Question re when to increase Prednisone in GCA

There seems to be two schools of thought about when to increase Prednisone in GCA.     I had been increasing if my CRP came back elevated (sed rate never goes up in me, only the CRP), thinking I would ward off a flare before I had any symptoms.   However,  I have read 4 or 5 papers (since 2010) that say you don't increase the Prednisone in the absence of symptoms.  In earlier papers the practice was to increase if markers were elevated even if no symptoms.   In one of the recent papers the rationale seemed to be to avoid higher and longer doses of Prednisone which seems to make sense.  I would like to hear your thoughts and any references you could direct me to, thank you. 

38 Replies

  • There is no need to increase pred if you are feeling OK. The blood markers will already show a flare if you have one and you increase the dose, I don't think the markers give you prior warning that there is a flare on the way, it has already arrived. 

  • Hi,

    Agree with piglette, why would you want to increase the Pred if you have no symptoms. 

    Initially your blood tests are used as confirmation (?) of PMR  if everything else has been ruled out - but it's a fact that they can be easily raised by lots of other problems, and invariably lag behind a flare anyway. 

    Your symptoms should be the key in any change in Pred - whether that's an increase or decrease. Although having said that, my previous GP, who failed to diagnose my GCA , did increase my Pred on 2 occasions when my markers went up without any symptoms. Looking back, I think she panicked - understandably. 

    However I was under a lot of stress regarding my late husband's health at the time which I'm sure was the reason for said increases in blood readings and nothing to do GCA at all. 

    As you say in your last sentence, if you increase unnecessarily, you just prolong the time you are on Pred.

  • No single raised blood marker should result in a knee jerk increase in pred - it should be repeated and the trend noted. If it continues to rise - then you consider what to do. Although CP is less unreliable than ESR it also isn't perfect and other things will raise it too such as a chest infection (in particular). Symptoms are always king.

    But if it rose steadily and there were no GCA symptoms then further investigations should be done.

  • Thank you piglette , DorsetLady , and

    PMRpro for your replies. 

    I had been told the following doctors had written the "gold standard" on GCA treatment:

    The Treatment of Giant Cell Arteritis

    2008   J. Alexander Fraser, MD*, Cornelia M. Weyand, MD, PhD†, Nancy J. Newman, MD‡,§,¶, and

    Valérie Biousse, MD‡,§

    * Department of Clinical Neurological Sciences, University of Western Ontario School of Medicine,

    London, Ontario, Canada

    † Department of Medicine, Lowance Center for Human Immunology, Emory University School of

    Medicine, Atlanta, GA

    ‡ Department of Ophthalmology, Emory University School of Medicine, Atlanta, GA

    § Department of Neurology, Emory University School of Medicine, Atlanta, GA

    ¶ Department of Neurological Surgery, Emory University School of Medicine, Atlanta, GA

    so I have copied and pasted what they say under "Tapering and Relapses"

    At each visit, decreases in corticosteroid dose should be undertaken only when symptoms of

    GCA remain absent and the ESR and CRP remain normal. Because irreversible blindness

    from AION may occur in the absence of other GCA symptoms (occult GCA), it must be

    emphasized that symptom monitoring alone is insufficient to guide the tapering of

    corticosteroids.11,28 If ESR and CRP have both risen, in the absence of an intercurrent

    illness, the GCA is considered to have relapsed, and an immediate increase in the

    corticosteroid dose to the last effective dose is recommended.28 Although a rise in

    laboratory parameters from normal range into the abnormal range certainly warrants an

    increase in corticosteroid dose, small rises within the normal range need to be followed

    carefully with repeat ESR and CRP a few days later to confirm relapse prior to increasing


    I have been told and read that the CRP is more reliable than the ESR, in fact my rheumatologist doesn't do sed rates very often and when I asked why she said that current research says that the CRP is indicative of a more recent picture whereas the sed rate gives a picture of days previous.  I have since read several papers that back this up, that the CRP is a more important indicator than the sed rate.  In my case as I've said the sed rate has always been normal so there was no benefit in tracking it.

