Temporal Artiritus: Temporal Artiritus... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,356 members10,544 posts

Temporal Artiritus

JemimaPuddleduck1 profile image

Temporal Artiritus.

What is this condition

I was in hospital after being admitted for very high blood pressure and they took some bloods and some came back with high levels in the inflammation. I was told i could have the above. Its a long story

Written by
JemimaPuddleduck1 profile image
JemimaPuddleduck1
To view profiles and participate in discussions please or .
15 Replies
justlymostly profile image
justlymostly

Hi My cousin has had this, she suffers from rheumatoid arthritis. It is basically what it says it is, inflammation of the blood vessels in the brain due to arthritis. I hope it improves soon. Take care.

lupus-support1 profile image
lupus-support1Administrator

My advice is for you to get a referral as soon as possible to a rheumatologist as you need a diagnosis as soon as possible. The quicker the diagnosis, the speedier the treatment. I cannot understand that if you were in hospital, a consultant was not called to see you. A biopsy behind the ear is usually required.

hopkinsvasculitis.org/wp-co...

Temporal arteritis (giant cell arteritis) is where the arteries, particularly those at the side of the head (the temples), become inflamed.

With good wishes,

Ros

Symptoms of temporal arteritis

The symptoms of temporal arteritis depend on which arteries are affected.

The main symptoms are:

frequent, severe headaches

pain and tenderness over the temples

jaw pain while eating or talking

vision problems, such as double vision or a loss of vision in one or both eyes

More general symptoms are also common – for example, flu-like symptoms, unintentional weight loss, depression and tiredness.

Around half of all people with temporal arteritis also develop polymyalgia rheumatica, which causes pain, stiffness and inflammation in the muscles around the shoulders, neck and hips.

Source: nhs.uk/conditions/temporal-...

Giant Cell Arteritis

Description

Giant cell arteritis (GCA) is the most common form of vasculitis that occurs in adults. Almost all patients who develop giant cell arteritis are over the age of 50. GCA commonly causes headaches, joint pain, facial pain, fever, and difficulties with vision, and sometimes permanent visual loss in one or both eyes. Because the disease is relatively uncommon and because the disease can cause so many different symptoms, the diagnosis of GCA can be difficult to make. With appropriate therapy, GCA is an eminently treatable, controllable, and often curable disease. The disease used to be called “temporal arteritis” because the temporal arteries, which course along the sides of the head just in front of the ears (to the temples) can become inflamed. However, we also know that other blood vessels, namely the aorta and its branches, can also become inflammed. The term “giant cell arteritis” is often used because when one looks at biopsies of inflamed temporal arteries under a microscope, one often sees large or “giant” cells.

Who gets Giant Cell Arteritis?

GCA is a disease of older people. The average age at onset is 72, and almost all people with the disease are over the age of 50. Women are afflicted with the disease 2 to 3 times more commonly than men. The disease can occur in every racial group but is most common in people of Scandinavian descent.

Classic Symptoms of Giant Cell Arteritis

The most common symptoms of GCA are headache, pain in the shoulders and hips (called polymyalgia rheumatica), pain in the jaw after chewing (called jaw claudication), fever, and blurred vision. Other symptoms can include tenderness of scalp (it hurts to comb the hair), cough, throat pain, tongue pain, weight loss, depression, stroke, or pain in the arms during exercise. Some patients have many of these symptoms; others have only a few. Blindness — the most feared complication — can develop if the disease is not treated in a timely fashion.

What Causes Giant Cell Arteritis?

We do not know. We do know that aging has something to do with the disease. And we know that the body’s immune system attacks and inflames the arteries. But we do not know why the immune system attack occurs when and where it does.

How is Giant Cell Arteritis Diagnosed?

The diagnosis is made by doing a biopsy of the temporal artery. Using a local numbing medication (the same one used by a dentist), the doctor can remove a small part of the temporal artery from under the scalp and look at it under the microscope for evidence of inflammation. A temporal artery biopsy is almost always safe, causes very little pain, and often leaves little or no scar.

