After having polymialgia for 3 years my rheumi at Christmas decided that the PMR had gone and no GCA was present. I tapered from 60mg to 5 mg quickly by reducing 2.5 mg every 2 weeks.
I started to feel bad fatigue from around 7:5 mg onwards and after being on 5mg for a few weeks I was given a synacthen test to check whether my adrenals could produce . Unfortunately I received a call from the hospital to say that the test had revealed that they are not working.
The hospital is going to arrange a virtual meeting to let me know how to manage my condition. Any idea what this maybe? It looks like I am going to have to wait a couple of months for this and meanwhile I am still very fatigued ( not in pain). I fall asleep regularly throughout the day even though I sleep all night. I have little energy to do anything.
Any advice would be greatly received.
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Jlml
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As mentioned in link, the Synacthen tests only shows if the adrenals are capable of working, not if they actually are…and do you know what reading was produced?
Until your appointment, I would probably stay at 5mg, and see if that gives them a chance to ‘catch up’ and
I've seen you post this link before and have never read it because I have secondary adrenaline sufficiency already and have learned quite a bit from my doctors and my own personal experiences. But today I read it. There is one thing that I have to disagree with in your list of symptoms. That being the darkening of the skin or hyperpigmentation. This actually only happens in people with Addison's which is primary adrenal insufficiency and it's an autoimmune disorder. For people suffering from secondary or even tertiary adrenaline efficiency this does not occur.
I’m not really surprised to be honest because 5mg is still high enough to cause suppression of the adrenal glands. This is the reason my endocrinologist doesn’t even consider a Synacthen test until the patient is on a maximum of 4mg in order to make any sort prediction of future function. My test at 4mg wasn’t special but they didn’t panic and said that I just had to reduce slowly to keep telling the body it had to make its own cortisol. They certainly were not predicting my future function based on my result at 4mg. I felt rubbish most of the time, but slowly I had more tolerance to any sort of activity and stress. My rheumatologists were all a bit clueless regards adrenal function and it was my GP being proactive who referred me in the first place.
I’m afraid fatigue is part of it which is so disappointing when one battles through the high doses and all the rest of it only to get to under 10mg and feel debatably worse for an unspecified amount of time. My various doctors said I’d be feeling almost normal under 10mg but they were referring to the direct Pred side effects, not low adrenal function secondary to taking Pred.
For me it took months and months with 7.5mg to 5mg being the absolute worst period. It’s like there is not enough of the artificial cortisol (Pred) in your system to deal with your day but still a bit too much for the adrenal glands to get the message that they need to work. There’s no way to short circuit this bit and there’s no treatment to get things going. Your adrenal glands, which involve the brain and feedback it responds to, should come back on line by being subjected to low levels of cortisol. How long this takes is individual and some people aren’t bothered much by it. I had to really cut down my activities in order to avoid collapse and very boring it was too, but my function returned with 1.5mg being so much better. Do have a read of DL’s link.
I have been told to stay on 5mg for life or until I have another test in 12 months time. They said I will need more for any extra stress, illness etc. I think this is what the virtual meeting is about.
Do you think I should be aiming for a lower dose eventually, once my body has recovered a bit.
Is this a rheumatologist or an endocrinologist saying your adrenals have given up? Did the test show no activity or low activity. Not working at all and not working well are not the same. I wouldn’t be too pessimistic yet. You dropped down to 5mg fairly quickly as in 2.5mg per 2 weeks it may well be there hasn’t been enough time for the adrenal function to start. Any sort of triggering isn’t usually until 7/8mg and even then that can still be a bit high. To put it into context I took at least 5 months to get from 10-5mg and then I slowed right down. You may indeed need to sit at 5mg for everything to catch up a bit.
It’s the endocrinologist. She said that they look for a marker of 24.20 and my highest reading was 23.90 (60 mins after they injected the stimulant). Those readings are from memory but basically it was a little under their base line.
Thank you for your help, I will sit at 5mg for a while and see what happens.
Definitely you must not taper until, as SnazzyD puts it, your adrenals have time to catch up. A slower taper might not have got you into this position, but that's water under the bridge now. I'm sure my adrenals started stirring at 7 mg, but it was about four months still before I reached 5 mg, and I didn't get the deathly fatigue until 4 mg, which was temporary. Think it lasted for about one summer, and I did continue to taper but in steps of half a mg every six weeks (the Dead Slow Nearly Stop taper).
I'm glad the PMR and GCA appear to have left the room. Best wishes!
Sorry - do I understand that you were on 60mg at Christmas? That is what it sounds to me as if you are saying. How long had you been on 60mg? What dose were you started on for PMR and at what point did GCA enter the equation?
The numbers you are quoting for the synacthen test don't make sense to me - a normal result is usually more like 420, but after a fast taper like that from a high dose and still being at 5mg I'm really not surprised it appears you have adrenal insufficiency.
I stopped taking pred last August after tapering down slowly over 3 years and then in Nov starting getting strange head pains. The doctor put me straight onto 60 mg for about 3 weeks and then I had a ct pet scan which came back normal.
I didn’t feel particularly well after coming off the pred.
The rheumatologist then asked me to come off steroids quickly . After the initial drop to 20mg and then at 2.5 mg every 2 weeks.
Sorry you are correct the usual reading for the syncathen test is 420 and my highest reading was 390.
Do you think there is a chance that my adrenals will kick in as the endo seems to think that I will need to increase the pred if I am under under stress and will this exhaustion get better over time x
Well they are obviously doing something and I think the endo is being a tad picky. You are on 5mg pred, they will still have a blunted response - you are not a normal Addison's patient, you have adrenal insufficiency secondary to long term pred, the outlook is different, If I remember rightly, SheffieldJane had a poor result at 5mg and it was much better at 3mg but then she got LVV/GCA and had to go higher on the pred. SnazzyD also had to get to a pretty low dose for better cortisol levels.
The only way to find out is to taper VERY slowly as Snazzy describes she did. Do you know what the basal cortisol level was - the first sample taken before the injection?
It is a very blunted response - but that is to be expected at a dose of 5mg and it is unlikely to improve until you are able to get to lower doses of pred and THAT is dependent on your PMR management. But they ARE working. The 3 years on pred for PMR will have sent the adrenals to sleep - if it were only the short time you were on high dose pred for the suspected GCA it wouldn't have been a problem for most but it is the long period at moderate doses that makes the system rusty. It is very likely to recover fully given time - about half of patients have no problems at all as long as they taper slowly, most of the rest get function back but have to go very slowly and be very patient.
How long on steroids is long enough to shut down adrenals? I am in sixth month of fairly high dose. Now at 20 mgs of medrol. Going down to 17.5 on Sunday. BTW Heading to Italy in November. Rome and Cortona with some side trips.
At high doses they are lulled into hibernation after about a month - even a 5 day course is enough to cause some suppression but it recovers quickly.
I read Cortina not Cortona first! Was going to say, let's meet since I can get there on the train/bus in just over an hour. But Tuscany is a bit far!!!
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