Adrenal suppression

[tangocharlie]

Just found out one of the reasons I'm struggling to get the Pred dose below 7.5 having been on steroids 3 and a half years. Synacthen test shows adrenal suppression. Is there a way over this? I've been started on MTx and am hoping once that kicks in I might be able to taper the steroids very very slowly. I'm also puzzled rheumy says PMR has gone (or was never there, could be arthritis after all) yet CRP still elevated. Anyone bounced back from this and got their adrenal glands restarted? How long does it take? Advice much appreciated, thank you.

[Runrig01]

Hi Tangocharlie, your story is very similar to mine. I have also been on steroids over 3yrs for pmr, then GCA, and have struggled to get below 9mgs. I have managed using the dead slow nearly stop approach. I did get to 7mgs and as well as pains returning I also suffered extreme fatigue and nausea. I have not had a Synacthen test, but my Rheumy is confident I do have adrenal suppression. When I asked how long the tiredness and nausea would last, she told me up to a year. I have not had the test done as she said it would not change her plan at the moment. I have taken Azathioprine for 2 yrs, which helps my GCA symptoms. I also have steroid myopathy so I am trying to push on and reduce steroid, in the hope muscle weakness improves. I reduced to 6.5mgs a few days ago, so keeping fingers crossed. The good news is that the tiredness and nausea are much less. I think that may because I'm off sick and resting. It will be interesting how I cope on return to work.

Why has your Rheumy suddenly decided the diagnosis is incorrect? My Rheumy insists that the adrenal suppression will resolve, but slow and steady wins the race. Good luck with the MTX helping you reduce. 😃 Runrig x

[Gosingen in reply to Runrig01]

This response makes for interesting reading. Not heard of the Synachten test, but will ask my rheumy next check up in April as it would seem I am suffering from adrenal suppression too. I'm over 6 years taking pred for PMR/GCA and have never got below 8mg. Up and down and recently I've been having nausea as well apart from the dreaded fatigue. MTX didn't work for me, nor did Hydroxychloroquine, and I think my rheumy will advise Azathioprine next (dreading it) but if it is to improve fatigue, nausea and most important getting below 5mg pred - then that would be fantastic. How do you get on with Azathioprine. The muscle weakness is trying as well. Caused my fall in bath and I now have grade 1 spondylolisthesis because of it, which makes exercising/walking difficult.

Thanks for your reply to tangocharlie and wish you the best. Gosingen

[PMRpro Ambassador in reply to Gosingen]

Read my other post too - AZA can't/won't change the aspect of adrenal insufficiency and reducing pred to below 5mg if you DO have adrenal insufficiency/failure. Long term management of adrenal insufficiency requires a minimum dose of pred or hydrocortisone as supplementation which may be anything from 5 to 10mg. Polkadotcom is on 5mg, I know others on a higher dose.

[Runrig01 in reply to Gosingen]

I get on fine with the Azathioprine, I haven't had any side effects. However I seem to have a strong stomach, as rarely have side effects from anything I take. I'm not sure Aza will help with the fatigue, I've still suffered terribly when I get to 7.5mg or less. I think the reason I'm coping at the moment is rest due to injuring 3 ligaments in foot 3 weeks ago. This morning 4 days into reduction, hips, shoulder blades, hands and feet ache terribly. Will see how morning goes after taking steroids. Some Rheumys will tell you you can't have a Synacthen test while on steroids, this is untrue. Results just need to be interpreted more carefully. Take care, it's an evil illness this and it will go when it's ready x

[PMRpro Ambassador]

I'm assuming it was interpreted correctly - because at 7.5mg there will almost certainly be adrenal suppression and you have to look at the results differently to assess whether the adrenals are CAPABLE of producing cortisol again as the dose of pred falls - which is the important point.

IF it really is poor adrenal function then you may NEVER reduce fully to zero pred, whether you are put onto MTX or any other "steroid sparing" drug or not. It is 2 different things. If your adrenal function isn't good enough to do the job then you require supplementation as corticosteroids are essential to life - hence the reason to watch out for the problem. Supplementation means taking a tablet - just like when your thyroid is not producing enough thyroxine. Using MTX or AZA only makes the pred more effective in combating the inflammation - possibly, it doesn't help everyone. It cannot replace the cortisol or make the pred work better in the adrenal aspect of using it.

Most people do manage to get off pred and the adrenal function returns. The local Head of Medicine told me a couple of weeks ago that if you reduce the last 7mg slowly enough it almost always works - but some people need to reduce VERY slowly, 1/2mg at a time and remaining at each dose for a couple of months on the way down. One top PMR doctor in the UK likes to keep his patients at 5mg for up to 9 months before continuing the reduction.

