Well I’m finally down to 7 mg Prednisone and I’m feeling exhausted.
Doing ok as far as pain is concerned but feel as if I’ve run 10 miles.
Diagnosed with PMR in 2016 and have slowly reduced to get to this point. My Doc leaves it up to me how I reduce and I’ve mostly followed the guidance given here.
I assume it’s the adrenals taking their sweet time to wake up but I wanted to hear any other thoughts on this matter.
Thanks
Very likely adrenals. I found 7mg to 5mg the worst for fatigue and general uselessness. My hunch, later confirmed by my Endocrinologist, was that the dose had become too low to cover my daily needs, especially physical effort. However, it was still high enough to be causing a degree of suppression that meant the adrenal axis wasn’t getting enough feedback. I decided to reduce slowly by 0.5mg introduced over 4-6 weeks depending on how I felt, in order to get out of this no-man’s-land of dose. What I did have to do to ‘survive’ was to stop putting demands on my body that it couldn’t produce the cortisol for, yet. You can tell what your threshold is because you feel awful if you cross it.
That is exactly the point I began with the fatigue. My attitude has been that the Adrenal recovery is a stage that just has to be got through. I manage it with an after lunch nap of always 90 minutes ( body choice). Pacing my activities, having complete rest days, avoiding stress - even if it means agreeing with everybody and relinquishing control over family events ( current). I do a really slow taper as recommended here, half a mg and stopping at the first sign of trouble, even a cold, which seems almost permanent. A day at Chatsworth Christmas display and market had me poleaxed for 3 days afterwards. Progress is snail pace. I am down to 5 mgs any lower and the pains begin. There is an element of clairvoyance for this bit. Just think recovery and don’t expect many doctors to understand.
I only reduce by 1/4 mg since I found, through experience, I don't do well with anything more than that. It's amazing to me how a 1/4 can make such a big difference in how I feel.
At this point though, I have come to the conclusion that as long as there is not a flare up with pain and stiffness I have to work through the fatigue if I'm ever going to reduce to my current goal of 5mg.
It's so strange since the days I feel well I am able to walk 5 miles in an effort to keep fit. However, on the days I feel fatigued it's an effort to walk to the bathroom.
A quarter is even better. I occasionally get an hour or so when I feel normal. I managed the Warner brother’s Harry Potter event with my grandsons, carried around the huge installation by their joy, back in July.
My latest Covid jab has really set me back, it hurt being done and I haven’t felt right since. Everything is a huge effort. I fly to Australia next Monday, God help me. 🙏
I hope you have a lovely time with the family in Oz Jane. It’ll be worth it. Have you booked flat beds for the flight?
Thank you! I just must have faith that my 4 grandchildren will work their magic on me. Yes we have. My husband retires in June so he has pushed the boat out, or rather the flat bed
Well that’ll really help with the journey. You’ll be fine once you’re on the way. I find getting ready for any trip is stressful. Mind you, I always got a bit like that prior to GCA - have I packed right, forgotten anything?
I’m sure your grandchildren will work their magic. It’ll be a joy to see them.
Packing used to be my thing when the children were small. Now the “ what ifs” have grown and I want to take the kitchen sink for potentials for things going wrong.
Hope you have a good trip, Jane. Hope it has the same effect as my break did for me. I was very apprehensive before I went, but it seems to have done me good, even though I found it exhausting.
Yes, you have to find your own level. Do take extra Pred out with you. I had an almighty cortisol crash up a small mountain, it wasn’t funny and came out of nowhere. Luckily I was not alone and had Pred with me. I took them and waited it out wrapped in warm layers, before shakily going down. I was determined not to call out the yellow bird. Three others in the past after I had been off Pred and feeling not half bad, also came on in minutes.
I think I may have had one ( Adrenal crisis) when my diverticulitis was out of control, without realising. I was cold, shaking and vomiting. I thought it was the diverticulitis and obviously did sick day rules which rescued my Adrenals. I was on 5 mgs. and doubled it. Distracted by another condition - something else to be alert for.
You can soon tell because Pred works in hours for those symptoms and if you have IV hydrocortisone it’s very quick. I can’t say that I felt back to normal, just a bit battle worn but not feeling I’m about to expire. I’ve headed a few off at the pass with 1 or 2mg plus bed rest before it got to that.
It is the overlap of symptoms (divertulitis and adrenal insufficiency) that makes it difficult to differentiate between the two at times. Headache, nausea, bloating, abdominal pain, diarrhea…..could be either.
