Not diagnosed with GCA - never heard of it till recently, sorry 😕 - but worried as ESR high and GP suggested it as possible diagnosis...

[flossiew]

Dear folks,

I have had "weird" headaches *(stabbing/ electric shock feeling on the left handside of my skull together with a tender scalp)* over the last few years which never lasted any more than several hours at the most so I never bothered going to see GP about it, but since the beginning of July till a couple of days ago I have had them more or less non stop. The headaches this last time were preceded by a flu- like illness: aches and pains, mild fever and loss of appetite. I have noticed in the last couple of years that the sight in my right eye gets blurry on occasion and that I am able to see less detail with it at night time. I mentioned this to my optician when I went last year but they didn't notice anything untoward.

As my headache now has lasted for such a prolonged period of time I saw my GP who said it could be a migraine - I know it isn't as migraines knock me out flat - some sort of neuritis ( I forget the name) - or GCA... She sent me for lots of blood tests which I had done on Thursday morning - (liver function u&e etc) - but the only one that was abnormal was my ESR. However, due to my having asthma and succumbed on Sunday just gone to yet another chest infection, she wants me to get my ESR rechecked on Thursday to ensure it's not due to my asthma flare. I am worried that she is dragging her feet and am worried about the repercussions it could have. I really would be grateful for any advice. Also, does anyone know if taking amoxicillin would give an incorrect reading of what my ESR really is??

Thanks for your time, Flossie

[SnazzyD]

Hello, others will reply but I’ll kick off with saying that your chest infection antibiotics or not would quite easily put up your ESR. If your GP is even considering GCA and/or feels she is unable to make a decision then she really ought to refer you. If it is GCA sitting on the fence is risky.she may well be worried about sending you off down the path of prolonged steroids but she needs to explain her plan or get someone else to make one.Can you see someone else or take someone with you and be a bit more persistent in getting a referral to a Rheumatologist or neurologist.

[flossiew in reply to SnazzyD]

Thanks for getting in touch - my GP did say that she "might" refer me to an opthamologist and/or rheumatologist but I think she's waiting for the next blood test results to come through first. I am not sure why she is being so indecisive. I had hoped she might at least have given me a course of pred for my asthma as that is what it usually needs to knock it on the head, but no joy there either! I will explain my concerns to my asthma nurse this afternoon - perhaps she might be able to do something.

[SheffieldJane]

I agree with SnazzyD that your doctor ought to be treating potential GCA with more urgency because of the risk to your eyesight. Even if your chest infection and antibiotics are obscuring the picture, in my view you need an urgent referral to a specialist. Failing that get yourself to A&E. It should be given the same urgency as a stroke.

[flossiew in reply to SheffieldJane]

Thanks for your reply. I am not sure why my GP is dragging her feet so much. What concerns me is the fact that my ESR was raised before my chest infection was an issue - bloods were taken on Thursday and the chest infection didn't show itself till a couple of days later. I think I will have to ask for an urgent appointment with one of the other GPs.

[DorsetLady PMRGCAuk volunteer]

Hi,

Agree with others, if your GP is considering GCA, then she ought to be doing more. The last thing any doctor should do in the possibility of GCA is dither!

Even if just to give you a short trial of Pred, a couple of weeks will do no harm, but will give time for other options to be considered.

[flossiew in reply to DorsetLady]

That's what I thought would be the sensible thing to do too! I really can't understand why the GP is dithering so much. I had a phone call from one of the reception staff at my surgery on Monday saying my test results were in, and it was nothing to worry about, but one of the doctors would ring me today about it. I did try to tell the receptionist that I already had an appointment booked (yesterday's) to see someone about my results, but she didn't get what I was trying to tell her! The good thing is that when this other doctor calls later today I can put my concerns to her and see if she will be a bit more proactive - failing that, my asthma nurse may prescribe steroids to knock my asthma flare on the head. Although it won't be the hefty dose I should be on, for even the possibility of my having GCA, it will still be better than a kick in the teeth as my beloved hubby would say!! ☺

[DorsetLady PMRGCAuk volunteer in reply to flossiew]

Mmm, until I knew better I was fobbed off with ESR reading as being okay - in fact written on records I saw later it said “satisfactory”

I now know it wasn’t satisfactory!

Please get some figures for ESR from doctor - even if you don’t understand them it’s a reference point for future. Plus express your concern about sight problems should it be GCA. That usually makes them spark!

