When you decrease dose of prednisone do you get any withdrawals. Iv gone fine to 16 from 17,5 and feel really lightheaded. 3 days down lightheaded today. Maybe this is a normal reaction. Feel tired but ok apart from that.
Decreased dose of prednisone : When you decrease... - PMRGCAuk
Decreased dose of prednisone
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Uglow
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I used to get withdrawal every time and often spent time in bed feeling weak and wobbly, headachey, achey, etc. I used to get it somewhere between day 1 and 4 after dropping the dose. It lasted a few days but no longer than a week.
Thank you Snazzy, I’ve had exactly this, this week, going from 15 to 14…..so it’s reassuring that it’ll hopefully settle down 🤞
Same x
Others with more knowledge will need to fully answer this for you, but I can tell you that every time I taper I also suffer withdrawal effects that can vary depending on dose. I nearly always experience head pain and some aching in shoulders and neck. Also can feel a bit 'wobbly as if I have jelly legs. Lasts for a few days and then settles again. I'm sure there will be others on the forum who also experience similar and some with completely different withdrawal symptoms. We all have our own unique structure to this condition and it can sometimes be a bit confusing as to what's going on. You'll learn to recognise what's normal for you and what may need further intervention. It's not as scary as you might think though.
I've given up thinking "normal" and now think NEW normal although there is actually NO normal new or otherwise. If you think back to when you didn't have PMR or GCA or some other vasculitis or other inflammatory disease you might have periods of stability and then an upset, or illness or onset of a virus and the normal was no longer there. What this disease does uniquely is completely unhinge us from references which are reliable and that's unsettling because we constantly have to adjust to it especially it seems when tapering . Our preferences are an irrelevance. It's like being led around on a lead.
I visualized the PMR/pred journey as the patient attempting to balance two dragons: polymyalgia and prednisone. Although I, like all of us, have had to accept the limitations of PMR I have to say I never really thought about it as being in charge as such. At least not after I was diagnosed and started on effective treatment. I wrote a post about my feelings, and in retrospect I think I looked on pred as an ally, albeit a dangerous one, which enabled me to stay in charge, not PMR. Certainly my life is very different now, but I like to think in some ways it has improved, or, more accurately, that I have improved!
healthunlocked.com/pmrgcauk...
I am trying to get to grips with it. I can go from feeling elated and in control to awful downs. I’m am scared I don’t like what it’s stolen from me! Every day poses a new challenge even if done are small. How far can I walk! How tired am I, just do unpredictable that’s what scares me. I tell myself every day that I eill be a lucky one and will be 10000 times better in a another year 🙏🙏🙏🙏🙏
beautiful and insightful writing. Thankyou HeronNS
Kendrew
OOH so sorry kendrew...I read it in Heron's and initially credited you but edited it when I saw it in Heron's... Humble apologies but admiration still.
Thanks Heron, now I'm confused. Looks like you did write the story so credit back to you. I'm off for a sobering drink. Think I'm having a senior moment 
I did write the story, but Kendrew wrote a very nice reply in this thread and I thought that is what you meant to reply to! If we were all in the same room it would be time for a group hug - and all of us off to have a cuppa!
Here's a quick one for you...just penned re. your story.
Thoughts drift, mind shift, never knowing , need a lift
Quicksand, need a hand, going under, help to stand.
Firm ground, hear that sound, some-one calling, now I’m found
Beautiful words
hard for someone as gabby as me at times to keep it short. Sort of precis in poetry. Like haiku and love doggerel. Wife says it's not poetry but it is fun.
Well keep it up. It will keep you sane. When I was teaching I wrote drama productions in verse, usually environmental, and the kids loved it. Charles Clover came to watch one about saving the oceans.
recognition and I would have loved to have been taught that way, but that's a whole other life.