There are blood tests that help the doctor decide who is likely to have GCA. Almost everyone with the condition has an elevated erythrocyte sedimentation rate (also called “sed rate”). The sed rate measures how fast a patient’s red blood cells settle when placed in a small tube. In inflammatory conditions, red blood cells settle more quickly than in non–inflammatory states. In addition, most patients with GCA have a slight–anemia, or low red blood cell count. Other conditions can also cause a high sed rate or anemia, so the final diagnosis depends on a temporal artery biopsy.

A few patients with GCA do not have positive biopsies. We now know that GCA does not affect every part of every temporal artery but can “skip” around. When one biopsy is negative, biopsying the temporal artery on the other side can lead to the diagnosis.

Treatment and Course of Giant Cell Arteritis

GCA requires treatment with prednisone, a type of corticosteroid. Typically, treatment begins with 40–60 mg of prednisone, taken by mouth each day. Most patients improve rapidly and dramatically on this dose, with improvement of most symptoms in 1–3 days. Unfortunately, if blindness has occurred as a symptom it is usually irreversible, which only emphasizes the importance of early detection and treatment.

Almost all patients experience side effects from prednisone. After the patient improves, the doctor gradually reduces the prednisone dose. The rate of tapering prednisone depends on how the patient feels, what the doctor finds on exam, and the results of blood tests, including the sedimentation rate. Although virtually all patients are able to reduce their prednisone dose, most require some amount of prednisone for 1–2 years. Longer treatment periods are not uncommon.

In medical terms, by David Hellmann, M.D.

A discussion of Giant Cell Arteritis written in medical terms by David Hellmann, M.D. (F.A.C.P.), Co-Director of the Johns Hopkins Vasculitis Center, for the Rheumatology Section of the Medical Knowledge Self-Assessment Program published and copyrighted by the American College of Physicians (Edition 11, 1998). The American College of Physicians has given us permission to make this information available to patients contacting our Website.

Giant cell arteritis is vasculitis of unknown cause that affects the elderly and is characterized by panarteritis of medium- to large-sized arteries, especially in the extracranial branches of the carotid artery. The average age of onset is 72 years, and women are affected two times as often as men. Irreversible blindness, the most commonly feared complication, results from necrosis of the posterior ciliary branch of the ophthalmic artery and is usually preventable by early diagnosis and corticosteroid treatment.

Giant cell arteritis can begin suddenly or gradually with nonspecific symptoms such as malaise, weight loss, depression, and fatigue or with the classic symptoms of headache, scalp tenderness, jaw claudication, visual changes, or polymyalgia rheumatica. Polymyalgia rheumatica which can occur with or without giant cell arteritis, is characterized by pain and stiffness of the hips and shoulders that worsens in the morning. About one third of patients resemble the preceding patient and present with atypical manifestations such as fever of unknown origin, respiratory symptoms (dry cough is most common), large vessel disease (causing Raynaud’s phenomenon, claudication, or thoracic aortic aneurysm), mononeuritis mutiplex, glossitis, or profound anemia. Although giant cell arteritis accounts for only 2% of all fever of unknown origin, it accounts for 16% of fever of unknown origin in patients over age 65 years and is often associated with rigors and sweats. Only half of patients have enlarged, nodular, or nonpulsatile temporal arteries: normal temporal arteries on physical examination do not exclude the diagnosis. Subclavian bruits, diminished pulses, aoritic regurgitation, or Raynaud’s phenomenon are found in patients with large vessel disease. Fundoscopic examination is normal in the first day or two after blindness develops. Almost all patients have a markedly elevated ESR, averaging about 100 mm/h. Very rarely, the ESR may be normal, especially in patients who are already taking prednisone for allergic or respiratory diseases. MOst patients have mild normochromic normocytic anemia, and 20% to 30% resemble the preceding patient in having mildly elevated serum alkaline phosphatase. The leukocyte count at presentation is usually normal, a point favoring giant cell arteritis over infection or malignancy.

