Adjusting to life with temporal arteritis

Being treated for PMR going on two years. Taper down to zero prednisone only to be hit with symptoms that were severe enough to go back up to 20 mg daily. Had the usual PMR symptoms but this time I had symptoms above the shoulders, head, pain, jaw, pain, tingling of the scalp. My rheumatologist ignored the above the shoulder symptoms and continued me on a 20 mg prednisone dose. The headaches i got so bad I demanded something be done. He had dismissed the above the shoulder symptoms until they got so bad, he sent me for a temporal biopsy. I have been on prednisone 20 mg for quite some time the biopsy came back positive for Temporel arteritis. immediately put on 60 mg of prednisone daily. It took a good three weeks to relieve the symptoms down to 50 now feeling pretty well. Still have some issues, but my rheumatologist had dismissed all the above the shoulder symptoms even had blurry vision, so I had to demand something to be done again advocate for yourself because I could’ve gone blind but I didn’t. In my research of this disease, GCA I found that any time symptoms above the shoulders and you have PMI automatically suspect GCA and start treating accordingly. Anyways, bottom line here is I was on a 20 mg dose of prednisone and my biopsy did come back positive. do you research know the symptoms because your doctor could dismiss them you really need to advocate for yourself and I am in the process of finding another doctor because there’s just no interest in treating me. It seems. I started eating a healthy diet. Non-inflammatory as best. I can trying to walk to a little bit of exercise. Try to regain what I’ve lost so feeling a little better. Hope this helps somebody.

Being treated for PMR going on two years. Taper down to zero prednisone only to be hit with symptoms that were severe enough to go back up to 20 mg daily. Had the usual PMR symptoms but this time I had symptoms above the shoulders, head, pain, jaw, pain, tingling of the scalp. My rheumatologist ignored the above the shoulder symptoms and continued me on a 20 mg prednisone dose. The headaches i got so bad I demanded something be done. He had dismissed the above the shoulder symptoms until they got so bad, he sent me for a temporal biopsy. I have been on prednisone 20 mg for quite some time the biopsy came back positive for Temporel arteritis. immediately put on 60 mg of prednisone daily. It took a good three weeks to relieve the symptoms down to 50 now feeling pretty well. Still have some issues, but my rheumatologist had dismissed all the above the shoulder symptoms even had blurry vision, so I had to demand something to be done again advocate for yourself because I could’ve gone blind but I didn’t. In my research of this disease, GCA I found that any time symptoms above the shoulders and you have PMI automatically suspect GCA and start treating accordingly. Anyways, bottom line here is I was on a 20 mg dose of prednisone and my biopsy did come back positive. do you research know the symptoms because your doctor could dismiss them you really need to advocate for yourself and I am in the process of finding another doctor because there’s just no interest in treating me. It seems. I started eating a healthy diet. Non-inflammatory as best. I can trying to walk to a little bit of exercise. Try to regain what I’ve lost so feeling a little better. Hope this helps somebody.

Being treated for PMR going on two years. Taper down to zero prednisone only to be hit with symptoms that were severe enough to go back up to 20 mg daily. Had the usual PMR symptoms but this time I had symptoms above the shoulders, head, pain, jaw, pain, tingling of the scalp. My rheumatologist ignored the above the shoulder symptoms and continued me on a 20 mg prednisone dose. The headaches i got so bad I demanded something be done. He had dismissed the above the shoulder symptoms until they got so bad, he sent me for a temporal biopsy. I have been on prednisone 20 mg for quite some time the biopsy came back positive for Temporel arteritis. immediately put on 60 mg of prednisone daily. It took a good three weeks to relieve the symptoms down to 50 now feeling pretty well. Still have some issues, but my rheumatologist had dismissed all the above the shoulder symptoms even had blurry vision, so I had to demand something to be done again advocate for yourself because I could’ve gone blind but I didn’t. In my research of this disease, GCA I found that any time symptoms above the shoulders and you have PMI automatically suspect GCA and start treating accordingly. Anyways, bottom line here is I was on a 20 mg dose of prednisone and my biopsy did come back positive. do you research know the symptoms because your doctor could dismiss them you really need to advocate for yourself and I am in the process of finding another doctor because there’s just no interest in treating me. It seems. I started eating a healthy diet. Non-inflammatory as best. I can trying to walk to a little bit of exercise. Try to regain what I’ve lost so feeling a little better. Hope this helps somebody.

