Hi Everyone I’ve been on pred 5mg for approx 14 years! I’m now reducing by 1 mg for 3 months and stepping down a mg every 3 months, well I can honestly say the first 3 weeks was fine I’m just over 4 weeks now and I’m soooo tired I sleep like log but from time when I get up to time when I go to bed I’m yawning not as much energy heavy legs! Anyone else have this , I’m presuming it’s the pred! I feel as if I have to push myself to do anything I’m 64years! I’m thinking well maybe I should get out of the house and go for a walk, push myself as I feel as if I could fall asleep standing up .
Reducing prednisone from 5mg : Hi Everyone I’ve... - PMRGCAuk
Reducing prednisone from 5mg
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Eternity6
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My Endocrinologist is interested in helping me with the fatigue and steroid withdrawal even though I am on a higher dose than would indicate an Adrenal deficiency. They do much more than just help with this. I have been pleasantly surprised at how engaged mine is. He is keen to do a raft of blood tests, including my absorption of Prednisalone. He is taking my thyroid condition into account and is taking a holistic view of how I am. I have been on steroid treatment for over 6 years and his different approach is pretty interesting. I don’t know if this is uniquely him or whether us long term patients should be exploring other avenues. Currently I have ill defined symptoms of GCA/LVV and mostly feel exhausted and unwell. I feel as if I have possibly used up all Rheumatology options. I am having a comprehensive eye health check at his instigation. Then I am to drop Pred 1mg a month until I reach 5 mgs ( from 7 mgs) Upon my request my Rheumatologist has organised MRI and MRA scans to look for disease activity. These have come back clear. I will report on any breakthroughs.I manage the fatigue with regular afternoon naps and try for a little walk each day. I notice that good news energises me, so I wonder about a psychological component to some of this. I hope this helps a bit. The man’s a tonic.
He sounds great, I have underactive thyroid also! Mine hasn’t mentioned this though! But he is monitoring me via 3 monthly blood tests as I go along! Wishing you all the best with your journey
Jane do you think you will try the hydrocortisone option? You have good interested medics I feel in an awful limbo land getting nowhere.
He makes me want to put myself in his hands at this stage. I’ll let you know even if it ends in tears. I am cheesed off with feeling rotten. I know that limbo feeling believe me, I am trying to climb out.
Oh sounds good. I know, im on the point of tears i feel so awful. Good luck, i really hope it helps you.
I’ll keep you posted powerwalk. I am sorry you are going through a tough phase. I thought it would get better as time went on, I bet you did too.
I fully understand your despair and frustration...I am sitting or laying at the moment with the worst fatigue I have ever had....had so many blood tests...nothing else shows up.. ..my thyroid is just above borderline, so GP won't prescribe for that, all my family have underactive thyroid, one was borderline and feels better with medication. Will request another cortisol test when Max rings in May.....I am tempted to try and drop slowly from 7 mg, but fear I won't be able to get out of bed! Don't think they will prescibe HC for me, or even see me till on 5 mg.....Interesting about testing for absorption of pred....
We keep climbing out!.......
Keep us posted...
Might be worth asking Max - I remember reading one article where a rheumy said they found PMR patients often did better if managed as being hypothyroid. And I know that is often helpful in CFS. A pituitary problem can also lead to hypothyroidism - without the TSH being raised.
I discussed this with him.last year, he said ask GP, I got a locum who said you are just above the bottom, and then he w as the one who said, I need to tell you about steroids, don't suddenly stop them!....to which I replied if you had my notes in front of you....I've been on them 10 years, there's nothing you can tell me about them!
The TSH business confuses me....but my brother-in-law had pituitary problems and recommended a Endocrinolgist in our hospital, I am tempted to pay private...
I am.a great believer in ruling out to rule in....even if we have to pay!
It doesn’t always follow that the lower your dose the more tired you get. I am not sure that the fatigue is always Adrenal related. I wonder if the fact that we’ve been systematically ill and the steroid treatment makes the body works harder than it would normally, might have something to do with it, then add in all the vaccines we’ve had and the stressful times we live in and Bob’s your uncle, we want to go to bed.I was not as bad as this when I had PMR alone and got down to 3 mgs - not in terms of chronic fatigue anyway.
