Newly diagnosed with GCA at 46

Hi All

I've literally been diagnosed yesterday and started on 50mg pred. As it was 5pm appointment another gp is calling me in the morning to discuss seeing a specialist I'm guessing for biopsy.

I understand I'm very young to have this and indeed rocked up to emergency centre at the weekend to have it dismissed as an option as I'm too young despite having exact symptoms (excruciating temple headache, bulging arteries, extreme fatigue, night sweats). Luckily my GP is great and suggested it immediately and started on meds whilst he waited for results.

I just wonder how debilitating it is generally. And is it normal to feel pain relief after one dose of pred but be awake 9 hrs later in pain.

I've just started seeing a rheumatologist for suspected RA which seems a bizarre coincidence and was also diagnosed with interstitial cystitis earlier this year. I've had Raynauds for approx 20 years too if any of this is relevant.

10 Replies

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  • OK first thing big hug for doctor, now one for you . Think you will find after taking prednesalone for a couple of day no more pain . You now have a long road ahead you Google will scare you have a good look round this site people on here will answer any questions or if you just want rant go-ahead . Olive

  • Hi Dimelza. Bravo to your GP! I was diagnosed GCA a few months ago and I also have RA. I think the GCA is a secondary disease to RA but you are unlucky to develop it at 46. I am 58 and my Rheumy said that was unusually young. The Pred should kick in in 2 to 3 days and you should be pain free. For me it took about 3 months of tests and tapering and upping on Pred to get a positive diagnosis. The initial biopsy was negative, I went on to have Ultrasound scan, MRI, CT and finally a PET CT and they found the GCA in my Aorta. Now my blood markers are ok and I am down to 10mg Pred and the plan is to taper 1mg a month. So a long journey ahead. Good luck and you will find lots of help and support from this great group x x

  • Can I just say that GCA is not secondary to RA - it is a disease in its own right, a form of vasculitis which RA is not.

  • I think it is far more likely that the symptoms you were sent to the rheumatologist for were not ?RA but polymyalgia rheumatica as your first presenting symptom of GCA. Interstitial cystitis is also something many PMR patients complain about. Had the diagnosis been of PMR then you would be one of the approximately 1 in 6 patients who then goes on to develop GCA. As Olive has said - kudos to your GP!

    You are relatively young yes, but there are documented cases in a 37 year old man and even in much younger patients. That is something we patients dispute all the time with the expert doctors - this concept that there is an age limit before which GCA can't happen makes life very difficult for quite a few people who develop it when still quite young.

    The antiinflammatory effect of pred lasts for 12-36 hours depending on the person - so if you are a 12 hour person it will start to wear off a bit before the next dose is due. You maybe need 60mg, a common starting dose if there are visual symptoms, though you don't mention that. Some people also find that splitting the dose avoids the return of pain during the 24 hours so that might be worth discussing with your GP though many doctors feel this has the potential to make the sleeplessness side of pred worse.

    Since you are already under a rheumatologist - why does your GP not call them to request you be seen as an emergency? Not urgent - that often means several weeks wait, you are just seen sooner than a "routine" appointment.

    How debilitating it is does depend on the person - some younger patients have continued to work but for most people the early stages are quite trying - it is a serious illness and the fatigue can be severe. The high dose of pred is also hard work - but it will be reduced once the symptoms are under control which hopefully will be soon. The biopsy isn't 100% reliable - only about half are positive and a "negative" biopsy (i.e. no giant cells were found) doesn't mean it isn't GCA, it just means there were no signs in the bit they looked at. The diagnosis should ALWAYS be a clinical one, made on symptoms and response to pred. Having a positive biopsy is a major plus though, especially for the younger patient, as no-one can dispute the diagnosis at a later date.

    If you follow this link you will get to another forum on the patient.info site, one which is also used by doctors to obtain information:

    patient.info/forums/discuss...

    This particular post has a wide range of links to useful and reliable places to get more information. I'm giving you the link because this is the easiest way to give you a wide range of sites.

    Now you have found us do come back and ask any questions you may have. Someone will always be around to help - though probably not online 24/7!

