PMR/GCA?

[Boozsa]

I need advice! I am a 43 year old female suffering for 3+ years now and believe it’s PMR and now GCA. Her goes: I first presented with the classic PMR symptoms: hip/back/leg pain, joint pain, low fever on off, fatigue and stiffness, eventually neck and shoulder pain. Physical therapy has caused flare ups.I had a positive ANA so got sent to a Rheumatologist who did labs. Here is the kicker, normal labs. My ANA remains positive, my ESR always negative and my CRP only mildy(1-2 points) elevated at times. So, roadblock after roadblock to any diagnosis. Now fast forward about 1 1/2 years and I stated getting jaw, face , head pain. Now headaches with some vision disturbances and a hard swollen sometimes bulging temporal artery. Pain flares up and down throughout the day and night. Sensatibe scalp, touching it can trigger it, or laying on a pillow,I’ve had little blisters on my scalp and acrosss my pelvic bone where I sometimes experience pain and swelling there as well. Primary care dr put me on prednisone 60 mg. I got better in 2 days, reduced it to 40mg and then took me off completely when he consulted another dr about a TAB for me who said I was too young and my labs were negative. Symptoms are back now and I just got back from the ER having a flare up of pain. BP was elevated 140/105

I’m home now waiting for a general surgeon to hopefully see me for a TAB, not scheduled yet office is calling me Monday after they talk to surgeon.

Does this sound like PMR/GCA to anyone else? Is diagnosis almost impossible if your young? And should I take the prednisone again like the ER doc said? I’m terrified of finally getting a TAB and having it be negative because I’ve been on steroids. I was already on them 1 week, now off for 3 days with symptom return. What to do? I will know something Monday or Tuesday I think

Please help. Any and all advice is appreciated. This has been so incredibly diffficult

[Mary63]

Sorry I replied first to your later post. I now get the picture I can’t remember the percentage, but say 10%? Of PMRGCA sufferers have normal blood tests. And you have a double whammy as you are so young. BUT your symptoms are absolutely typical.so if it was me I would take the pred to protect my eyesight, even if it risks a negative tab.

More knowledgable lot will be along later.

Good luck

[PMRpro Ambassador]

I've also replied on the other thread.