[flossiew in reply to DorsetLady]

I am seeing my asthma nurse in a couple of hours time and can ask her for a copy of my ESR results. I may also ask if she can book me an appointment in the system for one of the doctors I trust, as I had a phone call this afternoon from one of the other GPs who was very abrupt with me when I tried to explain my concerns and told me not to get another blood test till my chest infection had cleared up which can take a while. I don't understand why they are being so unhelpful and lacking in any kind of understanding.

[PMRpro Ambassador in reply to flossiew]

He is right in some ways - the asthma and infection will raise the ESR anyway so it won't be definitely due to possible GCA.

[DorsetLady PMRGCAuk volunteer in reply to flossiew]

Agree with PMRpro about raised ESR being something other than GCA, but they should also be addressing symptoms!

[PMRpro Ambassador in reply to DorsetLady]

Exactly!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Do you ever feel you’re banging your head against a brick wall? 🤦🏻‍♀️

[PMRpro Ambassador in reply to DorsetLady]

Frequently!

[flossiew in reply to DorsetLady]

Yes!!!

[flossiew in reply to flossiew]

I got my asthma nurse to print out a copy of my blood tests - my ESR was 75 ( I am 54 so I think my ESR should be about 27) but she also said it could he due to my chest infection and to wait till it has cleared before getting my bloods checked again... I just wish someone would use their noggin and think it might be useful to start me on steroids "Just in case... 😕

[PMRpro Ambassador]

As I've already said today - never mind the choice of a new medication, it's the GPs who cause the biggest problems!

I agree with the others - she should be being more proactive and getting an expert opinion.

[flossiew in reply to PMRpro]

I am going to try to get an appointment with one of the other GPs in the practice - I feel I can trust his judgment more than some of the other doctors I have had dealings with over this issue. It's a waste of their time and mine though. If the proper steps had been taken in the first place it would save a lot of worry! I would much rather be on a hefty dose of unnecessary steroids than run the risk of losing my sight.

[PMRpro Ambassador in reply to flossiew]

Quite.

[Telian in reply to flossiew]

Even my Rheumy says symptoms mean more than blood results, insist on being treated for GCA in the meantime, it's your eyesight not theirs!

[flossiew in reply to Telian]

I can only think the reason for them to be dragging their feet is possibly because I have had similar headaches before, though not for such a prolonged time. The GP suggested I could have some sort of neuralgia 😕

[PMRpro Ambassador in reply to flossiew]

Did they find a cause for the earlier headaches? That they went away doesn't mean it wasn't GCA that burnt out and went into remission - perfectly possible.

[flossiew in reply to PMRpro]

I have been back and forth to my surgery so much in recent years with other health issues - asthma and repeated chest infections; torn cartilage in my knees etc - I didn't want to bother them for a headache/headaches that despite being unusual didn't cause me any real problems! I am my own worst enemy at times...

[Telian in reply to flossiew]

Same as me, I was 'at it' for 6 years - going from one department to another starting with an angiogram, as had one sided facial numbness, jaw ache and sore temple/head, then treatment followed for migraine and trigeminal neuralgia then to maxillofacial, checking for jaw misalignment, TIA, elimination of stroke, never once had ESR checked, or it was never mentioned, then started with visual disturbance and things started to get worse in terms of headache, couldn't lift my head up, like carrying a sandbag on one side of my head and felt so unwell by then - luckily my then new GP knew about GCA and the rest is history as they say - once on pred all symptoms disappeared instantly - until I started to reduce and suffered withdrawals which eventually I learned the difference between those and a flare - am on 4.5mg after 52 months. The GCA symptoms intensified 8 weeks before I was diagnosed and had no idea what it was, learnt the hard way so to speak and didn't find this site until 3 years after diagnosis...

[flossiew in reply to Telian]

I guess I am very fortunate to have found this site when I did - I am glad that at least one person knew how to deal with your concerns and got you on the correct treatment even though it took such a long period of time. I trust you will soon be able to come off the pred for good with no ill effects.

[Telian in reply to flossiew]

Hope so but not stressing out as that doesn't help either, am more comfortable with myself now facial puffiness more or less gone, still got pred head but can't have it all, thanks flossie and best wishes to you too.

[Mikb]

It sounds like GCA, but I have a friend who was recently diagnosed with Trigeminal Neuralgia and her symptoms presented a lot like GCA. It's been a week now, any updates on a diagnosis?

[flossiew in reply to Mikb]

Hi! Not yet unfortunately as my asthma is playing up so my ESR will still be high whether it's GCA or not. My GP suggested it might also be what your friend has been diagnosed with - will be thankful when I know what's going on and start whatever treatment may be needed. At least I am now on 30mg pred to whack my asthma flare on the head!! Once all the antibiotics etc are out of my system i will get my bloods checked again. Trust you're keeping ok, Flossie 😊