synacthen short test results

[Angel_doll]

I’ve been on pred since January 2021. In September 2023 my dose was upped from 6.5 to 40mg as GCA was suspected by my GP. This proved not to be the case, and by May this year I had tapered down to 4mg. Over the next 24 weeks I slow tapered to 2.5mg. At my next phone consult with the rheumatologist he asked if I was experiencing any fatigue or lightheadedness, and I replied that I was sometimes lightheaded when I stood up from crouching down, and also experienced occasional fatigue. He sent me for a short synacthen test. The results were baseline 273 nmol/L, 321 at 30 minutes and 377 at 60 minutes. He has recommended to my GP that I take 4mg of pred for life. I have not had an opportunity to discuss this with him. I am due a face-to-face appointment in six months. It sounds like he thinks my adrenals will never recover sufficiently. What is the experience of other people regarding their adrenals waking up? I don’t want to be taking 4mg for ever if there might be the chance of an even slower taper working.

[PMRpro Ambassador]

I would say it was nonsense. To have a basal cortisol of 273 is very promising when you are still on 2.5mg of pred which is still enough to suppress cortisol secretion and ongoing steroid therapy makes the interpetation much more difficult even for expert endocrinologists. Your adrenal glands aren't responding normally to the synacthen injection - normal would be a cortisol rising to over 420 at 30 mins but that is to be expected.

As you continue to taper the pred dose, cortisol production will recover - but it doesn't happen quickly and the quoted time scale is one month for every month of steroid therapy up to about a year. Then the theory is that a year is enough however long you have been on pred. However, a study in Leeds found that it took PMR/GCA patients a lot longer to recover adrenal function than they had expected. There are people on the forum who have required far longer than a year but still got off pred. SnazzyD had much lower results at 3mg pred which improved as she lowered the pred dose and I think she was trudging through the adrenal morass for a couple of years.

It probably won't happen with a standard sort of taper - but if you taper with the smallest possible steps and not dropping every month but take 2 or even 3 months at each new dose. it may well be possible. I certainly wouldn't give up yet!

[SnazzyD in reply to PMRpro]

I think piglette had a bit of a mare too.

[PMRpro Ambassador in reply to SnazzyD]

I remember her saying she hadn't even the energy to change channels on the TV!!!

[piglette in reply to PMRpro]

I got a new zapper so it is a bit easier to do!! I have been watching the reopening of Notre Dame Cathedral. It really was very impressive in my opinion. It was so nice to see so many world leaders actually talking to each other and smiling.

[PMRpro Ambassador in reply to piglette]

I saw some of it - like the music. It wasn't difficult to find the money for that - could have been better spent on people. The new spire is rather fine though.

[Angelsmummy in reply to piglette]

Maybe smiling face to face but back stabbing when they get a chance!Glad you have a new zapper Piglette,loads of soppy Xmas films to watch over Crimbo!xxx🎄🤶😜

[Angel_doll in reply to PMRpro]

I’m not sure what effect it would have had on the test results but I hadn’t taken pred for the 24 hours beforehand.

[PMRpro Ambassador in reply to Angel_doll]

Not a great deal - having pred in your system can interfere with the cortisol estimation but not always and only by a limited amount.

[SnazzyD]

I’m no expert but at this stage never say never at least not yet. This is coming from someone who took a long time to recover adrenal function. Looking at my list, I took 31 weeks to get to 2.5mg. 2.5mg-2mg, where you are now, took 14 weeks. I often felt like you did throughout. To go from 2.5mg to 1mg took 31 weeks. My Synacthen test looked about like yours at 4mg, admittedly being more suppressed at that point. It was much better by 1.5mg, by which time I didn’t feel wretched all day every day. It took 18m from zero Pred to start to trust my adrenal function, though did have a few crises due to extraordinary circumstances each time.

One thing I did have to do was shy away from life in order not to collapse in a heap and keep having to put up the dose to prevent a crisis. I did have to up my salt intake to avoid low sodium and be aware of low blood sugar.

I wasn’t very impressed by any of my rheumatologists’ expertise with adrenal function. On this forum I have seen a range of theories from no recognition at all of this issue to throwing in the towel when a patient is still above 5mg. I only ended up having a Synacthen test and Endo referral thanks to my GP. Perhaps my endocrinologist was a bit gung-ho because even when I was feeling quite unwell they still suggested 1mg per month from 4mg. I declined and did my own thing according to what I could manage.

Maybe you will need supplementation for life but perhaps an Endo needs to make that decision and when your PMR is reliably quiet they would probably put you on Hydrocortisone which is less potent than Pred.

[Bopants in reply to SnazzyD]

Hi Snazzy, I just got the results of my latest SST, 30nmol prior to hormone injection and 264 (which was corrected, for what I’m not sure, to 209), I’m at 3mg but had not long reduced from 3.25mg. I’ve been on the stuff for 16 years for RA, were these similar to your SST result at 3mg? My first SST at 5mg was 31/94, so at least this latest one is a bit better. I’d love to know how your SSTs improved over time if you have time please?

[Glyngin]

down to 5mg prednisone after 5years of up & down.Just wondering why my appetite is still enormous same as on 20 mg.When will it decrease?

[SnazzyD in reply to Glyngin]

A good question. Might be worth starting a new post to catch those who might not see your comment here. When you do post, describe when your hungers hits and what you crave and how you feel after eating etc.

[PMRpro Ambassador in reply to Glyngin]

Have you gained weight? Have you tried cutting carbs? It is quite difficult to change eating habits at any point without a fair bit of discipline - maybe that is part of the problem?

But as Snazzy says - a new post would get you more replies.

[Blondiblue]

I am unable to convert your ACTH test results to the American norms, so I don't know how far below normal your results are.

Here's my story: PMR in 2012. Took 30 mg. to resolve. I only got worse on 15 mg. 2016 I got off prednisone (for 2 wks!). During that time I had weekly low grade fevers, lasting about 4-5 hr in afternoon. A smart intern suspected GCA. Both arteries were positive.

Finally got off Actemra a few yrs ago and went as low as 3 mg, never satisfactorily. General thinking was I was simply not trying hard enough. No doctor wanted me to go to 4mg.

About 1 1/2 yrs ago I put myself on 4mg. It was life changing. I could go for walks, had virtually no pain. I got my life back. Doctors saw the difference and said, well OK but you know the risks. Well, I do but I had no quality of life.

Now to my Synachten results. Normal was anything above 18. My 60 min. was 21. That's why they tried to forbid me my 4 mg. (I only was off prednisone, I think, for 24 hr or less before the test.)

Note: I hover between diabetes and pre-diabetes and have 5 spinal fractures!

[PMRpro Ambassador in reply to Blondiblue]

Does this help?

labunitconvert.com/cortisol...

[Blondiblue in reply to PMRpro]

Thanks!