    I'm beginning to understand that just as there can be so many different symptoms to GCA, there can be conflicting opinions among the experts as to treatment as well.  My personal experience has been that if I saw the CRP going up a flare did follow.  This time it has been sneaking up every week but so far no symptoms so I'm not treating it, but will continue to track it.


  • Hi again animi,

    I have read through your previous posts as well as this one again, and can understand why you put so much emphasis on your CRP readings. It would seem that maybe you do not show symptoms as readily as most people, I know of one other lady on here who doesn't either, and she is very worried about her sight in relation to GCA. 

    You say you had PMR for a year before GCA was diagnosed, and although on Pred during that time, obviously not enough to prevent the GCA, so I guess you had few or no symptoms during that time as you decreased from 10mg (which I would say was not high enough) to 6mg. 

    On GCA diagnosis (summer 2015) you increased to 50mg (reasonable level, but 60mg would have been better) and then reduced to 15mg - in what 9 or 10 months? Again I guess you had no problems until you got to 15mg . I would say that reduction was much too quick! 

    Although, the medical profession obviously do not want patients to be on high doses, which inevitably leads also to longer periods on the Pred, the initial starting dose has to be high enough to get to grips with the inflammation. You also need to ensure that whilst reducing the inflammation is still kept under control at all times. If the amount of Pred isn't high enough at any given time during the whole process then it's not doing the job it should, and, unfortunately leads to further problems down the line. 

    Not sure what dose you are on at the moment, but so long as your CRP reading are okay would suggest you stay at that level before you consider any further alterations. The most important thing is to get your inflammation under control.

    Good luck

  • Thank you DorsetLady. In my year of PMR I had not one flare. I did a post about this because I had no idea how some people suffer so much with it. After starting on 10 of Prednisone my CRP was normal and never rose after diagnosis until GCA. When I flare with it, it doesn't come on gradually, I'm fine one day and by night think I need to go to the ER, the pain comes on that fast and that severe. Guess that’s why seeing my CRP go up makes me very nervous !

    I have not had anyone looking after my GCA since Christmas (long story) so have had to manage by myself, but yesterday I found a doctor about 3 hours away who is a GCA specialist (he has two research trials going at the moment ) and he accepted the referral from my GP. So I am needless to say, excited, relieved, thankful......finally I will get good care. I have read his reviews and talked with a patient of his, all good !


  • Glad to hear about your new specialist. Hope he makes a difference to your GCA. Let us know how you get on with him please. 

  • DorsetLady, I'm a bit confused by some things you said.  That I was not on enough Prednisone for the PMR to prevent GCA.  I have never heard this before,  that GCA was preventable.   Can that be right?  If so, I wouldn't expect such a high percentage of PMR patients to get it.  Is there a reference for that?  And I have to think I was on enough Prednisone because I had a year with no symptoms and normal CRP, why should I have taken more?  Re tapering too fast for the GCA I went by the guidelines in the expert's literature but monitoring symptoms and CRP all along (CRP weekly). If everything was stable then the schedule must have been ok.  Once again we have to weigh up benefits /risks of too much Prednisone.   I would appreciate if you could help me understand your concerns better.

    Thank you, Cheers 

  • Hi animi,

    It's my understanding (although quite happy to be corrected) that PMR and GCA are similar illnesses in that the cells that make up the walls of blood vessels become inflammated due to a malfunction in our own immune system. In PMR the blood vessels affected are mainly the ones that feed our main muscle groups, shoulders, hips etc, whereas in GCA it affects different vessels, the Aorta, and for some reason those to the head, which is why it is sometimes called Temporal Arteritis. 

    It is well documented that untreated PMR can lead to GCA, so surely it's plausible that if not enough Pred is prescribed to get the inflammation under control properly in respect of PMR, then GCA can follow. 

    I may be wrong, but you seem to be saying that anyone treated for PMR at the correct level of Pred should not get GCA. But we know some people go on to develop GCA whereas others don't, so why is that the case?  

    GCA is certainly the more aggressive and dangerous of the two, and certainly requires more Pred to get the inflammation under control. 

    I appreciate you have reduced sensibly following guidelines and monitoring symptoms, blood etc, and I'm not criticising you in any way, but if you are having a flare, then the only answer is not enough Pred in your system.  