Exactly, last June the scans I had showed no inflammation......so what is going on then?? Pain is not my big problem, it's severe fatigue, and my weak wobbly legs which feel like they weigh 10 stone each, when I weigh less than 10 stone!.....I think it's my Adrenal suppression...and possibly thyroid problems......not a good combination...
.
My pain is from OA because of being immobile....just can't win!
My symptoms are very similar to yours. Perhaps we need some form of rehab? I could design it, but we’d have to be millionaires.
Oh how exciting.....I'm sitting here dreaming right now....what do you suggest.....though I will say there has to a waiter on hand at the snap of our fingers!...😂
Sun, sea, spa, gentle massage, meditation, good nutrition, handsome waiters - oops, getting carried away. No news, tailor made gentle exercise- like bobbing about in a warm pool………..
No - that's a luxury holiday! Not rehab - you have to work with rehab 
I do actually have the referral in my hand for a rehab centre near Oberammagau ...
Please tell us about it when you’ve been. Longtimer and I will incorporate all the good elements in our luxury rehab centre.
klinik-oberammergau.de/838-...
Only in German I'm afraid - although just seen on the right of the page there is a google option to choose language and English is an option - but it has a video of a patient arriving for a shoulder op.
Looks good……
Looks OK doesn't it! Christian is quite keen I go.
Always worth a try, and there’s no reason why you can’t, is there?
Not now - just fitting it in at present is a bit complex with the bureaucracy needing me here. Not just round the corner - 2 1/2 hour drive. 5 hours by train - though it is a beautiful train journey but track each other really
That looks pretty impressive. Is it for post op rehabilitation only? What a wonderful spot - healing in itself. It doesn’t look frightening either.
No, they have a rheumatology rehab unit too. Our region has an arrangement with them to send patients there. The thought of 3 whole weeks being cooked and cleaned for is really appealing! Just have to do my own washing!
That sounds wonderful. Refreshing for the body and spirit.
I suspect that will also be part of the deal. Very "in" to the effect of the spirit on the body are the Germans.
VERY true! I’ve been to four - but never again. I’ve never moved so much in all my life - or been so fatigued when I got home each time that I had to stay in bed for a week.
I'll give it a go - be a nice change of scenery and what's not to like about being fed!
It will do you good. I asked my doctor if it was worth going again about two years ago. He said “if you body is capable it is excellent to go” he added “I’m afraid your’s isn’t”!!!😂😂😂 As my body is much weaker now I shan’t ask again.Enjoy! C.
How long does one usually have to wait for a place?
Here it is/was 4 - 6 months. That was some time ago though.
Hi Jane not too sure what you mean pmr Alone . Reading these messages is slightly depressing. It amazing how different we all can be .A lady I know who is about 80 who I play table tennis with, came to me saying I had it about a year ago after a few weeks on 15 ,Doctor said how are you
Now ,her reply was I feel I could pedal to moon and back 😱 then tapped down no problem, not exactly sure how long 18 month to two years not sure .
Begging to wonder if it’s all this stress we get TAPPER TEPPER . Probably be better left alone a little
Sorry Ronzy. I didn’t mean to be depressing. By “ PMR alone” I meant that my diagnosis was just PMR. GCA came along 4 years later. Your friend sounds great.
Heck GCA seams a lot more serious than pmr ,hope I don’t get , I feel bean on a too low dose could help towards getting GCA could I be rite Thanks 🍀🍀🍀🍀
Just be aware of GCA symptoms like a really bad headache, pain in the jaw, getting worse when you chew and especially any eyesight symptoms and report these to your doctor immediately. You need to tell your doctor that your Pred dose is not controlling your symptoms and you need more.
Possibly - but if it were a risk then you would have symptoms, probably of worsening PMR, and there would be the opportunity to raise the dose. But if GCA is going to develop, the chances are that the PMR-level dose won't make much difference.
Yes ,frighteningly they say 1 in 5 developed GCA .
Not sure where you read that, but this is maybe more realistic - noting the difference between those already on Pred - which is why when you have PMR you should be aware of the symptoms of GC so you can seek medical attention.
About 1 in 20 (5%) of those on treatment for PMR -
or 7 (35%) out of 20 people with untreated PMR
are likely to develop giant cell (or temporal) arteritis, a related condition causing inflammation of arteries.
