Adjusting to life with temporal arteritis

Yet to be diagnosed however all symptoms point to GCA/temporal Arteritis. Today is my 44th bday.

Hi @tillysam, I don't think I ever experienced a heaviness feeling in the upper chest, neck and shoulder area during one of my 2 PMR occurrences other than the normal pains and aches that go with PMR. If I'm not mistaken, I think @sidsell1 and @cd54016 have posted about a heaviness in the chest area but I'm not sure it's the same as what you are experiencing.

I know from reading that people associate the heaviness with heart problems but it can have multiple causes including anxiety among other things. This article might explain it better --- What causes a heavy feeling in the chest?: https://www.medicalnewstoday.com/articles/324537

Did these new symptoms start after you switched from prednisone to hydrocortisone? Do you think it might be a side effect?

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.

The heaviness in my arms, upper chest, neck and shoulders started on Prednisone and continue on Hydrocortisone. My endocrinologist and cardiologist say it is muscle myopathy. They say I will feel better once I am off steroids. At the rate I am going in terms of tapering the steroids, I have no idea when this will happen.

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.

Hi @marmak, I'm so glad you caught the GCA fast. I had symptoms of GCA a few months before diagnosis, and PMR maybe 9 months before that. After biopsy was positive for GCA, I started on prednisone 40 mg, tapering down by 5 mg every two weeks. It went pretty well. I only had to go back up to the previous dosage once when tapering. I've been off prednisone a few months now. I have odd pains here and there, but am much better than what I was.

My worst side effect while on the high dosage of prednisone was insomnia. My appetite returned as I'd been anorexic with PMR and GCA, but I watched what I ate. I also have osteoporosis, but that started before the prednisone.

I wish you the best. My mother-in-law was diagnosed with GCA in her 80s and lived to be nearly 100.

I'm 23 I've been having a chronic headache for over a month about a month ago i had a unilateral headache on my right side accompanied by a swollen artery right past my hairline that i cant visibly see but i can feel with my fingers pulsating. I went to urgent care where a doctor told my i had temporal arteritis regaurdless of my age and sent me to the ER where they gave me a headache cocktail and took a ct scan which was clean but did not take a biopsy or blood and sent me home telling me it was a tension headache, unsatisfied i went to my primary who felt the artery and just told me it was tension and sent me home with instructions to take vitamin d, drink more water, and exercise to reduce stress. I have done all of these exercise makes the swelling worse so i dont like doing it because it feels uncomfortable. so its been a month nothings changed except there is not really any pain i just feel pressure where the vein is and sometimes over my eye and sometimes in my ear. sometimes there is no pressure and i feel perfectly fine other times like today it feel super uncomfortable and it gives me anxiety. I do not have a tender scalp or jaw pain or a reduced appetite i sleep just fine and my vision is fine other than sometimes my right eye can feel slightly strange sometimes, also sometimes i feel like weird tingling on my scalp in various places and feel nerve twitches in my face or fore head and weir chugging in my veins? what should i do?