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
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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.
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!
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 ?
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.
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.
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...
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
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
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.
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!)
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...
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....
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!
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. 😁
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!
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!💃💃
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.
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.
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.
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.
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. 😢
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