Adjusting to life with temporal arteritis

Hi @ripley I have temporal arteritis. I had PMR first and my symptoms started a year before I was diagnosed. I had some symptoms that came and went - scalp tenderness, a very itchy torso, gagging attacks, a dry cough that always started after dinner, two incidents of not being able to see out of my right eye. The worst pain that stayed with me the whole time was a neck so stiff and sore I couldn't turn my head and pain radiated down the left and right sides of my head from the middle (where the tops of my ears were) to the neck. I also had short stabbing pains from my ear to my nose on the right side of my face. It started with a few, then increased to about 25 a day. Have you had blood work lately for inflammation markers - sed rate and CRP? My sed rate was about 120. If you don't have inflammation and it isn't temporal arteritis, it could possibly be an infection, malignancy, connective tissue disorderr, hypothyroidism (Cecil and Goldman's Textbook of Medicine). Good luck - I hope you get a diagnosis. Teri

Welcome @ripley, It must be really hard not knowing what's causing the left sided headaches and having them go away for awhile and then return. There are a couple of discussions that sound like they could be related to your symptoms.

-- Temporal biopsies to diagnose GCA: What's your experience?: https://connect.mayoclinic.org/discussion/gca-biopsies/
-- Occipital Neuralgia: https://connect.mayoclinic.org/discussion/occipital-neuralgia/

I'm not sure if this answers your question can it really be temporal arteritis going on for 2-1/2 years but it sounds like a possibility. "The most common symptom of temporal arteritis is a throbbing, continuous headache on one or both sides of the forehead. Other symptoms may include: Fatigue. Fever." --- Temporal Arteritis: Treatment, Symptoms & Diagnosis: https://my.clevelandclinic.org/health/diseases/15674-temporal-arteritis

@zaa and @tsc may have some thoughts or suggestions to share with you. Have you thought about seeking a second opinion or maybe talking with a rheumatologist?

What tests did the Dr base your diagnosis on? I don't have scalp tenderness or any of the symptoms you had, just headaches on the left side that come and go, and pain across the back of my neck. My blood work is all ok. Since 2019, my SED rate was never above 16 except for a week ago it was 25. My CRP was .04 on 1/25/22 but a day later when I was diagnosed with Covid it was .20. In 2019 I had both left and right arteries biopsied and it was negative. I know some people can have normal biopsy's and blood work and still have TA. I do have thyroid disease and take a supplement, which was recently reduced from 50 to 25mcg. Thanks for all your information.

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.

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

Hello @whaler33, Welcome to Connect. I'm not sure @prednisone4gca is still following Connect but there are other members like @tsc, @ripley, @654321 and others may have some suggestions to share with you. The Vasculitis Foundation has some good information you might find helpful until other members can share their experiences and suggestions with you.

Giant Cell Arteritis (Temporal Arteritis) - Vasculitis Foundation: https://www.vasculitisfoundation.org/education/forms/giant-cell-arteritis/

What have you found to be the most difficult part of the diagnosis for you?

Hi @whaler33 I hope you get an answer from your biopsy. It's a great relief to get a diagnosis. What symptoms did you experience and for how long? If it is GCA, we are lucky that symptoms are managed so well for most people with prednisone. I began a high dosage of 40 mg in May and now just started a taper to 3mg. My symptoms have disappeared with the exception of a little twinge here and there. I just try to respect my body by eating well, exercising, getting proper sleep (on a high dosage of prednisone that will be challenging and NEVER take melatonin). Also, try to avoid high stressors or pushing yourself too hard. My mother-in-law had GCA, diagnosed in her 80s, and lived to be nearly 100. I wish you the best and keep us posted.

I was diagnosed with GCA in July of 2019. Had all the symptoms and was waiting for an appointment to see a doctor, but went to the ER when I lost sight in my left eye for about 15 to 20 minutes. The ER doctor diagnosed it immediately and sent me for a biopsy which confirmed it. I was put on 80 mg. of prednisone which looking back was probably too high because I got avascular necrosis and had to have a shoulder replacement. I've been trying to taper my prednisone which has been very difficult. I got down to 10 and was doing great. Playing golf again, exercising and feeling wonderful, but several times trying to get to 5 has been very difficult. Terrible neck, shoulder and back pain. Taking my dog for a walk around the block is hard. I come home exhausted. My advice is try and get lots of sleep and try to stay positive.

Hi @marda, Do you mind sharing the dosage that you tapered down when you got below 10 mg? My rheumatologist gave me an RX for 5, 2.5 and 1 mg tablets which made it easier to go down slowly.