My journey (LVV) started with some major constitutional symptoms. These are pretty much the same things you get when you're diagnosed with cancer, which is most everyone thought it was. I'm talking headache, fever, shortness of breath. cough, weight loss.
Just curious how many others had those symptoms as well? Is it just an LVV thing? Do GCA folks get it too? PMR?
Hi winfong, Yes, I have GCA and had those symptoms plus scalp tenderness, fatigue and neck pain.
Hi there. Yes sounds familiar. I have had LVV/GCA since last August. For me it has been extreme fatigue, weakness, night fever, palpitations. Exercise tolerance has been greatly reduced and walking up any minor hill a no no. At my worse was really able to do very little. Slowly improving now but flare when reduce pred. Hope you have some progress 😀
Yes - common to GCA/LVV/PMR. And they do all overlap a lot as I've explained with this link:
Dear winfong. I have - that‘s at least the working diagnosis -LVV without cranial involvement. Symptoms such as low fever, malaise, fatigue, night sweats, cough started overnight end of last year. I had no other but the constitutional symptoms. I was checked for infectious disease, cancer etc. and only after three month got the diagnosis when I was admitted to the rheumatology department of a University hospital. I am taking prednisolone + Tocilizumab and symptoms resolved quite fast and I hope that the prednisolone tapering scheme I am on works.
Yes my symptoms were also generalized. Intermittent fevers, fatigue, wgt loss. Also had hoarseness, which later as I was weaning Pred was the best indicator for having reduced too low.
Actemra, Methotrexate, and the immune system
Interesting BBC Article today: Could over- active immune system trigger Chronic Fatigue / ME -like Symptoms? 
immune system compromised
Unusual pmr attack on system
