I have suffered from GCA for many years and know what a flare is and how to go up by 5mgs of prednisolone etc. However I was downgraded to low-grade vasculitis due to the last scan of two years ago. I was also told there was only a residual sign of GCA showing and I was to proceed with prednisolone withdrawal which I have struggled with.
I had been on 9mgs for months but about ten days ago took a whack and have been unwell ever since. I have been creeping up slowly each day and now at 12 mgs but still unwell. Not sure how you should treat prednisolone withdrawal versus a flare as the symptoms, when unwell, are so similar. Should I have gone up by 5 mgs and treated it just like a flare is the basic question? Any advice is most welcome. I have been on prednisolone now for over 12 years.
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Stkeyna
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I'm afraid I'm not clear about what you mean by steroid withdrawal? Do you mean the process of tapering off the dose of pred which normally you would have been doing the whole time or do you mean the symptoms of reducing the pred dose? And what do you mean by "took a whack"?
After 12 years on pred you won't have much residual adrenal function - and an accident or illness needs a boost of steroid to cope with it. It is also claimed that a fall can be enough to trigger a relapse/flare of PMR - so why not also of GCA?
Firstly thanks for the quick response and secondly apologies for the brain fog but I am really quite poorly today.
So NO I didn't take a physical blow to the head it is just my terminology when I have a flare. However I get confused about what you call it when you are reducing your prednisolone due to the fact, that in my case, the GCA has meant to have more or less gone. Is that deemed a flare as well? I'm not sure so I call it a whack! I am probably making this very confusing but is it a flare whether 1. You have GCA/PMR and are reducing .......or 2. No GCA/PMR and you are just reducing the prednisolone to get off the steroids? I suppose both are just a lack of prednisolone so I should have gone up 5mgs etc.
I think this is a case of being so dopey due to the flare/whack I am not making the right decisions!
You should be TAPERING the dose of pred VERY slowly to get to a lower dose. I fear your doctor is in cloud cuckoo land - he can't know the underlying autoimmune cause of the symptoms we call GCA is gone until you have reduced the dose of pred to zero and get off it without symptoms returning. Nothing else.
I am left to wonder what your doctors have been messing about at - the normal process of dose reduction actually should start from the beginning - starting with a high enough dose of pred to combat your symptoms, usually between 40 and 60mg per day, but more if required, and then reducing the dose by maybe 5 or 10mg per month at first (10% of the current dose is recommended) but in smaller steps later. If symptoms return the patient should be told to go back to the previous dose that worked well, wait a month or two and then start to taper again.
You aren't looking for a relentless reduction to zero, you are looking for the lowest effective dose that manages the symptoms. Over time that should get lower and lower although there may be hiccups on the way where you stop for a while and may even mean increasing the dosage. But for most people you should get to zero in maybe 4 or 5 years - some sooner, some later, But it would be VERY unusual to need 12 years. Were you not told to taper the dose of pred? DId they take you down to a lower dose and then just stop there? Have you been under the same rheumatologist the entire time? If so, has he been happy to just leave you to your own devices at the same dose?
A flare is a return of symptoms of GCA - what we call steroid withdrawal is discomfort with your body protesting at the change in dose of pred. A flare will get worse if ignored and left at the same dose, steroid withdrawal usually improves over a period of a week or two.
What sort of symptoms do you have when you "take a whack" as you describe itWhy do you think it is GCA rather than anything else?
It does seem to me that you maybe need to see an endocrinologist who will help you with a plan to reduce the dose of pred safely. After this time it will be quite critical in the context of adrenal function - because it is likely that the GCA really has gone away after all this time but the time you have been on pred will make the adrenal side of things quite difficult.
