GCA at 33!

Hi all,

I've just found this website and finding it useful so far. I'm only 33 and my GP has diagnosed me with GCA and started me on prednisolone. I'm now having weekly ESR blood tests and my GP is reducing the prednisolone slowly.

Has anyone else been diagnosed at a similar age and do people think its weird that I've not been referred to a rheumatologist?

Thanks

Suzanne

21 Replies

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  • I was 47 already under a Rheumatologist for PMR when I developed GCA. It took 2 yrs to get diagnosed. Are you in the U.K., if so your GP should be sending you for an urgent rheumatology appointment. The UK guidelines state all atypical cases should be referred for specialist review. Has a temporal artery biopsy been organised?. Out of interest what were your symptoms? What dose if Prednisolone are you on?. If you develop any visual symptoms you need to go straight to A&E. I would be demanding a referral, many Rheumatology will tell you you are too young, but a young man in Wales in his 30s died from undiagnosed GCA. I'm not trying to scare you, just to point out your GP may be right, but he needs to follow national guidelines. Good luck, Runrug x

  • Hi,

    Thanks for your reply. I am in the UK and this is going to be a slightly long explanation so please bear with me!

    Basically I woke up with a headache like I'd never had before about 2 months ago and it hurt to even move. I couldn't get to the drs for a few days and when I did the headache had passed so they checked me over and sent me away. I had some mild headaches for a few weeks but then the awful headache came back. I went to the drs the same day and was given migraine tablets that didn't do anything. I went back a couple of days later and they said they were referring me to a neurologist.

    I then got a chest infection and went to see dr number 4 and when I mentioned my coughing was hurting my head she suggested temporal arteritis (I'd also had a blood test a few days earlier and my ESR was high). So she started me on 40mg of prednisolone. My headache subsided so I saw another dr 3 days later he kept me on the prednisolone.

    I had my ESR rechecked and it had come down significantly so when I then saw GP number 6 (and luckily now the only one I've seen for the last 4 visits) he felt my head and said it was definitely temporal arteritis. I'm now having weekly blood tests and follow up appointments and he's reduced me to 25mg this week.

    My eyesight is fine at the moment but I have been referred to the eye hospital and I'm going next week.

    Hope that makes sense!

    Suzanne

  • Hi Suzanne (me too)

    33 is certainly young to be diagnosed - most doctors say much too young, so good for your GP assuming he's got it correct.

    It is recommended that GCA patients see a Rheumy as it can be more complicated than PMR, but your GP may feel he's competent enough to treat you. However, it might be worth asking the question, if you do it without denting his ego! You do need to keep him "on side".

  • Hi Sue,

    The chances of it being GCA are very slim at aged 33. You really need a definitive diagnosis from a Rheumy experienced in Vasculitis which is a rare, complex disease that no GP should be managing! If they have got it wrong then they are condemning you to 2+ years of treatment with Prednislone which carries significant risks, especially if you don't need it. You really need to insist on an urgent referral.

  • Hi Suestars,

    This must be a bewildering shock for you! Once your eyes are checked out please insist on seeing a Rheumatologist to confirm the GCA diagnosis. They will be interested in your case because you are not typical.

    It struck me that it could be a virus, they can produce a lot of weird symptoms. It is vital that your diagnosis is confirmed as your precious eyesight is at risk. Like the other people replying to you I urge you to go straight to A &E if you experience any eye symptoms. Good luck with everything and let us know what happens.

  • My goodness Suzanne, you must be feeling so overwhelmed with such a diagnosis at your age. I thought it curious that he "felt your head" to make a definitive diagnosis?....could you elaborate on that please?

    Best of luck, you'll find lots of good advice from experienced people here.

    Cheers.

  • Thank you for your reply - I am a little overwhelmed!

    And he was checking for areas of tenderness but also said I have a palpable temporal artery on my left side!

    Suzanne

  • Hi Suzanne!

    I'm 33yo as well and being treated for GCA. My symptoms started at age 30, and I began treatment when I was 31.

    I would definitely be asking for a referral to a rheumatologist if I was you. It's not impossible to have GCA at a younger age, although certainly rare. You want to be as sure as you can about what's wrong with you because steroids are awful drugs and you don't want to be on them unless you have to. Also, GCA is a serious disease so you do want to be in the hands of a specialist for something like this.

    Please keep us updated. I'm especially interested in what happens as you're the same age as me!

    Anna

  • If it was me, I would ask your GP to be referred. I'm a lot older than you but have both PMR/GCA and see both rheumatology consultant and gp for my conditions. Very sorry you have been diagnosed with GCA at such a young age. Wish you all the best.

  • Apart from anything else there is another form of large vessel Vasculitis called Takayasu's Arteritis which is very similar to GCA. It can cause problems in the aorta ( the main blood vessel leaving the heart ) and the vessels off it ( including the temporal artery ). That needs to be ruled out as a cause. It's very rare which is another reason you need to see a specialist Rheumy with experience in large vessel Vasculitis.

    The U.K. expert is a Prof Justin Mason at the Hammersmith in London.

    vasculitis.org.uk/about-vas...