If only we could all go have a cuppa together it would be joyous. I’m in USA and love your word cuppa so just had to use it.
and cycli , I'm about to have one now. Slightly early elevenses for me, only 10:30 as I write. Was about to go out for my walk but between leaving my unit and opening the door to the outside the rain came bucketing down, and with high winds (remnants of tropical storm Theresa) I thought better of it, and spent 15-20 minutes walking briskly along the long corridors of our floor.
It seems so hard to get going in the mornings and I don't know if others are finding the same? Seems worse since the pandemic and changes to routine. Had I got up as I used to be able to I'd have had an hour's walk and been safely home before the rain arrived!
PS, OonaSt, I've lived in Canada since a young child, but "cuppa" and "elevenses" reflect family connections and early years as a Brit in "the colonies" and the UK. Used to be fairly bilingual 
This is the first time i have read this, it was so true and so moving it made me cry. you got it in one . Thank you it helped me feel less alone on this sad journey and im sure many others xx🌷
I have just read your post HeronNS. Wow what a metaphor and so true as I take my Covid test this morning in preparation for my cataract operation. Pred has been with me for six years, nearly disappearing twice then back to visit with a vengeance. I don’t resent the side effects, just celebrate the relief and prepare myself for a slow withdrawal. Wonderful writing. Thank you.
Hope the cataract op goes well. It seems to be quite a tolerable procedure these days. Best wishes.
I agree that it does seem at times that we've lost all control of our health and well-being. However, I've discovered that the initial feeling of helplessness and almost inescapable need to surrender to everything PMR throws at us does eventually transition into the ability to manage the condition more effectively and to develop more stable thought processes when making some of the more difficult choices and decisions necessary. Don't get me wrong....life definitely has to be tweaked and adjustments have to be made, but the more familiar we make ourselves with both our condition and our meds, the easier it all becomes.
Once we accept our 'new normal' we can start to work on improving it. It's not easy but it's not impossible either. We can facilitate this by educating ourselves as much as possible ....knowledge is power!
I'm 2½yrs into my diagnosis and although I still have my challenges, life is still good, I still have much to be thankful for and I truly feel blessed that I've not been diagnosed with something far worse! Supporting each other here provides some of the best remedial therapy available and my 'new normal' has taught me much about myself....and others!
You sounded quite fed up and there's often good cause to be, but hopefully something I've said will help you feel a bit more hopeful. Hope is the gateway to healing.
Thanks Kendrew. Fed up is probably right. I'm over all the worst and thanks to PMRpro for genuinely pointing out that I was actually grieving for a lost life at the beginning. That really helped clear the decks. I am looking into how to maximise the opportunities this drug presents alongside being aware and dealing with the downsides. The problem is though that we are not in charge. Reference the constant worry about flares and when or if they might occur. Our thoughts are always now about how not to get one or how to minimise the effect and if not anticipating one what's the best way to zonk it when we have one. I have always thought that I had control but this has made me realise that we are reactive rather than proactive in this relationship. I don't consider it a partnership because I would never in any lifetime choose this as a partner.
I think you will find your feelings about it will change, mature maybe? There will even come a point where you realise that there are a lot worse things to have than PMR and GCA!
hope so. You are talking to a control freak though.
Ah well - maybe, just maybe, that will be the positive that comes out of PMR/GCA 
It was something I learned very early on in parenthood. My first baby was 8+ weeks prem (the second was only 5 weeks early) and went straight to NICU for the next 6 weeks. You learn very quickly that you are neither indispensable nor in control!!
Sorry if i butt in, but this is me ! I am the one thats normally in control , not anymore and i just can not stand it ! But saying that I am trying to go with the flow to make life easier xx
butt away Viv54..totally get it. sucks. but like you and everyone else trying to work with it if it will allow me.
• in reply toViv54
PMR is difficult, painful, can make one miserable but I think I would rather almost anything to getting cancer again. It’s all relative and a matter of degree I suppose.
