Adjusting to life with temporal arteritis

@mariannj Welcome. May I ask how long you have had GCA and what treatment you’ve received? Do you take any prednisone?
I have a different autoimmune disease but I find that we all learn from each other. Strength in numbers!

Diagnosed with biopsy end of September following 2 weeks of headache, jaw claudification and finally visual distortion. Since Mom and sister both had it I knew to immediately get help so the very next day I was receiving 1000 IV prednisone for three days. Biopsy was on day 2. Vision was saved and headache disappeared. Next I began with oral 80 mg and eventually tapered to 10 currently. I have extreme Cushing syndrome so doctor is trying to get me down to a lower dose. I also am an outlier, meaning I am out of the normal sphere of patients with my side effects. I was 79 when diagnosed, now 80. Yea! On octogenarian! At my worst I needed a walker and could not rise out of chair or off toilet without assistance. I had grab bars installed in bathrooms and shower. Since I live alone it was an almost insurmountable task but I was blessed to keep my vision and would suffer with all the side effects to keep it. My treatment is through Mayo in Phoenix. Some of these side effects have disappeared and some still linger. I am on a blood thinner for my heart and am taking calcium, Nexium and assorted supplements per doctor's recommendation. I had bone density in the beginning and follow with thyroid blood checks, as well as everything else that Mayo checks with each blood draw before tapering..

My Prednisone Side Effects:

Insomnia
Creative mania
Physical mania
Fatigue
Auditory hallucinations (loved the music)
Neuropathy
Myopathy
Hair loss on head
Eyelash loss
Cushing syndrome
Super sensitive painful skin
Thin skin
Heart Palpitations
Tachycardia
Irregular heart rhythm
Shortness of breath
Night sweats
Day sweats
Trouble concentrating
Extreme thirst
Funny taste to all food
Difficulty swallowing from lumps on neck
Sores on tongue and gums
Unsteady gait
Balance issues
Swollen ankles
Joint pain in hip
Lower back pain (probably due to support huge stomach)
Skin splitting open
Hunger ALL the time
Bruises everywhere
Heartburn

@mariannj Welcome. May I ask how long you have had GCA and what treatment you’ve received? Do you take any prednisone?
I have a different autoimmune disease but I find that we all learn from each other. Strength in numbers!

@mariannej We have a very similar story, except I lost the vision in my right eye at the beginning of my GCA journey in 2019. You're the only one I've heard of who had the 3 day I.V. 1000 Prednisone like I did. I suffered a stroke on Day 2, and a second stroke three months later. Was in a wheelchair for a long time, had your same ambulatory difficulties, and was just SO sick. Was prescribed the newer injection drug Actemra in November 2020, along with tapering Prednisone, but quickly taken off both when my WBC and neutrophils dropped drastically. Terrible six-week withdrawal followed. Now only on weekly Actemra injections and gradually improving. Began walking outdoors a month ago, with my trusty walker, and today broke my record at 1.2 miles! So very happy about that.
I hope you are having some easier days.
Warm regards,
Laurie

Oh my you have had a round time. Hope you are better soon.

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.

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.

I started having left-sided headaches in June 2019. They would be worse at night. Taking 1 aspirin usually resolved them. I had a temporal artery biopsy on both sides 9/19 that was negative, and have always had normal blood work, SED and CRP levels so assumed it wasn't TA. The headaches would sometimes go away for 6-8 weeks, then return for a few weeks. I treated them with aspirin, acupuncture and massage therapy, which helped. Now the left-sided headaches have been back for a month, along with muscle pain in the back of my neck that sometimes seems to radiate up the back left side of my head. I don't have scalp tenderness. My Dr just mentioned about it possibly being temporal arteritis and got me all stressed out. On top of that I am on day 6 of having Covid. I have a video appt with my Dr on Tuesday and he might suggest starting me on prednisone. Can it really be temporal arteritis going on for 2.5 years? I spoke with a neurologist yesterday who doubted it but am worried about vision loss.

I started having left-sided headaches in June 2019. They would be worse at night. Taking 1 aspirin usually resolved them. I had a temporal artery biopsy on both sides 9/19 that was negative, and have always had normal blood work, SED and CRP levels so assumed it wasn't TA. The headaches would sometimes go away for 6-8 weeks, then return for a few weeks. I treated them with aspirin, acupuncture and massage therapy, which helped. Now the left-sided headaches have been back for a month, along with muscle pain in the back of my neck that sometimes seems to radiate up the back left side of my head. I don't have scalp tenderness. My Dr just mentioned about it possibly being temporal arteritis and got me all stressed out. On top of that I am on day 6 of having Covid. I have a video appt with my Dr on Tuesday and he might suggest starting me on prednisone. Can it really be temporal arteritis going on for 2.5 years? I spoke with a neurologist yesterday who doubted it but am worried about vision loss.