Following my developing myositis, I switched up from 4mg pred, first to 12mg and then to 24mg methyl pred daily. The 3 weeks on 12mg seemed to have little impact, but a further week on 24mg has been a revelation.
The myositis symptoms are little changed but for practically the first time in 2 years, I am alert and energetic. From getting up in the morning to - reluctantly - returning to bed in the evening, I have a new life.
This suggests that secondary adrenal insufficiency plus unsuitable steroid dosing has been a significant factor in the last 2 years of misery - including my enforced retirement from work. Worryingly, despite being seen in casualty three times, and referrals to neurology, sleep specialists, physiotherapy, occupational therapy and finally, endocrinology, not a single clinician suggested this possibility. The one-off, afternoon blood level of cortisol showed a normal level, they said, so that could not explain my symptoms. It was only after I had persisted, and paid to do a home test for saliva cortisol that things changed. The test showed that my morning levels were almost undetectable. A synacthen test confirmed secondary adrenal suppression, but even then, the endocrinologist suggested increasing my daily pred by no more than one milligram. It didn't help.
It's taken this myositis crisis to prompt us to see what might happen if we completely eliminated inadequate steroids as a possible factor. Turns out that on 24mg, not only has much of my fatigue lifted, but the daily episodes of sweating, shaking, muscle rigidity and nausea have almost vanished.
So my lesson this time is never to underestimate secondary adrenal suppression and steroid dosing as a cause of inexplicable symptoms - even if your medics dismiss it.
What happens when it comes to reducing this time round is going to be a whole other story - but for now, I'm happy enough.
SPOILER ALERT: Things were to change sooner than I had hoped....
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This is such great news Mike. Thanks for keeping us updated and informed.
I’m not that clued up on the distinctions between Methyl Pred and Pred and don’t know enough about cortisol levels except mine have been checked a couple of times and all was fine - but like you this wasn’t in the morning - it was endo request in hospital bloods clinic mid afternoon. All good of course!
My Addison’s/ Sjögren’s/ PA friend has finally become proactive, researched and been very assertive with the endo. She demanded, as someone with very severe and longstanding Addison’s, to try a slow release version of Hydrocortisone or Methyl Pred (sorry not sure which?) which hasn’t yet been licenced in Scotland - but is having very good press from those who have tried it. She got her way (she was a primary school head teacher until she was forced to take early retirement on grounds of ill health - so is good at sorting any lazy doctors out!) and has just picked it up from the hospital.
I think there is clearly so much overlap in autoimmunity for many of us that the case for much more multidisciplinary team work and listening hard to the person affected is paramount. And yet increasingly, as your case shows, the opposite seems to be the NHS’s default position.
I woke today with the latest google news trending flashing on my iPhone screen from the Telegraph this time “I’ll celebrate the NHS when it treats us better” - an article expressing the view that statistically the NHS is failing people with many illnesses all the time compared to elsewhere in the world.
Anyway I’m hoping like crazy that your present state of improvement continues forever. Xx
My recent contact with the world of adrenal insufficiency has been a real eye-opener. Things there seem to operate in a completely different way to the outside world!
For example, it is clear that a single afternoon cortisol blood level is almost useless from a diagnostic point of view, and yet this is commonly done. Both when I was an inpatient, and at my GP, my cortisol blood was drawn in the late afternoon. At this time of day, normal cortisol ranges are low anyway, so it is very difficult to detect an abnormally low level. Much more telling is what your cortisol does overnight - is it ramping up during the small hours and peaking around waking? If not, then you are going to struggle all day, even if you have 'within range' levels later. But of course, no GP is going to open up at 3am for you to get a useful blood sample drawn! Secondly, even the basic synacthen test provides very limited info. Third, both my GP and my endo looked askance at the possibility of managing concurrent adrenal insufficiency and auto-immune disease with a mix of pred (to maintain a strong baseline level of anti-inflammatory effect) and hydrocortisone (to mimic short term 'normal cortisol' secretion). Yet this appears common amongst people in the Addisons/AI community.