Endocrinologists (the real specialists when it comes to adrenal function) often suggest changing the corticosteroid from pred (a medium acting steroid) to hydroxycortisone (a short acting steroid) and believe this may help the re-establishment of adrenal function. Both of them work the same for PMR, just you may need 2 doses of the hydroxycortisone a day. There are a couple of ladies on the forums who are on it because of problems with pred.

I'm sure polkadotcom won't mind me saying she is on 5mg pred for life - because of lack of adrenal function. I also need to say it isn't entirely the adrenal gland function to blame - it can be due to other factors in the very complex feedback system that governs production of cortisol.

[Sheilamac in reply to PMRpro]

Thank you Eileen! That was very helpful to me too. I reckon I have hit adrenal insufficiency at about 5.75mg, so my plan now is to slow my reduction even more. I have a lot on this month with moving house at beginning of April and the good stress from our publisher agreeing we can write another book. So annoying! I've been trying to get him to agree to this for years and I was soooo happy but then after the meeting I felt really ill! The nausea was dreadful, the headache and the wall of fatigue. Couldn't sleep for feeling sick though!... Huge improvement when my Prednisolone kicked in. Said it all for me. I'm taking it in the evening again, trying to influence the fatigue, the blurry eyesight, stupid brain and my insomnia. I know it sounds counter intuitive but I've been sleeping better since...

I'm going to stay on this dose until I get settled into the new house. Moving to Tayport btw Eileen. My daughter has just moved there and we need to be nearer each other.

Oh I am so sick of being 'ill'.

I have accepted it and the Pred and in doing so have largely felt better mentally. I also know that in having it for 2.5 years and on Pred for 1.75 years and having a PMR pain free time since Pred, I've less to complain about than most on here. But sometimes I just have a little wobble....

Hey Ho, onwards and upwards!

[PMRpro Ambassador in reply to Sheilamac]

I'm fairly sure I did at 3.5mg - 4mg was not too bad, 3.5mg was sleep time! But it's all academic now - at 15mg...

I shall look forward to a little trip to Tayport when we make it over... Or Blair... Or somewhere...

[m-duke123]

I was on pred for four and half years for GCA was put on MTx to get of the pred. Been of both for about three years my adrenal have not kicked in and I am now on Hydrocortisone I have to go for Synacthen test next week, but I have to come of the hydrocortisone for two days before I go.

think they are going to be good days.

[hwigston]

I have been on Pred for 6 years and have adrenal insufficiency. I am seen by an Endocrinologist and not a rhuemy now. As PMRPro has stated I may have to stay on 5 mg for ever the endo told me. However I have been having acupuncture for over 12 months and I feel so much better. I am back at the gym 3 days a week and cycling. Before having acupuncture I was falling asleep as soon as I sat down. The fatigue was horrendous. I felt as though I had been drugged.

[tangocharlie]

Thanks all for your help. It's obviously more complicated than I thought. I'm under the care of the wonderful Dr Mackie and got the results by letter so will ask her more next visit but that's over a month away. She thinks PMR has gone (if it ever was there, no way of knowing for sure) as no trace on the PET scan but is puzzled that the inflammation readings still high. Suspects some kind of spondyloarthropathy eg psoriatic arthritis even though I have never had any psoriasis or skin problems. Maybe there's a chance the adrenals might just kick back in at some point? Can but hope. I hope to reduce preds very very slowly at some point but have tried the dead slow method a few times and it hasn't worked. Maybe next time with the mtx to help.

I now have a strange combination of extreme tiredness/fatigue yet also struggle to get to sleep and wake every few hours and am really struggling to cope as I'm self-employed adn can't be sick. GP gave me one week of sleeping tablets after I pleaded (zopiclone) which helped a bit but refuses to give me any more. Yet others on here say they've taken it for years. I've only been on the methotrxate 2 days (took the first dose on Sunday) but already feeling nauseous and dizzy and shortage of breath when walking which is what happens when I've tried in the past to reduce the preds. I'm still taking 7.5 mg pred and won't try and change anything yet until Dr M says it's OK. I'll ask her if the next step is to see an endocrinoligist.

I'm also wondering that in view of my age, I was only 51, four years ago when diagnosed with PMR and put on steroids, that maybe I should have been referred to a rheumy much earlier. It was my suggestion to my GP last year after struggling so hard to reduce the steroids and hearing about the synacthen test on here. If I hadn't suggested it I would have been left languishing on steroids for ever as his advice when ever I had problems was to up the dose! The first rheumy was a disaster (Dr Pease) and just sent me away to get off the steroids, ignore the pain and take painkillers if need be. Luckily instead, again thanks to advice from people on here, I insisted on seeing another rheumy. Had I done what he said I'd be in serious trouble now if the underlying problem was adrenal suppression and I just came of the pred regardless. Luckily I'm assertive enough to fight my corner and able to find out more about my condition and options, but many aren't. So thanks to all of you on here and at PMRGCAUK for giving me the info and support I needed or I'd be in an even worse position than I am now. Thanks, TC