Yesterday I received the worrying news that, after a blood test taken by the rheumatology pharmacist he finds my score is 61. 100-400 is considered abnormally low. So now for a syancthin (spelling?) test. I have been on pred for 7/8 years & down to 2.5mg but I asked the Rheumy if I could have a test for adrenal insufficiency before she put me on Methotrexate for Psoriatic Arthritis (still not definitely diagnosed). So I have been on 15mg of hydrocortisone for around 6 weeks whilst these blood tests have been ongoing. The 1st result was nonsense because no one told me not to take Hydrocortisone that morning 🙄. Hey ho now rather anxious & in particular as I may have to take Hydrocortisone for the rest of my life & there I was trying to come off pred completely! Very depressing! Has anyone had experience of the syancthin test? I know some people can have a bad reaction. I am pretty sure I have read on this site that adrenals kick back in below 5 mg a day so this is all very worrying as I have been reducing from 5 down to 2.5 for around a year, rather slow but lots of ups & downs on the way! Thanks everyone
Adrenal insufficiency : Yesterday I received the... - PMRGCAuk
A recent report I read suggested that 50%ish of people on long term (over 3 months) of even low dose oral steroids can have Adrenal problems. (Even a one off dose of steroid i.m. or epidural would affect adrenal function; as would inhaled steroids and creams) The first blood tests showed poor adrenal function, but retesting after 6 months approx 50% had better function, so don’t give up hope!
Best test I ever had.................went in with a book..........comfy chair, canula in, book opened, next thing I knew - woken up with a cup of tea and a biscuit..........they had taken the book out of my hand, put the bookmark in and put my glasses beside them.
Yippee best 3 hours I ever had in hospital.
My Synacthen Test showed an inadequate Adrenal function. When I return from Australia in May I have to decide between my Endocrinologist advice - swap 5 mgs of Pred for 25 mgs of Hydrocortisone, taken 3 x a day and reducing quickly. Hydrocortisone mimics the action of your own Adrenals in that it has a much shorter half life than Pred. Therefore there are fluctuating levels of cortisol in your system throughout the day, like normal. This will hopefully prompt your own Adrenals to work. Pred just gives a flat dose. It doesn’t do much for PMR if you are still symptomatic, however.
My Rheumatologist favours reducing my low dose Pred very gradually and taking Methotrexate for PMR pain. I also have suspected Psoriatic Arthritis, having bad Psoriasis on my feet and joint pain. Methotrexate is specific for that.
I am unsure of what course to take. I feel very reluctant to start any different drugs. My Adrenal deficiency is less severe than yours, having a baseline of over 200 rising to over 300 ( can’t remember the exact figures.)The Endocrinologist suggests that I have a 95% chance of a restored function in time.
3 years PMR on 5 mgs of Prednisalone.
Sorry for this long reply but I'm sure your dilemma is relevant to many of us. I'm also nudging my GP and Rheumy for a referral to a suitably experienced Endocrinologist for a Synacthen / ACTH test on the same basis. But when I say 'nudge', I fear that it will become a firm and justified 'Ask' based on what I have learned from this forum (Aunties, please take a bow?).
My Objective? To clinically establish, as reliably as possible, whether the cause of my persisting DF is, in fact, due to long-term steroid induced adrenal suppression as has been suggested as being more prevalent than previously thought in a recently quoted research study here:
[See Endocrine Abstracts (2018) 56 P44 | DOI: 10.1530/endoabs.56.P44: 'The Tip of the Iceberg' - Authors Rebecca Sagar & Afroze Abbas].
Or, at least to provide a medically evidenced perspective around possible, permanent adrenal atrophy (+/-) in my DF symptoms equation: and if necessary focus on other possible DF causes - as opposed to relying on conjecture either by my GP or Rheumy. As many of us know, they can get it wrong too.