Because blindness from giant cell arteritis is almost irreversible, treatment with 40 to 60 mg of prednisone should be started as soon as the diagnosis is suspected. Although immediate temporal artery biopsy has been preferred, one study suggests that biopsy remains positive within at least the first 2 weeks of corticosteroid therapy. Therapy should not be held pending biopsy. In patients with giant cell arteritis, arterial involvement is patchy: therfore, maximizing the chance of diagnosis requires obtaining a long (3 to 4 cm) segment and examining multiple sections. Positive biopsy specimens show infiltration of the vessel wall with mononuclear inflammatory cells and giant cells, intimal proliferation, and thrombosis. Unilateral biopsy specimens are positive in approximately 85% of patients, and bilateral biopsy specimens are positive in 95%. Patients dramatically improve within 24 to 72 hours of beginning therapy, and the ESR usually normalizes within 1 month. Thereafter, prednisone can be tapered slowly, although most patients require some prednisone for at least 9 months and often longer.

Treatment decisions should probably be based on the patient’s symptoms, the hemoglobin, the ESR: ESR alone should not dictate therapy. Because compression fractures develop in one third of patients, prevention and treatment of osteoporosis should be part of initail management. Methotrexate, azathioprine, and cyclophosphamide have been used in rare patients who do not respond to adequate prednisone. Long–term follow–up is required to detect late recurrences (including the late onset of thoracic aortic aneurysms with aortic regurgitation, congestive heart failure, and aortic dissection). Patients with polymyalgia rheumatica but no symptoms of giant cell arteritis above the neck (such as jaw claudication, headache and visual symptoms) do not need temporal artery biopsy and respond to low–dose prednisone (10 to 20 mg/d orally). Because polymyalgia rheumatica is a clinical diagnosis, other conditions such as hypothyroidism, amyloidosis, rheumatoid arthritis, and malignancy should be considered in the initial evaluation and reconsidered if the patient does not improve rapidly on prednisone.

Source: hopkinsvasculitis.org/types...

JemimaPuddleduck1 profile image
JemimaPuddleduck1 in reply to lupus-support1

Basically I was admitted into hospital after a routine eye test was stopped as she said she could see burst blood vessels behind my left eye.

I had notice that my vision in that eye was deteriorating and i had been having constant headaches that side and behind my ear hence why i went for the eye test.

I was referred to the eye clinic the next day and he said that I had a Central Retina Vein Occlusion / ? Giant Cell Artiritus.

He also checked my blood pressure which was excessively high 254/119 and ordered me to have Blood Tests to check for the above. I had bloods taken and was then admitted as the BP would not come down put on two hourly obs through the night and if the BP had stabilised could go home.

Thing was going in for one thing then being asked questions about another was hard.

Then one of the blood tests that shows up the inflammation of the blood came back high a Dr and Consultant came around and said about the rise and that i would have another blood test taken as they were concerned that it would be Temporal Arteritus. Blood test taken and result was 30 Dr. said was i OK {well to be admitted with BP and to be then told I may have something else was a big shock} he said we will put you on a course of Steroids most prob do a Biopsy in the morning and i could go Home. The consultant was very through felt my head the side of my head too

Then this Rheumatoligist came asked loads of questions and told me in no uncertain terms i did not have it and should go home. I was dumbfounded. she said the young doctor doesn't know what he is talking about and she should know as she has been doing what she does for 20 years. She said if the levelels were in the 20's-70's she would be worried then she looked at bloods and then changed it to 30's to 100. I am to have a blood test on wednesday this week and not see her till the end of the month.

when i said about having test in the morning she said she would nt be there and it wasdnt necessary.

Not only do i have the eye problem i now have the not knowing about the above. And wont do the BP any good.

Felt ill today achey hedache behind ear etc.

That sort of explains your query

lupus-support1 profile image
lupus-support1Administrator in reply to JemimaPuddleduck1

I am very sorry you have had to go through this. As you said, you are admitted, found there was a problem with your eye, high blood pressure etc You are then placed in the middle of an argument between you and another doctor, so you have no idea what is the problem. It is not surprising you are feeling unwell! Are you being treated for high blood pressure? Do you know what the blood test was called? Was it the ESR (sed) test which measures inflammation? Don't feel you have to reply. It's more important to rest.

I think you need to rest and try not to stress. Perhaps go and see your GP and explain what happened and ask for help. As a patient, you should not have been treated in this way, causing you unnecessary confusion and stress.

