Confused about GCA diagnosis

Posted , 10 users are following.

Hi

Can anyone give me any advice.  After visiting A&E 3 weeks ago with severe pain on right side of my head, I've been told its GCA and I need to have a biopsy (this got cancelled last week and I'm still waiting).  I was given a repeat prescription form to hand to my GP, which I did, I picked up my prescription today and he has said I can't possible have GCA with an ESR of 18 and I'm to half my dose of Prednisolone from 30mg to 15mg, I didn't think that you could just reduce the dose that rapidly.  I can't see my GP until Friday and don't know what dose to take tomorrow.

Any info or advice would be greatly appreciated.

Thanks

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  • Posted

    You CAN have GCA with an ESR of 18 - about 1 in 5 patients with GCA (and PMR) do not develop the raised "acute phase reactants" as they are called. It is possible that it was caught very early - the ESR lags behind - or that you are one of the people who doesn't get a raised ESR.

    I feel that is quite unprofessional of him to disagree with the diagnosis when he didn't see you originally but having to diagnose from the clinical symptoms alone is what causes the problem - and it is an awful shame that the biopsy was cancelled. It is thought that every week you are on high dose pred reduces the chances of it being positive by about 10% but it is often non-conclusive anyway.

    After just a few weeks you should be OK to reduce like that since the new dose is still way above what your body makes naturally. If you didn't have any visual symptoms at the time your sight is probably not at risk, especially since you have had 3 weeks at 30mg. If you do reduce to 15mg tomorrow though and the pain comes back at all I would go back to A&E and ask them for advice - they will have notes there and will be able to either ask the doctor you saw then or a specialist what they think. Did the pain go very quickly with the 30mg pred originally?

  • Posted

    Pam, it would be useful to know whether the pain that took you to A&E resolved shortly after starting the steroids, or at least improved by around 70%.  If so, many medics would accept that as confirmation of the correct diagnosis of GCA.

    It is recommended that temporal artery biopsies  should be carried out within a couple of weeks of starting steroids.  Any longer and the large cells they are looking for are likely to have resolved due to the high dose steroids.  It is possible for the biopsy to produce a negative result but still have GCA, likewise with the ESR blood test.  Did they carry out a CRP blood test - that is very often considered to be a more reliable marker of inflammation.

    It is possible to reduce Pred fairly quickly within a short time of starting them if the diagnosis is found to be incorrect, but if you do have GCA you will very quickly know as the pain will return.  Just remain alert to any problem with your vision and return to A&E immediately if you are concerned.   

    • Posted

      Hi

      Yes the pain was very much better within 48 hours or so.

      I went back to the Ambulatory Acute Medical Ward yesterday and asked them about my GP reducing the dose, they were brilliant and arranged for me to see a Reumatologist Consultant who confirmed that I do need to continue the 30mg of steroids and he is arranging a biopsy (he said within 7 days) he also gave me bone protection and stomach protection meds as well, another thing the GP said I did not need!

      I hope now to have the biopsy in the next few days and then take it from there.

      Did you also feel generally unwell and sort of disinterested in things as well, I'm usually quite a motivated person but do not feel that way at the moment?

      Thanks for your help

       

    • Posted

      Now that's the way it SHOULD be! Be interesting to see if the GP is going to argue with a rheumatologist.

      Yes - it is common to feel generally unwell with GCA and PMR, sort of as if you have flu. It is a serious illness - don't be fooled just because you can't see anything. It all depends on how many of your blood vessels are involved but you can feel pretty ropey. The pred doesn't help of course.

      Get well soon.

    • Posted

      Pam, now that's what a call a result!  Big tick to all concerned.

      I didn't feel "generally unwel", I felt as though I was dying.  I'm sorry if that sounds dramatic but I was progressively getting more and more ill with severe head and jaw pain on chewing over almost a month, with three GPs over that time not having a clue what was wrong other than to suggest firstly an allergic reaction to a BP Pill, prescribing antihistamines; secondly when vomiting and sickness joined in the fun, I was prescribed anti-sickness pills, and thirdly just advised to see a fourth GP the following week.  I lost a stone in weight in that time.  A wonderful pharmacist came to the rescue with suggested GCA, confirmed by the 4th GP, and 40mgs of steroids wokred their magic within hours.