Having oscillated between 2 mgpd and (occasionally, and successfully at times) Zero Pred for about 12 months, the DF (Deathly Fatigue) continues to be my persisting and most debilitating symptom after 4 years of PMR. My low level (subjectively, 1-2 out of 10) PMR Pain and stiffness are fairly well controlled / tolerable with Pred most of the time.
But DF is the real Demon for me. And, as has been mentioned here once or twice, DF doesn't necessarily correlate with the typical PMR pain / stiffness symptoms regardless of Pred dosage / reduction regimens in the prevailing conditions.
The Hydrocortisone option sounds promising. But, as you say, with alternative PMR Meds options, it can be a case of 'Better The Devil...' etc - depending on the individual and their health context? Hey Ho... the Plot thickens.
Either way, try to keep smiling on the often un-predictable PMR (and GCA) Journey..
DF is definitely my worst debilitating symptom.
Thank you Mark, I seem to be in good company 😬. I will read the article later, all this information should help any battles down the line! I am sorry you have been struggling having got down to such a low dose. It does read like adrenal suppression & that’s something I have only learnt about by reading this site for the last 3 years. What would have happened if I had just continued on reducing the pred I dread to think!
All part of the service Polly, and I'm sure that many of Us Lot share the same, crippling experience of DF. As you say, a relentless push - either from the medics or ourselves to reduce the Preds against all odds can be more damaging than good in our PMR (of course, GCA is very different) context.
I'm not a medic: but from wot I've learned here, that's why I strongly feel that a suitably administered Synacthen / ACTH test is appropriate (necessary?) in PMR Patients who struggle to reduce Preds below, say, 5 mgpd (?) and who still suffer with chronic DF despite the other symptoms (pain / stiffness) easing.
I think the bottom line on this topic is that, if we have some reliable clinical info about our adrenal function (+/-) and the possible causation, then at least we have some relative psychological direction about how to move forwards with Preds either way. And, of course, this can be helpful in the coping equation too.
That's my best take on things, for better or worse
Can you please clarify What are your symptoms too make you think you need anbasrenal yes? Thank you for the reply.
(..do you mean an Adrenal / Synacthen test..?). Persisting, chronic fatigue despite a current Pred dosage (2 mgpd) which controls pain and stiffness adequately, and also despite pacing physical activity.
Both. I am off prednisone now for 4 days and I still have pain/stiffness. Still don’t understand why.
From experience, it could be for a number of reasons. If you write a new post explaining the above I'm sure you'll get lots of replies. Include a little detail about your PMR (?) / Pred journey and it will help people to give informed opinions.
Or.. there are probably some relevant posts / answers on the forum (see 'Topics').
Thank you for your incredibly helpful & relevant message. It is really helping to build a picture. I have been keeping my Rheumatologist at arms length re. Methotrexate for at least 6 months but since changing to hydrocortisone my arthritic joints (mostly knee & base of the thumbs) have really fired up as she suggested it might. Also the dermatology consultant & nurse both strongly supported the idea though my psoriasis has been fairly controlled it hates the sun now! I am still fearful of introducing yet another drug. So glad you have a 95% chance of normal adrenal function that’s marvellous.
hi all, this is a very informative post, thank you, can anyone tell me the name of the blood test they do to check before the synachin test? Where you talk of 100-400 being low? Is it a fasting test? I've heard synachin tests and hydrocortisone can be hard to get near, any info more than welcome ... Ditto my thanks for the expertise on this forum, with much gratitude.
The 1st blood test was called the 9am Cortisol level test ( needs to be taken between 8-9am). Yes 100-400 is abnormally low, I was 61. So I am now being referred for the synacthen test which, I believe may kick start the adrenals but it seems unlikely.