Viv54• in reply to
Absolutely, it really puts things into perspective🌹
It just occurred to me that what actually helped me deal with PMR/pred was a (mistaken) diagnosis of osteoporosis. By then I was feeling fine, thanks to pred, and I focused all my energy on trying to find a way to improve my bones without taking any of the scary bone meds. Now that I think about it, this took my attention away from what PMR/pred allowed or did not allow me to do (although truth be told I was so much better with pred I was a pretty happy camper at the time) and gave me something to focus on which I rapidly learned I could control. I was so keen I shared my story with all and sundry!
Also, learning about and following a slow taper method was a way to control matters. Even keeping a record of the daily dose of pred in a little diary was helpful. We can't control the fact we have PMR and we need a certain medication in order to function, but we can control our attitude and find creative ways to channel our energy. Not to say I haven't had many moments of despair, but I've learned ways to deflect the energy which can go into despair and depression into other channels. They say the good die young. I've obviously been a very slow learner.
When I was first given Pred it took all my pain away, I was like a kid again !.My energy levels were amazing !.I was so happy , when I look back on my experience it was a false euphoria, but I didn't know this at the time, I went back to long walks doing so much with my friends and family.I really thought I was cured, but meanwhile it was just masking all my other problems. I was so naive ! I was not told and and sad to say I didn't look into it properly ! Yes I needed to take Pred but never for as long as I was left on it. So now once again the start of the journey begins .
they say we live and learn but sometimes it's hard because we learn too late and then have to play catch up. Part of life I guess.
I wonder if you could write an outline of your PMR/pred experience in your profile? I was going to look through your posts to find out why you said you had been left on pred too long, but.... Did you mean you weren't given proper guidance re tapering?
Hi , it's straightforward really , when I began taking pred it was meant to be till things calmed down, they did and after a few months I came off them .Was fine for a few weeks then my shooting pains came back with a vengeance. So I went back on pred, kept going back to my GP, telling her it was not getting better, I said I wanted to come off them so she gave me a tapering sheet and left me to it ! Then she was off on maternity leave and then Covid came along. So for months I was left with a bag of pred .Until I was seen by a Rheumatologist, she really didn't do much so passed me on to a Endocrinologist. To see what else is going on with me. There is no continuity of care hence I'm in this position. Plus until today I have no mentioned that I have stenosis of the spine, plus Osteoarthritis in my pelvis and both hips .
It’s tough enough and without true guidance makes it even more difficult. You kinda feel in limbo hoping your actions are the right ones.
courage Viv54. Fresh start and with help from PMRpro and others maybe, just maybe you will find that "sweet spot" as some say and then get it sorted. It seems that is the way. Sounds like some could have been affected by pred. also. That's almost dereliction of duty of care from ALL the professionals and actionable. How much longer are all you tolerant accommodating sufferers going to take until you realise that these people are being paid very handsomely by YOU the tax payer for their pathetic service and advice. I say again. IT IS YOUR BODY. ADVOCATE FOR YOURSELF. They don't understand and never will till they have felt it.
I've always believed that I must have been horrible in a previous life cos however hard I've tried doing stupid and sometimes dangerous things I've always been preserved. Reckon the devil and god have a pact and all their spare angels have been told to keep an eye out and keep me down here because they are not ready for the upset I'd cause them.
oh, about that maturing bit,!!!!!!!!!! Daughter and Wife both agree there, NO chance is their verdict. I'll probably never grow up in the "normal" sense we seem to know. If someone is caring and daft enough to erect a stone on my grave I hope they chisel 2 words. HAS POTENTIAL (present tense)
Does anyone recover complaints 😢
Completely
The majority do sooner or later. I have several friends on another forum who are all recovered and back to their normal lives. jinasc on here has been in remission from GCA for (I think) 14 years. Remember the peole on the forum are probably exceptional and also the membership is constantly changing as people get to very low doses or even off pred altogetheer - and go away to get on with life - while new people join in the early stages of their journey,
Uglow , click on more below your post and you can edit your original post and correct spelling or wrong meaning...I'm doing it all the time and saves putting another box. I do like the idea of recovering complaints though. The question is what to do with them when you have collected them all
I have…..apart from what happened before diagnosis- but that was never going to change!