      As for you feeling disinterested in things, that isn't at all unusual but unfortunately to be expected due to both the inflammation in your body and side effects from the steroids.  Be really kind to yourself, with lots of TLC and rest whilst those steroids do their job.

      I wasn't prescribed bone protection meds (the GP thought the rheumy had put me on them and vice versa).  I was prescribed a PPI, Omeprazole, for stomach protection but unfortunately it did the opposite, upsetting my bowel, so was switched to Lansoprazole.  That caused pain (I'm an awkward patient!) and at the first emergency appointment with my rheumatologist he told me not to take them.  I relied on a 'live' probiotic yoghurt daily before the steroids and never had any further problems.

      With regard to the bone protection medication, you should really ask for a DEXA scan to find out the present state of your bones - if all is normal now and there is no sign of thinning, then you may not need to take the bone protection meds.  If you do already show signs of osteoporosis or osteopenia bone protection may be necessary, but you need to be aware that if they are bisphosphonates, they can bring their own quite serious problems and, in any case, current advice is that they must not be taken for more than five years.  I had a private DEXA scan shortly following diagnosis and all was normal.  A repeat scan a couple of years later showed very slight change into the osteopenia range (the stage before osteoporosis) but not in need of medication.  My latest scan a year or so after discontinuing steroids actually saw a slight improvement.

      I'm sorry for a bit of a lengthy reply but hopefully it will prove helpful.  Good luck with the biopsy. 

    • Posted

      Hi, Pam- I am so glad you went for another opinion.  Your GP's rationale for reducing the dose below a typical GCA dose (and somewhat on the low end for that) to a PMR-type dose seemed shakey.  

      I have had a lot of trouble with fatigue, inability to concentrate, and lack of motivation in the last few months, expecially after reducing from a high dose of prednisone given to me when it looked like I might have GCA.  After about 3 weeks on 15 mg. things seem to be getting better. I don't expect to feel frisky as long as the PMR is with me, but I hope not to feel like collapsing all the time!   

       

  • Posted

    I'm sorry you are so stressed for I know any stress

    I have makes the PMR worse.  I have two ophthalmologist

    who are very iffy about what they are doing, I even 'phoned

    the manufacturer of the drug which is injected into my eye(s)

    and they can explain what has happened but not why.  It's

    very frustrating as I'm all for prevention rather than cure.

    We must use our own observations I suppose and try to

    piece things together for nothing is finite.

  • Posted

    I was very fortunate. I saw my GP one afternoon after waking in the morning with a heaahe so sore I could not touch my face, and vomiting with the pain. He siad he was sure it was GCA, took blood and started me on 40mg pred. The following week I saw the rheumatologist and had a bilateral biopsy the same day! That was Sept 2013. I am now on 7mg pred having had to increase this week from 5mg after aching all over and feeling shaky. Could I now also have PMR as I know they are connected?
    • Posted

      In my case, PMR did not mean "aching all over."  The pain was in very specific spots, even when it was in many places.  If you can't roll over in bed at night without yelling, you may be a candidate!  Also, if you can't raise your arms (forward or to the side), so that you have to plaster both elbows against your sides and use one hand to lift the other to turn on a lightswitch or brush your teeth. I also hurt at the back of the pelvis (just below the lower back) and sometimes at the back of the knees.  The pain felt like I'd gone from being totally sedentary to training for the Olympics in one day- how would your muscles feel the next day?  

      Not everyone has the same degree or type of pain, but it would help if you'd describe where and how you hurt. Or, still better, call your doctor! 

    • Posted

      Maybe - but how did you reduce down to 5mg? This is the realm in which your body has to start producing its own corticosteroid again, cortisol. If you remove the artificial verson too fast your body is deprived of an essential substance and it can make you feel quite ill and very shaky. 

      And what superb service you had, both from GP and rheumy. You were lucky, most GPs don't recognise GCA as it is relatively rare and they may not have come across it before. That is how a biopsy should be done but it needs access to a surgeon who does them regularly and a time slot that matches.

  • Posted

    So many doctors who treat patients in this forum strike me as alarmingly happy-go-lucky about possible GCA/temoral arteritis. 

    My doctors (in the US) treated my iffy but suggestive GCA signs as an emergency.  (I'd been diagnosed a few weeks before with PMR.)    I went on high prednisone the day I saw the rheumatologist who was concerned for  my sight.  My ophthalmologist scheduled an "urgent" appointment at 8 the next morning.  She thought it was not GCA.  The temporal artery biopsy was scheduled as "urgent" at 7:30 the following morning (so I would not have been on high prednisone long enough to invalidate the test).