That’s helpful. I tend to go through cycles of symptoms. I dip in and out of those symptoms all the time. I have never been given antibiotics. I think I might try the Australian medical system - they tend (apparently) to over-test and over-treat. Thank you! 🌺
Sounds like a plan. I know that when I have a diverticulitis infection I get the chills and my CRP goes up. 7-10 days of two types of antibiotics does the trick with a revised diet starting with clear fluids followed by a beige diet a few days. I slowly add in fiber with lots of water.
I’ve had AI symptoms a few times while I attempt to lower pred from 6mg to 5.5mg. The main symptom that emerges different from diverticulitis is fatigue….something completely new to me. The thoughts of staying at 5.5 indefinitely (if I ever make it down), with the nausea, vomiting, abdominal woes and fatigue is daunting!
All the best in Australia…hope you get investigation and eventually resolution.
Thank you for this helpful advice. I think I have been underestimating the impact the Diverticulitis has been having on my overall health. My GP surgery seems to have a cardinal rule about never prescribing antibiotics unless you go through hoops, like 3 appointments etc. It is so difficult to get an appointment or ever see the same doctor that I tend to give up. Are you on any medication for it? I was given Lansoprazole to protect my GI system from Pred. And Buscopan for the impact on my bowel function. I am not sure if they help or hinder.
Apologies Rocketman42 for the hijack of your thread. A bit panicky here.
My GP surgery seems to have a cardinal rule about never prescribing antibiotics unless you go through hoops, like 3 appointments etc.
I think they’re all been told to limit ABX unless they are really necessary- we did seem to through through a stage when they were handed out like sweeties… and the overuse in recent years means they're becoming less effective and has led to the emergence of "superbugs". These are strains of bacteria that have developed resistance to many different types of antibiotics, including: MRSA.
Yes, I am aware of the reasoning but my surgery seems to be very extreme. I have ended up with untreated Diverticulitis for over a year. I see a different doctor every time , none have offered antibiotics.
I am not on any medication to protect my gut but do take half of my split dose of pred in an empty enteric capsule and the other dose with food.
I seem to be averaging a diverticulitis flare about once per year and my GP is ok giving me antibiotics for it as left untreated the infection could cause a perforation in the bowel. Mine are taken according to instruction (no dairy or oranges with one kind, and food with the other kind). Some folks require high dose IV ABX in hospital. Before developing diverticulosis/itis I had not taken any antibiotics from 1993-2021. Seems as if I was destined to develop it given both parents suffered with it (my dad had a length of intestines removed surgically), I’m overweight and on long term steroids…..all risk factors. I’ve read Actemra may also pose a risk.
Also I do get a very painful lower left abdomen that will not dissipate when I have a flare. The first time I had it I was subsequently diagnosed with a contract CT scan that clearly showed a large phlegdom in my lower Sigmoid colon and was told had I left it without antibiotics I would surely have experienced a hole in my bowel (which is very serious and requires surgery)… see Granny80’s recent post.
To me it seems strange that you’ve never taken ABX yet the diver has not progressed into something more serious??
I do hope you get some answers/treatment/relief as you’ve been dealing with symptoms for some time.
I am never not in pain. I haven’t had any doctor make much of it. My constant pain is on the right, it’s boil-like.
I would be going to Australia wouldn’t I - on Monday ? My son in Law is a doctor, maybe he can help me? Thank you so much PMRCanada. X
I am on Entric coated Pred but I feel it in my lower abdomen. The Lansoprazole provides extra protection but causes constipation which the Buscopan relieves eventually.
I can’t speak to the gut protection meds you take, but can add that my diet and any subsequent constipation seems to be what elicits a flare.
Well, prompted by you I managed to get in to see a GP. He told me that they don’t prescribe antibiotics for Diverticular Disease( not Diverticulitis he said) routinely but he did give me a prescription for Co-amoxiclav, he didn’t really think it would help and the side effects include being covered in a blistering rash around the mouth amongst other delights. So I am not sure whether to take it. It is basically penicillin with something added to make it do its work. It has all my current gut symptoms in the side effects too. Including the killing of good bacteria. He told me to look out for blood but I am apparently not in severe enough pain aargh! I am sometimes! He seemed sensible and up to date though. He also gave Prednisalone a few of the usual swipes/ kicks. I could see that he was thinking IBS - maybe he’s right. I am nervous about the flight and being up to all that Australia and my beloved family will expect/ demand. They must see that I am not preserved in aspic until I come to visit them though. Thanks for your help though. You told me more than any doctor ever has.
