If the Rheumatologist is to be believed and to quote him 'my PMR/GCA has now well and truly gone and in fact GCA only lasts two years' I need to wean off steroids as soon as possible 1 mg per month. This being the case in order to overcome the withdrawal symptoms of Prednisolone is there any reason why I can't take them before I go to bed so that the symptoms are dealt with before I wake. I tried it at the week-end and the symptoms appeared to have decreased a lot but unfortunately the other problem I have is the other medication I have to take first thing in the morning (hydroxycarbamide). This gives me symptoms worse than the Prednisolone. So does anyone know whether I would have any adverse affect if I took a double dose of Prednisolone every other day or any other ideas to relieve the horrible symptoms, feeling nauseous, lightheaded, fatigue etc etc. GP just Shrugged his shoulders and said I would have to stick with it until I have weaned off Prednisolone. I am now on 6.5 . It has taken me 2 months to reduce the half mg.
It appears the pains in my back and shoulders are caused by lumbar and cervical spondylosis for which he said there is no treatment!!!
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There are many folks on the site who prefer to take Prednisone at night and say it helps. Afraid I don’t know about hydroxycarbamide. You could ask your pharmacist if it interacts with Pred.
Please be cautious of weaning too fast as your Rheumatologist may think GCA is done but the GCA may not think so. 2years is the minimum, it frequently lasts much longer. The DSNS weaning method that many here use minimizes the chance of a flare.
Have you tried yogurt with Pred? May find that manages the stomach upset. Hope you figure it out soon.
Hi PMR2011. I consulted the Pharmacist 12 months ago when I started taking Hydrea and yes there are interactions. Unfortunately I have to take Hydrea for life so I am keen to get off Pred ASAP. I am using the DSNS method but I am still getting severe withdraw al symptoms. Things were going quite smoothly until April when I had a chest infection and had to go back up to 10 again for a few days. Now I don't seem to reduce however slowly I try and do it. Hence the reason I asked whether anyone had any views on taking Pred every other day. Many thanks for your comments.
Well glad your Rheumy is so sure your PMR/GCA has gone! But then he’s not the one with it is he?
The only way to be 100% sure is to get to zero, be off Pred for a number of months without any resurfacing of symptoms- then you can say it’s gone!
As for only lasting 2 years - yeah, right!
If you try taking Pred at night for, say, a week rather than just a weekend, and you don’t feel any worse - even a little better - then why not. It’s what suits you really.
The fatigue, nausea etc is more likely to be related to your adrenal glands not Pred, and some recommend taking double dose every other day to help boost them into working again - have a look at this link -
Hi DL. Many thanks for your reply. I have read the article you mentioned. Very interesting reading. I am certainly going to give the every other day a go to see whether it will boost my adrenal glands, which I know from a recent Synacthen test are not working properly. Yes you are correct, it's my underactive adrenal glands that are giving me the problems and not the Pred, together with the Hydrea, as the Pharmacist said not a good combination.
As the others said, only you know for sure if the PMR/GCA is gone. If your pain increases or remains the same as you continue to taper I think that will tell you whether your doctor's diagnosis of spondylosis is the answer or not. I believe alternate day dosing is not recommended for PMR or GCA although it is used for some other diseases where pred is the treatment. Best wishes.
Hi Dorset Lady you just mentioned during your GCA years ! How long did they last are you fully recovered now? I was diagnosed 19 mths ago and I have experienced every side effect known to man ,exaggerating slightly. I have reduced to 6 mg pred from 60
I have had a few TIAs and been informed by optician that I have cateracat the back of my eye.
I had 2 heart attacks 10 years ago also breast cancer 7 years ago .Both conditions were treated successfully and only on low dose BP medication statins and Aspirin.
Given all clear for the cancer.
I cannot wait to get off these steroids
As I can honestly say I have never felt so ill in my life.
Sorry to be such a misery but sometimes feel like the medical profession just put you on dangerous medication and leave you to get on with it
I was on Pred for about 4 and half years (no added steroid sparer which some are prescribed) - with 18 months prior to that undiagnosed….
..started at 80mg due to slight loss, and although high doses of steroids weren’t that pleasant have to say, didn’t cause that much of an issue…and at no time on them did I feel ill.
I have been in remission now since September 2016…since then I have had 3 joint replacement surgeries ( nothing to do with GCA or Pred) and feel really good. Hopefully you will get there too. 🌸
Have a look at this to see there is life after GCA and Pred -
It is a very powerful drug, yes, but used properly and carefully it isn't dangerous, it saves lives and, in our context, it saves sight, There are some unpleasant adverse effects but with a couple of exceptions none of them are worse than the ultimate adverse effects of GCA - total loss of vision and even death from stroke - and most can be managed. I "only" have PMR so was on lower doses - but it gave me my life back after 5 years of PMR pain and disability that hadn't been diagnosed.
So sorry if I offended anyone when I referred to prednisone as poison.However my Rheumatologist called it that at my last consultation two weeks ago. She agreed with me that getting off Pred was of paramount importance due to the significant health issues it was causing me to experience .Her exact words "The sooner you stop putting poison into your system the better" I even said at that point "If you tell me to stop taking them immediately I will"
To which she replied "No I would never recommend you stop it immediately"
She suggested I take paracetamol every day and amitriptyline to help me sleep.