How fantastic to have someone so caring , i have really bad fatigue , the person i saw was so uninterested in what i had to say and how i felt could not be bothered even really to listen, he just was not interested . Told me it was much to early to even think of a solution and told me to come back in 6 months ! I know my dose was high , it was not me who asked to see him, it was my Rheumatologists idea ! I feel they just push me from one to another ! Im on a higher dose also.I now lower my dose myself and try to rest as much as possible when im exhausted. I am happy for you , so great to have people who want to help. My husband has a serious heart condition and his team of DRS/ Consultants are fabulous, Just unlucky on my side of things !
I think his motivation is more a fascination with his subject. A curious doctor. He draws diagrams. A clever man!
Just the type you need 😊
As a lupus friend would say: A True Detective
It most certainly is because Evan friends and family tire of us banging on a little as it does seam to tack on a big part of our lives . Yes Vevala Heathunlocked it’s a jewel of a site. You people do really care ,😍 Makes me wish I believed in heven as you would all be the meeting and greeting 😊 thanks to you all you are really appreciated 👍👍👍
🍀🍀🍀🍀🍀🍀
Wow 😵💫 how old are don’t answer if you with 😱 was he a specialist ,so to speak.Don’t care too much for them ,seam to think they are premature dinners 😝😝 I’ll leave typos on 😃 anyone guess what I meant to say .
A few years back I saw a specialist as l though I had GCA .he was so arrogant full of himself fire ring Questions at me ,dates of everything. I am absolutely hopeless with dates ,can’t eaves say what year got married l😵💫 ,I say I store facts not trivia .
Wish I new his name .as most certainly don’t want to see him again 🥵
But if I was in your shews I would grab as much prednisone as I could get out of GP
Them let the good people on here guide you
All the very best
🍀🍀🍀🍀🍀
This is so interesting - thank you for your post. I have been on prednisolone for twelve years - first for temporal arteritis, then PMR and then autoimmune hepatitis. The highest dose I have been on is 50mg and more recently between about 8mg and 20mg - up and down with my liver readings. No immunosuppressants suited me, all giving me more problems, so I ended up on just prednisolone. I didn't have terrible side effects apart from osteoporosis which is quite bad. Eventually last year I told them I would rather die of the illness than the medication. They said if that was the road I wanted to go down they would support me. It was such a relief. And so I have been reducing very slowly. I got down to 5.5mg and had a blood test which, to everyone's amazement, showed that my liver readings were almost back to normal. It does make you wonder whether pred causes more problems than are always obvious. Now I am down to 4mg but I am feeling very tired. Whether it is my illness or whether, as my consultant suggests, I am be steroid dependant, I have no idea. I won't really know until I have a blood test in May. But I feel so pleased that I am down to 4mg. I am happy to reduce very very slowly from now on but I am determined to try. I was made aware when I was first ill that this is a lifetime illness and if people do manage to get off pred, the chances are that they will be back on a high dose within a year. But it is worth a try. I hate all this medication. Good luck, I do hope the fatigue eases. Pred makes us so energetic that I suppose it will take time to get used to not having that boost.
Whatever "steroid dependent" means - that is a term they employ meaning what they want it to mean.After the time you have been on pred, your adrenal glands have been in hibernation for some time and their response to the body's demands for cortisol is blunted. It will possibly return if you reduce the last few mg slowly enough but from about 5mg and until the adrenal function wakes up, you are in a state of adrenal insufficiency which causes fatigue and other symptoms. Even if you have a low response in a synacthen test at 4mg, it may improve as you reduce further - one lady on the forum was insufficient at 5mg, better at 3mg but still insufficient and got a good result at 1.5mg.
In PMR of course there are the two aspects - managing the PMR symptoms AND the adrenal status. FOr a lot of people they run in parallel at this last stage of reducing.
PMRproAmbassador
After 14 years I think your doctor is being pretty optimistic even with that slow speed of reduction!!! You are almost certainly suffering from a very blunted adrenal response after that long and it is going to be a slow job persuading the adrenals to wake up and function again.
I think you would be better using one of our slowed tapers repeated to slow them further and also just doing 1/2mg at a time - that would at least mean you FEEL better while trying to do it!
I thought the same to be honest , I’m sure this very tired feeling and heavy legs is to do with pred coming down
If your adrenal function hasn’t caught up, you may find yourself in a bit of deficit because the Pred dose is well below supplying the level of cortisone needed for daily life until your adrenal axis makes up the difference reliably. This will be even more obvious if you have a higher demand any day you have extra physical, mental or emotional activity, even slightly. Until my adrenal function caught up, for the first time in my life I couldn’t easily get up in the mornings and had to reinstate my afternoon sleep dropped around 10mg. For me 1mg was way too much of a drop so I did 0.5mg added in by stealth rather than in one drop. Happy to report it was ok in the end.
