Diagnosing GCA

[Nettejames123]

Hello everyone,

I am very concerned about a friend of mine who has all the symptoms of GCA except her blood tests show nothing untoward. She has been to hospital twice where they have carried out scans, eye tests, etc. but nothing shows up. Her head aches are terrible, she can't eat because of pain in her jaw, her neck is agony all the time and she feels dreadful. Two weeks ago she lost sight in one eye for about ten minutes and now has blurred vision all the time. She started having symptoms about ten weeks ago. She is now having to wait two more weeks for a biopsy. Her consultant says he doesn't think it is GCA as she hasn't enough symptoms but from what I have read she seems to have most of them. What should she do as she is feeling pretty desperate? The strange thing is I had exactly the same symptoms, as did my son, starting about the same time and my GP thought I might have GCA but after suffering terribly both my son and I recovered without any treatment. Is there a virus that mimics GCA as several other friends are experiencing similar symptoms?

[friedlolo]

My Mayo rheumatologist, well known expert, told me he didn't think I had it. that was after the biopsy results were back. But, I did. So much for expertise.

Actually, it was my neurologist at Mayos who diagnosed it. She is brilliant but I was actually seeing her for erythromelalgia. She took pity on me and saw me, tested my ESR and CRP. The sed rate was slightly elevated but CRP normal so she treated me w/ Pred because she thought we would give it a try and see if it helped. Both have been normal ever since. Some patients do not have elevated tests that show inflammation in the body and I am one of them.

Four years w/ the headache, PMR and taking prednisone. HA mostly in remission though worsening lately.

[Nettejames123 in reply to friedlolo]

Thank you very much for your helpful response. I am happy to say that I spoke to my friend this morning as she has now been put on steroids. Thank goodness! So the experts aren't always right then! I would be surprised if she doesn't have it but at least they are doing the right thing. Do hope you continue to,make progress.

[friedlolo in reply to Nettejames123]

You're welcome.

FYI: Medical protocol is to start oral prednisone at 60 mg a day. The headache probably will not be relieved right away even at that dose. If she was started at a dose less than that she should go back to the MD as controlling the headache should be the goal. Don't dither and think one needs to see if it works. If it is going to work at a lower dose then it should help within a week.

Eradication of the headache is the goal. Has she had a biopsy done to prove it is temporal arteritis (same as GCA)? If not, she should request it as there could be another cause of her HA if the biopsy is negative.

Go to mayo.com under diseases and conditions and read about dosing.

[PMRpro Ambassador in reply to friedlolo]

While a positive TAB is 100% confirmation the patient has GCA, a negative biopsy is not diagnostic that it is NOT GCA, It only means that they didn't find the characteristic giant cells that give the disorder its name. Only about 40% of patients with GCA show a positive biopsy - hardly helpful but there are too many doctors who believe it is a black or white test. No it is not!

[Nettejames123 in reply to PMRpro]

Many thanks for that. I will pass on your message.

[jinasc]

I am assuming you are in the UK.

The medical people should go on the symptoms, not markers like ESR and CRP, as you have said in some people they just do not move.

Go to this site pmr-gca-northeast.org.uk and under Useful Medical Information, download and take the BSR Guidelines on the Diagnosis and Treatment of GCA.

Then go to A&E and insist on seeing the Consultant in charge and tell him about the loss of vision and the constant blurring and stand your corner and insist on being given a dose of pred 40-60mg and if it works quickly then it is GCA.

Go now if possible - if that sight goes even partially -once gone it is gone.

If you cannot do the above, go an Opthamologist, they are trained to spot GCA as fast as possible. Specsavers will do. In fact, they will pick up the telephone to the nearest hospital.

But really this is urgent and should be dealt with like a stroke or a heart attack.

So last Friday on this site another one and we still do not know what the outcome of that one.

Please let us know the outcome of this one.

Get cracking.

[Nettejames123 in reply to jinasc]

Many thanks for your very helpful response. I am happy to say that since posting last night my friend has told me they have now put her on steroids and she is already feeling better after only a couple of days. It does indeed sound like GCA. I will keep you posted.