Thanks again for your detailed response. I can't quite believe that I am still struggling to get down after 12 years but I am and I do get quite despondent about it. I will hold my hand up and say that I have raced along, at times, to get down off this drug as I am aware of the changes in my body and my brain! So I am partly to blame and I have seen four consultants up to now - mainly due to moving houses. I even saw a top consultant in Brighton, in the earlier years of the illness. A Prof. K. Davies who suggested I might try paracetamol!! For the last few years I have followed what I have been told to do i.e. drop by 0.5mgs every two weeks but that hasn't always worked. My symptoms have generally been the same of GCA: tiredness, headache, light headedness/dizziness, muddled thinking, feeling unwell. I did start with PMA and that had aches etc in legs, thighs and shoulders and then for a few days I got very painful stabbing pains in my head and following that I had a scan and was told I had GCA.
I have been with Rod Hughes for the last five years. He has never said I have had GCA but just called it vasculitis. We had discussed the possibility of me going on Tocilizumab but after the scan that all changed. He just said I had residual vasculitis and I needed to reduce my prednisolone. I remember asking, "So I don't have GCA and it's the prednisolone that is causing my problems?" and I left thinking that was the case.
The reduction has been very difficult without a real plan. I see him every 6 months and the last time I saw him I explained that I was struggling at 9mgs . He said to wait a month and try again to come down. So I wait 6 weeks and tried again and had another flare. At no point, with any consultant, have they mentioned the very slow reduction plan which you have helped highlight on this site. Once I get settled then I will try this programme of reduction. If that doesn't work then I will try an endocrinologist. I had asked Mr Hughes about me seeing an endocrinologist and was told I wasn't at a low enough level of prednisolone for that step yet. If necessary I will go privately. I will add Mr Hughes has always been kind enough to allow me to email him when necessary.
I have to say, I would trust Rod Hughes. My thought with an endocrinologist is that they might switch you to hydrocortisone in order to better enable adrenal recovery - in case that is what is causing the symptoms rather than the vasculitis flaring.They can be quite similar. I would also want to know exactly what Rod means by "residual vasculitis" though. To me that means the is some vascular inflammation - and that, I would have thought, can cause symptoms. Maybe he just means the signs of past inflammation.
I doubt many consultants would be advertising what they perceive as a very slow approach to reduction - but the reality is that many patients really struggle with any more than a very gradual change in dose and it is very difficult to decide what is causing what symptom. Snazzy, though, will tell you that in order to reduce the dose and achieve adrenal function can be a hard road where you have to accept a lot of limitation of lifestyle as you reduce the dose until adrenal function returns. But in the meantime - you do seem to need some help identifying what is what.
Good morning and it is definitely better as my increase in pred. has offered up a better world to move around in! Anyway I did appreciate your sensible and helpful response and I might well move ahead with an endocrinologist which may mean going privately.
I have been with Rod Hughes for some years now and I suppose what I can't quite understand is why was I being put forward for Tocilazumba and then after the scan, I wasn't, due to what he said was residual vasculitis. I have now found the results of the scan and it states on it - that I have low-level vasculitis!! So whatever, my symptoms and problems, have remained the same and surely after more than 12 years.....with all that brings with other health issues especially depression I might have qualified as I am not being offered anything else. So I sit here confused, as does my long-suffering partner, as to where I am in all of this. The mindset changes when you are told you have a minimal amount of an illness as to - no you still have it and the symptoms are just as bad! I even had all my PMR symptoms with aches and pains return last week!!
Anyway, you have definitely helped and for that, I am very grateful. I know you have had problems yourself in getting down from pred. levels as regards your PMR and wondering where you have reached in it all? If you don't mind me asking are you still stuck on a certain level or have managed to get down or even off and away!
I suppose it depends on whether they think the inflammation is due to the IL-6 cytokine - TCZ won't work otherwise. GCA or LVV must be proven to qualify for funding for it - it costs over £12K for a year.
