GCA symptoms

[Lisa630]

Hello there my name is Lisa . . Oh gosh where do I start and how do I make this short . .

Ok, 2 months ago I started having ear pain had 2 courses of antibiotics which didn't work, by now I had headaches at the back of my head (never in temple area) then I developed gland pains in my neck kind of under my jaw (no pain on chewing)

So I had a blood test 4 wks ago, results were CRP 113 . . Yer ops. . . So steroids were prescribed and I eventually took I really didn't want to go down that road as I'm a qualified licensed Homeopath, steroids are not homeopathic in any shape or form so this is really hard for me, anyway they brought bloods back to 11 in just one week, got appt with rheumatology and they said to come off Pred as symptoms didn't really seem to match and bloods were now normal . . Came off and within a day had all my symptoms back a wk later my bloods were CRP 86 back on Pred and biopsy booked. . . Somehow they are now convinced I have GCA. . What my fears are is going through a biopsy is pointless as the STERIODS are now in my system again and so will give false diagnosis as stated in patient info for GCA

Plus I true.y feel I don't have it and yet they want to put me through a little op to prove I DONT. . . Do I just go along with all this . . Does anyone else think my symptoms sound like GCA. . I'm scared and frightened

[PMRpro Ambassador]

I do understand how distressing it must be for a homeopathic practitioner to be faced with pred (my medic flat mate at uni is also a qualified homeopathic doctor) - but in the case of GCA I'm afraid you have a stark choice, as we all do: at the current standing the only thing that will avoid blindness is high dose pred for a time - you don't stay at those very high doses for ever though.

An ESR of 113 is an indication that there is something majorly inflammatory going on in your body. That the ESR fell dramatically in a week with pred doesn't surprise me, nor does the fact that it went back up so dramatically immediately you stopped it and the symptoms come back. This dramatic response to pred and return of symptoms without it is very typical of the associated vasculitis called polymyalgia rheumatica - and it is also likely in GCA. That may be what has convinced them this IS GCA after all.

The biopsy isn't entirely pointless - although only about half are positive anyway. The nature of GCA is that the pattern of giant cells in the arteries is irregular - and very easy to miss however long the sample is and however many sections you study. It is thought that the chances of finding something reduces by about 10% for every week of high dose pred. But the bottom line is that having a negative biopsy doesn't really prove 100% it isn't GCA. You COULD, therefore, ask the rheumatologist if the result of the biopsy will affect how he treats you - if he is sure enough it is likely to be GCA and he'd carry on with pred then is there any point in doing it given the chances it could be a false negative result.

As for your question "Does anyone else think my symptoms sound like GCA?": It just so happens I was at the ophthalmologist at the hospital yesterday for an eye check myself and we were talking about GCA and the risks of it being mistaken for something else by the GP. She has a patient at the hospital up the valley who had ear pain and other symptoms like yours and was put on antibiotics by her GP who thought it was otitis media - a middle ear infection. Needless to say they did nothing to help - but a couple of weeks later she suddenly lost the sight in one eye. Cue rush to A&E and the eye specialist who recognised GCA immediately. The lady was given massively high dose i.v. pred but no sight has returned in that eye - once it is gone in GCA it is gone. Luckily it wasn't so far advanced that the high dose pred didn't save the sight in the other eye. In the majority of cases where visual loss in one eye has already occurred before treatment the vision in the other eye goes within about a month.

I think it sounds enough like GCA to accept a need for high dose pred. I'm afraid I feel that whatever unpleasantness accompanies pred in the form of side effects they are infinitely preferable to risking going blind. It isn't often I approve of "just in case" medicine - this is one.

[PMRpro Ambassador]

PS. It is possible to have GCA or another cerebral vasculitis that doesn't affect the temporal artery - the risks from the vasculitis are similar though. It may be they want to do the op on an artery that is easy to access to see if there is any evidence of inflammation. When is your biopsy booked for? And what dose of pred are you on?

[Lisa630 in reply to PMRpro]

Thank you so much for you reply, I'm still in shock I think and very tearful, but just getting this info is so reassuring . .

I've been told to take 8 Pred 40mg a day . . I take 4 in morning and 4 tea time to space out the shock to my system. . When I took 8 in the morning with my first course. . It make me feel very odd!

Doc said split dose was ok, I've not discussed it with rheumatologist

Biopsy booked for 12th Dec but they are ringing tomorrow to see if they can't bring it forward. . Does it hurt. . I REALLY don't do needles let alone hospitals. . X

[PMRpro Ambassador in reply to Lisa630]

I'm not sure about the better way to take pred with GCA, certainly in PMR it is far better to take all the dose in morning because the main symptoms is morning stiffness and taking it all at once achieves a better reduction of the inflammation so faster reduction of the stiffness. But PMR is a much smaller dose and at the 40mg level it probably doesn't make much difference. I would ask the rheumy though, just in case. Yes, the high doses of pred all at once can make you feel strange. The pred will also contribute to the emotional feelings - and it is always a shock to be even threatened with a serious illness.