But I decided early days i wasn’t going to wallow in self pity and that it wasn’t going to dominate the rest of my life……
…there are a lot of worse things that could have happened to me.
Early days it might seem impossible that normal life will ever return, but it does…
early days it is...I'm going to stop anticipating end scenario and take it as it comes. Not the way my brain is pre-programmed though. I can't actually make it do that. Never have. It's alway questioning and I cannot, nor do I really want to stop it. Born that way. When you question everything always, you want answers. When you can't get them you search, when nothing comes up you think how you could get them, when the sources don't exist you seek ways to facilitate them, and so on. I can't stop it. It is how I have been since I can remember and that's about 1.5yrs old. Think my first3 years nightmares are dreams of actually being born and that apparently took 12 hrs my mother said.
I’m not saying you shouldn’t question things, it’s human nature to surely…but sometimes you have to accept there isn’t a straightforward simple answer. You may not like the fact there is no answer, or you may not like the answer…but that’s life! If there isn’t, then let it go, if you keep nagging at it like a dog with a bone you just wear yourself out…and with GCA or PMR that’s not advisable.
You may find that your illness makes you think differently about life, and that’s not always a bad thing.
It's good advice and I do try believe me. Was told decades ago that I had the potential to be an ascetic or a hedonist and my salvation was to chart a way between. Still there struggling. Ever read Narziss and goldmund by Hermann Hess ? I try to be nearer Goldmund.
I read it many years ago; one of the inspirations for my spiritual path. Meditation is probably the most effective and accessible way of stilling the mind. Lots of different types suit to different types of people. Loving-kindness meditation is really good for us because it is very de-stressing and sends positive vibes through our bodies, calming those wayward immune systems down - in my mind at least.
I’m constantly trying to reset my mental health and am about to embark on hypnosis. It really helped a fellow fybromyalgia sufferer x
That'll be interesting; I think, in theory, the unconscious mind is able to communicate with the body. X
No harm in trying and I’m one of those people that suggested things usually sink in. Not always got the better 😂😂😂😂
was into hermann hess in my 20's , the IChing and all sorts. Definitely more yung than freud but prefer carl popper. Leaning now towards Taoism manage what's there rather than change the world and for stability live and let live you can't really beat buddhism. I'm not into any ism or religion. self-reliant and content.
thinking more on this, that there may not be a simple straightforward answer doesn't ever phase me. It actually excites me and gets me thinking around the corners. That's how my mind works. No problem exists that there isn't a possible solution, it's the search that makes it all worthwhile, like the destination isn't always the goal but the journey, and that's how I am now looking at GCA/PMR. It's an unknown and there are nuggets of good which come with the dross of bad. One of which is this Forum and the people on here. Keep doing what you can it's much appreciated.
Sorry again for butting in, but how long do you call early days ? Mine seems to be going on forever ?
early days for me Viv is 3 months and I'm still at these crossroads. Wanting not to have it, having it but being led by the nose ring, pulling back and then realising that's not the best approach so looking to see where I'm being led and trying to lean in the direction that suits me best because I cant stop the lead from pulling me.
Personally, first few months, but first 18 months was eventful.
If you know my background I had a lot going on which probably put the whole GCA/Pred experience into context.
Sorry to repeat myself (and I’m not wanting sympathy), but 18 months without diagnosis steadily getting more fatigued and in constant pain, trying to care for hubby who following a triple bypass (initially good for a few years) but by then having quite severe angina attacks again and in & out of hospital.
Me trying to come to terms with right eye sight loss, and the implications of that for both of us. No family close by - son 200 miles away, daughter 11,000!
Six months after my diagnosis, my hubby really went downhill, and despite being at GPs almost weekly and a couple of hospital stays eventually got a very late diagnosis of terminal liver cancer.