How are you now Snazzy? I can often really relate to your posts, they are so helpful.
After so long I might try 1/4mgm drops.
Sounds very much like your adrenals complaining about waking up. I was like the sleeping beauty around 4-5mg.
Was you, I must admit had odd days when not feeling great on 5mg but nothing like this, it’s like my body saying sleep sleep sleep! Did you improve as you went down past the four mg
I actually was so bad I decided to go up to 6mg for a time. It has improved but I would be totally comatose if it hadn’t. It was an effort to lift up a fork to eat. I am not one hundred per cent but definitely improved.
I know what you mean I hung some washing out yesterday and just lifting up my arms to peg them on line was enough
Piglette are you still on the 6mg? I'm on 5.5 but I feel like hell, I don think I'm ever gettin lower on this pred!! I'm trying not to increase it as really bad abdominal discomfort and don't want to make it worse!
No I then plucked up courage and decided to reduce again. I did stay on 5mg for at least 3 months probably longer then ventured down to 4.5mg.
Currently, I have permanent lower abdominal pain (plus IBS and UTI symptoms ) which does appear as a symptom of adrenal insufficiency. Although I have been referred for a colonoscopy. I am having a blood test for Prednisalone absorption ( who knew they could do that?) I don’t think I am absorbing all of my 7 mgs coated tablets. My Endocrinologist also said don’t take them at night you get worse side effects - I pointed out the rationale, because coated tablets take a few hours to absorb. He still wants me to take them in the morning. 🤷
I have coated tablets and take them in the morning. No problem. Hope this helps ?
Try indeed to make a morning walk a daily walk. Your heart will be pumping better, your blood circulation will be better, your lungs will get more oxygen. After 3 weeks you really should see a difference. Enjoy the spring around you!
Can I say how lucky you are to have support from a good doctor, seen mine once in the last year and a referral to Rheumatology resulted in a phone call 6 months later, I was feeling okay otherwise I would have pestered,after a very slow reduction , following all the advice on here ,I came off pred for a whole 2 1/2 weeks…feeling absolutley fine in myself ( have been in such a low does for so long I think my adrenal gland was ok) but the pain across my back and shoulders was terrible…but different if that makes sense…tried to get a phone call from doctor to discuss and to discuss going to help daughter with baby with chicken pox…yeh right….so did an email request and had a receptionist phone me back…yes going to visit would be okay ( by the time i had the reply baby was on the mend) but no idea re going back on steroids.Phones up next day with an appointment to see a doctor, 19 th April, …….put myself back on 5 mg , has helped , until I see the doctor. I see on here all the tests people are having and the support , you are very lucky….going to ask for a few tests this time although will probably be a waste of time.I am in Cornwall and our surgeries are swamped, I guess like any where else where people have moved to during the pandemic , and there are horror stories every day so figured if I was okay then be greatful.
I found my brilliant Rhuematologist via PMRPro on here. She is responsible for the thorough nature of my care over the years.
1mg drop sounds far too much and unachievable.
It's so individual isn't it...thank goodness for this forum of friendship and support. I felt dreadful cutting from 9 ton8, so with support of GP went back to 9 and reduced on the DSNS 5 week taper. Now starting 9 to 8and half and feeling better , date I say more in control...psychologically...which all helps in the battle. Take courage everyone...enjoy the little things when possible. 🙏
Why by 1mg reduction?My doctor has me on half mg per month.
I couldn't cope at 10 so she has me back on 11 for a month before we try again.
Well that’s what my consultant said to do, from 5mg to 4mg reducing for three months then 4Mg to 3mg for three months etc till I’m off! It’s going to be very hard I’ve managed to do a month on 4mg but now the tiredness has kicked in
Hi Eternity6, I am down to 5mgs after 18 months but am struggling. Using the tapering method, 7mg 6 days, 5mg 1, then 7mg 5 days 5mg 2 and so on. Just had COVID so that didn’t help, but only had a mild dose after 3 jabs and a booster, was clear after 5 days. Now concentrating on taper again, and hoping Adrenalin will return slowly.Good luck with your tapering, we all have different and varied journeys with or without help from the medics. I have a new GP who was impressed I was tuned into my Circadian clock and was using Melatonin pills to help my sleep cycle( not available on prescription but are on internet) He just said keep doing all you are doing, it seems to be working.
