Newbie with suspected GCA

Hi Everyone, Sorry for the length of this first post but am a worried newbie looking for advice. Until last week I had never heard of GCA but after a number of occasions over recent months where I woke with loss of vision in my right eye ( which my optician was unconcerned about) I suddenly developed headaches over the sides and back of a my head, feelings of pressure in my head, neck pain, a very tender scalp and inner ear pain, extreme fatigue and feeling very unwell . Consulted GP who did ESR blood test which was 30. He started me on 30mg of pred and told me he would request a temporal artery biopsy. Two days later I woke and could see nothing at all out of my right eye. I was absolutely terrified but the vision returned to normal within about 30 seconds. I called the GP and was told to go straight to A & E. I was referred same day to ophthalmology where the dose of pred was doubled to 60mg and more blood tests done. ESR was 22 and CRP 9. I saw 3 different eye doctors who said they were challenged as I was too young to have GCA ( I am 51) and my blood results were not abnormal. However since researching as much as I can on web I have come across cases of people younger than me with confirmed GCA and have also read that these blood tests are not always reliable indicators of the condition. They are now referring me to rheumatology to consider whether it is worth carrying out a temporal artery biopsy as they say they believe this will be normal. They are also sending me for a scan of my carotid artery. I have experienced improvement of symptoms since starting the pred, the scalp tenderness and headache have gone but still some feelings of pressure in head and ear pain. I have not had any more visual disturbances.

I'm hoping someone could advise me how soon should I expect the other symptoms to ease, whether the drop in the ESR result after starting pred tends to confirm the suspicion of GCA and what to expect from a temporal artery biopsy.

Many Thanks

19 Replies

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  • You are not too young to have GCA and around twenty per cent of people do not have raised blood markers which seems to be your case. Also you seem to be showing classic symptoms of GCA and you are very lucky to have such a fantastic GP, they seem to be few and far between. I am so glad that your eye recovered. 60mg is quite a good dose to hold off the GCA. Have the symptoms gone away? If so you should be on the road to recovery.

  • Thanks Piglette I realise from reading this forum that my GP is one in a million. My worry is that if the hospital doctors feel I can't have GCA because of my age and blood test results they may take me off the pred and if I do have GCA, which I believe I do, my sight will be at risk given the visual events I have had over the past months. Over the past two years I have also had significant problems with my left ankle and lower back and am now wondering if that could be PMR. I still have inner ear pain and some odd feelings of pressure in my head but the scalp tenderness and headaches have gone since starting the pred and I feel much better. Do you think that tens to confirm that it is GCA?

  • The sad thing is it seems a lot of us have had to fight our corner against lack of knowledge of some of the medical profession. Just stand your ground and arm yourself with PMRPro's article. At least you have a good GP on your side. PMR tends to be awful pain in the shoulders and/or hips, it is on both sides not one sided. What you describe does not sound like PMR symptoms, but I may be wrong of course. Good luck.

  • I do not have GCA but could someone explain to me why medics are so influenced by the fact that the blood tests are normal when considering a dx. of PMR by which I presume we are talking about the inflammation markers when one is already on a dose of pred. which is controlling your symptoms. Am I missing something here? As for being too young. There is a 40 year old man who has had Parkinsons - too often regarded as solely an old persons disease - since the age of 8. Medics should be guided not ruled by statistical probability

  • paddyfields, sadly, it is simply a lack of awareness and knowledge regarding PMR and GCA on the part of those medics. My blood tests always corresponded with how I felt during my PMR/GCA/steroid journey and proved a useful guide when reducing. However, symptoms are key, and are, in fact, the only "guide" for those who are diagnosed with these conditions in spite of their blood test markers remaining stubbornly 'normal'.

  • Couldn't agree more Paddyfields. I am equipping myself with as much data as I can in case I have to battle to get them to consider GCA as my dx particularly if I have a normal TAB which I know is a distinct possibility.

  • Someone on here has already said that 20% of patients with a diagnosis of PMR have 'normal' bloods. I'm one of those patients and my inflammation levels have remained stubbornly in the low 'normal' range since forever - even when I have been at my worst.

