Temporal biopsies to diagnose GCA: What's your experience?

@zaa, I think @geniecm @tinkerbell @charann2000 @paddington @golfmom may have experience with temporal biopsies to share with you.

From what I have read, the procedure may be done on one or both sides of your head. Did you ask your doctor why a bilateral (both sides) biopsy is necessary in your case?

I wish I had asked at the time but I was so sick I didn’t ask, just went with what doctor said. Now I’m getting wiser and asking, researching and getting other opinions. Was curious what others had done.

Hi Zaa, My doctor asked on what side of my head I was experiencing most of my symptoms. It was the right side, so he decided to have the biopsy done on that side. It was positive.

Interesting! What symptoms were you experiencing more on one side? My whole scalp felt weird and was driving me crazy. My results turned out negative and since my sed rate and C-Rp went down so fast, doc told me it’s highly unlikely I have GCA. It sure seemed like I had it with the scalp issue but feel so lucky….for now. It still seems excessive to me that I was told to do both sides but I’m being apprehensive now on my treatments. I was also told to do bone density infusion but refused. Now that I have my strength back and less brain fog, I want to make intelligent decisions about my health. Thanks for you reply.

Hi Zaa, My symptoms on the right side were the inability to see out of my right eye twice. It didn't last long and went away. Short stabbing pains on the right side of my face from the right ear over to the nose. They started as strange pulsating feelings, but became stabbing pains, occurring more frequently. One day I counted 25. On both sides, I had a terrible stiff neck and neck pain that started in the back of the head on both sides and lasted for months, until prednisone was increased to 40 mg a day; also, dry cough for a couple of months. My scalp was tender for a few weeks. I also had low energy, due to anemia, and lost about 12 pounds, due to a lack of appetite. I've been diagnosed with osteoporosis and started Fosamax. I'm doing all I can to build my bone density so I can get off it sooner vs. later. Did you get a diagnosis?

My neck was also very sore, had terrible sinus issues, dry cough and currently can’t regain any of my weight back. I’ve lost over 25+lbs and skin is sagging from the loss muscle. Always worked out so I’m also trying to gain it back but learned yesterday that you can easily overdo it. I think the diagnosis is PMR for now. I was also put on 40 mg but after almost 2 months I’m down to 15. I’ve changed my diet to no gluten, limited amount of sugarl, lots of protein, fats and veggies. I recommend reading The Autoimmune Solution” by Amy Myers. This diet however is not going to add weight so I add on extra smoothies etc between meals. Going in for DEXA scan soon and very scared at what that will tell me.

Also wanted to recommend another interesting book by Dr Lani Simpson ‘No-Nonsense Bone Health Guide’. She has lots of info on Fosamax and the other drugs that are out there.

I had one side and it came back negative, which was accurate

Hi zaa, I found the prednisone stimulated my appetite - so I've gained some weight back. I've always been careful about what I eat and read about people who gained so much weight on prednisone that they got diabetes, etc. - so I'm still careful. My skin was sagging too. I started back doing strength training for osteoporosis with some of Carol Michael's workouts and I walk for an hour about five times a week. You can look up Carol Michaels on Youtube. My skin isn't as saggy anymore. I bought a vibration plate exercise machine as there are studies showing that whole-body vibration therapy can increase bone density. Just been doing that for a couple of weeks. Also added a probiotic supposedly good for bone density, L. Reuteri and Vitamin K1 in addition to the other supplements I take. Thanks for the references to the books, I'll check them out. By the way, symptoms of my PMR were incredible pain and stiffness, my whole body from the neck down. They went away after nine or ten months, but then the GCA set in. Just try not to get discouraged. I feel so much better now. I hope you do too.

I was just diagnosed with GCA one week ago. Just curious, what did you refuse the bone density infusion?