I feel rotten. Am on 6 mgs prednisolone— 4 in am, 2 at night. Bad fatigue esp in early afternoon, resulting in need to nap, shoulders and legs feel weak, no stamina. Losing weight, poor appetite. Besides PMR, have diabetes 2 and a pinched nerve in lower back that means right buttock pain. (getting mri 4/13.) that means very little exercise. Doc says all symptoms but butt are symptoms of low cortisol.
1. should I raise steroids to feel better? by how much for how long?
2. should I tough out crummy feeling?
3. should i look for non-PMR cause?
Husband trying to get me into Mayo.
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Merryfield
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6 mgs is low enough to experience the symptoms of Cortisol deficiency. It is better for you to take your dose altogether I think, especially with low cortisol symptoms. You ought to have this confirmed with a basal cortisol test and if indicated, a Synacthen test. You ought also to have an emergency Cortisol kit with a hydrocortisone injection in case of an emergency, adrenal crisis. All this was advice I received from my Endocrinologist. He preferred hydrocortisone for the treatment of cortisol deficiency but it is not great for PMR symptoms. The trouble with just raising your Pred dose, you will feel better but it just postpones the inevitable. I hope this gets sorted soon it sounds miserable.
Am wondering whether you have been prescribed an emergency hydrocortisone injection kit and if so, who prescribed it? I too have been having a rotten time (on top of RA, osteoporosis, Sjogren’s, hypothyroidism etc.), I am and have been on 5 mcg of prednisone for a very long time and the rheumatologist has simply told me I must keep this up for life now.
I have no energy whatsoever, feeling exhausted when I wake up, having to sleep nearly every afternoon and some days nearly all day. So I wonder whether these are symptoms of very low cortisol and am I close to experiencing an adrenal crisis? I truly feel absolutely dreadful. My head feels as though is it squeezed, and I feel very weak, eg. Cannot do anything at all. When I mentioned this to my useless GP she, as usual, uses the excuse that I have RA… (this is used for any other concern I raise) and is not bothered to investigate further. However, I am most concerned now because it is getting worse and I have an appointment to see the GP again next week so am determined she must sort this out as I feel I really can’t go on like this much longer. So I would appreciate any opinion/advice from you or anyone from the forum. Thank you.
Sorry I can’t help Merryfield but hope someone can help her too.
Sounds to me as if your various disorders are inadequately managed and are conspiring together to produce excessive autoimmune fatigue combined with your pred dose being not quite enough. Your GP is out of her depth - not unusually - so is taking the easy way out. Any one of those dx's would make you feel rubbish - all together is a nightmare in the making. Do you see your rheumatologist regularly? Do you have a decent relationship with them?
If you want wider ranging replies, I suggest you repost this as a separate new thread because only about 3 of us (SJ, DorsetLady and me) will see it here because of the way HU works.
PMRpro, thank you for reaching out. Yes all the autoimmune diseases are a nightmare. I have had issues since my late 30s and now at nearly 78 it is getting worse. The RA isn’t easily controlled anymore… was told there’s very little they can do now…except try yet another biologic drug. Am on Tocilizumab and at the end of May I will stop using this for 2 weeks and fury Adalimumab. Of course it will take time for the new drug to start working if it works…Am due to have a cataract operation on 24 April so wasn’t keen to start a new biologic until I have recovered from that. I have enough to cope with. I have a good relationship with the rheumatologist but haven’t seen him much recently although I have sent emails, have seen an RA nurse but they can’t quite answer all my questions. To be honest it has become a nightmare at my local hospital…,the waiting time to see anyone is incredible… (have to go privately to have my cataract operation because the waiting list is huge AND the hospital refused to do this operation because I already had one in the other eye over 20 years ago!!! This is just not acceptable. To be honest I don’t feel safe with my health in this country anymore.
Where would you suggest I write a new post?
I must admit I feel very scared because of the odd debilitating symptoms I have. Can’t function and I live alone… family living quite a long distance from me.
