Tapering and Endocrinology

[Lutra2]

Have any of you been referred to an Endocrinologist as you've tapered down to 5mg or so in order check that your adrenal glands are working adequately? Is this common practice or rare?

[jinasc]

Yes - but you have to ask for it - below 5mg but lower is better sometimes it ends up as a long wait (especially at present) but you could ask for a short cortisol test (Basal Serum Cortisol) test.

It is taken at 9am in the morning at the GP's surgery and you don't take your pred that morning.

[Lutra2 in reply to jinasc]

Thanks Jinasc. Useful information.

[SnazzyD]

It seems that some docs like to wait for problems before they refer and some like my GP was happy to do it preemptively ready for when I was around 4mg. This may have been because I started on high doses. I got my ticket to see the Endocrinologist on the basis of the result not being terribly exciting. They said that 4mg and below is their ideal because 5mg, for some, can still be suppressive enough of the adrenal function so as to make the result unreliable.

[SheffieldJane]

I had to ask. My GP was a bit startled- sigh. I failed the first test, and now have an endocrinologist.

[MrsNails]

More often than not they wait until it becomes obvious there could be an issue. I have had mine done, a good while ago & l failed miserably - l went to see an Endocrinologist but he kind of got the wrong end of the stick & tried to start reducing me when my PMR wasn’t under control - My Rheumatologist really only wanted an idea if l could produce cortisol or not? 😑 But it’s now irrelevant as l am on 10mg (Yeh for Me 👏🏼) but my lovely Dr Lim (now no longer with us RIP) felt l’d probably be on somewhere between 7.5mg - 5mg indefinitely….. just due to the issues l’ve encountered.

[Viv54 in reply to MrsNails]

Such a pity Angela , im now back on 10 due to a nasty flare just came down far to fast !!I l took the Dr advice and tried to get down the lowest i could ready for the Endo app.I was on 5.1/2.but i am now back on 10,i have a zoom ENdo app next week , have had it booked in for ages,so going ahead with it . But it does feel all a bit hopeless atm . Best wishes Viv, x

[MrsNails in reply to Viv54]

Our bodies do not like coming down too quickly - I’ve just got back to 10mg 👏🏼 so l’m really pleased - l intend to sit here a while before trying for 9mg Yes worth going ahead but it’s a long slow road - l’m aiming for 7.5mg but after that l’m not so sure?

Hope you’re recovering from your Flare 🙏🏼

Cheers

Angela

[Viv54 in reply to MrsNails]

It's such a strange illness, such a rollercoaster , I thought I was doing well tapering, while all the time I was going down the inflammation was going up.!! I got to 5.1/2 and then it hit me ! Just started today on 9.1/2 see how I go .Good luck Angela , we can keep an eye out to see how we are doing, hope you get there .💮🌺🌸

[York54]

The Rheumy referred me to endocrinology for a synacthen test when I was on 3 or 4mg. I had a good result so am tapering off at my own pace now. At 2 mg at the moment, no PMR symptoms but then shingles decided to come and visit me 😡😡😡😡

[MrsNails in reply to York54]

Hi, had meant to message you - how’s it going with the Shingles? Hope your starting to feel better 💐

[York54 in reply to MrsNails]

Feeling better in myself but still have pain, not as bad as earlier on but still hanging around. Daytimes, I can distract myself , nighttime not so good but the only way is up . Thanks for asking Angela x

[MrsNails in reply to York54]

Take Care xx

[icu2 in reply to York54]

my past experience with shingles and the pain led me to apply cold ( as cold as i could take….i.e. ice cubes in a light cloth) compresses to the ends of the affected nerve endings. this for me was under my breast and arm ,leading into my back. i gritted my teeth and waited. finally it seemed to make the painful nerves regress and i was able to get some sleep. of course always lying on a thick towel to absorb the run off as the ice melted. it was the only thing that worked for me and allowed me to get a few hours of sleep.

[York54 in reply to icu2]

Thankyou icu2, I haven’t tried that but I get up a couple of times and bathe mine with a cold flannel. Mine starts at my naval and continues around to my spine. I liken it to taking the skin of my knee, that smarting and stinging feeling☹️

[pamela4215]

Yes - My rheumy recommended it when I had been stuck on 5 mg for five months. Every time I tried to reduce to 4, I had a flare. The test measured my adrenal function and Vitamin D levels. My adrenal level was normal and so was Vitamin D. I had a recent blood test and CRP and ESR were 2 and 5 so rheumy recommended I try to reduce to 4mg and subsequently lower at 8 week intervals. This was three weeks ago and I have now been on 4 mg with only a little stiffness at the moment. I found the test quite reassuring. I hope this helps. Kind regards.

[Lutra2]

Many thanks for all the replies - very helpful.

[PMRpro Ambassador]

The synacthen test shows only whether your adrenal glands are ABLE to produce cortisol - not whether they are doing so reliable, that is a much more complex affair and doesn't get fully into swing until you are at even lower doses of pred.

[Lutra2 in reply to PMRpro]

Ah, Thank you. Useful information.