My extreme chronic fatigue has taken an extra twist as I add hydrocortisone into my steroid mix, and I'd be delighted if anyone has thoughts or experiences to share.
I'm currently tapering methyl prednisolone and gradually adding hydro in as part of the taper (I have adrenal insuficiency). My regime is currently 5mg of hydro on waking, 5mg methyl pred at breakfast, and 5mg hydro at lunch and tea.
Conventional wisdom is that taking hydro on waking helps give you enough energy to get up and start the day, but I am finding the opposite to be the case. Within 15minutes, I am hit by a wave of sleepiness that is completely irresistable, and invariably fall asleep for another 30 - 90 minutes. It is so overwhelming that it isn't until mid morning that I feel awake. The lunchtime dose has a similar effect (but not the evening one?!)
Anyone have any idea what might be going on here?
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whisperit
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Don't know - but I know a couple of people who were supposed to switch to h/c for adrenal insufficiency and it was a disaster with adverse effects. They were switched back to pred - which works fine and they have a life.
Thanks PMRpro. I guess this may be the case for me too. It would be so useful to understand the process behind it though, especially since so far, I've been unable to find any regime that gives me a life x
If you have the energy - stick up for yourself and reject h/c. You do have my sympathy though - wouldn't it be nice not to have to fight?
My friend with Addisons, Sjögren’s and PA has to quit hydro as the already severe fatigue rendered her barely able to leave her bed 24/7. I guess it probably works best for those who “only” have Addisons? X
Thanks TT. Even anecdotal reports of others having a similar problem is useful - even the Addisons Disease Support Group Forum has come up empty so far, and you know how it is when one thinks one is the ONLY PERSON IN THE WORLD with a problem - it gets one to doubting the evidence of one's own experience. Or sanity, or both. x
You definitely aren’t alone nor should you doubt your sanity on this.
I can’t really put you in touch with this friend directly as I’d like to - but she has been able to try and is responding well to a pioneering alternative to Pred and Hydro. At least it could be as well as Pred but the poor woman has a fractured spine from advanced osteoporosis after last a result of 30 years on steroids.
I’ll find out what her new med is called. I know she had to fight her Endo for it after learning about it from others on the Addisons forum. Xx
Oh whisperit, no helpful advice or knowledge I’m afraid, just lots of hugs because there is nothing worse than the overwhelming fatigue.
I have discussed this at length with my rheumy and we touched on amphetamine based medication (as some people with MS and ME say it works wonders). I’m not allowed it because of my dodgy nervous system and inability to control my heart rate and he won’t prescribe it because says he wants evidence first (I said the evidence has to come from someone being first!) and it needs to be prescribed by a neurologist but my GPs said they’d get a neurologist to prescribe with rheumys permission (which he wrote to them to say he wasn’t giving). I presume Addisions would be similarly contraindicated but not sure? The other thing I asked about was the LDN but again not sure how we get that prescribed (think treetops has some links) he googled it and redirected me towards CBD. I know lots of people are starting that now. Have you tried that? Although think it’s more for pain and sleep than energy.
I’m waiting for Lupus UK funded Dr Chris Wincup to come up with something in his iron study that helps us all but my rheumy was very dismissive about iron infusions being any help.
Another rheumy I spoke to when I was literally laid across her desk with the fatigue and begging for something to help it said that once you get the body properly immunosuppressed and combat the disease then fatigue usually responds well too - that’s definitely been true with me (temporarily until it all hits again 😬🙁). The Dr who finds a cure or even a treatment to improve fatigue will be an absolute hero and life changer for so many of us.
Maybe time for the rituximab? Any other immunosuppressants to try? So complicated with the addisons on top.
So sorry you’re going through this. I haven’t been able to get out of bed the last few days and have just been cheered up playing scrabble with my dyslexic son. Favourite words - Bacan, Bevly (when questioned on this previously unknown word I got a duh Beverely Hills obviously 🙄😂) and hurpees! Although slightly concerned about it in terms of his education it did make for a hilarious game of scrabble 😂
🤞🤞🤞 you find something soon that gives some relief xxx
Yes, it's scraping the barrell for ideas isn't it? This whole chronic fatigue problem seems to be a great puzzle in autoimmunity; very much neglected if you ask me, yet experienced to some degree by pretty much all of us. Another immune suppressant may end up being the way to go, but of course, who wants to embark on another powerful drug "just to see if it works". I might try the lying on the consultants desk trick, next x
I think the problem is that anyone who hasn’t experienced the fatigue can’t truly comprehend it and how it ruins our lives? So it’s maybe not considered as important as it should be. We need a fatigue suit for the drs and researchers...
So hard with the drugs, especially when you’re like and have had some bad reactions. I’m sure at least 50% of my problems are from the drugs. My rheumy tries to tempt me into compliance by highlighting the fact that the fatigue will improve along with the things he’s concerned about - and it often does.