On the forum - where else? At the top of the page somewhere is a blue box with Write and a pen icon. Click on that and a new page comes up. There is a box for a title and second box below it to write your post - the title should reflect the subject, not something not relevant. Then there is another box saying Post which functions like the Reply box. Just copy and paste what you said here.
Yes she meant start a new post rather than ask a question in an existing thread.. because only the original poster, PMRpro and I are guaranteed to read it…
The "more widely" was so that other members of this forum would see it as opposed to just the person who wrote this post, DL and me. Comments within a thread won't be seen by many unless they actively followed the thread when they first saw it as DL and I do - by clicking on the Save button under the post - and very few do so never get a notification of new comments of questions.
I have an Endocrinologist. Once I was on his books my Adrenal function was taken very seriously. The first step was a basal cortisol test that I requested from the GP. Our local hospital does them. If the test is unsatisfactory I found myself with an Endocrinologist and all the practical help and advice I needed. I am currently awaiting a further appointment with him as advised now I have got down to 5 mgs again. I am sorry you are suffering horribly. It helps having an interested expert specialist on your case. I have a very good Rheumatologist who takes care of my PMR/GCA and LVV and is aware that I now see an Endocrinologist. The have briefed each other at least once.
Thank you for replying. It seems you have a much better team of medical professionals in your area than in mine. Whenever I suggested consultants of different specialism communicate with each others it falls on deaf ears… it’s always a battle., They have told me they haven’t got time… so each working blindly in their corner without looking at the full picture. It is difficult when a patient has multiple morbidities but most important for doctors to be aware and act responsibly.
When I last mentioned to my GP I was concerned about my cortisol levels (low)…:she just shrugged her shoulders saying it will be because you have been on prednisone for a long time and now for ever… She’s very good at dismissing everything and/or blaming everything on the RA and my being old (77 till May!)
However I still would like a test … so am seeing her next week. I am tired of always having to fight with doctors who do not do their jobs. Very hard when feeling so unwell. So how do I persuade her I need such tests? You seem to be able to get doctors listening to you… at least most of the time. Patients should not have to fight to get help. End of rant.
Will write another post as suggested by DL and PMRpro over the weekend as have more appointments today.
On 5mg pred a basal cortisol test is likely just to confirm what your GO is saying. On 5mg pred, you probably aren't making any and it isn't surprising. What is questionable is whether your current dose is adequate for your needs. I shouldn't be saying this really - but you COULD try taking a bit higher dose and see if you feel better on it. If you did, you could demand a referral to an endocrinologist to adjust the management of the adrenal insufficiency you undoubtedly have. Some people need more than 5mg pred - 7mg is often used. An endo might consider that adding HC might help you with boosts in the afternoon. And that is something that is probably worth going for privately if your GP won't comply with your request - which is your right I think now in the UK.
Thanks… Yes, I somehow feel that I suffer from adrenal insufficiency.. Isww my GP on Wednesday nest week and will tell her I fear having an adrenal crisis because of all my new symptoms (which have been going on for quite a while now and although mentioned nearly each time I see her, are ignored). Perhaps I should put thar in a letter which would then be added to my medical records.
So will see what reaction if any I get this time, making her aware I might be at risk of suffering an adrenal crisis. Then will try to up the prednisone to 7 mcg/day… but I do have osteoporosis… and I can’t exercise anymore as I used to… Catch 22 situation of course.
To be honest, I have used private consultations quite often in trying to get resolutions… it’s extortionate in the UK … and it’s amazing to be told that a consultant can’t see you on the NHS for a very long time but if going privately you can be see by the end of the week! Money grabbing… everywhere. What happens to people who cannot afford to be seen privately and yet need help?
Indeed, last month made a private appointment to see my usual NHS ophthalmologist (could see him within 3 days!) without having to ask a reference from the GP. In fact if it’s private it has nothing to do with the GP. However I decided to let her know, out of courtesy.
It depends on the person - I know there are some rheumies where you are now waiting 3 or 4 weeks even privately. But it isn't the doctors to blame - the number of clinic appointments in the NHS hospitals is limited by the timetables, and accommodation for OP clinics. There was a long period during Covid when they were even more limited. I know Rod Hughes was really annoyed because he wanted to see more patients and knew he could do it safely but the hospital authorities wouldn't extend the numbers he was allowed to see. Now they are playing catch-up.
