Doctors have found checklists are the best method to avoid missing serious illness. I'm suffering the effects of misdiagnosed Giant Cell Art

ertitis due to lack of sufficient prednisolone to protect my arteries from damage, even though I had correctly diagnosed myself. I looked up the British Rheumatology Society guidelines and I was taking asprin as they suggested until my GP insisted it was stopped. I had to ask for bone protection (Calcium and D3) which was at first refused. I was using a run in anti-inflammatory for my arms and legs which helped with the polymyalgia rheumatica pain which I had had for about 6/7 years prior to the GCA flaring up. The giant cells can occur anywhere in the body but only when it hits the temporal artery is it diagnosed. A checklist of taking proper blood tests, pulses in all appropriate places and blood pressure of all four limbs would be a help to reduce the consequences of poorly managed GCA, such as serious, painful and expensive life-long illness, disability or death.

12 Replies

  • Hi. I am diagnosed with GCA through a PETCT scan. It was found in my Aorta. My Temporal Biopsy was a clear negative. So it is possible to diagnose without it hitting the Temporal Artery

  • Giant Cell Arteritis can affect any large or medium artery and frequently does, but is usually ignored by professionals to the detriment of the patient's health. Unfortunately, GCA is still being described as Temporal Arteritis, which is inflammation of the temporal artery only, and the treatment is the same whether they find giant cells there or not.

  • Hi WMTuk. Why is GCA associated and linked with PMR? I know if you have one there is chance of getting the other but apart from that the signs and symptoms very are different. If like me GCA is found in the Aorta it is more associated with Takayasu? thanks

  • I think that both PMR and GCA are related to poor blood supply. In PMR it is suggested that poor blood supply to the joints and muscles is what causes the stiffness, weakness and pain and in GCA the arteries are inflamed due to abnormal and overly large cells which cause constriction and or artery wall damage. In fact, I think the short answer is that the professionals don't know for definite and so there is a mystery, or what appears to be a mystery. They do know that patients who have been suffering with PMR can go on to get GCA but some GCA sufferers have never had PMR and some PMR sufferers don't go on to develop GCA. The association seems strong enough to suggest it might even be the same illness.

    I know nothing about Takayasu though I'm sure there are people on this health site who do know about this if you ask a question with this in the title, you might get a good response.

    You have to rely on the professionals to diagnose you correctly. If they have said you have GCA which has affected your Aorta, they will keep a check on this area, for Abdominal Aorta Aneurism, for instance. Far better this than like many, the doctors think that the inflammation only affects one small piece of artery in the temporal region which they hope to dissect asap. After 2 years of heart pain, I recently had a resting ECG which was normal. I'm sure my leg arteries are affected because the blood pressure in my right leg is up to 200 and is very painful and walking, especially uphill is very difficult, but I can't convince my doctor that I might have artery inflammation in my leg because he is only concerned about prednisolone side effects! It's a long haul requiring great patience and trying not to fall out with difficult doctors. Good luck and I hope you are well and not succumb to further illness.

  • Thank you WTMuk for your help in answering. Agree it is difficult for some to get a diagnosis. I hope you can get a positive diagnosis soon. With me the diagnosis was the goal for my Rhemy. After positive diagnosis and given Prednisolne he doesn't want to see me for 4 months. Luckily I have a good GP. I have had a resting ECG which threw up a few oddities so have also had a 24 hour ECG monitor as well as BP meds. But GP suggests these are side effects of the Pred. My GCA is not being monitored at all. Tapering is left to me.

  • A checklist would be the answer for you.

  • It's an excellent thread...GCA isn't a disease exclusively for the "Elderly". May I ask for the link of this "Checklist"? Thank you.

  • There is no checklist. I am suggesting a checklist for GCA which would include what to ask for on a blood test other than ESR and CRP. This is because it is an illness with very serious consequences and not only heart but liver, lungs and kidneys (so regular urine tests) should be standard for a start. I have no idea why they refer to patients over 50 as 'the elderly' but I do think that doctors should be made to retire at 65.

  • I'm sorry, but I don't see how a check list is going to solve your problem? The trouble with this disease is the randomness of the symptoms...two different people may be suffering from a range of problems and yet both may have the same form of Vasculitis. That is what makes it so very hard to diagnose and I find it hard to blame anyone, including my doctors, for the two and a half years it took me to get a diagnosis. After all, I didn't believe my own symptoms a lot of the time. Now I'm content with the label 'large vessel Vasculitis' and relieved that my treatment is excellent and I've regained a reasonable balance in my life. Yes, I have pain and bad days and fatigue etc, but getting uptight about it all only makes things worse and doesn't help me, or my family.

  • I had classic symptoms of PMR and classic symptoms of GCA so a checklist would have helped in my case. I did believe my symptoms and though I diagnosed myself with GCA, and I am speaking about GCA, my opinion was ignored. I did blame my doctor, a registrar from my local hospital who had not passed her GP exams and should have been in supervision. I did receive an apology but perhaps permanent damage was already done. If a checklist would not have helped your doctor or you personally, I would not insist you have it. For those who are not receiving the treatment they should have for GCA, it would be very useful. It would have helped me and several other people who I have spoken to who have not been receiving the blood tests, blood pressure tests, urine tests, etc., that they should have.

  • WMTuk, what you are saying is, there's lack of recognition of GCA in clinical / hospital setting. Some people die from it or go blind from but it is still believed to be an illness of an "Elderly person" (70s/80s) as GCA is considered far more common in this age group. Otherwise, it's "all in your head" or you might be depressed or you have health anxiety etc etc...

  • Hi Ashfordgreen, Depression or anxiety would be excluded from a GCA checklist. As people live longer, the average age of someone with GCA will increase, but it doesn't mean that people of 50 do not get it. There are a huge number of fallacies about GCA and GPs are quite confused and even hospital clinicians are not able to take blood pressure of 4 limbs into consideration and are not even asking patients if they are in pain or where that pain is and when. How they hope to diagnose a patient without talking to them is part of the problem with modern day doctors who want evidence for everything before making a diagnosis because they feel they have to justify their decisions. This is why a checklist is so vital.

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