My feeling is that for people with complex, overlapping, chronic disease conditions like ours, the approach of offering 'minimum testing and intervention until it's clearly demonstrated that something else is needed' is wrong. It's a wise approach in simple conditions, because our bodies are so good at healing themselves. But for us, it means that so many end up struggling on with unexplained issues because they never quite meet the threshold for the next level of testing or intervention. x
Mike my interest in your case is quite selfish although I do really care too because I have come to regard you as a good online friend here. But I also feel intrigued by your story and experiences in relation to my own.
I too am on a constant Miss Marple-style quest to find the reason for my fatigue and systemic inflammation levels. I think it’s my resting fatigue in arms and legs that plagues me most of all my symptoms because it’s so hard to explain. I know that I’m presumed to have small fibre neuropathy so I duly found a Facebook community for SFN sufferers around the globe. Same for Burning Mouth Syndrome and Trigeminal Neuralgia and Mast Cell Disorders. But again and again I find people offering emotional support and prayers (most of these communities are US led) but I’m forced back into this shaggy dog story because there are so many with Sjögren’s, SFN, TN etc etc who know what is wrong but not why or how best to treat it. And really, until we get to the truth of “why is this happening to me?” - it seems to me that all treatments are going to be hit and miss. This is the difference between our diseases and diabetes or cancer or cardiovascular disease I suppose. They are rare and therefore desperately under resourced and under researched and so very underestimated.
And my biggest question - which is one I feel you and other here are so helpful over - is why aren’t our doctors nurturing and harnessing our expertise as those with lived experience? Particularly in a university hospital like mine. I feel so discouraged that I’m just a patient stat not an individual who can and would like to contribute more to the learning process. One door opens only for another key one to close. It’s like being Alice permanently stuck down the rabbit hole.
But of course I’m delighted for you that you may have surfaced for air - at least for a while. X
Please don't apologise for having a personal interest - don't we all? As you say, there is a huge gap between the severity/personal significance of our conditions and the resources dedicated to helping them. So many of us - and you are a remarkable example - end up having to do our own routefinding. I'm now determined to follow my neighbour's example and use medics primarily as people who can facilitate access to certain tests and treatments rather than look to them for answers x
So glad to hear the fog has cleared - must be very exciting to feel well-ish for once. I bet it'll give you a bit more energy to fight for what else you need too.
I completely agree with you about AI. Since I started factoring it in I've managed my conditions a lot better. I've been reassured on an Addy's forum that if you manage it properly it might be possible to live a relatively normal life.
I have a question for you though. My endo is talking about mixing Pred with HC, but won't prescribe HC until I get down to 7.5mg Pred. This seems like flawed logic to me. Even though I am reducing slowly (helped I think by the LDN) there's every chance small updosing with HC during the day would allow me to reduce the morning Pred dose more effectively. Would you concur? Because it seems they've allowed a higher dose for you.
The last time I saw my endo was after I had been diagnosed with AI, but before the diagnosis of myositis. His advice was that because the synacthen test showed some activity in my adrenals (although i 'failed' the test), I should not decrease my pred dose below 4mg, OR INCREASE IT BEYOND 5mg. When this did no good, I persuaded him to switch me to 20mg hydrocortisone daily INSTEAD of the pred.
This was no better, and I now think that a marginal increase may have had the paradoxical effect of suppressing more of my natural output than was added - or perhaps the change in dose timing upset the settled (albeit inadequate) routine my body had gotten into. I am quite certain that different individuals metabolise steroids differently and that being allowed to experiment with dose amounts, mixes and timings is - especially when there is significant AI - essential to finding a live-able regime. There is a useful background article here cahisus.co.uk/pdf/GETTING%2...
Anyway, my current 24mg methyl pred dose has been prescribed solely in order to reduce my myositis symptoms - diagnosed only after I had seen the endo. The plan will be to reduce again when the myositis is fully controlled.