Pred gave me almost instant relief from pain, saved my remaining eye and the strength to get through the first 18months (the side effects fortunately were manageable, but to be honest I didn’t have the time to worry about them)….
I’m not belittling any one else’s side effects or their difficulties in coming to terms with PMR or GCA, but honestly losing my soul mate of almost 50 years in the midst of that put my whole GCA journey into perspective.
That’s a tough time! And we all know this site is not about sympathy it s about a mutual understanding of a disease not many people understand. It’s a fact that even something more major happens somethings blur into the background but still remain hard. You have supported us all on here and I for one am extremely grateful that you do even with your own journey to endure. Thank you Dorsey Lady. Have a good day. X
Ty. Think my post GCA years with arthritis has probably been more difficult- but with 3 replacement joints and almost (!) pain free now, I’m on the up and enjoying life! So there is hope after GCA and/or PMR, but as stated many times there aren’t that many of us around to tell the tale. Once recovered, most sail off into the sunset
That's a packet of woe enough to sink anyone DL. I know just how depressingly low I felt just from the singular effect the two had on me and I was genuinely ready for my maker because I really had no answer, no solution, wasn't even thinking straight, could hardly crawl and nothing would stop the pain in my head which was splitting 18 hrs out of each day. If my wife was terminal and I'd lost my sight I honestly don't know how I would have reacted so whilst I can't understand I can admire your fortitude.
Come from a long line of strong women - and believe that life can and does get better even through the hard times…
I’m not saying I wouldn’t rather have both in my life right now - but can’t do anything about either, so make the most of what I have - which is 2 fantastic children, 4 lovely grandchildren, new joints, and another trip to New Zealand to see daughter when Covid allows.
A few days before he died, hubby told me to get out and enjoy life as much as I could, not to sit at home and mope! So all I’m doing, I’m doing for him as well!
Viking Goddesses never know when to stop🤦🏻♀️
I’m not alone, there are a lot on here who are going through tough times, but make time for others.
U’re an inspiration DL ❤️
hi there. Just been back to read profile...how are you progressing since that time Carriemetz? This post has expanded in multiple ways and has hit a nerve. Hope you are well.
A fellow warrior💕
It depends on the person - and a quick scan of your past posts suggests to me that you are extending what I would call early days by your fighting to lower the pred dose which is causing flares and other problems.
The first 18 months of PMR/GCA are probably the hardest for most people as flares are very common. Flares are due to one thing and one alone: the dose of pred you are on is not enough to manage the inflammation being created by the disease activity. There are two reasons for that though: you have reduced the dose of pred too far and it is now not enough to manage the daily drip of inflammation being created OR the actual underlying disease has ramped up in activity for some reason and is creating more inflammation. By far the more common is the first.
When you constantly try to push the dose lower than you need at present you cause flares in symptoms - and the reaction is to increase the dose to deal with them. Doctors and patients all do it and all too often they go too far in the other direction - many doctors will put the patient back to their starting dose, adding to the total dose problem and getting them into a yoyo situation. This is the worst possible thing to do - for some reason yoyoing the dose often results in needing more and more to control the symptoms. It seems to work far better if you go slowly and carefully so that you see blood markers and/or symptoms creeping up and are able to go back to the last dose that WAS enough before the flare gets hold. You need to stay at any new dose for 3-4 weeks to be sure it is still enough and you need to reduce in small steps or you overshoot. It may sound slow - but it works better than being all gung-ho and pushing it, having a flare and struggling to contain it. It only takes a few days of a higher dose to cancel out all the perceived advantage of the lower doses and then you still have to reduce again, always at a slightly higher dose than if you hadn't flared.
How long the "early days" period lasts depends to a great extent on how soon you accept that you aren't in charge, PMR is, and that slow and steady wins the race.
You must get a little tired of saying this Pro! But it’s always true, and always helpful. Thanx.