    Unless someone has decided that the kind of pain you had was not the kind that suggests arteritis in the temporal artery (so there was never really any indication you had GCA), I'd stay on the higher dose if you can't call your GP for advice.  I am strongly in the "better safe than sorry" camp when deciding between a few more days on high prednisone versus risking vision loss.  (Not a long-term high dose, but until the diagnosis is clear.)

  • Posted

    Pam

    Sorry to hear you've joined the GCA club. I was diagnosed early December, following 4-5 weeks of feeling unwell all the time interspersed with certain days when I thought I had flu. I also had pain on right side of scalp, blocked painful ear and pain behind my eyes. Due to lack of experience of GP, she ignored these signs although I had had PMR for 5 years, which by then was in remission.

    Luckily, I was due a 6-month check up with a new rheumatologist who asked for a blood test. Biopsy was not done although rheumatologist had asked GP to arrange, - yet another major error.

    I'm replying to you to warn you to look out for yourself. I've had/am having awful problems with my GP (this is the second GP I have been to in my practice) who doesn't understand GCA and appears to be in a power battle with my rheumatologist. So, don't take your GPs advice as gospel.

    This group is very supportive and there are some very knowledgeable people here, especially MrsO and Eileen, so do come back for more advice and support when you need it. Besides, it's also good to know that you are amongst fellow sufferers!

    Have you had the biopsy by now?

    • Posted

      Hi

      I am due to have the biopsy tomorrow and hopefully then all will become a bit clearer, I have a schedule for reducing the pred from my reumatologist which will be 5mg less each week for the next 4 weeks and then he said we can re-evaluate (i am currently on 30mg per day) and do still have a slightly uncomfortable feeleing at my temple but I understand that the pain doesn't completely go?  I also feel pretty tired but am sleeping reasonably well so that's a bonus.

    • Posted

      Pam, a lot of rheumatologists want to reduce at level, mine included, but it's too quick. Having learned from this group, it needs to be much slower and my rheumy now accepts that I won't take the risk.

      I started at 40mg mid December and am currently on 25mg and even that was very likely too quick. I was completely exhausted at the higher levels and had real problems thinking straight and concentrating. That hasn't disappeared yet, but is certainly better. I'm currently signed off work due to a lung infection, but did go back to work for 3 weeks on a gradual return before I caught the lung infection.

      I always have an "uncomfortable" feeling in my temples, a sort of pressure.

      Wishing you well for tomorrow.

    • Posted

      If it does turn out to be GCA with the biopsy than that is far too fast a reduction - that would take you down to 10mg and there is no way that is enough to manage GCA. A dose of 30mg is a very low dose to start at for GCA, 40mg is more usual and even higher if you have had any visual symptoms.

      If you go to this thread, 

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      the second to last link in the first post is to a paper about managing PMR and GCA. On page 5 or 6 there is a recommended scheme for the first 6 months of managing GCA - they start at 60mg and reduce by 10mg per month so it takes 5 months to get to 20mg. Even then, they sometimes have flares.

    • Posted

      Sussanne M, well I had the biopsy yesterday at 5.20pm after waiting since 8am with no food since the night before and no water since 7am.  It was a very long day but am glad it's done and now to wait for the results!!  I am assuming I will be given an appointment to see my rheumatologist with a plan for my future care with or without a positive result.  I have to say even given the long wait the staff at my local NHS hospital were brilliant, I feel they are dedicated people who are often let down by the infrastructure and administration of the NHS.
    • Posted

      Hi Pam

      Goodness, that must have been awful, especially no water. Glad you are over it now.

      I'm sure you will be given appointment with rheumy. As you no doubt know, the biopsy is not always conclusive and diagnosis may be based on symptoms and bloodtests.

      I've nothing but praise too do the nursing staff and doctors at my local hospital, having spent 3 nights there last week (severe chest infection).

      Hope you are feeling ok and get some rest.

    • Posted

      You definitely don't work in the NHS for thanks or the money these days whatever certain daily newspapers would have you believe! Been there, done that rolleyes

      So pleased to hear it is done and dusted despite the long wait - but no wonder there are complaints about patients being dehydrated! 

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