Do try lying on the desk 🙃 My rheumy looks at me very sympathetically but one of my GPs (very young and flappy with lupus) asked me with wide eyed incomprehension why was I all floppy and not sitting up or communicating properly when the previous week I’d been lively and ... normal 🙄😂 and said unless I perked up she’d send me to A&E! I did say that I’m not sure they’d appreciate that as fatigue is not really an A and E issue - well I would have said that if I’d had the energy, in reality I probably grunted and lay back on her desk 😂 x
Oh my days. What lives we do lead eh? Dyslexic scrabble sounds fun; i may try it on the family on Boxing Day in place of the usual surrealist consequences (which is a real game - PM me for details )
I think surrealist scrabble sounds a bit advanced for my family although quite intrigued - probably links with dyslexic scrabble?! We had a new family game last night, 16 yr old son brought 5 friends home to sleepover after a party (just all started drinking 😬) and it was how many duvets vomit friend could reach 😱🙄 We then discovered vomit friend had been banned from multiple other houses for the same after party game... sadly the fatigue was too much for me to get down 2 flights of stairs to clean it up! X
hard to say if its the mix or just part of the overall tapering. Its always worse for a few days after dropping the dose, but since I am also altering the mix at the same time, its hard to determine which is more important x
It would be SOooooo good to give medics a dose of fatigue.
Belladonna would induce those pesky 'mild' lupus symptoms - headache; nausea; vomiting; dry mouth; difficulty swallowing; blurred vision; hot, dry skin; dizziness; drowsiness; confusion; anxiety; weak pulse; and an irregular heartbeat - along with Black Henbane, which produces a tendency to sleep.
Don't try this at home folks, both are highly toxic in even in small doses (hence favoured by the GRU).
Have not been on here much, neuro thinks I have had a stroke 7 weeks ago and it has affected my vision so not easy to read.
Just wanted to tell you about experiences with HC and Pred as we are quite aimilar re the autoimmune probls and also Addisons.
I take both HC on waking 5mg and also Pred 2.5 at 10am with cuppa. I take more Pred early afternoon then more HC late afternoon and that is me till ghe next day.I also have Depot Medrol 80 mg injection every 10-12 weeks.
If I am ill or accident like cutting hand or falling I have to up the HC dramatically to 60 mg or more if necessary.HC is vital I feel for any Addrenal crashes. Even if you have a bug or infection best to up the HC.
This seems to keep me ina balance with the Addisons at least.
I did have a spell on the slow release Plendrel but got in a terrible state as due to chronic gastric problems I dont absorb easily. It looked as if I wasnt absorbing the Plendrel as I felt under medicated all the time. With the ordinary HC I absorb it very quickly almost too quickly and that is why HC alone would never be able to control the Addisons for me.
It all seems to be a balance and very individual so I would definitely try for yourself what is best.It could well be that the Plendrel would work really well for you. I got it very easily from my gastro consultant so well worth a try. xx
Thank you so much for replying, cuttysark, you have been missed. A stroke is a bit drastic, though. Are you coping OK? Do let us know how you are getting on if you can. Hugs x
Just to update in case future readers are having similar problems: going through the AD Support Group forum, it looks as if there is no clear answer to my query. Early morning waking is of course typical of cortisol deficiency and early morning hydrocortisone dosing is a normal way of dealing with it. However, there is a lot of individual variation, and a lot of uncertainty over how the whole thing works. Some have suggested that the hydro dose enables the body to relax after the stressing of inadequate cortisol and this initiates a sleep phase. Some suggest sticking to the standard steroid regime and looking fro other explanations; others encourage experimenting with the size and timing of doses. It's clear that there is no consensus x
Thanks for the comments Mike. Yes it is very very complex with the Addisons dosing and their forum expresses that too. Some folk do really well on HC alone.
I think our big problem is that we also have an autoimmune disease on top so it is hard to balance everything out.
As for stroke, two GPs and two optometrists missed it and I didnt see neuro for a month! They all thought it was an ocular migraine yet neuro said it was classic stroke. I went to bed normal and woke up not being able to see properly but no headache at all. Headache came ten days later and was horrendous! Neuro said it had happened in the night when I was asleep so I had no other symptoms at the time. No one thought to send me to A andE.
I had the MRI last week and now awaiting results. Still hoping neuro was wrong but he is expert!! GPs were gobsmacked they missed it!
Just shows how easily these drastic things can be missed.
I cannot take asprin and also not the coated one due to chronic gastritis so feel a wee bit like. time bomb as scared I get another.
He said there might be some improvement in three to six months but at the moment cant read easily at all or drive. Am awaiting stroke rehabilitation appointment which will work on my sight.
Only consolation is that it could have been much much worse, but a wake up call for everyone out there that it can happen so subtly and unexpectedly.
I don't think the stroke warning adverts on TV have explained just how simply it can appear nor that you can wake up with just one symptom.
Hope you get those steroids sorted out into a balance, I found it took a couple of years of different doses for the Addisons but that bit is a wee bit better now. XX
What a difficult situation for you. And a perfect illustration of how complex illness takes over one's life. We have to be our own nurse, doing a "special" on ourselves (as we used to call it in my student days), 24/7. I do hope you get the outcomes you deserve and that life gets much much easier soon x
I do love your hedgehog, sums up fatigue perfectly. How typical that your drugs send you to sleep during the day and leave you awake at night. hope you get them sorted.
Hi whisperit. So sorry for your troubles. I am not on any medication for Lupus apart from a steroid gel to put on skin for horrible itching but the fatigue is a problem for me, most days not out of bed till noon but still shattered. I cannot sleep at night so that does'nt help. Hope the doctors can help you. Kind regards
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