Thanks to my earlier scripts, though, I now have a surplus supply of methyl pred, pred and hydrocortisone. Consequently, I am trying lots of different combinations and timings to see if I can work out what kind of dosing regime best suits. No more bowing and scraping to medics who have amply demonstrated that they know far less about what is going on than I do! My early sense is that I seem to metabolise the hydro very quickly, so I would perhaps be seeing it as something to take in small doses at times when short-term arousal is needed, but without completely swamping any of the early morning natural production that might be hanging on in there. By breakfast time, I'm unlikely to be producing a lot of natural cortisol anyway, so that when the main hit of mp goes in, to initiate and sustain the main anti-inflammatory response throughout the day. This was the pattern that worked well today - 5mg hydro on waking (I feel like DEATH normally) - 20mg mp at 10.30 am - 4mg mp at 5pm. I should emphasise that this is not a long term plan, but only making the most of this temporary opportunity to get to know my body's responses... things will get really tough when I have to reduce. Hope that is of some help - I guess the luck comes with finding a doctor who is willing to work with us rather than 'by the book' xxx
I like your spirit and am increasingly taking that stance myself. I just need to winkle the drugs out of them and then work out myself how to use it. So far I've found taking 1mg Pred on waking (which may be 3am or later) makes me feel better and/or gets me back to sleep and stops early morning palpitations. I then take the full dose and that's ok for the rest of the day, unless I have a particular stressor (in which case another 1mg does it). I'm titering down slowly on the full dose.
Some people do the Pred/HC combo as it tackles the slow acting/quick acting actions needed.
In my case they don't know why I have AI and can't yet to the sync test as my Pred dose is too high, so I guess it's trail and error. I'm sure there's hope for both of us that our adrenals will wake up at some point, but I suspect that means getting the other aspects of our disease under control (if that's the issue). I do think they should just do all the tests needed, find out what's up and then treat accordingly! xx
Yes, exactly. Just because you are on a supra-physiological dose of pred does not mean that you cannot experience the symptoms of cortisol/steroid insufficiency. The most obvious example being that a single morning dose may well leave you deficient in the hours preceding it. I'm sure that minute-by-minute, our HPA works to adjust neurohormonal responses all the time too, and if it is blunted, we can also experience acute episodes of discomfort. The synacthen test is no more than a crude screening tool, and for those of us with clear clinical issues, it seems perverse to use it in this way - we already know that more investigations will be needed. I feel the same way about my thyroid 'monitoring'. By testing only TSH - which is already elevated - it will turn up nothing we don't already know.
Like I say, I'm enjoying a brief period of freedom but soon I will be back trying to reduce my pred to a minimum. I'm dreading it - but I'm sure you will help me!
You are so good at getting to the root of the matter, even when you have to direct things yourself -- by testing, trialling and backing up your self-research. It is an inspiration. And you got the best reward -- returning to alert and energetic. What a thing!
A small story from post-chemotherapy had me in fatigue hell for 2 years, with virtually no let up. I went to GP after GP, my oncologist, my surgeon who dealt with the cancer and pretty much all the nurses. All of them said sometimes it happens to chemo patients and for some it never goes away. It was all well and good to not be dead from cancer, but when you walk around feeling dead anyway you wonder what all well and good really means. I was not satisfied with this response and kept looking for answers. It was actually a student doctor, who questioned my testosterone levels. When I saw a menopause specialist due to being thrust into early menopause from chemo, I suggested the student doctor's testosterone levels idea, and though the specialist thought it could be adrenal insufficiency, she decided to test testosterone as well. Adrenals fine. But testosterone - Bingo! I was 1/10th what female levels should be. The Testim medication is not approved, but she could prescribe it with my consent. Yes! Yes! 2 weeks later a corner turned. A month later and I was utterly and totally myself -- alert and energetic was also my report. This lasted 2 years until the autoimmune disorders crept in. But that breather; that return to myself has given me a fixed mark for which I know I can always strive through illness.
I think your doggedness is to be admired, Mike. Fatigue lifted, many other symptoms also, not to mention the spirit -- is a fine, fine success! Just as Twitchytoes so eloquently says, may this state of improvement continue forever!
