Adrenal function recovery yay!: I just received the... - PMRGCAuk

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Adrenal function recovery yay!

SheffieldJane profile image
75 Replies

I just received the results from my second Synacthen Test and it seems that my Adrenal function has recovered all by itself. The only thing I changed is a small, slow reduction of Prednisalone. I hope this gives hope to people in the same boat. Sometimes the body just takes time.

The first test showed a baseline figure of 223 rising to 395 after the stimulating substance ( 24 hours Pred free). This was regarded as underperforming.

The second test showed a baseline of 327 rising to 495, this is apparently completely normal.

Of course I am still tired, but it has nothing to do with my Adrenal function. My Endocrinologist suggests that it is steroid withdrawal. He wants me to wean down to 3 mgs ( I am alternating 4.5 and 5 mgs and will continue to do so for the 6 weeks prescribed by the Rheumatologist) , then carry on alternating at 6 week intervals until 3 mgs is reached. Slow suits me! Apparently I have to continue observing the sick day rules until I see him again.

My guess is that I jumped the gun on the Synacthen Test and should have waited until I was at around 2/3 mgs rather than 5 mgs.

Relieved! Just going for a nap though 😴.

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SheffieldJane profile image
SheffieldJane
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75 Replies
GOOD_GRIEF profile image
GOOD_GRIEF

That's great news, Jane. I'm really happy for you.

📯🎶📯🎶📯🎶📯📈

PMRpro profile image
PMRproAmbassador

Great!

jinasc profile image
jinasc

Yippee - just don't push it.............it can take up to one year.........and remember you must carry your blue steriod warning card for at least that year once you stop pred.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Good - one less thing to worry about. As you know, mine spluttered and faffed about for the best part of 9 months - and then suddenly remembered what they were there for!

But as jinasc says they are still not fully functioning until well after you’re off the Pred!

That’s Brilliant News Jane 🥂🌟🍾

So pleased to hear it! xxx

CT-5012 profile image
CT-5012

🥳🤞

YuliK profile image
YuliK

Jane I'm so happy for you. It must be a great relief for you that your adrenals are functioning. 👏

I'm fluctuating between 6-5:5mg.

My rheumatologist wants me to do a synacthen test. She told me I must be prednisone free 24 hours before the test.

I'm a bit worried about being 24 hours without pred. If I'm not taking my medication on time, I can hardly get out of bed and the old pmr pains start kicking in.

Did you find it difficult not to take pred before the test ?

Thanks..

Keep up the good work of reducing. 👌

YuliK 🌹🌹🌹

SheffieldJane profile image
SheffieldJane in reply to YuliK

No I didn’t, which was another indicator for my Endocrinologist. Slightly achey, if that. I was at your level for the test but had been stuck at 7 mgs for the best part of a year, continually failing to get down even by half a mg. , previously, perhaps that year was really needed. You can take it straight after and also book an early morning appointment if that’s when you normally take your Prednisalone. The whole process takes about an hour, allowing for waiting times. My theory is that my dose wasn’t low enough for an accurate, optimum, results, who knows though.

YuliK profile image
YuliK in reply to SheffieldJane

Thank you Jane, I think it's a bit too early for me to pass the synacthen test. My rheumatologist is pushing for my reduction asap, but I'm doing it the slow method.

On Monday I have an appointment with my GP for other problems and I want to hear if she thinks I should wait a little longer for the test.

I'm really glad that's things have improved for you.

Letting others on the forum know that there is an end to pmr is so encouraging and gives a lot of positive support.

Thank you so much

YuliK

Longtimer profile image
Longtimer in reply to SheffieldJane

Lovely news...gives us all hope. I have been stuck on 8mg for several months....decided to drop a few weeks ago and wham but by a fatigue like I have never experienced in 7years......I feel like I have been drugged, and my legs collapse under me. Thought it might be adrenals...but at 8mg to high to test. Doctor says...steroid myopathy not convinced....but like you were in the past...what to do....rise or lower the steroids....

Glad you now know what's happening and where to go from here...

PMRpro profile image
PMRproAmbassador in reply to Longtimer

1mg change in dose will not induce an overnight deterioration in muscles to say it is myopathy.

Longtimer profile image
Longtimer in reply to PMRpro

I agree...but where do I go here?...😏

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Dunno ...

pinks33 profile image
pinks33

Great news for you, and reassuring for all of us when we eventually get to that point in our GCA journey.

SheffieldJane profile image
SheffieldJane in reply to pinks33

It’s not inevitable that everyone will have real problems with Adrenal function, but it’s good to be alert for it at the low doses.

Pollyanna16 profile image
Pollyanna16 in reply to SheffieldJane

Yes I agree wholeheartedly! If I had had the test a year ago at about 4mg perhaps I wouldn’t have had to go through a procedure which has taken about 6 months to find my adrenals are nearly rock bottom. So now back on 5mg & endocrinologist underlined not to drop below 3.5 ever! Feeling good on 5mg so going to try 4.5 today whilst holidaying on the North York moors. Great news Jane, very pleased for you, thank you for your updates xx

SheffieldJane profile image
SheffieldJane in reply to Pollyanna16

I did think about you when I posted Pollyanna. Have a lovely holiday. 🌼🌼

Yellowbluebell profile image
Yellowbluebell

Greatx

PMRCanada profile image
PMRCanada

Thrilled for you SJ. It is remarkable what our bodies can do. Rest and breathe a sigh of relief!