Well as they say on here I’m no doctor, but do have a lived experience with diverticulitis. My colonoscopy resulted in identifying myself as having diverticulosis, but when it gets infected it’s labelled diverticulitis. Diverticulitis Disease sounds like a catch all term for both. The medication he prescribed seems somewhat intimidating given the side effects. IBS is such a general diagnosis that it might be difficult to treat specifically. It’s never fun travelling when your under the weather but hopefully your family can meet you where you are at. Hope you enjoy your trip though….at least the weather will be better than where you are. Safe travels!
Thank you! I am hovering over taking the tablets.
The "Up-to-date" article says "BACKGROUND In most cases of diverticulitis, inflammation is mild, and the only treatment required is a clear liquid diet and antibiotics."
Would need more investigation to find the rest of their opinion - but not giving abx seems old-fashioned ... The most significant approach does seem to "resting the bowel" and may be even less food than a beige diet ...
HI Sheffield Jane,
Yes you will definitely have more luck getting antibiotics for diverticulitis in Australia if it's a strong-ish bout. (And yes, fortunately they do tend to over test 😅.) Antibiotics plus a little bit of psyllium (yuk) and a mild diet cleared up my prolonged bout of diverticulitis.
It's a mixed bag here though. Not one rheumy or GP in Australia that I've seen has ever mentioned adrenal fatigue much less adrenal crisis, and I'm now down to 2mg. If I ask, they dismiss is it. I rely entirely on this wonderful forum for practical advice for the PMR.
Wishing you a wonderful time with your family in Oz.
Thanks for your post and all the helpful replies. It's a comfort to read of similar experiences and how fellow sufferers/advisors deal with their own difficulties. I am at 6.5 mg prednisolone reducing half an mg every 6 weeks from the 7mg dose (previously 4 weeks for many months) and my symptoms still follow a similar pattern of alternating pain and no pain, with the added 'deathly fatigue' that hits like a brick wall. Agree with others - simply sleep and rest through those times. On the plus side, I have amazing days on a high, which feels like a caffeine high and it's wonderful, especially when it lasts a few days - is this my adrenals waking up? I can totally accept and sleep through the 'deathly fatigue' hoping that the 'high' will follow as seems to be the pattern. I usually try to keep up with exercise (though at a more geriatric pace) through the painful times, while fully answering the calls to sleep. My thanks to you and all responders.
I do that, on good days, I can manage a kilometre in the pool, though I need to sleep for a couple of hours after. But I figure that it is better to take the exercise and sleep it off after, than not do it at all. Heck, if I need the rest, I take it. Other days, I might be lucky if I am washed and dressed by lunch time. At the very least, I try to spend at least 15 minutes out doors every day, even if it is only pottering round my tiny garden with a mug of coffee in hand.
It's good to work out what's best for you. Also, the advice from those who know on this forum is very constructive.
Rocketman, I can so relate to your experience; I was diagnosed Nov 2015.
1/4 mgm is all I can manage and I really feel it but I am going down now to 71/4 slooowly. Naps of really deep sleep. Some hours of productivity like cooking meals, doing the laundry or mild exercise at home. On oxygen 24/7 for something else which makes walking outside unmanageable; I have a mini gym in my downstairs with a treadmill, NuStep and bike. Lucky if I can make 10-20 min . Age 81though.
Good grief! You put me to shame. 😂😂😂
I order to reduce my O2 requirements I need to prioritize exercise- pain is a motivator to change..
My chest wall is deformed from scoliosis and I need to exercise to expand it better.
I too have found reducing by 1/4 mg has been so helpful. I generally stay on 9mg for a week to then reducing to 8 and 3/4 and repeating the cycle and touch wood no issues since since this plan from 13mg started. Your point on noticing a flare up and pain and stiffness is my benchmark and am with you when you say you work through the fatigue. I am fortunate enough to be walking 6 miles a day with no issues after building this up from 1 mile back in August to where I am now. I used to run daily for more than this up to when I first had those chronic pain and stiffness in shoulders, knees, back and hands starting in July this year so still have fitness in my legs from then.
I wish you well
"It's so strange since the days I feel well I am able to walk 5 miles in an effort to keep fit. However, on the days I feel fatigued it's an effort to walk to the bathroom."