With good wishes,

Ros

JemimaPuddleduck1 profile image
JemimaPuddleduck1 in reply to lupus-support1

Ros Many thanks for your responses and kind words.

Yes I am now being treated for the Blood Pressure and am on medication for this.

I have an appointment for a blood test this week so i will then speak to the healthcare assistant and tell her of my worries and concerns. also i will ask her when i can know the results i dont want to have to wait until the end of May.

Have had a lot on since March which has prob attributed to the stress side of things.

Very tired today keep falling asleep

Enjoy your day

P

lupus-support1 profile image
lupus-support1Administrator in reply to JemimaPuddleduck1

Most important you look after yourself and listen to your body! It's telling you to rest and if possible, try some deep and slow breathing which can be calming!

If you want to say how you get on, please let me know!

With good wishes,

Ros

JemimaPuddleduck1 profile image
JemimaPuddleduck1 in reply to lupus-support1

I decided to complain about the Rhemotologists behaviour towards me and have now got a new appointment on Tuesday 22 May with a different one too so i will let you all know what the outcome is.

As to the BP i am now on Lisinopril 5 mg as well now.

MaryF profile image
MaryFAdministrator in reply to JemimaPuddleduck1

Please do come back to us and let us know the outcome, as it is clearly that more guidance is needed to sort this out with symptoms like that. MaryF

JemimaPuddleduck1 profile image
JemimaPuddleduck1 in reply to lupus-support1

also I was to young I am 55

MaryF profile image
MaryFAdministrator in reply to JemimaPuddleduck1

I think when you already have a disease like ours, things happen at a younger age. I would print out what Ros as given you and take it wherever you are going for treatment/advice. MaryF

MaryF profile image
MaryFAdministrator in reply to lupus-support1

That was a great read, really really useful. MaryF

ndstephens49 profile image
ndstephens49

Temporal arteritis is a type of vasculitis.

Vasculitis is when lining of blood vessels become inflamed and can his can cause occlusion of vessel and lead to rupture. This causes purple spots in which a palpable lump of clotted blood can be felt in center of bruise.

I have vasculitis-micro vasculitis arteritis.

Arteritis refers to inflammation of blood vessel, not arthritis.

Temporal arteritis is a bit different. It occurs on temporal side (left or right) of head. It becomes very tender and sore. It is painful to brush hair, etc. Temporal artery becomes inflamed and prevents adequate blood flow to the eye on same side. It can cause blindness if not treated promptly with steroids. It usually occurs in older men or women, 55+ years.

Good luck!

Nancy in West Virginia

JemimaPuddleduck1 profile image
JemimaPuddleduck1 in reply to ndstephens49

Thankyou for your kind reply

Lozzer profile image
Lozzer

Hi,

About four years ago I began to suffer debilitating pain in my left temple and badly effected vision.

My GP was concerned that it was temporal arteritis as this can be a very serious threat to eyesight as explained by Nancy above and a biopsy was quickly arranged. Fortunately it was negative.

The old days of totally and blindly trusting our doctors, bank managers and lawyers are behind us as after all, they are only human. If any professional opinion doesn't seem adequate, don't hesitate to seek another and especially promptly in the case of medical issues.. No one else knows your body as well as you do!

JemimaPuddleduck1 profile image
JemimaPuddleduck1 in reply to Lozzer

I have come to realise that i had a consultant and a doctor very understanding and asked how i felt and this other one that said no way could i have it.Not once did she ask how i actually felt.

Many thanks for your response and helpful info

You may also like...

Does anyone have experience of kidney problems and APS please?

I have had blood and protein in my urine and high blood pressure for ages. Little was done as a...

Does anyone know a blood pressure medication that you can take when you have Hughes?

I read that some blood pressure medications can make the Hughes syndrome worse. I was recently on a

Bit worried about my INR level is 5.8 What does that mean?

They have taken a blood sample sending off to lab. I was really unwell yesterday, slurring, high...

High altitude and APS

I should be concerned with the high altitude and its affect on my blood. I'm already a little...

APS antibodies, non typical symptoms

doesn't seem like I'm very far out side the reference range, but I'm told this is a highly...