Mary63 profile image
Mary63

👏👏

Purplecrow profile image
Purplecrow

What great news! Looking forward to the same in the future!🌸

altywhite profile image
altywhite

That’s great news Jane, very slow and steady it is then. 😊 There may be hope for me yet!! 😂 I had to go up a few mgs but am back down to 7mg again. I was almost down to 5!!! 😀😀 xx

Conundrum profile image
Conundrum

Great news Jane, and very encouraging for all of us. Keep calm and carry on!

Baileyw06 profile image
Baileyw06

Great news!!!

powerwalk profile image
powerwalk

Thats fantastic news. A real boost. I will be looking at this taper to try maybe, been stuck on 4.5 forever. I don't even remember how long! Hope it continues to improve.

Rugger profile image
Rugger

Marvellous news, Jane. You must be so relieved and I hope it's given you a well-deserved boost!

Great news Jane - great effort & well deserved ! x

fmkkm profile image
fmkkm

👍🎊💃

Slowdown profile image
Slowdown

So glad, Jane, after the rocky road of indecision and feeling very rough and not knowing what to do for the best - sometimes procrastination has its merits.

I for one have learnt a lot from following your descriptive posts, being very honest about the downsides and doubts and now a result to gladden your, and our, hearts. I'm not there yet, but it's a lesson for the future (I just assume I'll be getting everything going since that's the way it's worked so far!)

Yay Indeed 😄

markbenjamin57 profile image
markbenjamin57

Congrats Jane. That must be very reassuring and will hopefully give you the confidence to continue aiming for Pred Club Zero - albeit gently ;-). Interesting comment / opinion from the Endo that the DF (Deathly Fatigue ) could be due to steroid withdrawal as much as anything else? As others here suggest, navigating the PMR heterogeneity / Pred tapering / Adrenal recovery journey can be a complex and often frustrating one - and far from an exact science...

SheffieldJane profile image
SheffieldJane in reply to markbenjamin57

How do I go forward when I don’t know which way I’m facing? John Lennon

Longtimer profile image
Longtimer in reply to markbenjamin57

That`s putting it in an educated polite way...not the words I am using at the moment...so good to have seen your previous blocked post...it certainly gave me a lift....hope you are still in club zero....

Koalajane profile image
Koalajane

That is good news Jane

Blearyeyed profile image
Blearyeyed

So glad you have some good news at last you deserved the pick me up xx

Rimmy profile image
Rimmy

Excellent to hear that Jane !! - I hope everything keeps falling (the 'right way') into place - you deserve it !! XX

Sho-Sho profile image
Sho-Sho

What a relief - I'm sure you must feel euphoric to have had such good news. I am struggling down trying to achieve the same having been stuck at 7.5 for a year (3 years of GCA), now got to 7.0 after a 7 week taper, so perhaps in six months - its given me hope!

Coachev profile image
Coachev

What is sick day rules? I'm experiencing a bad chest cold. My sugar is bouncing around like crazy, but I need honey in my tea, and I crave carbs.

SheffieldJane profile image
SheffieldJane in reply to Coachev

Sick Day rules apply if you’ve been diagnosed as Adrenal deficient. If you experience a stressful event or get a significant infection, you have to increase your dose of Prednisalone, perhaps double it. This is because your own Adrenal system cannot respond to the threat/ stress/ illness/ operation. When you fail a Synacthen Test you get an emergency injection kit of Hydrocortisone and a leaflet that explains about sick day rules.

Nothing lovely like honey in your tea or lovely carbs I’m afraid - cheering up is important too though - go on - you know you want to. 😁

camerashy profile image
camerashy

Well done. A very slow process but hope round the corner. I see the endocrinologist next week so will see what they say

Good luck to you 🙏

SheffieldJane profile image
SheffieldJane in reply to camerashy

Good luck to you too 🙏

Neck680 profile image
Neck680

So glad for you and so glad you could post such good news. It gives the rest of us hope, reminds us again of the sunny side.

Mimma profile image
Mimma

Great news. Well done - I’m on 8mg at the moment and dropping 1 mg each month.

YuliK profile image
YuliK in reply to Mimma

Mimma hi there

I'm fluctuating between 6-5:5 mg. At 8mg , I sincerely recommend you reduce 0:5mg at a time. You are reducing far too quickly..

YuliK 🌹

Mimma profile image
Mimma in reply to YuliK

I’m just following my rheumatologist’s orders. So far it’s been okay. Fingers crossed

YuliK profile image
YuliK in reply to Mimma

Fair enough... good luck dear.

YuliK

Lonsdalelass profile image
Lonsdalelass

Wonderful news!! There's hope for us all!! Xx

Lochy profile image
Lochy

Delighted they’re still there and now awake. I track your progress carefully as we’re on similar timeline. I’m lagging behind you though but cheered that I will get there!

