Evening all. I am having my adrenal function tested Friday and the information on the letter says it should take about half an hour.
Bit surprised about that. Thought it would be a bit longer. Be interested to know how long others that have had the test experienced??
Yes half an hour is about right for a short Synacthen test. They put in a cannula, take a blood sample for your cortisol level. Then they put in the artificial hormone to mimic the pituitary gland shouting at the adrenal glands. Then they come back in half an hour and take another blood test to check your after cortisol level. Job done.
Brilliant thank you. So hubby can wait in the car 😃 didn’t know if he should go home!!
My wait to be seen took longer than the actual procedure.
Make sure hubby has the newspaper or a book to read. I was waiting almost an hour while the nurses dealt with other patients and then I'm sure they made me sit and wait for another half an hour at the end - just to see I was alright. I think I was there for 2 hours in total. I remember thinking that the 9am sample as actually 10am!
I hope you're through more quickly, for hubby's sake! It wasn't a problem for me, as I drove myself, as hubby was at work.
I think you will be there a bit longer but not necessarily. They usually put a cannula in for 9am and take a basal blood sample, and then give you a dose of synthetic ACTH. Then take another blood sample 30 mins later to see if the adrenals have reacted to the injection. That's the short version - sometimes they take another sample 2 hours later.
I'd suggest hubby goes for a cup of tea ...
My appointment is at 9am. Really hoping for reasonable news. Been stuck on 5mg for over a year now. Not that well at all. Have low platelets and other problems with my blood so waiting for haematology appointment now. Sometimes think I need a higher dose as so very stiff at times but no pain. But obviously don’t want to increase if at all possible.
It’s taken me three and half years to get down from 60mg but stuck now.
It took me about 3 years to get from 80mg to 5mg (GCA only) ……so nothing particularly unusual in that…but what do you mean exactly when you say you are stuck!
How have you tried to reduce lower?
Can you be sure whether it’s your adrenals or your PMR/GCA that’s stopping you getting any lower? Or a combination?
I am also stuck at 5 mg. I have tried and tried to go lower to 4.5, taking 3 weeks at every six days, then 3 weeks at every 5 days then 3 weeks at every 4 days. As soon as I get to every 3 days I feel so awful - aching , lethargic and depressed. I find it hard to believe that 1/2 mg can make that much difference. The Rheumatologist thinks that I may have rheumatoid arthritis and has put me on methotrexate (10ml by injection once a week). It really improved how I felt when first started and managed to get from 10mg prednisolone to 5mg in 6 months, but as I say, I am now stuck. I have mentioned that maybe a slightly higher dose of methotrexate might make a difference but my rheumy seems to ignore this. I was wondering what dose others are at. I don't want to take more than necessary but would just like a bit more of my life back!
As lots of us have found, 1/2mg can make a significant difference.
If I were you, I would be inclined to stay at 5mg for a few months more -
a. that will give your adrenals more time to awaken (if the problem is that), and
b. your illness may actually NEED 5mg. If it does, it does…..won’t always be, but at the moment that seem what it needs.
I know it’s frustrating, but sometimes that how it is, one day you will get lower, so fir now go with the flow!
Thank you for your prompt reply - I was told by my first rheumy that I may find that 5 mg would be the lowest I would get, so no real surprise, What about methotrexate - do you know the dose most common for that?
No experience of MTX myself, but think 15 is a common start MrsNails is the expert.
Thank you - I'll wait to hear from her. Take care.
Hi, I’ve been on MTX 3times & until fairly recently at 20mg & able to taper successfully but a long time ago my lovely Dr Lim (RIP) always told me when l got to 5mg of Pred that l’d stay there indefinitely……
I’m currently on a higher dose of MTX 25mg as the consensus was l wasn’t absorbing it orally so l know have it by injection & it’s made a huge difference to me. I’m back to 10mg Pred after 3years of struggling & feeling awful even at 15mg Pred but l am now the ‘Old Me’ again 🙆🏻 (Not So Old 😉)
If l was on 5mg Pred l wouldn’t want to increase my MTX l’d just be delighted to be on 5mg Pred. I’d just try very slowly to drop by 0.5mg on a Slow, Slow Taper…..
Please don’t hesitate to ask if you have any more questions.
Kind Regards
MrsN
Hi there, thanks so much for your reply, very helpful. Yes, I am pleased to be down to 5 mg, but don't feel that wonderful, just so much better than trying slowly to kick in to 4.5 mg. I just wonder if a slightly higher dose of Methotrexate might help me back to my old self - at times feel so wretched that I can't do more.
My gut instinct is to sit at 5mg for a while, l plan to stick at 10mg for a bit before l start my next taper. I’d want to discuss with the Consultant or a Rheumy Nurse Practitioner before increasing the MTX - l was very reticent to go up that extra 5mg but fit me it was the right thing.
How long have you been on Pred? How long have you been at 5mg? What you also have to factor in here is the Adrenal Glands or should l say the lack of their input causing Adrenal Fatigue & the MTX won’t help with that.
Just of time David Austen Roses 🌹 will be back later so catch up then.
MrsN
Pred since 2015. Down from 30 mg at start and have been at 5 mg for about 10 months unless during one of my fruitless attempts to get to 4.5mg, Methotrexate for 16 months, starting at 7.5 then increasing to 10 after 3 months. Have another telephone consult with rheumy in 3 weeks. Will try to get him to answer my question about a possible increase in Methotrexate then
5mg Pred might simply be your dose at the moment & it’s not a high dose in the scheme of things but neither is 10mg of MTX - it’s generally between 15-20mg. For me there’s always been an overlap issue in so far as do l have something else as well as PMR? But when l feel well (as l do now) l attribute it to the MTX as l’ve had two very bad years when no dose of Pred was working!
Let us know what your Rheumy says.
Kind Regards
MrsN
Thank you so much for your input, it is much appreciated -- I will indeed get back to you when I have spoken to my rheumy. Meanwhile take care.
At 5mg you may not get a normal result because 5mg is still able to keep the cortisol production a little suppressed. This is why my Endocrinologist said 4mg was his upper limit. Mine wasn’t special at 4mg but by 1.5mg it was much better. 3 years to get from 80 to 5mg isn’t bad you know. How you reduce at this stage makes a big difference; it’s slower than on higher doses.
Just to reinforce what DL and Snazzy have said and asked - 5mg at this stage is really not bad at all. Prof Dasgupta told us last summer that he often keeps patients at 3mg-ish long term as it reduces the risk of relapses.
It isn't just adrenal function at this stage and your result may not tell you much anyway.
Hi ProPro,My wife has had this test every 6 months for the last two years and there has been no improvement in results at 6.8 - 7.0 after the last reading (US). She has been at 3.5 prednisone during that time. She has been on prednisone for 7 years for GCA and on Actemra for 3 years. Do you think that her adrenals are at their end?
Thanks,
Jim & CJ
Sounds as if they really aren't being very enthusiastic about returning from their vacation!!! What does the endocrinlogist say?
The actual procedure did take 30 minutes or so but I was in a room with other people being treated so there was quite a bit of coming & going. Details to take as ever, so allow at least an hour I should say. Hope it comes up with good news.
Hi patreesMy wife just finished hers yesterday. It took 1 hour for all the draws.
Best To You,
Jim & CJ
Just one more query . Are you given the result there and then?
When l had mine done, l got there for about 8.45am had a cannula fitted in the back of my hand & had blood drawn at 9am; 9.30am; 10am & l think at 10.30am then they brought me Tea n Toast & l took my Steroids then. My Consultant wrote to me with the Results…
Adrenals?
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adrenals?
