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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Jan 13 9:52am | Replies (217)Comment receiving replies
Am very sorry to learn of your diagnosis. I've had Temporal Arteritis (GCA) for 7 years. The length of time for recovery is different for everyone. Please don't panic and think you'll be at this for a long time. It's different for different patients. It is very important to have a temporal artery biopsy to support the diagnosis. The first line of treatment for GCA is Prednisone. This drug will reduce your bone density and has many other potential risks. The goal should be to manage the disease with the least amount of Prednisone possible. Tapers of the drug must be done slowly and with supervision in order to prevent adrenal failure, so never just go off Prednisone just because you're feeling better or frustrated with slow recovery. Most people improve quickly when Prednisone is introduced. Then recovery slows with the taper. It would be helpful to know more about your diagnosis and meds. Most info on this autoimmune disorder is on elderly patients. I was in my 40s when I was diagnosed, so I've come to learn things are different for me. This means protecting bones is much more critical. The link you received is excellent in that it points out how important diet and exercise are to protect you from osteoporosis, high blood sugar (Prednisone raises this) and other issues. Are you seeing a Rheumatologist? If you are not seeing a specialist, you should consider it. Have you had a DEXA scan. This should be done early and monitored regularly to see if you need to be on bone supporting drugs. Please tell me you're on calcium! It is critical to get enough calcium with Vitamin D3, magnesium and other essentials to protect your bones at least some. Some things you need to do your homework on and that insist on. Did you know you are more prone to infections on Prednisone? This means preventative care like a flu shot is important. Depending on how much Prednisone you're on, you may need protection from different kinds of Pneumonia. Please take time to keep doing what you're doing. Ask questions, seek answers and become the best advocate you can be.
Replies to "Am very sorry to learn of your diagnosis. I've had Temporal Arteritis (GCA) for 7 years...."
I know you wrote this a long time ago, but I’m in my 40’s and having symptoms of GCA and docs not taking me seriously due to age. What were your symptoms please, if you don’t mind sharing.
Hello,
I am currently just learning about Temporal Arteritis. I’m 44. Young for the diagnosis however waiting for a biopsy which will confirm or not. Seeing your age made me reach out.
I’m hoping you can shed some light on living with this diagnosis.
Thank you
Excellent write up
Yet to be diagnosed however all symptoms point to GCA/temporal Arteritis. Today is my 44th bday.
Thanks so much for this information. I have been treated for PMR for five years. Tapering doses of prednisone up and down, multiple flare ups. I was down to 2mg, having pain but able to manage with the help of acetaminophen. Stress seems to aggravate it, so during the holidays and extreme cold recently was not surprised that I hurt more. I started getting dull headaches in my right, then left temple, along with stiff and painful jaw, new right neck pain and horrible shoulder and neck stiffness and pain. I never get headaches, several new symptoms for me. Called rheumatologist who told me to come in for a steroid injection. I did, but his nurse gave me the shot and I never saw my doctor. I went on an overnight trip the next day and the following morning woke with slightly blurred vision. Headaches continued. I ended up in the ER, and was diagnosed with temporal arteritis based on symptoms, elevated sed rate and negative for bleed head CT. Gave me 60mg oral prednisone and a script for 60 mg daily in 3 - 20mg doses. F/U with rheumatologist next week. My mom had this, but not PMR. Vision is good today after 1 dose, as are the headaches. Bracing myself for the side effects.
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Hello, I read your comment and I am 42 similar age as you, and I am desperate for answers as doctors aren't being to helpful. Here's my situation I got some type of awful virus they don't know of for a couple months and all kinds of horrible symptoms. NOW past 2 months I have had tension headaches right at the temple gradually getting worse over the past couple months. I have been not active at all furing this 3 month period (was in great shape before), but now if i try to do anything like walk 5 blocks or do anything little active i get tension headaches followed by TIA symptoms. (weakness in leg or arm, numbness in parts f the body), also I am experiencing jaw and neck very stiffness alot, and of course i have been very fatigued all the time, I have slight vision problems, nausea disoriented, etc. Now here's the problem all the doctors i seen say can't happen cause my age and the blood tests come back normal 2 times over 2 month period. I am quite positive it is this. I am wondering how you got diagnosed, I am desperate for info as my symptoms are BAD, any info would be grateful and might save my life