Take care!

Thelmarina profile image
Thelmarina

That is just fantastic! You deserve that rest - joy can be just as tiring as tears even though pleasurable ..😘

Oumaof2 profile image
Oumaof2

Brilliant news Jane... Such a boost for you and those of us waiting to reach that diagnosis....

Do take it easy.....

So pleased for you... Good wishes

Lena 🌻

MamaBeagle profile image
MamaBeagle

Good news Jane - so pleased for you. That's a bit of stress removed from you life - and that in itself should aid recovery - you'll be able to get out your dancing shoes soon!💃💃

Suet3942 profile image
Suet3942

That’s fantastic news Jane. Well done you! 🌸🌸

mtrafter profile image
mtrafter

Great news, I cant imagine ever getting to that point.

yogabonnie profile image
yogabonnie

Hooray! Hurrah!! Ho Ho!!! Yea!!! So pleased about this. Tell me again what means "observing the sick day" .. Onward!

SheffieldJane profile image
SheffieldJane in reply to yogabonnie

See my reply above to Coachev. It only applies to Adrenal deficiency. Xx

Songbird69 profile image
Songbird69

Hi Jane, Fab news. 😊

FRnina profile image
FRnina

great news! Encouraging for all of us.

Marlenec profile image
Marlenec

WOW great news Jane - very pleased for you! I started taking Magnesium a few months ago (found out on here, thank you) and believe that helps with enery levels. I think it must be the Mag as I ran out for a couple of weeks, but didn't realise how different I'd felt until I was back on them again. Maybe worth a try.

Best wishes

Marlene

SheffieldJane profile image
SheffieldJane in reply to Marlenec

I’ve just popped one. I keep forgetting supplements with all the drugs I have to accommodate. X

bunnymom profile image
bunnymom

Wonderful news Jane! Gives me some confidence in our bodies.

JakeSearcher profile image
JakeSearcher

Does everyone need this test when below five?

SheffieldJane profile image
SheffieldJane in reply to JakeSearcher

I learnt about it on this forum but being a clever clogs probably asked far too soon and got on to an alarming conveyor belt of treatment options.

York54 profile image
York54

Aw Jane, fantastic news, so pleased for you, thanks for sharing. There is light at the end of a long tunnel. Xx

maria40 profile image
maria40

So glad it's happened. That't really good news.

How long have you been taking steroids? I fear my adrenals may have gone into retirement as I've been a long 19 yrs on pred. My GP is not in favour of a synacthen test until I am at least on 5mg but I'm now at 7mg and so weary that I may ask him again next week though your experience does suggest it may be better to wait.

PMRpro profile image
PMRproAmbassador in reply to maria40

You don't really get a reliable result until the dose is below 5mg - some endocrinologists refuse to do one before then.

SheffieldJane profile image
SheffieldJane in reply to maria40

40 months . I was swooningly tired at 7 mgs - maybe it was a good sign?

HeronNS profile image
HeronNS in reply to SheffieldJane

That sounds a lot worse than less than three and a half years!

SRIXON profile image
SRIXON

Im green with envy, well done Jane. X

SheffieldJane profile image
SheffieldJane

I wish it came with a surge of energy. 😴

Aleish profile image
Aleish

Are you still on prednisone? Are you still in pain? I just found some notes that I printed out some time ago. You were talking about cortisol, adrenals. Information about using combinations of folic acid and methofolate. These notes are not dated and I don’t know when you posted them.

I need some information. I’m on 7 mgs prednisone. I plan on doing alternate day dosing at 5 mgs and 4 mgs next day when I’m at 5. My Rheumatologist said no cortisol testing until a few months after I’m off prednisone. I’m thinking that is wrong.

Do you get pain relief with methotrexate? I see you took with the two forms of folic acid. I have to do something about my terrible pain and want to start the methotrexate but I also have the MTHFR Gene single defect of C677t snd I don’t know what to do. I’m just so worn out from the PMR. I believe the GCA is gone.

PMRpro profile image
PMRproAmbassador in reply to Aleish

GCA and PMR are considered to be the same disorder on a spectrum and both respond best to pred. If you have PMR then it is because you have reduced too far.

Aleish profile image
Aleish in reply to PMRpro

I had the PMR for years before the GCA. I’m off the Actemra for a year and my doc has me starting again on 2/20. Hope it relieves me. I have been going up and down with no headway on prednisone . Between my age and some very awful stress from family members I almost feel traumatized. Seeing pain management tomorrow. Probably need psychiatric med and therapy. So overwhelmed. 😢

SheffieldJane profile image
SheffieldJane in reply to Aleish

That sounds too clever to be me Aleish - unless I was having a rare lucid moment. 😉

Aleish profile image
Aleish

Just saw this. You are saying 2/3 of a milligram before the Synacthen test. How long on that dose before the test?

PMRpro profile image
PMRproAmbassador in reply to Aleish

Not 2/3 of a mg, 2 to 3 mgs/day.

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