    The only reference I have is me, and I believe I had the start of PMR in Sept 2010, it was not diagnosed as such, and therefore not treated with Pred. Eighteen months later it had morphed into GCA, and I lost the sight in one eye. Then, and only then was it diagnosed. Started at 80mg to preserve sight in other eye, which was touch and go for 2 weeks, fortunately it was okay. 

    Since that day, I have reduced very carefully, and over the last 18 months very slowly, am now down to 0.5mg. 

    My concern, since I found this site is to ensure my journey is not repeated by others, because I genuinely believe that GCA is preventable. So if I appear overly cautious about reductions et al I make no apologies. 

    Take care, 

  • I've been doing lots of reading today and it seems whether PMR and GCA are separate diseases or related is quite controversial.   There seems to be some connection but what that is has not been settled on.

    Sorry, no, I wasn't saying that anybody treated at the right level for PMR would not get GCA, I thought that's what you had said lol. So why again do you think it's preventable?   I'm having a few senior moments I think :-)

    Yes, definitely if I'm having symptoms I'm having a flare and do increase the Prednisone. 


  • Hi again,

    Think I must have written original comment unclearly. What I mean is that I think that if PMR is treated, and high enough doses of Pred given - it can prevent development of full blown GCA. I didn't mean that GCA per se can be prevented, sorry if that's what my thoughts conveyed. Wish that it were so! 

    As you say, there seems to be no clear cut  evidence that they are the same illness, but I think there are too many connections to discount the fact they are strains of the same disease. Of course, not all patients with PMR develop GCA, but certainly lots do. 

    Many patients also have other auto-immune problems like Fibromyalgia and Vasulitis as well as PMR. 

    Trouble is, most of these illnesses involve older patients, and are not perceived by many as being as important as finding a cure for cancer, or preventing heart disease etc, and can be treated by a relatively cheap drug, so the funding for research is not forthcoming.

    Talking about flares, hope you're nowhere near the forest fires, those that are must be devastated. 

    Take care

  • Thank you DorsetLady, I had never heard or read that, but will add it to my list of questions for the specialist when I see him. :-)

    No, I'm not near the terrible fire in Alberta but. The stories and pictures have taken over all Canadian airwaves I think.   I just can't imagine going through something like that,  but unless I have missed it, there have been no deaths involved thank goodness.   Fort McMurray will need complete rebuilding.   Canadians as usual have risen to the occasion with help and donations such that they have no more room for anything material.  People in other provinces are opening their homes for people who had to flee.


  • I expect he'll discount it, but we're all entitled to our thoughts. 

    Glad to hear that those affect by fires are being helped by others. We humans aren't so bad after all are we! 

  • This has been superseded by new thinking which suggests that a genuine flare or relapse should be treated by returning to a high dose, not the dose previous. But generally it's not a good idea to medicate yourself over the long term - if you experience any of the visual symptoms of GCA returning then you should get yourself to hospital double quick.

  • Thank you Kate. I read that if the head pain comes back, you go back to the previous dose, but if having eye or jaw symptoms you go back to a high dose, is that right ? And yes, my opthamologist has drilled in to me, if experiencing any eye symptoms head to the ER. It seems that jaw claudication is considered just as serious in some literature.


  • Will definitely keep you posted, thank you.  :-)


  • This makes for interesting reading. I go up and down with my CRP and so does the dose. I always know when the CRP is raised because of my symptoms. Now I'm going to ask if anyone has it the other way around, eg symptoms but CRP blood results decreasing. It's a conundrum for sure knowing what's best to do.

    A quick trial of Lef didn't work, so now praying for a miracle so that I can at least come down to 10mg Pred.

    It will be interesting to follow this post.

    All the best.

  • It will be interesting to hear how you get on with the GCA specialist as well. Where do you live by the way. If in UK might be interested in details.


  • Gosingen, I am in Canada. I found this doctor while looking for research trials I could be part of.


  • Discuss with your new doctor whether you could try one of the 'steroid-sparing' drugs. At the moment methotrexate is the prime contender, but tocilizumab is also showing great promise. It's expensive though!