[jinasc in reply to Nettejames123]

Thank you for letting us know the outcome. Now we can breathe easy.

I am sorry that it is GCA, but at least there is no loss of vision.

[PMRpro Ambassador]

I would have thought that transient loss of vision and a headache was enough - patients don't display ALL the symptoms of an illness. How stupid can they get!!!! Up to 20% of patients don't have raised blood markers and the patient should be started on pred in the interim even if they have to wait for a biopsy.

In fact, there is a form of GCA where the patient has NO symptoms at all - until they wake up one morning blind. But there is no excuse when someone has warning signs like that - it should be treated the same as a stroke or heart attack, as a medical emergency.

If it were me I would make an official complaint - because we are helpless as long as doctors have these misguided beliefs. Once vision is lost that is it - too late and nothing to be done. Compared with that, a few days of unnecessary steroids is peanuts...

[Nettejames123]

Very sorry to have to tell you that my friend has lost sight in her left eye. I am feeling SO angry because it was avoidable. Apparently she woke up on Sunday morning with no vision in that eye and then panicked and called an ambulance. They said it was a non-emergency (not a matter of life and death) so took their time taking her to hospital. Eventually she was put on a high dose of steroids but by that time it was too late. I am wondering what else I could have done knowing the likely outcome if they didn't get her on steroids straight away after her initial visit to the hospital over a week before. I was so worried as I knew something was wrong but she only told me today when taking her for another appointment what had happened. I feel I should have insisted on going in to see the different medics who were treating her but she said she would not have let me as they were the specialists and knew what they were doing!!! So much for specialists! My worry is that there may be others who will suffer the same fate if they fail to recognize the very obvious symptoms in time. What should I do? Any advice would be welcome as I can't just stand by and see another life ruined unnecessarily.

[PMRpro Ambassador in reply to Nettejames123]

I'm so sorry - you did do your best but there are still many patients who believe the doctors are infallible. Would that they were.

It will be hard for her - but a complaint must be made by someone to be sure that an inquiry is held to try to prevent it happening again. The ambulance control centre was also at fault - loss of vision can be a symptom of a stroke. And that IS a medical emergency so should have resulted in immediate response by at least a rapid response vehicle.

I just hope the pred was in time to prevent the loss of sight in the other eye - because I'm sorry to say that remains a possibility.

[Nettejames123 in reply to PMRpro]

Thank you for that. I still keep feeling there must have been something else I could have done but I don't know what. I have shared an article about GCA on Facebook so that anyone who might have symptoms knows they should act immediately and insist that they are taken seriously. Will let you know the outcome.

[PMRpro Ambassador in reply to Nettejames123]

Do you have either PMR or GCA yourself? Even if you don't, you could join one of the charities and help publicise the problem - education of doctors is essential. Where do you live?

[Nettejames123 in reply to PMRpro]

I have not been diagnosed with either PMR or GCA but because of symptoms I had been experiencing for over two months my GP ordered blood tests which showed slightly raised inflammation on one of the tests. Have now had second test and am awaiting results. I do feel much better now but because of my friend's experience I am going to book an appointment with my GP for a review. I live in Seaford, East Sussex ,UK and my local hospital is Eastbourne District General. I would be happy to join one of the charities and will do all I can to publicise the problem. My only difficulty is that my friend has told my son that I am upsetting her by pressuring her into doing anything as she is under the experts and I am not a doctor, which I'm not but I have read a great deal about the illnesses. It is a difficult situation.

[PMRpro Ambassador in reply to Nettejames123]

Fully understand that - and I do understand your friend's point of view. But nothing will ever alter the fact she has lost her sight because of poor care from a so-called expert. Maybe one day she will realise that and see your side too.

[Nettejames123 in reply to PMRpro]

Thank you. I find it hard to understand how anyone can risk others suffering the same fate. I can't give up but now that she is on steroids I know they are doing what they can so shall leave her in peace. All I can do is tell her I am here if she needs me and try and find some other way of letting others know this terrible disease is still being misdiagnosed. Of course I may be wrong and perhaps it is something else but to me all the signs point to GCA. I am very grateful for your help.