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PMRGCAuk
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MED CHANGE FOR GCA

Hi. After PMR diagnoses October was in 20mg reduced to 10 - with symptoms coming back at 10mg. Then had head/sight/temple/jaw problems and bloods monitored etc - now GCA diagnosed. Saw GP yesterday to discuss last bloods. Has been started on 40mg pred last week (I believe thought to be a bit low) and took that for a week. CRP down a fair bit so now says take for six weeks, reduce 5 mgs a week and get bloods done again and see you when you down to 10! Oh I was given Alandronic Acid (sp) when i got put on 20 mg pred for PMR. This doesn’t seem to be the standard it seems very fast compared to what I am reading about others! GPalso referred me to get a Dexascan - will it give a true result if Ive already been on prednisolone since October? most welcome thank you xx

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Yes, too fast. There will be more knowledgeable people along to give more advice about GCA. Maybe you could ask your GP what he thinks of the recommendations in this paper:(GCA dosage recommendations in a table a little over halfway)

rcpe.ac.uk/sites/default/fi...

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Thank you. I had read a few bits but hadn’t felt confident enough in my knowledge to address it with him. However I will speak with him when I’m lucky enough to get an appointment to see him! He is normally a good GP to be fair and hopefully be open to discussion. I will show him this information. :) MAny thanks xx

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Have you been referred to a Rheumatologist?

As GCA is a Vasculitis variant the clinical guidelines say it should be diagnosed and managed by a Consultant, not a GP. Apart from anything else the mimics need to be ruled out/ checks done for large vessel involvement.

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When I saw him last week the GP spoke with Opthamologists at hospital (via telephone) whilst I sat there, and spoke to a Consultant (vascular I think). He gave him the advice and doses etc and Consultant advised I had a week on 40 mg and returned for bloods. GP asked about the biopsy and Consultant suggested No point, given I had been on steroids already since early October. Did have eye symptoms, jaw pain and one sided headache/eye pain. With ocular auras, and PMR since October. GP was advised if blood results responded a certain way after the first week (after having being quite high in association with eye symptoms), then to continue on the regime described on my last post! :/ xx

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Vascular surgeons don't manage Vasculitis in the same way that Rheumatologists don't operate on aneurysms etc!

The Opthamologist should really have seen you and examined your eyes at that point.

I do think that diagnostic certainty is important given that you are likely to be on prednisolone for quite a few years.

Vasculitis ( there are over 18 different types ) is a rare disease, whilst GCA is the most common variant it still only has an incidence of 1 patient per 2000. it can affect the aorta and the large vessels off it and cause aneurysms etc. These can be clinically silent, has anyone listened over the arteries in your neck etc for bruits ( added whooshing sounds that can indicate a narrowing ) or checked the BP in both your arms?

Given your young age I think you deserve better care than this. I note you are in Inverness ( I am in Scotland as well ), there is a multi disciplinary Vasculitis clinic at Aberdeen Royal which is happy to take referrals from other areas. Unfortunately once you have been on high dose prednisolone for a few weeks it tends to destroy the evidence making a definitive diagnosis more difficult.

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These are the evidence based clinical guidelines for treating GCA

academic.oup.com/rheumatolo...

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Thank you xx

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Hello Keyes

I am thinking how few of us seem to have had anything like the thorough treatment you are describing ...

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I would agree Rimmy. The sad thing is that listening for bruits and checking the BP in both arms is quick and simple!

I do think that any variant of Vasculitis is far too complex for a GP to manage. Would we put up with a cancer diagnosis made over the phone without specialist investigation?

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Hi,

Never had a chest X-ray, ECG, nor CTscan in my whole GCA journey. Did have an MRI, but on my shoulder only!

Can only assume that because of my eye “problems” the powers that be concluded my GCA had gone up from the neck rather than down!

As I’m still alive and kicking I guess they were correct!

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Thank. Maybe they made similar assumptionwith me too then:/ however. Since “PMR” diagnosis sore calves (both) has been a symptom and checked! I feel it’s jusr so hArd to know what symptom is linked to what. (If at all). Don’t want to “rub them up the wrong way” but at the same time want the right treatment :/ xx

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The problem is though that many specialists (from what i have gleaned here at least) don't seem to have even a good basic understanding of GCA and how to diagnose and treat it appropriately. I have actually avoided the local ones (who travel here and are only intermittently available) and stuck with an amenable GP who at least listens and has willingly taken on board any information and resources I have been able to offer him. Of course I regard this situation as far from 'satisfactory' but I was reluctant to see medicos who I might have inconsistent access to and with whom I would likely have to debate the basics - even to use Prednisone in the 'correct' way.

The one specialist I DID see - an ophthalmologist was (unsurprisingly) quite haughty and dismissive - and after checking my eyes (following several weeks on Pred) just said all looked 'OK'. It was apparent he was quite doubtful about my GCA diagnosis and the Pred treatment although the symptoms had been quite 'classic' and I had indisputably had PMR beforehand. So I guess social/geographical context is very salient if not always definitive of the very 'best' treatment. In areas with large populations - like big European or American cities it may be possible to get someone with experience (and suitable education) but in a small rural/regional Australian city this is not necessarily the case - and forums like this are really invaluable when trying to monitor one's own situation.