That exactly describes how I am on 5mg. Although, having been stuck on 5mg for ages and was feeling awful, then a few weeks ago, I suddenly started to have more energy. Then a recent holiday with more walking than I have done for months and very little time for sleep, and I suddenly and inexplicably feel better than I have done in the last 2 or 3 years. Though I have also been taking an Aldi energy release supplement (it's a knock off of Berocca) and I am wondering if that is the source of my new found energy, though it took 2 or 3 weeks to kick in, if that was responsible. I read today that many people with AI conditions lack B6 because the AI increases the body's demands for it. I also have a gluten intolerance and don't eat grains, so I could easily be short of B vitamins, even though I eat a healthy and varied diet with lots of green leafy veg.
Feeling a bit better and wondering if now is the time to head towards 4mg, though I am a bit nervous about upsetting the apple cart and all that fatigue kicking off again. I am not exaggerating to say that in the summer, I was thinking that surely I must have some terminal illness to feel that ill. Anyway, I am still here! 
I saw a programme on Chatsworth Christmas display once. It just looked wonderful.
Hi Jane,
Are you living in Chatsworth, California? I live in Santa Clarita, California! I would love a friend to see in person that understands this disease. It seems that the only ones that understand it are the ones that have it...including the doctors. I have been on Prednisone for 3 years and have had so many serious side effects.
I will hope to meet you sometime. Chatsworth is so close.
Love,
Sasha Neiman
If you look at SJ’s profile, you’ll see she lives in UK..
Sorry Sasha, my Chatsworth is a stately home in beautiful grounds in South Yorkshire UK. We have lots of American members, maybe someone will see this, who lives near you. Or you could start a group by advertising on Social Media perhaps?
In the meantime we always have this forum thankfully. 💖
PMR fatigue was and is challenge to life management. Naps after breakfast, after lunch, after dinner but well before bedtime. Used to split cords of firewood, built a large shed and expanded veggie garden when on 10 MG of pred or more. Also was too talkative, but at the three MG I've been able to get new rheumy to prescribe after full taper off in spring 23, have just memories of being busy and productive now. Makes one wonder when does the fatigue go away after being below 8-10 MG and life resumes.
When I got down to 7mg I felt absolute crippling fatigue. I couldn't do anything at all because of the exhaustion and I am now down to 0.75mg. It was sheer hell for about 5 months and it has now improved imeasurably and I only feel as creaky as a normal 67 year old. All I can say, from my own experience, is hang in there!!! Don't over do it and it does eventually go away but I totally understand how difficult it is. Wishing you all the best.
So I assume the moral is to stick with it and it should eventually improve. At least until the next time I reduce where I will have to go through the challenge all over again. Seems to me that by decreasing 1/4 mg each time I will have to go through this dozens of more times until reaching a very low dose. 🤯
Seems to me that by decreasing 1/4 mg each time I will have to go through this dozens of more times until reaching a very low dose. 🤯
Not necessarily - if your adrenals work at little bit better each time you reduce Pred then that side of things will improve.. unfortunately no one can give you a guarantee how long that will take..
The idea is that the tiny adjustment feels less awful - longer possibly, but feeling more human ...
I feel just the same and it's so depressing. Lying around with my feet up while there is so much to do for Christmas is hard . I'm on 7mg too.
I found it very hard from 7mgs down to about 4mgs. The overwhelming fatigue was so bad I shed a lot of tears because I became so exhausted. I must say however the exhaustion didn’t last for long periods of time if I stopped and sat down closed my eyes and rested. I thought I was never going to feel better. I am now on 2.5 mgs and don’t get it so bad now …
agree with all the posts here. I’ve managed to get to 4.5mg, but the fatigue is hard, every day I ‘hit the wall’ about 3 pm, only bed rest gets me through.
A trip to IKEA, just about finished me for a week!
Plodding on
Think a trip to IKEA floors most people …😳
I found the excitement almost overwhelming last time I went. The illusion of everything being so affordable.
In follow-up to my original question I’m wondering if there is a dosage at which it becomes easier to lose any excess weight that was acquired while being on Prednisone? Or, is the dosage irrelevant and as long as your on any Prednisone the weight remains ? Of course following a “prudent” diet is a given.
Think that’s a “how long is a piece of string” question … usual comments is as you get to lower doses- and like everything in life, probably depends on individual - scroll down to summary-
Depends on the person I think - for some it melts away from IRO of 10mg, for others no a gram disappears until they get to zero. And "prudent" or healthy eating often doen't achieve a lot, some of us have to be very low carb to get it to shift, even slowly.
Exhaustion and stiffness, nearly down to zero!
Now down to 2.5mg pred
Do I taper if I’m coming down with a cold?
I’m sure I’ve now got GCA
Overwhelming exhaustion