The others get sicker and sicker - and end up as emergencies in the ED. And then they take precedence over the elective stuff and their waiting times get even longer. But the doctors strike is being resolved - a start.
Yes of course… The system seems to be working against the doctors hence the patients. Still, so frustrating and concerning. Some patients,too many, still don’t make it to A&E… in 2024. Grim.
Well, let’s hope the doctors will not request more money in 12 months… not sure about that. Fingers crossed.
Depends how you look at it doesn't it? After over 10 years with effectively no payrise you can hardly blame them. Or for heading to other pastures with better weather and better pay. Train drivers and MPs seem to been able to keep up/
Of course… but there must be a limit looking at the economy of the country. Do they all want to escape from their country, leaving families, especially ageing parents, behind? Is money the only reason they wanted to become doctors? It feels like that at times. However I will say I have met a few fantastic, dedicated doctors, not many but I have tremendous respect for them.
Teachers too play an important role in society… they often can change the lives of many children, especially from deprived backgrounds, yet they’re are paid a pittance… expected to do absolutely everything on top of teaching…teaching is incidental… safe guarding, taking kids to the loo because their parents have not bothered to train them properly, the parents are often obnoxious and rude, expecting teachers to do absolutely everything for their children when they don’t do anything themselves… in turn some children are rude to the teachers, throw things at them… Teachers work extremely long hours… yet aren’t rewarded accordingly. Many have left the profession and more will leave. Many schools are now understaffed, so high workload for those who are teaching , skeleton staffing. They burn out without the benefit of a fairly high salary. I don’t begrudge the doctors’ salary but they are not the only people who benefit society at large, having a profound impact on people’s lives. That’s how I see it. But my opinions will not change the situation we all find ourselves in. …
It isn't just money - their QOL is appalling. Many had the goalposts moved in the middle of training, after getting married sometimes and one was sent to one hospital the other hundreds of miles away. NHS staff are attacked and abused too. And actually - after 6 years racking up a massive debt, their starting salary is not exactly princely. If Bank of Mum and Dad wasn't able to cough up, many 24 year olds start work with an £80-100K mortgage and no chance to settle anywhere. And the responsibility of having people's lives in their hands is always present.
It is never easy when one embarks in a profession, not just for doctors. Of course it is stressful for all concerned. Naturally having ‘patients’ lives in their hands’ can be overwhelming at times, but they knew this would be part and parcel of the professional pathway they chose. Tough indeed but that’s what the profession is about. They could have chosen another direction.
There are many students who end up with huge debts round their necks… and although working their socks off are repaying their students fees (once they reach a certain salary) then higher taxes of course,,, high rent if one works in London especially, as is the case for one of my grandsons… Not many were lucky enough to benefit from the bank of mum and dad am afraid. Those who do are the lucky ones.
Not many young people post graduation, and working in a demanding career, climbing the professional ladder (often having studied for Masters part-time in the evenings and at weekends for 2 years while holding a work position whereby they are very much accountable plus getting more students debts) can afford to even save up, never mind having a mortgage… and paying ridiculous rent money. I should know.
Many people work in demanding careers (or jobs) and carry on with their education while working in order to achieve their ambitions. My grandson has been headhunted a few times by banks… they offered him an insane salary… he was so tempted (had he done so he would be able to afford a mortgage now , escaping the greedy landlords’ clutches) but turned the offers down as he prefers doing something useful for society… can’t disclose what he does.
Of course wouldn’t it be wonderful if everyone could be really and justly rewarded for the work they do, in the end everyone is useful to society.
I think that I am just lucky in my Rheumatologist. My GPs are just good at batting me off to be honest. My Endo is enthusiastic about his specialism but this has caused conflicting advice in the past and I went with my Rheumatologist and the illness. She now agrees that my Adrenal function needs more attention. The Endo wanted me to return when I got to 5 mgs - possibly because of my poor Synacthen test results before my GCA diagnosis and I was trying to taper with just a PMR diagnosis.