  • Thank you Kate. Yes I intend to talk to him about this. I have been reading a summary of all the latest steroid sparing drugs I just received from my pharmacist and Methotrexate is rated very favourably. I was on it for two years, 2010 - 2012, during my first round of Prednisone for autoimmune inner ear disease (AIED). And yes, I am trying to find a trial for Actemera (Tocilizumab). It would be great if I could !

    Thank you very much for your input, very much appreciated.



  • Maybe this will help you.

    I had GCA and knew that both the ESR and CRP when raised are an indication that something is going on. 

    I visited my GP when I was feeling generally unwell and I had a Kidney Infection.  The GP prescribed anti-biotics.   The day I visited I had had a blood test.   Two days later the GP knocked on the door at 8.30am.  I asked what had he come for, the CRP  blood test result showed 242 (extremely high) he was so worried about the GCA that he came prepared with extra pred.  

    I laughed at him, said sit down - then said I have none of the symptons of GCA, remember on Monday you found I had a kidney infection and put me on anti-biotics.

    He looked at me and said - I clean forgot.   So the CRP showed something was going on but not GCA.  The CRP rate on the next blood test  -after the kidlney infection cleared up was back down to 8.

    The moral is, you know the symptoms of GCA backwards by now so you know what to look out for.

    Yes, I did have a flare and knew instantly as the one sided headache and cheekbone pain came back.   We upped the pred to 40mg and it was controlled instantly.  I was back down to 20mg (where I was when the flare started) within 2 weeks.

    I had GCA for 5 years and have been in remission for 6 years and counting.

    Listen to your own body - it tells you.

  •  That was an interesting story Sambucca.  I went back-and-forth with my CRP  both when I had a cold and again when I had herpes. In both instances none of the GCA symptoms were present.  I did not increase the prednisones but was on 25 mg at the time. When the herpes cleared up the CRP went back to normal.   I continue my very slow reduction and and at 20 at the time. I started with 40 in July and reduced to quickly  so when the CRP went up I knew even without symptoms that I had made a mistake. I was feeling  so debilitated and was unable to get up to the mayo clinic on 30 and so my doctor brought it down to 20 mg . I understood that being on 40 for a month 30 for two weeks and then 20 was much too quick. Even then symptoms never returned.  I am handling it much better now but still reducing very slowly absolutely petrified of having to go back to 40. 

  • An interesting story, thank you. 

  • Hiya - could I use this story in the book please? :-)

  • Who are you aiming that request at Kate? It isn't obvious and not everyone gets notifications of replies to them from HU reliably. Mine works when it feels like it!

  • Oh it was Sambucca but pesky HU didn't post in the right place.

  • Haven't you noticed? It never does - it goes at the end of a section. It is VERY confusing.

  • Yes I have - it's a pain. But somehow I'm in denial - keep thinking they might have put it right by now.

  • It would be nice if they automatically made you follow anything you put a post in instead of having to click on the follow box to see if anyone else posts on it. This is the most user un-friendly forum format I've used...

  • I just read something that I found hard to believe _ "disease flares on doses of higher than 15 mg of Prednisone a day are distinctly unusual" then goes in to say that flares increase at lower doses which makes sense.....but I was certainly flaring when above 15


  • I also had flares of GCA at higher than15 mg. At one point I had a severe flare at 30 mg My doctors had me go to the ER to rule out spinal meningitis. After the results were in, it was a severe GCA flare, and I returned to 40mg of Prednisone for a long time. Living with PMR/GCA is like being on a roller coaster 24/7 at times. Thank goodness we have one another on this ride.

  • Yes joyful13 i also have flared at 25 - 30, so I think what I quoted from a paper is not accurate at all

  • What a load of tosh - GCA will flare at way above 15mg. If it didn't they wouldn't start on a dose well above 15mg would they?

  • Actually I didn't include the whole paragraph but it said that once diagnosed and symptoms and markers controlled,  it was uncommon to flare over 15, but even that doesn't make sense.  I have had a whopping headache all night and have been on 25 the past week and seems I will have to go higher.  I guess my increasing CRP was telling me something after all :-(


  • Yup - in my experience that's tosh too.

  • Were you flaring in the sense that you had a return of symptoms, or a raised CRP?

  • Kate - A return of symptoms (severe head pain, throat discomfort,....) but also an increase in the CRP.

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