I have been struggling to get down to 3mg pred for about a year. Sometimes I manage it but sometimes I feel I need to go up to 4 or 5 and then try again. I suspect PMR isn't the problem. Blood tests don't show any inflammation and the usual muscle aches are quite minimal and often absent. At times, (not often) on days when I overdo it or are particularly stressful, I experience a kind of attack when I feel absolutely dreadful but can't explain why. I become very weak and all I can do is lie down very still until it passes. It feels like I'm going to die. It's usually at night and I usually take a couple more mgs pred the next morning and am ok. I'm also almost always fatigued in the morning and have to force myself to get up and get going but ok after a shower and breakfast. Some days I'm very lethargic and other days I can do loads. I've seen a rheumatologist recently who suspected adrenal insufficiency and has referred me to an endocrinologist for a possible short synacthen test in St Richard's Chichester but there's a 27 week wait. I don't know whether to ask about going private or whether I'm just having panic attacks and leave it.
I've been on pred since 2011 apart from a few months a few years ago when I managed to get off.
I'd be grateful for anyone's advice and/or opinion.
PS my hair is getting very thin too.
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Skodadet
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That’s exactly how adrenal insufficiency took me. It was often dependent on what I was doing but for months I had a background feeling that you describe. I dropped by only 0.5mg and sometimes half of that and introduced it slowly over weeks. I couldn’t cope with a single step drop. To avoid these crises and keeping going backwards I pared down my life hugely until my body was ready to do more. It was frustrating, boring and impractical but had to be done to avoid tipping my body into a state where it couldn’t cope, yet keep the Pred dose low enough to trigger my body into always being able produce cortisol when it was needed.
This does sound like classic adrenaline insufficiency. The doomy feelings - everything. It could just mean that your adrenals are struggling to get going, because you get those periods of feeling good which I remember from my own experience. 27 weeks is an awfully long time to wait for guidance from an Endocrinologist. I was able to have the test prior to seeing the Endocrinologist. He took me very seriously indeed. See if you can get the test brought forward or maybe consider the emergency route. The panicky feelings are quite logical really, your body knows that all isn’t well. It is very unpleasant though.
If a plain cortisol test taken at 9am is under 100 nmol/L then it indicates that you do have adrenal insufficiency - it is most meaningful if you didn't take pred in the 24 hours before the blood sample is taken. Take the day's dose as soon as the blood has been taken.
If it is above 450 nmol/L then you don't have adrenal insufficiency - there is enough cortisol available to function. You might still have problems in an emergency situation though - long term steroid users still need extra care for surgery or illness.
If it is inbetween then a synacthen test should be arranged to get more clarity. It may be lower than 450 but will still improve over time - but the lower it is the longer it may take and you need to know the adrenals CAN recover given time. If they can't produce cortisol at all for some reason then they need to think about where to next.
That gives you a basis to consider whether to try to get an emergency appointment via the NHS or what you do next.
When I got to about 5mg I used to get episodes when my husband said I was looked completely ‘out of it’. I would need to find somewhere to sit down and have a cup of tea or something. It usually passed quite quickly but I learned not to do too much in the mornings, best wishes
I have episodes of this (even now at 12.5mg) l have to sit down before l fall down & l usually have a Milky Coffee & some Chocolate 🍫 probably not ideal as it spikes my blood sugar however it often helps me through. I’ve slumped in many odd places 😉
Hi Skodajet, it does sound like adrenal insufficiency. I can empathise with you. If you have no PMR symptoms, you need to just rest and pace yourself. I managed to get a synacthen test in a few weeks ago. Let us know how you get on, fingers crossed for you. X
There are some excellent replies here - so l’ve added it to FAQ - Under Adrenal Insufficiency - Members Experiences SnazzyD & SheffieldJane if you want to edit your posts with more information if you think it’d be helpful but really excellent replies. Thanks 🙏🏼
Hello I have just read your experience on adrenal fatigue. This is exactly the experience I am going through .and I agree, sometimes it feels like a am being seriously ill. I have been on pred for 15 yrs starting at 15 mgs and have yo-yo up and down from 2 mgs to 6 mgs for past 8 yrs trying to make myself feel better . I was wondering how things have gone on since your post. Did you have blood tests , and get any outcome . Hope your feeling better. Many thanks Gill from Kent uk
Hello. I'm sorry this is happening to you too. My GP has organised lots of tests to rule out other things.... haematology, cardiac.. I had a baseline cortisol test which was in the 200s suggesting a short synacthen test might be useful, and the doc has been in contact with the endocrinologist who asked for pituitary gland blood tests...all normal. But I'm still waiting for an appointment with an endocrinologist and hopefully a short synacthen test but nothing so far. I was referred months ago. I have given up struggling on 3mg, and 3.5 mg as I feel so unwell there with all sorts of other things happening...herpes, migraines, bleeding gums, ulcers, etc. Now I'm on 4mg and staying there, feeling much better and more stable. Hope you feel better soon too.
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