Patient Comments: Takayasu Disease - Symptoms


What symptoms did you experience with your Takayasu disease? Submit Your Comment

Comment from: Opal, 45-54 Female (Patient) Published: November 05

My tetanus shot was on February 2018, and three days later I couldn't move my arm, with burning and tingling in my arm. It's now in both arms, wrist, fingers swollen, and now the back of my head hurts. I am on my way to the emergency room. I am getting the run around from my doctor.

Comment from: Elaine, 55-64 Female (Patient) Published: December 15

I am a 59 year old woman who this year was diagnosed with Takayasu arteritis. Over the last 4 years I have had bouts of extreme inflammation and pain in various parts of my body. In the last 12 months this has gotten worse along with Raynaud's syndrome, weight loss, strength and muscle loss, no pulse or blood pressure in arms, and blocked carotid arteries, plus high blood pressure. I went to various doctors who couldn't tell me what was wrong and just kept handing out pills. Then in August this year (2015) I saw a rheumatologist who listened to me and put it all together. I am so glad now I know what is wrong with me. This has been a huge life style change as I cannot work now from the side effects of the treatment as well as the disease. I am hoping to later on have surgery and get me back into the work force.

Comment from: Terry, 65-74 Male (Patient) Published: August 17

I found out that I had Takayasu disease when I was 18 and tried to get into the service with friends from high school. I was turned down and had to go and have tests and an angiogram. After I got married at 21, I never had any problems until 2011, when I got bronchitis really bad, and then two months later a pain in the back moving to the front. I had an ultrasound and they said I had an aneurysm and told us to go to the county hospital 30 minutes away. We went in and spent about 5 hours and had tests and they could not find anything. I had another problem with severe neck pain about 4 months after that, then started having problems with breathing, and was diagnosed with asthma, which now we think was one of the symptoms of Takayasu. I will be talking to a vascular surgeon soon.

Comment from: Teresa, 65-74 Female (Patient) Published: February 12

I was diagnosed with Takayasu disease 18 years ago and told that I could only expect 5 to 10 years. I have had 8 lots of surgery. I was unaware that my eyes would be affected, although I have tears/holes in both retinas. Most of the time I have anemia, tiredness and random aches and pains, and now have developed atrial fibrillation (AF). I have never had treatment as such apart from the surgeries, although I am now taking warfarin and that seems to help stop the aneurysms being under pressure.

Comment from: ace, 65-74 Female (Patient) Published: August 06

Before diagnosis of Takayasu disease, I had extreme pain in arms when raising to wash hair, joint pain in lower extremities, no blood pressure in upper extremities, lower only, and Raynaud's phenomenon in fingers. Subclavian arteries are closing down and I had stents inserted the end of 2006. I am still in remission taking Plavix daily and Arava once a week. I am doing great and still playing tennis and go to the gym.

Comment from: Janelle M, 65-74 Female (Patient) Published: June 14

I have had Takayasu's arteritis (TA) for the past twelve years and mine has been a quite serious case. Fortunately, I have a wonderful rheumatologist who was up-to-date and was able to diagnose it right away. I have spent over 250 days in our county's premier hospital and two university hospitals. I have had multiple surgeries to open arteries that were affected. It has affected cranial, thoracic and, abdominal arteries requiring interventional surgery nearly everywhere. I am fortunate to be alive; my disease is quieter now but I am having kidney issues that may have been caused by TA. This disease is not for the faint of heart!

Comment from: Marie, 55-64 Female (Patient) Published: February 20

With Takayasu disease I experienced extreme fatigue, low grade fever, weight loss, weakness in both arms and difficulty chewing due to claudication of the carotid artery.

Comment from: s, 35-44 Female (Patient) Published: October 18

My symptoms with Takayasu disease are high blood pressure, dizziness, claudication in hands and legs and fatigue.

Comment from: evelyn, 13-18 Male (Caregiver) Published: April 08

My son is 14 and has lost his vision to left eye and the right eye now is 20/400 (legally blind) and all within one year. We have had him tested and evaluated by ophthalmologists, and rheumatologist but nothing definite other than working diagnosis of optic neuritis/vasculitis of unknown cause. Initially he was treated with steroids but no response and currently he is not taking anything except vitamins we decided to give him to slow the progression of his vision loss. We are out of options as parents.


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