Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

It took almost 6 months to be diagnosed with GCA. Part of it was my fault as I kept telling my dentist and internist that I thought my TMJ was acting up. Finally blood tests revealed that things weren’t good. I got a neurologist who diagnosed GCA. He put me on 40 mg of Prednisone and told me to take Pantoprozole for acid relief ( which he said I would have problems with the Prednisone) and Fosamax( Prednisone can give you Osteoporosis).
About a day later I was having problems with not being able to see well. Called my neurologist and left him a message about what was happening. He never called me back. I waited 3 hours and then called my own ophthalmologist who was shocked that the neurologist left me hanging. He raised the Prednisone to 80 mg. He saved my eyesight. Went for a temporal biopsy which proved that I had GCA. Got connected with a neurologist-ophthalmologist who follows me. I started to taper the Prednisone and had difficulties. It has been almost 2 years and I am down to 20 mg. Over the months I tried Methotrexate and Actemra. The side effects were horrendous for me. I kept complaining about neck and shoulder stiffness and pain, heaviness in my upper arms, upper chest and shoulders. My rheumatologist doesn’t know what to do with me. He says I do not have PMR. It seems as if I am always complaining about something bothering me. This has been a long haul and it is far from over. Sorry that this piece is so long

I think you might need a new rheumatologist who will listen. Sometimes I feel like I'm always complaining as well because sometimes I hurt so badly trying to taper off Prednisone. How does you rheumatologist know you don't have PMR? A very large percentage of people with GCA have PMR as well.

And visa - versa. They work together most times.

GCA generally is my prominent illness the headaches will show prior to any hip or shoulder pain. I am on Methotrexate 20mg injection, prednisone down to 2 mgs, Fosamax and pantoprazole. Was on Arava which was wonderful but side effect was peripheral neuropathy also previously on a biological which was fantastic however developed diverticulitis, we are all so different it must be quite difficult for the rheumatologists as most meds are trial and error finding what works for you! My journey changes constantly and I need to be ready to adapt and change meds!
I had COVID recently mild illness and then i developed a second virus in sinuses and upper respiratory, on nasal spray and antibiotics in the middle of flare ATM not sure why as i was doing very well on Methotrexate and prednisone tapering well. Will have to discuss with rhuemo whether to increase the pred till this virus is done! Today hip girdle pain on standing no pain at rest, right temporal pain lower jaw pain. 2 steps forward 3 steps back head high, forward facing, charging to beat this thing!

Has anyone been diagnosed with Temporal Arteritis when all tests were negative? I started having headaches at my left temple in 2019. My blood work, ultrasound and biopsy were normal at that time. I had another temporal artery ultrasound this year which was also normal. SED rate and CPR are always in the normal range. The headaches have continued since 2019, coming and going for weeks or months at a time. Now the left sided headaches are daily 24/7 and often extremely painful. I also have bad pain at the base of my head, back of neck and left shoulder blade area. My arms and legs are achy and I'm tired most of the time. All my doctors (primary, rheumatologist and neurologist) tell me it's not Arteritis because my tests were negative and inflammation markers are normal. I don't have any jaw pain and my temples are not sensitive to the touch. Recent eye exam was normal. But my symptoms match those of TA. I don't want that diagnosis but don't have an answer to my symptoms which are making life very difficult. Thanks.

Hi @ripley, did your doctors ever prescribe a diagnostic trial of corticosteroids to see if your symptoms go away? I had most, but not all of the symptoms for GCA (which sound a lot like yours) and a positive temporal artery biopsy. Have they tested the arteries on both sides of your head?

Did you get ever get checked out for fibromyalgia? Before I was diagnosed with PMR/GCA a friend who has fibromyalgia said my symptoms sounded like hers. I don't think fibromyalgia has high inflammation markers. I hope you can get a diagnosis and some relief to your pain. All the best, Teri

My artery biopsy was on both sides of my head. As far as corticosteroids, would that be something like prednisolone? My Dr prescribed a 6 day course of prednisolone and it seemed to help but I got a rash on the 2nd day and had to stop taking that med. Another Dr recently prescribed a muscle relaxant med to help the pain in my neck and shoulder which she said was from muscle spasms. That is helping some. Are there tests to check for fibromyalgia? Thanks for your comments.

Hi @ripley, pprednisone is a corticosteroid. When I had severe neck pain with GCA and leg pain and stiffness with PMR no amount of exercising, stretching, etc. helped because it's impossible to get blood flow to the affected areas. I don't think Fibromyalgia is easily diagnosed. I remember reading about pain points on both side of the body. Mayo Clinic probably has information posted on fibromyalgia.

The chapter on PMR and GCA in Cecil and Goldman's Textbook of Medicine advises physicians to try a diagnostic trial of steroids if sed rate and CRP are not elevated. If there is not a dramatic clinical response, it suggests pursuing alternate diagnosis - infection, malignancy, connective tissue disorder and hypothyroidism. So I hope that helps.

Thank you.

@ripley I found this information on fibromyalgia by Mayo Clinic. It explains symptoms,causes, treatments, etc.
https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780
As far as GCA, oral prednisone tablets are the best way to start. But, if your doctors think it could be muscle stress, then a muscle relaxant is good.
Did you ever get the results of the artery biopsies? What did they show?