    My then GP had seen PMR before but not with sero-negative bloods results, so I was (eventually) seen by a Rheumatologist who confirmed PMR with one look at me. It took about 36 hours for the first dose of Prednisolone to work. I went from being unable to walk across my kitchen to down on the floor scrubbing it.

    Make sure her GP knows that positive blood results are not always definitive.

  • Hi, I developed pmr at age 47 and had debates along the way re me being too young. I had it for 14 months before they started treating it. 3 months after starting steroids, developed a number of GCA symptoms and rheumys continued to argue I was too young, blood were normal, and I couldn't be unfortunate to have both. I had GCA symptoms for 2 years before I decided enough is enough and asked for referral to one of the country's top specialists, who confirmed GCA. So keep fighting if you believe and you certainly sound like you have GCA. I was not allowed the high doses of Pred, but have mess to manage the symptoms, but I am a very unusual case. Thankfully my eyes have never been affected. Good luck 😃 You seem to be in good hands with your GP

  • You have - as others have said - a VERY good GP and a less good optician who needs education - and very uninformed opthalmologists. Your referral to the rheumatologist should have been as an emergency. The biopsy may well be normal, it is in about half of patients with GCA, and the blood tests are also normal in about 1 in 5 patients with GCA. 30, however, is no longer regarded as normal, 20 is now taken as the top end of normal. Like polkadotcom, I have never had an ESR above 7 - even when I couldn't move. Nearly all the symptoms faded in 6 hours after taking pred. I had also had scalp pain and jaw pain - both taken as signs of GCA. The blood tests and biopsy are supporting evidence - the clinical signs and symptoms are far more significant.

    Take this link to your GP and express your concerns to them - I'm not suggesting for a moment you too will have a stroke but it is incontravertible evidence that you can have GCA under the age of 50 - and anyway 50 is the age that is mentioned in the British Society of Rheumatologists guidelines:

    walesonline.co.uk/news/wale...

    The pathologist found the GCA and as I always say, pathologists know it all, just too late. It may be rare but rare is not the same as impossible.

    Where do you live? What dose of pred are you currently on?

  • Thanks PMRpro. I live near Eastbourne and am currently on 60mg of pred. My GP prescribed 40mg but the opthamologists said that was not enough and increased it to 60mg so I took 40mg for two days and this is my third day on 60mg. Still have ear pain, jaw pain on left side especially when bending down and feel pretty weird. The opthamologist I saw said that if I had GCA at my age I would be one of only a few people in the world with it at such a young age. I now now this is entirely incorrect. I don't know what to do. Should I call my GP and ask for a letter to see a rheumatologist? The opthamologist said they were going to take advice about a TAB as they believed it would be normal. I don't go back to the eye clinic until Friday.

  • Eastborne? You need to get in contact with poladotcom who isn't a million miles from you.

    There is also a support group in your area, contact details here:

    pmrgca.co.uk/groups/

    and they may be able to suggest a reliable rheumy for your GP to contact as a emergency - GCA is a medical emergency, just like a heart attack or stroke.

    I would call your GP and discuss it with them as the ophthalmologist isn't the right place to be - especially with their rather blinkered attitude though if they left you on 60mg they must have the thought at the back of their minds you DO have GCA. At least you are still on the right dose - and do rest!

    On the other hand - you can go back to the eye clinic with a bit of evidence that it isn't particularly unusual for someone in their early 50s to have it. It can happen in teenagers and in younger women but it gets a different name - why anyone should think it should suddenly mean you can't have it at 45 is beyond me!

    As I've already said once today - rare possibly but not impossible and why shouldn't YOU be one of the "few in the world". It has to be someone - what a silly thing to say.

  • I live in Uckfield not far from Eastbourne and was referred to a rheumatologist in Crowborough at the Horder Centre - he diagnosed me straight away with PMR + GCA after 5 years of being brushed off by doctors. Tapering steroids now - not an easy journey but at least hopefully now on that road to recovery.