I have been down to below 5mg a few years ago before a relapse - an increase in disease activity rather than a flare due to overshooting the right dose. Like the original episodeI haven't got below 10mg in the last 4 years. The beginning of Covid coincided with my husband being ill, falling and fracturing a vertebra - which led to long lasting disability and eventually he deteriorated and died last autumn. As sole carer I had to be able to function and the stress really made the PMR flare so at one point I was up to 19mg for a short time. After his death I was able to reduce to 12mg - but spoilt that by being persuaded to try taking a statin again which woke the PMR. Back to 14mg. But the statin is in the bin and staying there. Just had some localised neural therapy as they call it here - it worked very well a month ago, Hope it's as good this time! I am very lucky with my rheumy - he knows that PMR is a complex problem and there are patients like me. Told him today that he should get together with Prof Mackie and Max Yates on this long lasting version of PMR - because I think it is increasing.
Well it sounds as if life has good and bad bits in there for you as it does with me. So good luck with the localised neural therapy. It is trying to enjoy those good bits as much as you can. Anyway you certainly are a help and a comfort to many on this site! I'm off next week to visit my daughter in Australia who I haven't seen in four years! Hoping the warmth will also make me feel that much better. I think you are in Italy so you must get your fair share of sunshine where you are. Raining and cold here - again!!
Been snowing ready-made snowballs this morning! I'm in the north, half way up a mountain. But to be fair - we do get a lot of sunshine which makes -5C quite comfortable ...
I gave up skiing 6 or 7 years ago for various reasons. Like a lot of other locals actually - carving skis led to a rash of tourists who think they can ski after a few lessons. Helicopters flying over the house several times a day heading for the hospital is a bit off-putting
Oooh, do see if your daughter lives anywhere near a clinic offering Bioflex laser therapy. I have had it, really seemed to help with pred withdrawal symptoms, although I don't know if it had a direct effect on PMR. It is usually offered through physiotherapists or chiropractors. Apparently research has shown it is definitely effective for some conditions, including rheumatoid arthritis, and even longstanding brain injury. Promotes healing.
That started to fade as soon as I stopped them. I have to say - it hasn't happened before but this being between doctors with varying demands is a pain! My usual cardio doc is happy enough that statins are not for me and also subscribes to the concept they do nothing prophylactic for women. This one had a paddy about the fact urology made me stop the anticoag for a procedure - it's far too important to miss a dose and banged on about cholesterol. But I have no desire to live a few years longer feeling like that!!!!
Petra does (the usual one), Barbara (the spare) seems not to ... Mercifully, Christian the rheumy does - in capitals. I'd almost got my head around trying leflunomide until this statin hiccup. Upsetting the balance takes too much recovery ...
PS I supposed my muddled brain was trying to understand if you are dealing only with prednisolone withdrawal, and having problems, would you need to increase by 5mgs if there is no underlying illness of GCA or PMR?
Not been well today so my brain is in a fog but may I ask if you are dealing only with prednisolone withdrawal, and having problems with that, would you need to increase by 5mgs if there is no underlying illness of GCA or PMR? My consultant, with reference to my scan, tells me I don't have GCA and I just have to get off the prednisolone but slowly. Is this situation also deemed a fare?
As stated in link Pred withdrawal usually only last a few days whilst your body gets used to new lower dose, for me it was about 3 days and I just felt a bit irritable…and no return of original symptoms , although some people may get that.
If it is not PMR/GCA, although not sure anyone can categorically say that until you are at zero - but as PMRpro says 12 years is a long time - what is Rheumy doing to help you reduce steroids. It’s no just saying get off the Pred, after that long on it, you need help.
Thanks again! I know some of my problems have been caused by myself coming down too quickly but for the last two years I have stuck with the instruction of reducing by 0.5mgs every two weeks when and where applicable but that hasn't always worked.
My consultant, Rod Hughes, has said, following a scan two years ago, that I have residual GCA/Vasculitis so therefore can offer nothing more than trying to get down to a lower level of prednisolone and that's more or less been it. Interestingly there has never been a mention of a very slow reducing plan as indicated by PMR which I will now follow when all settles down again. However I am obviously finding it very difficult and life is pretty miserable as I would say for 12 years now, 50% of my life I have been unwell! Luckily I am retired!
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