@jeep2004, I am sorry for what you have had to go through. Your rheumatologist sounds callous, and lazy. Good that you are looking for another doctor.
In the 1990s, my mother-in-law, who was in her 80s, and always vibrant, came down with a mysterious malady that knocked her flat. She had a headache, jaw pain when eating, night sweats, and general malaise. Her PCP sent her to an internist who took no tests, told her it was a virus she had to wait out, and sent her home. Long story short, I consulted with a friend, an infectious disease specialist, and sent him a detailed list of my m-i-l's symptoms. He guessed it was either temporal arteritis, AIDS, or a malagnancy. Through him, we got a referral to an excellent internist who ordered the biopsy. She was positive for GCA. At the time, my m-i-l was ailing, many close to her thought that it was "all in her head."
Some 40 years later, I was also diagnosed with GCA. To get the diagnosis, I consulted with my physician friend, sent him my lab work, etc. and he told me what tests to ask my PCP to order. When I told my PCP we suspected GCA, he laughed and said if I had it, I'd be blind. Although he later called to apologize, I couldn't overlook his arrogance and changed physicians.
I wish that my m-i-l was still around so we could commiserate.
In the book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide, Kate Gilbert makes the point that some doctors have no interest in PMR and GCA because they're usually diseases of the "elderly."
You are quite right about having to advocate and push in certain situations to at least be taken seriously.
Happily, after a year and a half, I'm off prednisone and symptom free. I wish you the best. Don't lose heart or your willingness to fight for yourself! I hope you find a caring, competent and conscientious physician who can give you proper treatment.

Wow. I also just went through all the GCA tests. Biopsy came back negative and Rheumatologist says it is not definitive, but I have been on Pred for over a year now. At the ER I was put on 60 mg Pred as a precaution. That was Jan 21. Rheumy has started weaning to 50 already. I only dropped it to 55 mg. as I want to ensure that I notice ANY symptoms returning. Opthamologist said no significant change in eyesight, except for a wee bit of growth in cataracts. So grateful for this. Also was diagnosed by my dentist yesterday, with actute TMJ presenting with extreme pressure in the head, i.e. between the ears with deafness in the left and tinnitus and also tinnitus in the right ear, jaws cracking and difficulty swallowing. He is recommending a bite plane to get jaw back in alignment. TMJ was not a huge issue in past years, but suddenly reared it's ugly head around the same time as the ER visit, with the head pressure and hearing issues, which have not dissipated, even while on 60 mg. Pred. ER doc looked in my ears and said no infection and yet here we are with the pressure remaining. So I guess my question is: "Is it GCA or TMJ causing the jaw pain? There is a pain just above my forehead, when I lightly touch a spots along my eyebrows. It does not hurt to the touch, it's almost a referred pain from a nerve along the brow. Not in the temporal zone. Dentist says it is the muscle that supports the jaw. Surgeon says it could be a symptom of GCA. I am reluctantly weaning at this point, because the concensus from most Rheumatologists is "let's get to 1 mg." and those were her words the other day. I was at 14 mg. Pred. prior to ER visit. Does anyone really know anything about PMR/GCA or is it a "fake it until" scenario? Side note: I have also done something to lower back, hip and down the outside of my right leg. Referred for a CTScan (in Nova Scotia that maybe some time within the next 6-12 months. Maybe PMR related sciatica, but extremely limited in what I can do at this point. Rheumy says this is something the GP should assess - not her. GP is a quack-a-doo. Self advocate here.

I noticed dark veins about 7 days before the biopsy. I did not pay much attention, I thought maybe it was a rare Covid related thing, and decided to check it out. I literally had no other symptoms. I should add that I rarely get headaches except for sinus ones. I took probably 5 regular strength Tylonol for mild discomfort during the past month.
I have not seen anything like my experience on the Internet or in a posting, so I decided to just post what happened. GCA gone in a month? Of course the tapering off the steroid may be a different story. My care will be from my Internal Medicine Dr. I am not sure at this point how sudden vision loss would be handled or if it is likely. Thanks for your interest.

I am experiencing almost the same thing. I feel strongly that it could be GCA my said rate and CRP are both within normal range. I just noticed dark veins coming from the top of my forehead down towards my temple area. I am strongly leaning towards having the biopsy. Can you tell me if the top of your head was also very painful? I don’t experience headaches just had pain on the right side. I can’t seem to get much help from Drs. Too quick to diagnose and give me amitriptyline or gabapentin. Thanks for your help.

@evinann, GCA is nothing to mess around with. I would seek help from a rheumatologist as soon as possible, or teaching hospital or major health facility. Here's some information from Mayo Clinic:

"The best way to confirm a diagnosis of giant cell arteritis is by taking a small sample (biopsy) of the temporal artery. This artery is situated close to the skin just in front of your ears and continues up to your scalp. The procedure is performed on an outpatient basis using local anesthesia, usually with little discomfort or scarring. The sample is examined under a microscope in a laboratory."
--- https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/diagnosis-treatment/drc-20372764