Surprise package in the post!

[SheffieldJane]

I received a morning Cortisol test kit in the post. I am on 5 mgs of Pred and haven’t seen the Endocrinologist for well over a year. I can only think that he was copied in to my Rheumatologist’s detailed note of our last face to face appointment on the 20 Feb and this triggered the test being sent. I am not sure whether it will show anything useful given my current dose. I didn’t know that they did this, it maybe of some use to others on very low dose Prednisalone, to know that you can do a simple saliva test at home.

[yogabonnie]

wow I did not know that!!! interesting. so will that say if my adrenals are in tip top shape_ the cortisol or is that something else. I have a sneaky suspicion my PMR is gone. but like Dumbos feather I am hanging on to .5mg. although I skip a day a week now... going to skip 2 days next week! Thanks Jane! )my favorite name by the way!

[SheffieldJane in reply to yogabonnie]

Oh I hope it’s gone Bonnie. It would also be reassuring to know that your adrenals a getting ready to fly completely unaided. The best of luck! I think I may be going the same way but I’ve developed bad gut issues that are making me sick and tired. I wasn’t expecting the kit, perhaps your GP could arrange for one. It maybe all that is holding you back either physically or even mentally?

[HeronNS in reply to SheffieldJane]

Do you think the Actemra caused the gut issues? I hope you soon turn your health journey around and start feeling better. It is very tiring to feel sick and tired! ❤️

[SheffieldJane in reply to HeronNS]

I think so, unfortunately stopping it after a year did not stop the symptoms.

[HeronNS in reply to yogabonnie]

I looked it up, and it looks like something you can even order yourself if need be.

[SheffieldJane in reply to HeronNS]

It might not be the case in the UK.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

If you want to buy one, there are oodles on that well known online retailer beginning with A 😊

[HeronNS in reply to SheffieldJane]

Yogabonnie's in the US.

[Hollyseden in reply to yogabonnie]

I think my PMR is on the way out too🤞 In January I was quite unwell and for a few days I barely ate anything and also skipped my tablets inc pred. I realised when I started to feel a bit better that I hadn't had any adverse reaction to skipping pred! Back in the day if I was even late taking it I would suffer. Like you, I'm taking ½mg but now every 2nd day. Dumbos feather or security blanket I'm almost afraid to completely stop incase I get another massive flare. We will see. Interesting about your test in the post Jane. I see someone has commented you can even order these online. Worth looking into. Hope you get the result you need from this.

[Theziggy in reply to yogabonnie]

Bonnie, Professor Dasgupta keeps some of his patients on 2 mg for years!

[Nextoneplease]

We’ll, this is interesting Jane 😊 I wonder how readily available they are? No use to me yet on 8mg but would be good to know ….

Hope you feel better soon xx

[Bcol]

You can get a Cortisol test kit from the big "A" for around £50 - £60.00 and an Adrenals test kit for around £230.00. No idea on how accurate/good they are though.

[PMRpro Ambassador in reply to Bcol]

Measuring cortisol is easy enough - the synacthen injection is another matter though. And interpretation.

[PMRpro Ambassador]

Even at that dose you can still have an adrenal crisis if you were ill with an infection or were to come under extreme stress - a fall, emotional, whatever, In such an event your adrenals would normally produce a big spike of cortisol, as much as 9 times normal, but becouse of them being suppressed, they can't. So he's checking if you really are so low and a morning cortisol is the easiest (and cheapest) way of doing it.

ncbi.nlm.nih.gov/pmc/articl....

[SheffieldJane]

A little explanatory note would have helped. I suppose a poor result will lead to a Synacthen test. There would be little point in buying one, you need a laboratory to interpret the results and an Endocrinologist to act on them.

I got a tube with a wad of cotton wool to chew on for 60 seconds before my morning dose of Pred. Then a plastic envelope, addressed to the lab to send it off.

Having been out of my home for 4 weeks and blips with our new bathroom, I know that there is no spare Adrenaline. My husband demonstrates what it is like to have fully functioning adrenals. 😬

[PMRpro Ambassador in reply to SheffieldJane]

They have form don't they? They just sent you a rescue kit out of the blue originally!

[SheffieldJane]

yes - more worrying, a syringe and hydrocortisone.