So as you can see I am a tad apprehensive.Regards Cantfidaname
That is quite appalling, she should be reported for frightening a patient like that. How on earth can you feel confident about taking medicine when a doctor tells you they are prescribing “poison”. What is wrong with these people?
It is the only drug that is generally available to us to manage PMR - and she is doing no-one any favours telling them it is poison. Paracetamol does nothing for PMR and it has its own adverse effects - added to which there is a very narrow gap between the therapeutic dose for the things it does work for and overdose - and having watched someone die of paracetamol overdose , I can tell you it is NOT a nice way to go. If you take paracetamol at the recommended daily dose over a long period - don't drink, If paracetamol helps the pain there must be considerable doubt as to whether it is really PMR - and if it isn't, there is likely to be a better option than pred.
Does she tell her RA patients that methotrexate is a poison and they should stop it? Or any of the other DMARDs? Why do they diagnose a patient with PMR and then not use the only drug available to most of us and scare patients with their doom and gloom? As piglette says - I would report her. It isn't professional. piglette and I worked in the pharmaceutical world for many years - met a lot worse than pred there!
Hi HeronNS. Many thanks for your comments. When I was on the high doses of Pred 10mg and above I had no pain from the Spondylosis, it's only recently since reducing that the pain has returned, especially in the neck. I am therefore assuming that PMR/GCA has gone into remission so will give the every other day a go to see whether there is any adverse affect.
Hi HeronNS and DL. Certainly at the beginning of my GCA I would not have thought of deviating from the strict regime of Prednisolone, but now after eight years and no GCA symptoms I am willing to give the every other day a try. Thank you both for your input. You have certainly provided me with more help and support than either Rheumy or GP. I will give it a try for a month so will let you know the outcome.
If you have no symptoms I think your idea is fine. I was assuming you had PMR as well. Sorry! And best wishes, too. I hope you are on the final steps to club zero!
I was diagnosed with PMR before my GCA and sight loss but then the high doses of Prednisone for the GCA made the PMR very insignificant if that makes sense. It's been quite a struggle for 8 years with very little support except for this forum. Many thanks once again.
He thinks does he? Time he spoke to a lot of other patients whose PMR/GCA didn't go in 2 years!
Taking pred as alternate day dosing is not generally felt to be useful in PMR/GCA as the antiinflammatory effect doesn't last long enough. Of course - if he is right and the GCA is gone then you could switch to ADD and it is felt to encourage the return of normal adrenal function. However - I used ADD when I first took pred and it was fine for me but I officially only have PMR. The reason I switched to daily dosing was that I had a flare with query GCA symptoms. I had never got below 17mg/2 days of pred and wondered if it were the ADD - but for a long time I couldn't on daily dosing either! The only way is to try. And there is also no real reason why you can't take the pred at night - as long as it doesn't stop you sleeping.
My pharmacist recommended taking Pred in the mornings because he said that is when the body naturally produces adrenaline. (I do rate him, the pharmacy ring me up a week and then after two weeks of a new prescription, to see how I am getting on with the new medication).
That is relevant for short courses of pred as it then has a minimum impact on adrenal function - but we are on pred for so long or at such high doses that we will have adrenal suppression anyway and then you should use the pred dose as it best works for you. It makes little difference when you take it in this case...
Hi I'm new here but have had PMR since 2014 and GCA in 2016. In some respects, similar, I visited the Rheumatologist in February, taking 4mgs pred, in a fair bit of pain and was told the PMR had gone (based on CrP test). That the PMR identical pain I was experiencing was due to...Chronic Fatigue, Chronic Pain Syndrome, M.E. or Fibromyalgia all of which would respond to Pain management. The Pred. would be making no difference at all at the 4mg level and I could stop immediately but probably better over a month.The ensuing pain was pretty unbelievable and not alleviated by the amitryptaline/codeine combo prescribed by my despairing doc. who suggested I see another doc as she felt clueless. Another doc, another bloodtest - back on 15mgs Pred. Life possible again.
I wondered what your Rheumatologist based his /her conclusion on - duration and ...how was the pain you have diagnosed. I was told categorically that a low CrP meant no PMR/GCA whereas my pain told me otherwise.
I do hope you find a solution to what sounds a very tricky problem. I would find nightly pred.difficult as already need to be hit on the head by zopiclone!
I had a rheumy that went by test readings...he has sent me a letter yesterday giving up on me.. (thank goodness) and saying to my doctor he is leaving it to me to adjust the pred as I want….
He was getting nowhere with me by following his strict 2 years low crp readings and PMR is gone routine...…..
There are too many like these rheumies around I`m afraid....will now work with my doctor…….
Thank you everyone for your kind thoughts and comments. Rheumy is basing his decision on the fact that I have been on Pred for 8 years. Nothing more no blood results no thoughts as to how I felt. Yesterday however I had quite a surprise. My medical center phoned asking me to come and see a doctor tomorrow. She didn't know why nor do I. I will keep you up to date and tell you the outcome. Many thanks to everyone.
Just saw my rhuemmy an hour ago. Told him I was feeling better as I was taking the pred. at night. He carefully explained that the natural body manufactures cortisol in the early AM and the idea is to stay as close to natural function as possible. He has asked me to go back to AM and if I really can't stand it to split the dose between morning and night
As I said - it is relevant in short courses of pred, not for the time we are on it. The optimum time to take pred to avoid morning stiffness is 2am - if you can be bothered. That is early morning...
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