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

PMRGCAuk
9,139 members15,875 posts

Adrenal function recovery yay!

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 😴.

69 Replies
oldestnewest

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

3 likes
Reply

📯🎶📯🎶📯🎶📯📈

3 likes
Reply

Great!

2 likes
Reply

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.

3 likes
Reply

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!

6 likes
Reply

That’s Brilliant News Jane 🥂🌟🍾

So pleased to hear it! xxx

3 likes
Reply

🥳🤞

2 likes
Reply

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 🌹🌹🌹

3 likes
Reply

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.

2 likes
Reply

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

4 likes
Reply

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...

Reply

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

1 like
Reply

I agree...but where do I go here?...😏

1 like
Reply

Dunno ...

3 likes
Reply

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

3 likes
Reply

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.

4 likes
Reply

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

Reply

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

Reply

Greatx

1 like
Reply

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

3 likes
Reply

👏👏

1 like
Reply

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

3 likes
Reply

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

2 likes
Reply

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

2 likes
Reply

Great news!!!

2 likes
Reply

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.

2 likes
Reply

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

2 likes
Reply

Great news Jane - great effort & well deserved ! x

3 likes
Reply

👍🎊💃

2 likes
Reply

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 😄

3 likes
Reply

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...

8 likes
Reply

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

11 likes
Reply

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....

1 like
Reply

That is good news Jane

1 like
Reply

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

2 likes
Reply

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

3 likes
Reply

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!

2 likes
Reply

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.

Reply

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. 😁

Reply

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 🙏

1 like
Reply

Good luck to you too 🙏

Reply

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.

1 like
Reply

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

1 like
Reply

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 🌹

Reply

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

1 like
Reply

Fair enough... good luck dear.

YuliK

Reply

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

1 like
Reply

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!

2 likes
Reply

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

2 likes
Reply

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 🌻

1 like
Reply

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!💃💃

1 like
Reply

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

1 like
Reply

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

1 like
Reply

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

Reply

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

1 like
Reply

Hi Jane, Fab news. 😊

1 like
Reply

great news! Encouraging for all of us.

1 like
Reply

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

2 likes
Reply

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

1 like
Reply

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

1 like
Reply

Does everyone need this test when below five?

1 like
Reply

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.

Reply

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

1 like
Reply

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.

1 like
Reply

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

3 likes
Reply

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

Reply

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

1 like
Reply

Im green with envy, well done Jane. X

1 like
Reply

I wish it came with a surge of energy. 😴

2 likes
Reply

You may also like...