I really hope you find a way forward, I remember reading on here somewhere else that someone was told they'd need to stay on Pred forever as their adrenals wouldn't kick in, but they did eventually - so don't give up hope. I really haven't a clue but wondering if trying to eat more adrenal friendly food (organic chicken bone broth, organic chicken, brocolli, good levels of protein (especially at breakfast), liver (or dried grassfed pesticide free liver capsules) might help support them aswell as the importance of getting at least 8-10 hours sleep going to bed before 10pm if possible & sleeping past 9am if possible and resting throughout the day where possible ... all stuff I've gleaned from the net, there's also a book by James Wilson called 'Adrenal Fatigue' which i wonder if it may be relevant? Only throwing ideas out there, can't say I've tried and tested but one would hope it might have some positive impact, with best wishes.
"Adrenal fatigue" is a "diagnosis" created by snake oil salespersons to sell supplements, books and diets - none of them have any medical or scientific basis. The only benefit is to the bank accounts of the said SOSPs
sorry, just wondered if was any truth in certain foods giving best nutrients for adrenals in same way calcium and D good for bones ... As I said not tried and tested ...
I did read that it is important to eat plenty of protein & drink at least 1.5 litres of water. Also avoid too much potassium in bananas, apricots etc.
Join the club! I have hit trouble at 7.5 over trying to taper (started at 60mg nearly 3 years ago for GCA). Stuck at this level for 10 months, m y Rheumatologist suspected adrenal insufficiency was causing the extreme DF, referred me to an endocrinologist who sent me for a Synacthen Test which showed zero adrenal function and who said very likely it would never function again - all very dispiriting - but come back for another test when I got to 5mg. Then referred to the head Rheumatologist at the BRI to possible talk about going onto Actemra, she said not suitable as agreed with the endocrinologists findings. Not sure what happens next.
Do you feel better on hydrocortisone?
Oh dear Sho-Sho that must have been a shock. Why was Actemra not suitable, I don’t know what it does? I think the PMR symptoms are quite low now & the 15mg hydro seem to cover them but I did find that cutting the 10mg tablet for 5 tricky & had a week of feeling achy & tired again when the 2nd prescription I collected was from a different manufacturer & rather small to cut. So it’s a fine line. However I am finding my arthritic joints are more painful on hydro.
I had troubles cutting 10’s also..even with a pill splitter, I could see they were never even, I had my Dr prescribe 5’s & 1’s...much better...although the 1’s don’t split very good either..
I also have the 2.5mgs uncoated so while you are above 2.5mg you can make your dose up accordingly. It reassures you the dose is accurate.
I’ve just had a box 5mgs that have crumbled as l popped them out, returning to the Pharmacist!
I know...I worry about the quality control on some of these pills we take..
It is quite difficult to tell at a dose of 7.5mg pred, the baseline would be low and there would have been no "training" beforehand going on to wake them up. The top experts recommend waiting until below 5mg and preferably lower before doing the synacthen test for more reliable results.
Being on Actemra may help reduce the pred dose - but at a low dose like 7.5mg it is a very big gun to use to reduce much further, biologics have some very serious potential side effects and the benefits must outweigh them.
Also using Actemra only helps reduce the pred - it won't make much difference to the return of the adrenal function if it is so poor.
Thank you I don’t suppose it will come up in my case then. As I was down to 2.5. Forewarned is forearmed!
My rheum would have said that 2.5 mg is not that much and would not not have recommended Actemra. My morning cortisol level was low -- the unit of measurement is different so it gets confusing. The endocrinologist was optimistic that my adrenal function would return.
I was taking 2 mg of prednisone but I held the dose for 48 hours before the morning cortisol level. Since I had an adequate cortisol level the endocrinologist said I could stop prednisone. She said if I didn't feel well I could restart prednisone at any time. I DON'T recommend doing that unless you talk to a doctor. I have been off prednisone for almost 2 weeks and I feel well. I have hydrocortisone available for stress dosing.
I asked about the synacthen test but was told it wouldn't be needed until my adrenals had a longer recovery period. Actemra only helps reduce the pred. By reducing the pred --- it gives the adrenals a chance to recover.
Good you had an adequate cortisol level hopefully you will recover the adrenals gradually. When you say you held the 2mg dose for 48 hours do you mean you held off taking it?