Oh good luck to you grannyjane, I think it’s going to be a bit of a battle for me but I’m going to see how I get on, I did a walk this morning only for half hour! ( tired now) my blood test is due in just under 3 weeks so if I can carry on to get past that then my consultant will see how I’m doing and obv advise given the results!
Melatonin and pred are not recommended bedfellows as there is a potential interaction whereby the melatonin makes pred (and other immunosuppressant medication) less effective.
Fatigue kicked in when I reduced below 5mg, currently 4mg reducing to 3.5mg in a week’s time using Dorset Lady’s slow taper (I’d recommend her plan and limiting to 0.5mg ). I’m ok in the morning, but fatigue comes on around 4 in the afternoon like clockwork. I mentioned this to my GP in passing and she organised blood tests. Her nurse practitioner talked it through and wasn’t alarmed by the results. I’m assuming the fatigue is adrenal related and something I’ll have to accept as I reduce Steroids - adrenal recovery isn’t a light switch. I’ve been on steroids 2yrs 4 months.
Yes this is what I’m thinking it’s adrenal related I’ve been on steriods approx 14 years good luck to you
I have the same daily 4pm fatigue. Did your blood tests indicate adrenal function? I’ve had plenty of blood tests but never related to tiredness.
Hey! I've been trying also to "wean" down my 16year dosing of Prednisolone. I am currently taking a "maintenance" dose (so they call it) of 4mgs daily. I am dropping 1mg EVERY other day and so far, so good. I couldn't do 1mg fully so it was suggested to go low, go slow and do it every other day for the first month then try a full mg for a full month or two. I was told there was no rush and IF I feel it to be too uncomfortable take it as slow as my body will accept. Listen to your body and take it slow and so far...I am doing "ok" with very little swelling & fatigue. GOOD luck! I hope we can do it. I have a friend who was on it for 20 years and was able to discontinue using it BUT she told me it took her 3 years. She said she basically had to "wake up" her Adrenal Gland.
Keep me posted on how you are doing (if you don't mind). I am feeling uncertain and a bit worried about coming off BUT it's something I feel I NEED to do. I feel it no longer does anything given I take biologics plus the side effects really have me on edge.
It is almost certainly doing something - replacing normal adrenal function even if it isn't doing anything for PMR.
I was CLEARLY referring to treating my illnesses, thus why I mentioned "biologics". Taking steroids for so many years has shut down my adrenal glands' function and the production of cortisol (which does that "temporarily"). My lack of ADRENAL functions is why (in my case) the "go low and slow" wean and (with God's grace), hopefully waking up that function. I enjoy hearing the positive outcomes from others who have taken steroids for as many years (in some cases MORE years) than I have and were successful it's wonderful!!😃
It's surprising sometimes how many years some of us have been on steroids...and very encouraging when they get off!...👍
YES! Gives me hope. I was told that my chances are slim BUT I have faith, I am taking it nice and slow, and visiting/reading the POSITIVE and encouraging posts! Unfortunately, there are a few here that make me feel very unwelcomed and judged rather harshly. (My bad as I control how someone makes me feel or react)! I don't visit as much as I would like to because of that. This is supposed to be a "supportive" community website. We are all here for the same reasons (as different or as the same as our medical conditions are, and from UK to the US)...not to feel so alone, singled out, with a mutual exchange of help and conversation based on a shared understanding, RESPECT, and mutual empowerment between people in similar situations.
I stayed on 2 mg for 9 months and just reduced .25 mg making my daily dose 1.75 mg-so far so good. I plan on reducing .25 mg every 2-3 months provided my symptoms don't change although if I need to remain on low dose prednisone indefinitely, I am totally fine with that. I use a pill cutter to split 2.5 mg and 1 mg pills and then a very sharp paring knife to further cut pill if needed.
Good Luck!
I was on 3 1/2 mgs for over a year and finally got to 3 mgs this year using Dorset Lady's plan. I reduced by 1/2 mgs starting at 10 mgs. I was diagnosed with PMR , given 15 mgs pred the first of 2016 so that makes 6 years on pred. I stay on each reduction a long time to avoid flares. And I highly recommend DL's reduction plan.
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