That's a great story, Panda. You really had to be on the ball to pick up on that student's remark, and dogged in following it through. Great result, though Two thoughts - one, how much time and energy it takes to be chasing all this stuff up for ourselves. Had I been looking after small children at the same time (for instance), I just wouldn't have been able to do it. Second - the 'fatigue' symptom seems massively underestimated by people who aren't 'fatigued'! Like you say, "when you walk around feeling dead anyway you wonder what all well and good really means". Thanks for those insights and support x
Indeed, one's life situation being suitable to do the chasing/follow-through sure makes a difference, but there are many where the situation could suit and the impetus to help themselves is not there. And massively underestimated fatigue -- exactly! x
That really is great news about the benefits of 24 mg steroids!. You must feel like a different person but not so great that it hasn't helped the myosotis!. How long can you stay on the 24 mg. like twitchy I too don't know enough about the adrenal insufficiency but admire how you've been a dogged detective to find out what's wrong and that is an inspiration for us not to give up!. You've proved there are answers it's just finding them!. I look forward to more updates and enjoy the new you. Do hope it lasts a long time as you've had a tough two years. X
Thanks, you are right - the standard response is usually to blast you with iv steroids as the first line treatment. This was ruled out for me because of the severity of my previous responses to increased pred doses. I now suspect that this was actually a red herring and I would have been fine with IVs. In due course, I may yet need to have them, but in the meantime I have started on azathioprine.
How are you getting on with your current treatment? x
I had a serious reaction to azothioprine with very low blood white cell that lead to pneumonia. Had IVIG and Rituximab that really worked for my Dermatomyositis. I’m now in low dose of Medrol 2 mg and Cellcept. The condition is undercontrol and feel almost normal
Hi, I was taken off hydroxyq. last year and had a horrible reaction. I was in Germany at the time and they put me initially on a dose of 75mg for one day, then 50mg then I reduced to 25mg after a few days which I continued as - once back at home in Pontypool - they seemed a little unclear how to bring the dose down. After 2 weeks at these doses I experienced what I can only describe as RESURRECTION!! Life, energy, fully able to work - I was me again!! Then the doctors tried to bring the dose down again. I got to 7.5 at one point but have mainly been around 12.5mg. I’ve been really affected by the heat and now a flare so had put it up to 15mg. Having read your input I’ve hiked it up to 25mg today. I have Lupus, ME and adrenal issues. The doctors say that the steroids will naturally give a sense of euphoria. I take vit d and calcium because of steroids plus Alendronic Acid once a week to counteract side-effects. Where does the argument for quality of life - ability to work come in?
Yes. I'm under no illusions that remaining on my current 24/25mg dose will cause me long term problems, so I will need to reduce. Ideally, I will aim to get down to at least that 7.5 pred level you mention. But at least this brief experiment has given me a lot more confidence in my understanding of my condition and how my body is reacting to steroids. I am sure that it comes with costs, but as you say, we have to weigh the risks for ourselves and sometimes the avoidance of longer term risk is outweighed by the sheer misery of struggling on feeling constantly fatigued, uncertain and unhappy. For me, this last week has been sheer joy and worth it even if I dropped dead tomorrow as a result.
However, I do feel the need to be responsible here and emphasise that what I'm describing is my own, personal, journey. Don't try this at home, kids! x
One common practice for glucosteroids is to tapping down slowly such as 1 -2 mg over several days. Otherwise, there would be withdraw syndrome that makes one feel sick
A very long holiday is what this untrained doctor orders. You've survived a shipwreck and are now in a green and pleasant land ( when the heatwave's over) x
You have been right all along about the adrenal issues. I am still trying to get a balance with my Pred and HC but I had that same miraculous return to almost perfect health a few years ago after a large one off dose of dexamethasone.The improvement for me lasted almost three months. It is a much stronger steroid and I have severe absorption problems from advanced pancreatic insufficiency. I too think I am vastly undermedicated as did a previous gastro consultant who recently retired. I have a feeling I dont really absorb the daily Pred!
At the moment I have to endure a couple of months of massive doses of pancreatic enzymes after which they intend to start the Azathioprine, meanwhile the clock of our life is ticking by and remedies and solutions seem still far away!
