Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

I'm scheduled for biopsy tomorrow. Can they do just a blood sample? that would be so much easier!! I'm a nervous wreck about this!!

I was so nervous also! It s natural and a lot to go through. When mine was done three doctors called me. I knew it was positive. You can do this . We are here for you. This was six years ago and it was rare in Kentucky .

was supposed to go yesterday for biopsy....what a mess with schedule !! basically "lost me", then tried add me on late night!! As of now, it has been resolved (hopefully) and go Friday late morning with a different surgeon in practice! Did have my MRI done and it is all normal. still no results on blood work. Never met surgeon at appointment Monday...only the PA. She told me that they were doing both sides and general anesthesia !! Not what I wanted to hear, or expected....had been told only local anesthesia. Don't quite understand "the time is of the essence" due to prednisone. was told that the biopsy was one of the most "simple" vascular procedures. Still nervous about having it done, but did get a note from my GP to please go and get it done as it was so important.

You have had quite the adventure . Hopefully you will know something soon.

My husband was diagnosed w GCA 1.5 years ago. Prior to biopsied diagnosis, he began 60mg prednisone to stave off blindness. Today, he’s been bouncing between 5 & 7.5mg for several months while getting monthly blood tests. Early on he was prescribed Methotrexate (an old chemo drug) to help reduce prednisone more quickly. Methotrexate caused mild hair loss. He also took Alendronate for bones, which caused chest pains so he stopped and instead takes supplements. Prednisone caused prednisone-myopathy for which he now goes to PT to rebuild strength. Compound issue. With prednisone weakeing his immune system he got a severe case of shingles a year ago (try to go easy on your immune system). He had a shingles shot 5 years ago and has since gotten the shingrix vaccine. For 10 months he’s had debilitating postherpetic neuralgia (post-shingles; rash goes away/pain stays). He tried a plethora of meds that either had bad side effects or little improvement; gabapentin, amitriptyline, cymbalta, tramadol. A month ago he tried Qutenza 8% patch treatment (quarterly) and experienced 40% improvement. Three months ago he started working with a Chinese herbalist and experienced some improvement. He also uses daily lidocaine patches. Note about shingles; according to pain doc, there’s a 6 week period when shingles can transition into post-shingles. If during that time a patient receives a steroid epidural, the epidural has a chance to help heal post-shingles. Once fully transitioned into post-shingles, the epidural will not work. Also according to the doc, whatever pain one has a year after shingles is likely what they’ll have for life regardless of treatment.

Hello @slsslssls, Welcome to Mayo Clinic Connect. It sounds like your husband has a lot going on with his health. I think it's bad enough having GCA but I can't imagine throwing postherpetic neuralgia into the mix and dealing with that also. Thank you for sharing his experience and being his advocate. There is another discussion that you might find helpful where you can meet other members with similar symptoms that have shared their experience.

Shingles and Postherpetic Neuralgia and Pain: https://connect.mayoclinic.org/discussion/shingles-and-neuropathic-pain/

Are you able to share a little more about the treatments and how he's been helped by the Chinese herbalist?

I am presently on ACTEMRA. a biologic that I inject with EPI pen weekly.. it inhibits the blood markers CRP and SED rate so The only indication of inflammation is by symptoms. I also,presently am back on 55 mgs if Prednisone as I had a episode of vision loss in one eye for just a minute. That episode sent me to Emerg where I was given 1000 mg intravenously each day for 3 days.

What were the problems with your eyes? I have no or very little pain in my temples, but my vision seems to be getting worse almost daily. It is blurry, and sometimes I see double. I can barely see street signs and read my computer screen. I have neck pain but not too many headaches. Could this be GCA? I have had PMR for almost a year now, and am down to 5mg of Prednisone a day.

Have you seen an ophthalmologist or whomever is treating you for the PMR about your sight loss?
Not trying to alarm you but often people with PMR develop temporal arteritis which can cause loss of vision. It’s treated quickly with prednisone.
I know you’re on that now but at a very low dosage. If this were me I’d make a phone call to my doctor ASAP!!
Did the vision loss start after you began the prednisone taper?

The vision loss has been going on since I was diagnosed, but is getting worse. I haven't had headaches or bad pain in the temple area. No sore scalp. Just my eyes are bothering me. I can't tell if it is cataracts or something else. It does have me worried.