Never tire of the truth
So much of what you say is true, I have been on my last dose of 6 for over 2 months .I thought it would be safe to try to reduce by half a mg .My fatigue was not as bad, meaning I was going a lot longer with out falling asleep and my energy was slightly better. So I thought it was time for the next step !As I said I'm waiting for a Pet Scan , so trying my best for it to work. I'm now going to do Dorset Ladies plan .If I'm not down to the level the Endocrinologist wants. I will cancel my scan, as im not going to waste everyone's time and the NHS money. I was starting to feel positive, but can feel I'm becoming low again as an finding it hard to control my other illnesses on top of PMR. Such a mess .Thank you once again 🌹
You don;t say much about your other problems on your profile - maybe others have similar things to try to balance with PMR and pred who could make some suggestions if you posted with an outline and what you find difficult?
Forgot to say - just a reminder that you aren't heading relentlessly for zero, you are looking for the lowest effective dose AT THIS TIME. If that is 6mg, it is 6mg. It doesn't mean you won't get lower, just not yet. And the fact your were starting to feel less tired is a good sign - you are low enough a dose already to poke the adrenals into activity and they are starting to catch up.
Thanks I really appreciate your input and advice. Btw my other illnesses are I have stenosis of the spine, which causes acute pain ,plus Osteoarthritis in my pelvis and both hips.They can not give me new hips as my spine would not take the op, plus to much damage to the spine to do anything now. So in one way or another I'm a wreck !😊
That is something of a nasty mix isn't it. I know there have been others with spinal stenosis but not sure in combo with hip OA.
Viv54, you may feel wrecked by all this BUT you are NOT a wreck. It is in the spirit and head we stay rooted and you clearly see the positives. A good example for us all.
Sorry for another butt in! I've been on Pred for coming up to a year. Wasn't too bad in the early days, in fact I could still walk quite well. But for the past six months at least I've been hardly able to walk at all, and it seems to be getting worse. I'm so wobbly I'm really afraid of losing my balance completely. I sometimes do, but so far haven't fallen. My hands shake really badly whenever I try to do anything at all. All the GPs are doing is to refer me to a "fatigue service". However, at least I have almost no pain any more.
Horrible, I wish we had a Fatigue service ! Would you let us know what it entails please?
Fatigue is one of hardest symptoms Iv dealt with. 11.5 hours sleep last night still feelSooo tired.
Most certainly/
Really good description...
If you read your original post Uglow I think you will see that you have Increased from 16 to 17.5mg dose NOT Decreased. Maybe that's why you are lightheaded. Just a thought.
not what you wrote
Iv gone fine! Should read Iv gone down sorry
I gone from 15 to 12.5 mg and told I should not have had it in the 1st place! Thank goodness we can visit the doctors now for face to face appointment.
I’m going down 1.5 at a time even that scares me lol
yes uglow, but it seems that the lower you are the harder it is so be careful.
Everyone is different. Keep hydrated and eat well and rest if you can. When I withdrew completely from prednisone I felt like I was losing my mind on top of physical withdrawal symptoms. My chemist advised this was often the case for people. I had to be put back on it and then withdrew on a very slowly taper. All the best to you 💚✌️
Uglow I have been on Pred since April and I find that every time I make a change with it I feel headachy, light headed and crappy for a few days. I am finding .5mg only at a time helps aleviate some of the withdrawal symptoms for me.
Well done for decreasing , keep going . I have felt more tired for a couple of days but then it did get better . Obviously your blood tests will tell if your inflammatory markers are correct .Prednisolone gives you so many side effects that the sooner you get rid of it the better . I have developed gallstones now from putting so much weight around the middle of my tummy . Now I have had to change my diet to a very low fat diet as a result . Not ideal !
Keep going , decrease as much as you can ! Keep going ! Best wishes
I will but I am afraid of allSide effects I read. At last I have an appointment for a rheumatologist Oct I’m
Praying they can guide me through this murky journey.
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