floor floor).

Hi JanetRosslyn. Nothing would induce me to do a zip wire ride but I’m inclined to say if you want to do it then go for it! Better check with your GP perhaps? I’ve been hovering around the 1mg of prednisolone for a couple of years now and I think the occasional thing that makes your heart beat faster (in a good way) is fine. I seem to react and get horrid fatigue if it’s something over a few days I’m not looking forward to -like having house guests with the associated cleaning and cooking. I would assume if you can cope with work then something you’re excited about would be a bonus mentally if not physically. Good for you, I like posts like this x

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Sometimes you just have to do something and say you will deal with the aches and pains later. If it's a sitting one make sure you use the nook of your elbow to hang on rather than your hands. On your front...it looks even more scary!

As pmrpro says there may be other restrictions on health grounds. I hope you can do it and have the chance to rest the next day or day after if the adrenaline whups you. 🤞

Hidden
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I doubt that I would take an extra dose of pred to do a zipwire ride because I'm sure that I would blow a gasket somewhere. I have done a few parachute jumps in my lifetime. I have no need for ziplines and bungee jumps because I'm afraid of heights.

If it was me I’d pop a couple extra and go for it providing there were no physical contraindications like holding head up in face down position like some require you to do.

Yellowbluebell
YellowbluebellAmbassador

I want to do that!!

I don't know why you'd take extra pred ahead of time if you feel fine. But I agree it would be good to get the doctor's okay, and perhaps your husband should too if this is also an unusual experience for him, as there are some health risks.

JanetRosslyn
JanetRosslyn in reply to HeronNS

Thanks Heron. Hubby's just as mad as me, but he's ten years younger and an extremely fit ultra-distance runner (Comrades Marathon in South Africa, 56 miles). I'm lucky :-)

HeronNS
HeronNS in reply to JanetRosslyn

I think it sounds like a fantastic adventure and although I wouldn't and couldn't do the same I don't blame you for wanting to go for it. You only live once and you should seize the day! Enjoy!

Thank you so much for all your responses.

PMRPro: I've checked the contraindications you kindly linked to, and I think I'm okay. Apparently it's the fastest zipwire in the world, not the longest. I got that wrong (sadly) but I'm still up for it! It's in Wales... zipworld.co.uk/adventure/ve...

Poopadoop: I'd be laying flat, face-down. Whahay!!!!!

DadCue: I did a parachute jump pre-PMR and LOVED it. Hardly slept for 3 days afterwards as I was 'buzzing' so much. Isn't it exhilerating! I did it because I was scared of heights and decided just to go for it, do or die style. Heights don't trouble me now. I've climbed over the top of the O2 building in London and over the highest point of Sydney Harbour Bridge (all pre-PMR of course).

Yellowbluebell: Do it!!!

I didn't want to bother my GP as she is so busy, but I've just noticed I've got a Rheumy appointment in July so I'll check it out then.

Thanks again everyone :-)

Is it prednisone that you're talking about? If so, your adrenals ARE working. The physiological replacement dose of prednisone if your adrenals arent working is 5mg - 7.5mg of prednisone. You are WELL under that, so you do not have adrenal insufficiency, and your adrenals are working just fine. IF you had adrenal insufficiency on that dose of prednisone you would be very very sick. You may want to check with your doc for other reasons, but not for adrenal insufficiency.

PMRpro
PMRproAmbassador in reply to lilyak

Not quite I fear. There is a lady on the forum who had reached 2mg pred and FELT fine for day to day living. Her rheumatologist routinely did a synacthen test on all patients - and that established she had no reserve adrenal function at all.

In the last year or so a group in London published work suggesting that the body can function adequately on the equivalent of 2-3mg pred. The problem arises when a burst of cortisol is required in response to stress of whatever sort - physical, emotional, illness or trauma. Not saying the zipwire would pose a problem or not - but being on well under 5mg isn't a guarantee you are OK.

lilyak
lilyak in reply to PMRpro

being well under 5mg LONG TERM, as the poster said, IS a guarantee. something would have come up by now to stress the body. Maybe you're one in a million, but probably not. Most people can't function on 2mg of prednisone. as in the vast majority can not function without feeling it. But if you're the type to lie in bed all day and do nothing, may be you woudn't notice. but seriously, very unlikely you could taper downt o 2mg of prednisone, and not have a problem. Very, very, very unlikely.

Hidden
Hidden in reply to lilyak

It does cross my mind then, if you are right, that money is being wasted by rheumatologists who test in the 3mg to 5mg region to see if they have capacity. Perhaps you have research evidence or physiology based background that fully supports your idea?

PMRpro
PMRproAmbassador in reply to lilyak

No - the lady had been at 2mg for months, she felt fine but the situation was very risky. And she DIDN'T just lie in bed. Not that that prevents you catching an infection or developing some condtion. I don't think I would argue with experienced endocrinologists though - too much at risk.

Hidden
Hidden in reply to PMRpro

Interesting .... it is the granddaddy of all the other known adverse effects to long term pred use. First is cushingoid, then it is dysregulation of a slew of body functions, then it is adrenal insufficiency which causes pain AND THEN if you are lucky, you won't have an adrenal crisis...because this outcome is somewhat rare. Have no worry, you can always take more pred.

Just to update... my post was six months ago and we booked the zip wire, with my Rheumy's approval, but didn't get to go as I then developed GCA . I don't quite feel up to it yet, but I'll get there one day when I'm feeling better, and when the weather is kinder :-)

PMRpro
PMRproAmbassador in reply to JanetRosslyn

Oh what a shame!! Better luck next time.

Hidden
Hidden in reply to JanetRosslyn

You have done a parachute jump ... I don't think a zip wire will top that. I would recommend scuba diving.

Sorry to hear about GCA.

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