  • Dimelza, yes you are a little on the young side to be diagnosed with GCA but not the youngest and it does seem that we are hearing of more and more younger people being affected. A big pat-on-the-back to your GP for being on-the-ball, recognising the symptoms and immediately prescribing the necessary treatment.

    It is certainly "normal" to feel pain relief after just one dose of Pred - I felt a little miracle had been performed when I felt all the symptoms easing away within a few hours! It isn't unusual to be both awake and in pain nine hours later, especially in the early days of treatment and if the effect wears off quite quickly. As your get more doses into your system to get more control over the inflammation, the relief should last longer - if it doesn't and the head pain returns then you should contact your GP, or in the case of any problems with your vision, go straight to A&E. 50mgs should be adequate (I started on 40mg) but sometimes a slightly higher starting dose is needed.

    You will find lots more information on the PMRGCAuk website pmrgcauk.com, including details of a book by Kate Gilbert 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', also available on Amazon, with all royalties from the sale being donated to PMRGCAuk.

    I hope your rheumy appointment comes through quickly and the biopsy can be carried out within the next week or so to ensure that the large cells they are looking for haven't dispersed due to the steroids. Bear in mind that it is possible to have a negative result but still have GCA due to the fact that the large cells can escape the tiny portion of artery removed.

    I'm wondering whether the "suspected RA" may turn out to be PMR, a linked condition to GCA?

    Lots of good luck wishes and do come back and let us know how you get on.

  • As all the others have said, well done to your switched on GP. Welcome to this site, I'm sure between us we can answer most of your questions, and hopefully relieve some of your anxieties.

    Starting on 50mg you will probably get quite a few of the Pred side effects, some not too good, but you have to tell yourself this is a powerful drug and it's doing you good, most importantly saving your sight and stopping you having circulatory problems, even if you don't think so at times! And the side effects do lessen as the dosage decreases. Please feel free to ask anything however trivial it may seem - if it's worrying you, then that's not doing you any good! You will feel fatigued, and you have to learn to pace yourself, and don't be afraid to say " no" sometimes, if you don't feel like doing something.

    Living with GCA and PMR A Survival Guide by Kate Gilbert is a good book to read. available from PMRGCA UK charity or Amazon ( hard and kindle copy), all proceeds go to charity. Good luck

  • Hi Dimelza

    Sorry to hear you have suspected GCA at such a young age. There are other things it could be (e.g. crowned dens syndrome). You don't mention whether you have had visual symptoms. I would recommend that you try to see the rheumatogist you saw about RA as soon as possible, within 48 hours. GCA is a medical emergency, and as you are a very untypical patient in view of your age, the GP needs to get you to a specialist double quick.

  • Pmr Pro spot on ,I was diagnosed at 51 with pmr/gca,im on mtx self injection once weekly,and currently on 8mg pred daily.They thought I was to young it can be younger people who get it youngest 26 I believe.Ive other autoimmune illnesses so not typical case.I suffer mainly fatigue daily ,but my eyes are ok as I presented with visual symptoms as well as the rest.This site is great with good knowledgeable people and you will get a lot from it.Look for a support group there are a few around the country.Your Doc was good recognising it and treating straight off.Good luck.!!

  • Sorry forgot to say I was ill health retired at 51 but im not a typical case ,so don't worry as has been said some folk can manage work.

  • Hi, Sorry late reply. I was diagnosed with GCA in January this year, I'm 49. I had had a pain in my head on and off for about a year, didn't think much of it because it wasn't all the time. Often told doc was tired but that's common with a lot of people isn't it. Life can make you that sometimes, ha! Anyway, eventually told doc about the pain and luckily she, like your doctor, diagnosed GCA and started me on pred. The highest I've ever been on is 15mg a day, on 10mg at the mo. I don't get awful pains in head though, but do feel generally ill lot of time, have night flushes, not really sweats and fatigue. Also am diabetic, diet controlled before the GCA diagnosed, but the pred has raised blood sugars as they can do. So on tablets for that too. Sorry not must advice for you, but I see plenty other replies. This site is brilliant, take care, keep us informed :-))))

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