I'm not going to lie and say "Of course it doesn't hurt" - obviously it does after the event if no other time. You get a local anaesthetic to numb the temple area - and equally obviously a needle is involved just like at the dentist. However - since you obviously suffer from a nasty attack of "white coat syndrome", do tell them your fears before going for surgery. Discuss it with your GP as well. For many procedures they can give nervous patients a sedative and they remember little or nothing of the procedure once it's finished. Hardly homeopathy either I'm afraid but sometimes needs must.

You will find a lot of info here:

pmr-gca-northeast.org.uk

and the national charity also has a website but I don't have link. I believe there is a helpline too if talking to a person would help calm you down - chatting via the forum is a bit longwinded!

Is your tummy OK with the big dose? Usually they hand out omeprazole or something similar but lots of people who can't take it for one reason or another have found yoghurt helps avoid irritation of the stomach with pred. That does count as natural if not homeopathic.

[Lisa630 in reply to PMRpro]

This might sound a little weird or even odd. . .. But I take my Pred with milk shake or yoghurt drink, I've been craving milky stuff and eat live yoghurt by the pot full.

I don't have any muscle problems stiffness or other except when I'm taking Pred and then I get a kind of restless leg syndrome my calves kind of ache . . .

The week I was taken off Pred I was only in pain in the afternoon evenings, headache at back ear ache and glands hurt . . .that was my only symptoms apart from feeling lethargic

Thank you for info on biopsy, think I will ask for a sedative as I really dislike the thought of them being right there in front of me with a NEEDLE . .lol

Yesterday I was dying in bed here, today after one days on Pred again I've been out cleaning all the chicken houses out etc. . . . Pooped now mind. . .i wonder if you could sell this little white tablets on the black market. . . They sure give you a high for a while. . . Could say they give you wings . . . X x

[PMRpro Ambassador in reply to Lisa630]

Mmm - yes, a common effect of high dose pred! Careful though - you are still ill, the pred is just managing the symptoms. Some would say masking but in GCA it really does reduce the inflammation that can block smaller arteries and stop the blood flow to the optic nerve which is what is such a risk. I call that a bit more than masking...

Yes, I think it is most likely the speed you have lost the symptoms that makes them so sure it could be GCA. If it is you are lucky because you haven't the really typical symptoms - and that is a problem when doctors struggle to recognise even the patients who stick out a mile when you know what to look for.

You can always close your eyes - you don't have to watch them approach!

[epsharp]

Lisa, I am in the U.S. so not completely sure about the U.K. surgical method for GCA biopsy, but will add a few notes about my experience with it. Last December I was diagnosed with PMR. When the rheumy said she recommended a temporal biopsy, I thought it to be a bit of waste. I didn't have the standard symptoms either...only slight headaches a slightly raised temperature (periodic). However, 2 to 3 days prior to biopsy, my left jaw hurt when I ate. My vision was slightly blurry and I had "aura migraines" -- but I chalked that off to the shingles problem I've had for many years where the virus settled in my eye, for which I take a daily drop of prednisolone.

For the biopsy procedure, I was happy to have the anesthetic and woke up surprised to learn I was positive for GCA. I had no post-biopsy pain at all. As others more knowledgeable has already stated, most of us have a love/hate relationship with prednisone, but it's the only drug that gives us the ability to function and eventually eliminate the symptoms.

As a side note: For several months prior to PMR/GCA diagnosis, I experienced developed Pulsatile Tinnitus (means I hear my heart beat 24/7). On a few occasions I experienced extreme ear pain (when lightly touched) I did see an ear specialist, got a diagnosis, but essentially nothing can be done at this time...only if the pain becomes more evident and prednisone is at a very low dose. My rheumy didn't seem to think there is a correlation. You will find more knowledge on this forum than from any (or most) medical professionals. Best of luck to you moving forward! Penny

[Lisa630 in reply to epsharp]

Ah thank you Penny that's all very reassuring I'm beginning to come to terms with things and just maybe I do have it, only a few weeks to wait I guess. Let's hope the STERIODS don't mask the results in any after taking them for several weeks . . Thank you Penny take care, Lisa x x

[PMRpro Ambassador in reply to epsharp]

I have seen mention of ear symptoms, especially tinnitus and pain being GCA symptoms. I also had tinnitus almost 24/7, very mild and not pulsatile ,in the years before they agreed it was possibly PMR that I had. For a short time I had had scalp symptoms and for longer had had jaw claudication as well. The presenting symptom really was leg claudication, in the thighs, and upper arm claudication. No one in the UK picked up on that - but in retrospect the consultant here agreed I very probably had something more GCA-ish than PMR-ish. No one asked the right question initially in the UK and I didn't know then what I have learnt in the last 5 years!

[30048]

Yes...your symptoms sound like you have it. I saw a dean of the UCLA Jules Strein institute , who was a specialist in GCA and she told the student with her that whenever Prednisone works that fast....it is GCA.