Yes...it is very important that you not take any corticosteroids before the test as you have learned. My last 2 mg dose of prednisone was 48 hours prior to the morning cortisol lab test. I was able to taper rapidly with Actemra ---7 to 2 mg in about 3 months.
Before the cortisol lab test, my endocrinologist commented that she didn't think 3 months would be enough time for my adrenals to recover. She said it would be okay to continue prednisone, however, she preferred hydrocortisone.
My lab value was 7.7 and less than 10 is considered low according to my endocrinologist. She explained that the absolute minimum is 6 where I would need to take a corticosteroid daily. At 7.7 she thought there was some adrenal function and unless I had symptoms of PMR or general malaise it would be reasonable to stop prednisone. I elected to stop it and have not taken any in 2 weeks.
Totally agree with 5mg really being the level when the adrenals should start waking up - but no one seems to know why I feel so exhausted and not very well having been at 7.5 for so long - They are not sure whether it is still the GCA hanging around be it at a v. Low level - perhaps it's just time. I was relieved that they didn't want to start Actemra.
Some people start to have problems with fatigue as early as 10mg - and I think it may be because the bioavilability is said by some experts to range from 50 to 90% depending on the person. If you are a 50% absorption person you are getting far less so low dose problems will manifest sooner.
Ummmm, what is DF? Thanks from a newbie
Update on Adrenal Suppression..... my Rheumatologist had suggested 5mg pred or 15mg hydrocortisone & referred me to an endocrinologist (appointment 7/8). After phone discussion with Gp 10 days ago we decided I should go back to the pred at 5mg. After about 7 days I noticed an increase in energy levels & my arthritic knee seemed less painful (nice) but then had a dip 2 days later. Saw GP yesterday who seemed keen to swop to hydrocortisone at 30mg split 20 morning 10 afternoon. Mmm. I really don’t know what to do. This is twice the dose the Rheumy suggested. I had said maybe I should increase the pred slightly & she seemed to panic! Having read up online about adrenal suppression/Addisons I am still not sure what’s best for the next few weeks before I see the endo. Advice from experienced heads, very welcome please!
I suggest you repost as a new thread so more people see the question. Often only people following a thread see late posts.
One lady on the forum has no adrenal function and was switched to HC but experienced unpleasant side effects so went back to pred with which, like me, she has few problems. It also depends to some extent whether your PMR is still active - pred does manage that better.
They are both corticosteroids so potentially have the same adverse effects. You do have to laugh at your GP panicking at you wanting to add a bit to the 5mg pred dose though - her suggested 30mg HC is equivalent to 7.5mg pred!
I would stay on the pred if you can manage until you see the endo. Keep the picture as simple as possible.
Thank you so much. I am minded to do that & try & get the endo appointment brought forward but that’s probably impossible! That’s interesting that the dose equalled 7.5, I was surprised she wanted me to double the dose the Rheumy recommended. Thank you for your interest.
Could I ask how you got on. Thx. Just diagnosed adrenaline insufficiency. Find scary. PMR eightvyrs. Thx so much
Hi, well my diagnosis of adrenal insufficiency was confirmed by the endocrinologist & he advised never to go below 3.5 mg of pred & maintenance dose of up to 5mg. We agreed on pred rather than HC as only one dose a day & my body is so used to pred after 7/8 years. Advised to double my dose if have an infection, surgery or accident as my body will not make the cortisol needed to cope. I have done that twice over the winter with chest infections. Have discovered there is no real need to then slowly taper afterwards.
During this pandemic I have sought advice from GP & Addisons Disease self help group website as it has info for adrenal insufficiency too. The advice to have an injection of 100 ml cortisol in the house & when travelling was new to me but my GP was very happy to supply 2 kits. Explanation on how to use it is on the website.....thank goodness! Make sure you have plenty of pred or HC in case you have to double your dose should you contract Covid.
Are you seeing a specialist?
Try not to panic, I did recently but now feel more equipped to cope. Anything else I can help with, let me know. Best wishes.