    I wish you well

  • Stillstargazing, as the others have already said, you certainly aren't too young at 51 to be diagnosed with GCA, and about a quarter of patients never have raised markers of inflammation in their blood tests.

    You haven't said how long you have been on 60mg of Prednisolone but any biopsy of the temporal artery needs to be carried out within a couple of weeks of starting treatment otherwise the large cells they are looking for will have resolved due to the high dose steroid treatment. Also, a negative biopsy result doesn't mean that you definitely don't have GCA - the large cells can simply escape the tiny portion of artery biopsied. However, a positive result does at least give a definitive diagnosis should there be any queries in the future.

    Well done to your GP for sending you straight to A&E finally - however, if he suspected GCA at your first appointment, apart from starting you on a higher steroid dose than 30mg, he should have referred you immediately to a rheumatologist for confirmation and biopsy. As your head pain and visual disturbances have resolved with 60mg Pred, that will probably be taken as confirmation of GCA - the pressure in your head and the ear pain may take a little longer at the high dose to resolve. My head, eye and jaw pain resolved within hours of taking my first 40mg dose but my rheumatologist gave me a number to ring should any of those particular symptoms return.

    I can imagine how scary it was for you to awake with sudden vision loss in your right eye - thank Heavens for steroids! I hope that your other symptoms will soon resolve, but do come back and ask any other questions you may have - there is always someone around to try and answer them from their own experience.

  • I was diagnosed with PMRGCA at 50 so not unusual,ive been medically retired from my work.Ive other autoimmune illnesses tho.I had a negative biopsy bit they treat symptoms ,which im glad of as my eyesight was under threat.Good luck to you.!

  • whitleybayfc, what was the TAB like? My GP is chasing mine up today so will be having it done imminently. I have other autoimmune conditions too. Have you ever been told anything about why some of us seem to be so compromised in this area or is it all still a medical mystery? I'm a fulltime carer for my autistic son so am finding feeling this rotten a real challenge especially as I can't expect any consideration from him at all.

  • Hi Still stargazing im sorry to hear you may have gca.Biopsy is ok they just give you a local anisthetic.You wont feel a thing.Ive been told by experts im a medical freak.Ive type1 diabetes ,Addison's disease .gca pmr,aps Hughes syndrome ,and vitiligo .I keep asking my rheumatologist if he has a magic pill to get rid of fatigue ,unfortunately not.There are wiser folk than me on medical matters, and they will help on this forum ,will say fatigue is a side affect of autoimmune illness and also medication needed .I hope you manage to get some assistance with your child .All the best .x

  • A correctly diagnosed and treated Thyroid could resolve your chronic fatigue and some of your other syndromes. The thyroid is the boss in the body, bloods will probably be ok, but, as with most other problems, they should diagnose by how you feel.

  • I'll respond to the question of what was the TAB like. For mine, it involved local numbing, so I was awake but felt no pain. Both sides were numbed so that a biopsy could be done on the second side if the lab found nothing on the first side. The hospital lab was available to immediately check the bit of artery removed from the first side. They found nothing and proceeded to the second side where they also found nothing. I was stitched up with dissolving stitches, and had no pain or problems while recovering for a few days. I only had to keep the area dry and check for any redness that might indicate infection. Further lab studies on the tissues failed to find any proof of GCA, but due to my symptoms and my response to prednisone, it has always been assumed that is what I have. The TAB was useless to me as my rheumatologist said it might be, but he recommended I have it because a confirmed case is the only kind accepted for any clinical trials of possible treatments that might arise in the future.

  • Thank you to all who have replied to my post. It is so comforting to hear from people who have been through this. I am truly shocked at the lack of knowledge of GCA amongst medical professionals when it clearly can have catastrophic consequences. I have been on phone to hospital and GP today and experience with hospital was very disturbing as nothing has been set up for me re regime or TAB. Not so my GP though who is very aware and referred me for TAB last week and is chasing it up today. He called me back this morning when I had phoned surgery. Thank God for him

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