Adjusting to life with temporal arteritis

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.

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 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.

Your symptoms,etc. sound just like what I have been through. I started out at 80 mg. about 18 months ago and finally made it to 15 mg. My endocrinologist decided to get me off of Prednisone and go on Hydrocortisone. It’s been brutal.

Welcome @tillysam, Sorry to hear you joined the GCA club. I can imagine that going down from 80 mg prednisone to 15 mg was not that easy, especially given you did it in 18 months. Took me 3 and half years to get off of 20 mg starting dose the first around with PMR. Are you completely off of prednisone and on hydrocortisone now? Do you mind sharing how your tapering down is going?

Wondering if anyone has been put on Methotrexate for treating PMR while tapering off prednisone and if so, how did it go?

Welcome @tillysam, Sorry to hear you joined the GCA club. I can imagine that going down from 80 mg prednisone to 15 mg was not that easy, especially given you did it in 18 months. Took me 3 and half years to get off of 20 mg starting dose the first around with PMR. Are you completely off of prednisone and on hydrocortisone now? Do you mind sharing how your tapering down is going?

So, when I was on Prednisone I went on Methotrexate and then Actemra. I could not tolerate either one. Two weeks ago, I was switched from Prednisone to Hydrocortisone. I started at 20 mg in the AM and 10 in the PM. I felt awful and so the endocrinologist upped the dose to 25 in the AM and 15 in the PM. Again, I was miserable with night sweats, pains in my arms, shoulders and neck, plus headaches and extreme exhaustion. Today my doctor upped the medication to 30mg in the AM and 15 mg in the PM. My endocrinologist said that things would be brutal. He was right!

Just wondering if anyone feels underarm heaviness with the same feeling in the upper chest, neck and shoulders?

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.