  • Wow sorry to hear you have hit GCA at such a young age! I have limited experience of GCA coming up to 4 months on steroids at age 64. However in this time I have had bone scan to monitor impact of steroids on bones (recommended if more than 3 months). also a chest x-ray in case GCA is masking other medical issues (cancer). In addition to being referred by my GP on the day of diagnosis I saw the rheumatologist the following day as a medical emergency. Furthermore I have now been called up to see the rheumatologist for a follow up review next week. Clearly a very different care path to your own!

    Good luck with your treatment.

  • There is a well documented case of a 37 year old male who had GCA (the case runrig mentions) so it can happen in your 30s. But it is VERY unusual.

    Do I find it weird you haven't been referred to a rheumy? I most certainly do as there are other things that could be causing the symptoms and without some investigation you will never find that diagnosis accepted in the future by other doctors. I'm even MORE surprised anyone "confirmed" GCA on the basis of a palpation of a temporal artery! Even the top experts wouldn't claim that - and it isn't being able to palpate an artery that is suspicious, it is NOT being able to find a PULSE that is concerning. They can't even confirm it using highly specialised imaging. And a cough makes your headache worse so it must be GCA? That is a major stretch of the imagination - a cough makes any headache worse.

    Only one point I'd dispute with the others - it isn't an URGENT appointment you need, it is an EMERGENCY one. urgent just mean it will be seen in a few weeks or so. EMERGENCY means NOW, TODAY.

  • Thanks for everyone's replies - I'm back for my next gp appointment on Monday so will try and get a referral out of him!

    I am having unpleasant side effects from the steroids and the thought of being on them long term if I don't really have to be is my main worry at the moment!

    Will let you all know how I get on!

    Suzanne

  • The BSR guidelines recommend urgent referral for specialist evaluation.

    rheumatology.org.uk/include...

    If they won't agree to an urgent referral then the obvious question is are they following the national guidelines and if not why not?

  • Keyes

    GPs are not issued with those guidelines. They are issued by the British Society of Rheumatologists direct to Rheumatologists. They have to belong to the BSR to practice and they pay a membership fee (think Trade Union).

    GPs are issued with guidelines which are cleared by NICE. There is quite a queue of guidelines waiting for clearance and issue.

    GPs can use the NHS site and Patient.co.uk, and other websites to enable them to read up on specific guidelines.

  • Sorry Sambucca but you are wrong. The guidelines are freely available on the Internet, they are not just for BSR members. The guidelines state quite clearly that they are for Dr's in primary and secondary care to help manage and refer GCA. GP's can become members of the BSR as well as physios and specialist Rheumy nurses etc.

    The BSR are a professional organisation, I would imagine most Rheumy's are members but they don't have to be. Dr's have to register with the GMC to practice, the same way that nurses have to register with the NMC. Membership of any other organisation is voluntary.

    There is actually a representative of PMR/GCA on the guidelines panel. A quick check of the NICE guidelines for GCA states they are from age 40 onwards and that shared care is recommended ( it mentions only rare situations where patients are frail or housebound and will be managed by primary care ). Therefore Sue's treatment is not covered by the NICE GCA guidelines as well ( dated 2014 ) .

    I am puzzled by your need to comment the way you did. Are you saying that Sue's treatment has been optimum? Was I very wrong to suggest that she mentions specialist guidelines to her GP when they appear not to be following them? Kate Gilbert talks about the diagnosis of GCA in the under 50's in a recent edition of the PMR/GCA magazine. She took the time to contact the top experts wordwide ( USA, Italy and UK ) they all said that it was exceptionally rare in the under 50's and specialist referral was a must in such cases.

  • Sambuca didn't say they couldn't have them or that they are not freely available, she sends them to anyone who asks for them - it's more they don't have them put into their sweaty little palms - and when they do, they still don't read them!!! Often even though they have a patient with GCA and they haven't ever seen it before.

    I think you may have read something into Sambuca's comment that I can't see - she was answering your comment about GPs not complying with Guidelines - that they don't actually get sent. And I have had rheumies tell patients that Guidelines are only guidelines and can be ignored.

    As I remember though, Kate's recent comment about top experts saying it is "exceptionally rare in under 50s" may actually have been about PMR rather than GCA. And the rheumies I spent a week with in Whistler earlier this year certainly were of the opinion that neither PMR nor GCA are "exceptionally" rare in under 50s. They happen.

  • No one gets given guidelines direct into their hands any more, they are produced and clinicians are expected to look them up.

    They aren't issued direct to Rheumatologists ( and no one else ) and they don't need to be members of the BSR to practice.

    Guidelines are produced for a reason, clinicians are supposed to justify and document why they are treating patients out with the guidelines.

    All I was attempting to do was highlight that a specialist referral was required in this situation ( and provide evidence to back this up ) but I will bow out of this conversation and the group.

  • Wow, im 57 & drs telling me im too young to have gca, so nit looking at it seriously for me. Sorry, girl, i hope you get much better. Be super careful with your eyesight, it can be damaged very suddenly.

  • Thanks for everyone's replies so here is a quick update!

    I still haven't managed to get my gp to refer me to a rheumatologist but I did see the opthalmologist today who said my eyes are fine and she doesn't agree with the diagnosis! She's going to write a letter to my gp so hopefully they'll then refer me for a proper diagnosis and treatment!

    Suzanne

  • Good. By the way - I think you are entitled to a second opinion and referral to an appropriate specialist. GCA is a diagnosis no GP is really capable of making plus you are extremely young for it and I would be insisting on referral. If the GP won't - ask to see the practice manager.

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