Brewing GCA relapse?

I was diagnosed with GCA in June 2015 with a positive biopsy.

Last month I had an ESR raised almost as high as the when originally diagnosed. On that basis my consultant did a scan which did not show a current GCA problem. Phew. I did however have PMR symptoms so satisfied with that as at that time I was unaware of any GCA symptoms.

Last week I started with fairly light headaches which paracetamol would shift, an achy jaw and discomfort at the back of the neck. My consultant did another scan. Still no scan signs of GCA. Another phew.

I am more than satisfied that he has taken all care to protect me from GCA consequences.

I wondered if anyone knows how long it takes for those pesky giant cells to mess up the arteries.

15 Replies

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  • Hi granny-b,

    Interesting question. I think the short answer to that is - no!

    I'm not sure that most people even know how long it takes from when their immune system stops working correctly to the first onset of physical symptoms. Most don't know when or why their immune systems goes haywire, although some say it followed a trauma of some sort.

    Why mine started when it did I don't know, I wasn't under any more stress than I had been for the previous 10 years, in fact probably less!

    My first symptoms were no more than a niggle really, but I suppose it took a few months for them to become more serious. And another year for them to become dangerous, however I was not on Pred during any of that time.

    It may well depend upon what state your arteries are in, in the first place, and maybe what medication you happen to be on. I was on tablets for high blood pressure which obviously thin the blood, so did my blood manage to circulate better despite the giant cells? Who knows?

    Be interesting to hear other theories, or better still, evidence.

  • Sorry to hear your GCA is being pesky.

    What kind of scan?. My GCA came after PMR.. 1 yr with misdiagnosis then started pred then a few months came the GCA.

  • when I flare and by the way my GCA was diagnosed same time as yours. I had a bout of PMR and pred. For 3 years. Followed by GCA 1 year later. I do not get symptoms when I flare. My CRP and ESR go up. I am on 11 mg. How many mg are you on ?

  • I am on 16 doing slow reduce to 15.. not sure I will make it as I am moving next Friday whoopee.. and am getting a bit more than niggles..

    I really am going slow this time around as I got down to 7 mgs per doc then I found you folks and am doing it according to my body.

    What happens even on slow is I get pains and then after 2 weeks on new dose it all settles down. I don't know if it is flaring or withdrawal.

  • Lin - how many times have we said not to reduce when you are doing something exciting (holidays for e.g.) or tiring (e.g. MOVING HOUSE!!!!)

  • Doesn't that apply to everyone else.. I am unique... Lololo

    OK you are right... Got up this a, m, n shoulders are sore n slight niggling on Temple. I so want this over...

    Thank you for all you do for us..

  • What sort of scan?

    If it was just an ultrasound scan of your head arteries - and in that amount of time he won't have done a PET scan of any sort - then he wouldn't find GCA affecting other larger arteries in the body. GCA is a large vessel vasculitis and can affect many other arteries, not just the temporal artery and the blood supply to the optic nerve. It doesn't necessarily mean you haven't got active GCA, it just means he didn't find what he was looking for as the inflammation could be in arteries he can't reach with ultrasound.

    If the ESR had been just high I'd say it could be anything - as it is, I'd wonder if there is inflammation in your chest arteries. But you have a high ESR AND symptoms - you need a high enough dose to reduce that ESR and get rid of the symptoms.

  • Thanks all for replies. I have just finished 'bleeping' because I typed in answers to your questions then lost them in a technology glitch.

    I had a colour ultrasound on my 1.5 temporal arteries (biopsy took my other half) to check my head and on my subclavian arteries to check my aorta. I heard the commentary as it served as a demo to a senior registrar which made it interesting. I believe this is now the preferred diagnostic tool for GCA rather than a biopsy.

    I had a choice of steroid dose when PMR was diagnosed so changed from 3 to 5 now taking 7 with an option for 10.

    Dorset Lady raised some interesting points about the different meds between original diagnosis and current situation.

    I am ok with current niggle and have another appointment in 8 weeks. I can call if things get worse before then.

  • "I believe this is now the preferred diagnostic tool for GCA rather than a biopsy."

    It is where they have someone trained to do it. Until relatively recently it was just the people who participated in the TABUL study who'd learned for the study but I think there have been training courses now.

  • Wish they did training in US for detection with ultrasound.

  • I know it isn't used in all hospitals. My hospital was part of the TABUL study.

  • I don't know what you mean by a niggle. I don't understand all the options of 5,7,10. You need the lowest you feel good at. Doc. Seems like he's playing games with a very serious medicine. When I had PMR only I was either with pain or without pain. With pain meant more pred. Then pain let up. I am confused with your dose of pred. And niggles.

  • Because there weren't any signs of GCA flare I am being treated for PMR.

    Because I wish to minimise the steroids and other meds, I was offered options on the dose. I had got down to 3mg pre PMR. I thought my own immune system might just be waking up.

    I then opted for the lowest dose which was 5mg. When that was insufficient for feeling better we agreed to try 7mg and if that still doesn't take the pain away I will take a dose of 10mg. All of these are less than the 15mg for a new case of PMR.

    My niggle is that I have feelings like I had about a month before I developed GCA. This is why I made my original post, not my current treatment which I am very happy with. That came in because I was asked about steroid dose.

  • Well, granny-b, I'm sure you'll have replies from others more experienced than I but your treatment seems topsy turvy to me. I was told a scan didn't show anything, which was why a temporal biopsy was necessary. It could still be a negative result even though you DID have GCA, but I've never heard of a positive result not being accepted for a GCA diagnosis.

    I have had GCA twice (and it was not 'in remission' for five years) I was undiagnosed the first time and although I had all the symptoms no-one was able to interpret them - that was about 12 years ago and both times my first symptoms were extreme, debilitating fatigue. Lack of diagnosis meant I had no biopsy and no treatment. My body somehow healed itself. I have since read that that can happen within about 6 months but if it goes over that then it's likely to be somewhat longer before you're free of it.

    The second bout started almost as you describe - headache which paracetamol helped with, achy neck and shoulder which wasn't as bad if I slept propped up but never any jaw problems. My eyes were bright red bloodshot beacons and I went deaf for a time too. I was feverishly drenched in sweat not only at night but during the day sometimes too, particularly from the head.

    When did the nasty little cells start to overgrow? Sorry I can't say. I do know my medics, after going through the cancer possibilities for three months guessed it might be GCA and started me on a high dose of steroids. It was like a miracle and it confirmed their guess! I am so lucky that I had no sight loss in that period - huge double vision and cataracts but no sight loss.

    I do feel that you should go back to your consultant armed with any comments on here that will persuade him/her to have another look at your symptoms, or get a second opinion.

    I wish you well.

    Mega

  • Thanks Mega for taking the time to express your concerns. Unfortunately what started as a mind wandering ponder post got a bit diverted into other things.

    I do have a GCA diagnosis confirmed June 2015 with a biopsy, thankfully no sight loss. Fast forward to April 2016 ESR was raised. My consultant is skilled/experienced in doing the colour ultrasound as a diagnostic tool (as used by Professor Dasgupta - sorry if I spelled the name incorrectly). Although I only had a few sensitive spots on my head and no other symptoms he used the scan to see if I was having a GCA relapse. Fast forward to January 2017 and with the usual PMR symptoms I was scanned again (twice) to check there wasn't also a GCA relapse.

    I am lucky to have a consultant that I feel 100% confident with. His care and responsiveness has been excellent.

    So sorry that earlier posts weren't not so clear. Thanks again for alerting me to concerns. It might have been a sight saver in other circumstances. X.

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