Best wishes

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Am in BP meds also and since these symptoms have appeared my BP has gone up a bit. (Readings are often a fair bit different in each arm) However, despite recording this and telling them, my BP wasn’t checked or any Bruits listened for :/ xx

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How different are the BPs on your arms? If they are more than about 10-20 different then it needs to be investigated. One cause is a rule-out for GCA.

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Thank you. It varies but sometimes the systolic can be around 30 higher in one arm than the other - they don’t seem concerned about that at all - just glance at overall figures. See they are are down and tell me how great my BP is since medication! :/ x

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mayoclinic.org/diseases-con...

They really should be. As I say, one of the causes of that is something that can cause similar symptoms to GCA but is totally different. When your BP was high, did they do a lot of tests or just put you on medications to bring it down?

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Hi. No they didn’t do tests just gave me different BP medications until they found one that finally worked with minimal side effects! It was after the high BP episodesthat auras started! :/

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I think I would be asking to be referred asap - you have symptoms of at least subclavian steal syndrome and I would want to have it ruled out.

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my care is abysmal and I have lost sight in both my eyes while being told I don't have GCA and there is no danger to me and my sight. I have had no diagnosis as to what is the problem other than I have been unlucky (twice) no one can tell how I have lost my sight. I have been offered no treatment, had several stop and start courses of steroids. No alternative care plan to deal with what is wrong with me. No pain relief, and now I have been labelled as a nuisance patient by both my GP and my hospital. I've had hospital appointment where the pain has been so bad I have barely been able to function and still been treated as though I was making it up. When I was fraught I was treated like I was .... well like I was an aggressive individual. When I first had symptoms I was told I was too young and didn't have polymyalgia so could not have GCA. I was 59 and that decision seems to have prejudiced my care going forward from then.

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Hello janemanby

That is astounding and terrible !! I am assuming you think it was/is GCA that caused your eyesight loss otherwise why the steroids ? 59 is most certainly NOT too young for GCA and WHY is there no effort for another diagnosis if they think it wasn't GCA !! ?? I hardly know what to say and I think many others on this forum will be equally horrified to read about your circumstances. Perhaps you can take some kind of legal action but i know little about such things and at this point it is probably more important you get some appropriate medical treatment ! I hope others come on board soon and make some helpful suggestions as others may have had (I am hoping NOT too many though) similar experiences !! i am just so sorry to read your account of what surely is not jut ineptitude but 'negligence' ... !!!??

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Hi janemanby,

Like Rimmy I am bewildered at your treatment.

When you say you lost sight, do you mean irretrievably, partially or temporarily?

Presumably you have the normal symptoms of PMR/GCA, and if so, did steroids help?

As a matter of interest in what country do you live?

Think you need to change GPs and get a proper diagnosis.

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I had the fraut patient "being aggressive" experience too. I never saw that doctor again - she was my husband's colleague and he was present but it seemed to make no difference.

I agree with the others - you have been treated appallingly by ignorant fools. You can have GCA at any age over 50 and probably younger too - and you can have GCA without having had PMR previously, like any of the symptoms it does not appear in 100% of patients. There is even one form of GCA called occult GCA which has no signs or symptoms until the patient wakes up one morning having lost vision in one eye (if they are lucky, it can be bilateral).

I would be first of all seeking a good rheumatologist who treats the patient without having preconceptions and then I would be hot footing it to legal advice.

Where are you?

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Hi,

5mg a week is much too fast in my opinion. It doesn’t give you enough time to know whether each reduction is still giving you enough protection. If you have a flare it can sometimes take up to 2 weeks to surface, so in your case you will have reduced by 10mg and therefore cannot say at what level things were controlled. Could be anywhere between 40 and 31mg!

If you stay at each level for 3-4 weeks and have no return of symptoms, then it’s fairly safe to say ‘that’s dose is okay, so I can reduce’ not always guaranteed but much safer than weekly tapers!

I think a lot of GPs who don’t understand the illness think that a large dose at the beginning solves everything- and then you get off the Pred ASAP. It doesn’t work like that, yes the initial dose gets a grip of the built up inflammation, but your GCA is not cured and continues to produce inflammatory substances every day so you need to find the lowest level for you that will control that.

Go too quickly and you’ll find you’ve gone past YOUR level!

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I know from my very limited experience that going too quickly is NOT THE ANSWER!

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Thank you. I will have to take “evidence”!with me and discuss the speed of reducing with GP then as it’s pointless going ahead on that regime If its unlikely to help or let me know where symptoms kick back in etc. Thank you for your advice /) xxx

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The evidence that his way is not working is the fact that you’ve flared!

Just “suggest” that perhaps you would have a better outcome if you reduced more slowly! I’m sure you can make it sound as if it’s his idea all along.

Good luck.

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:) I will try and do that Dorset Lady. Apply my best “people skills” thank you xx

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