Thank you again. It does help to have consultants/doctors who really listen to patients and try to understand what the problem (s) is/ are… even though it’s not always easy when faced with multiple health issues. However, feeling abandoned to one’s fate when feeling so unwell is most scary and stressful… one feels a bit lost and so out of control. Yet I am a fighter… had to be for a very long time. At the moment I am running out of energy though… Won’t give up but I need some support from doctors.
It is the nature of what we have got that makes it difficult. There is no magic wand they can wave and our age group picks up co-morbidities not least from age and drug side effects. We do have to research and fight for ourselves. Extra effort is needed to get a semblance of proper fitness - exercise, good diet, keep interested etc. Hard when you have constant symptoms, fatigue and malaise, and a health service that is on its knees. We have our group though and the tireless, helpful people on it thankfully.
I'm afraid it takes time for the adrenals to wake up after they go into retirement with the pred. 6mgs usually enough to cover for the lost adrenal function but you are at the cusp of entering the zone where you experience the effects of low cortisol...unfortunately you just have to survive it in order to give your adrenals a chance to decided to funciton again. I really hit the deathly fatigue at 3-4 mg and 18 months later and at only1 mg the adrenals are better but still let me down on many days...it is a long slow and difficult process...but if you up the pred then you never give the adrenals a chance to revive and take over.
You can't really test adrenal function until you are on a lower dose,,,3-4mg, I think.
With the diabetes, have you tried a very very low carb diet, It lifted me out of prediabetes when first on high dose of steroids.
BUT if you feel lousy always get your doc to check for other causes...too easy to assume it is PMR or pred.
Could easily be low cortisol. I found 7/8mg to 5mg was the worst because the Pred was not high enough to do the job for normal everyday function but still high enough to keep the adrenal axis a bit dozy. I found myself unable to wake in the morning and needing proper sleeps in the afternoon. In between I felt crummy as heck. As has been said if you raise the Pred to feel better, you are just putting off this awful phase. Your adrenal axis needs to keep being shown levels of cortisol/Pred that are too low to jolt it into action. However, it is a fine line between doing that and making yourself very ill. As a result I lived like a shadow for months so as not to cause adrenal crisis.
Saying that, it might be worth ruling out, if you haven’t already done so, other causes or things that might be contributing to a worse experience than it could be. Easy starting places are blood sugar, thyroid, etc, or even large vessel inflammation. However, if it were me, I would experiment with 2-4mg for a couple of days as a diagnostic test to see if all the clouds lift. If they do, it is very likely to be low cortisol.
A Synacthen test or basal cortisol test are likely to confirm your low cortisol if that is what it is because the dose is still high enough to cause suppression. My Endo refused to do them above 4mg because the result is invariably low and not useful as a pointer to future function. My S test at 4mg was still a bit sad but by 1.5mg it was much better.
When you say you take some Pred at night, when do you mean? If it is much before 2am you may be inadvertently suppressing the system yourself. The body naturally puts out cortisol for the morning in response to spotting a low level around midnight, more after than before. If you’ve popped a Pred before bed, the brain will think it’s fine for Pred and not bother turning the lights on in the cortisol factory.
I am finding the same, I think, Snazzy. I did a slow taper from 7 to 6.5mg and have been at 6.5mg now for nearly three weeks. However, since the clocks went forward and we have had darker mornings I have been very sluggish with aching neck and shoulders (although I can still lift arms etc.) I am falling asleep in the afternoons (never known before) and can't seem to get myself going. I have flared three times between 5.5 and 7mg so assume this is my danger spot. I shall not increase pred unless absolutely necessary and try to see my way through it - doesn't it make you feel b. awful, though?
Merryfield, thanks for asking this question - just what I was looking for as well!! I hope things ease for you soon.
I fear you have to tough it out to get your cortisol production up and walking if not running. Like Snazzy I suggest you stop the night time pred unless you are taking it after about11.30 - prednisone takes 2 hours to get into the system fully so you needn't wait until well after midnight which is the other alternative and why 2am is recommended.
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