At least my newest pancreatic gastro is considering the dexamethasone again if present regime doesn't work.
But it has really cheered me up to hear of your progress. Yes you will have to try to taper down, but you have discovered what has actually worked!!!!!
It has been such a long road and only you , not the medics, have steered the way to finding some kind of answer!!!! x
I have been eager to hear how you're getting on, cuttysark. As you probably know, it does seem very likely that our gut microflora has a profound effect on our absorption of oral steroids, and something like a gastro-resistant coating can delay the absorption till the duodenum - where the flora may be very different to the stomach. For those of us with complicated gut conditions, there must surely be real variation in what doses, timings, types and modes of administration are most likely to work. Some of us are 'typical', but we are all different! Fingers crossed for your latest 'adventures' x
Oh how fantastic to hear you’ve finally found something that helps the awful fatigue! You definitely deserve it. Hopefully you can play enough with the drugs to get it right so it’s not back to those grim days but not too much of the drug either - so hard and I agree with you, we are the only ones that can know what it feels like and we’ll all need different individual programmes.
Don’t suppose you happen to know the conversion between oral Pred and methyl IV Pred please? I thought Pred was about 4 times the strength but I’m back in hospital 😬 (my local one this time although my rheumy is keeping them on their toes) and they’ve given me 4 lots of 100 methyl Pred today in place of my once daily 12.5 oral Pred which seemed a little excessive?? Just when I’m starting to reduce. They’ve said I’ll need it higher for a week but like you I like to make up my own mind - although a bit harder with IV to subtly adapt dosage 😂.
Hospital again you poor dab? A quick google gives a consensus from several sources that iv methylpred is 20-25% more potent than oral pred in terms of anti-inflammatory effect. So to get the same anti-inflammatory effect as 100mg iv methyl pred, you would need to take 125mg of oral pred. It seems that the impact on markers like lymphocyte count shows iv is as least as good as oral too.
And the idea of iv dosing is that it delivers it quickly, instead of subjecting you to several weeks of tablet taking, so it should reduce the unwanted effects of long term dosing like adrenal suppression and osteoporosis.
I got my muscle biopsy result in the post today. It is full of geek-speak, and concludes '...consistent with polymyositis...with unusual features...sent for electron microscopy and further report' So there you go.
I do hope you get a good result from this latest escapade. Keep posting! x
Ah no I’m fine thanks, the lupus is great at the moment (I feel like you said energy wise 🙂) just couldn’t stop vomiting (every 10 mins for 10 hours - very unpleasant, hope it’s just a bug and not the magic metho 😬) so consultant was concerned as my immunity levels very low and I couldn’t steroids down and I’m very steroid dependent after a year so IV for a week. Thanks, yes that what I understood but I asked the drs today for the comparitive dosings and got a ‘why are even questioning us’ look!
‘Unusual features’ ? I hope they are all treatable. Bet you can’t believe the difference in how you feel? Sometimes I think I’ll never feel normal again then it goes as suddenly as it arrived - strange disease. I’m seeing the immunologist tomorrow (if I’m allowed out of this hospital to visit that hospital 🙄) and want a long discussion on cytokines/ interferon etc because the more I read the more I think that’s the problem causing fatigue for many of us. No one has had the answers yet but hopefully we’ll all find out parts and put our heads together to help solve this!
maybe if we had a simple condition we wouldn't need to know so much about what was being done to us? instead, a million things change every day and because so many of them are deeply unpleasant, one gets preoccupied with thinking about every single possible way of making things just a little bit better...i get nostalgic for the days when all i had was the pain of my shattered leg - all i had to do was swear and take a few more opioids! No arcane theories about neurotransmitters and cytokine and CD8 helper cells to fret about.... hope your night is restful and vomit free x
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Two thoughts - one, how much time and energy it takes to be chasing all this stuff up for ourselves. Had I been looking after small children at the same time (for instance), I just wouldn't have been able to do it. Second - the 'fatigue' symptom seems massively underestimated by people who aren't 'fatigued'! Like you say, "when you walk around feeling dead anyway you wonder what all well and good really means". Thanks for those insights and support x 
