Newly diagnosed here and trying to orient myself regarding sun safety. I began treatment recently and have been avoiding being outdoors 10-4. But the UV is very strong before and after then as well. Curious do you follow a UV threshold for when you feel comfortable going outside for a walk?
My next rheum appt is a week from now where she will let me know what plan is moving forward.
I've been on HCQ for 5 weeks now and a 15mg prednisone for 4 weeks.
I'm trying to anticipate what is typical now. I did have some chest pains and we ordered an echo and are awaiting results. The current symptoms I'm experiencing are: tingling, fatigue, hair loss, chest pain. The prednisone is helping with my joint pain.
Is it typical to wait till HCQ hits 3 months and continue with prednisone, and then taper off prednisone and if the taper causes flares to add in a steroid sparing agent?
Or is it typical to add the steroid sparing agent in now?
My bloods still show high disease level activity
I'm recently diagnosed I have had 2 appointments with one rheumatologist and the bedside manner was horrendous. I was referred to a new one and she is slightly better but I find I am very rushed and she's not spending the time educating me on anything. I'm from Ontario Canada and this is pretty typical of doctors here, however as I listen to the experiences of lupus Ontario patients they mention how important it is to have a rheum who takes the time to explain things, explain the treatment plan, listens and makes you feel heard...
I'm not sure how feasible it is to come by doctors like that?
I was wondering if you have any tips/protocols you always use when attending an appointment?