Thanks so much for replying. I think being in a "group" will do me good.
I did tell my rhuemy that it wasn't helping, and he said he'd have to put me on super addictive meds since the hydrocodone 5/500 wasn't working. He then said I should just battle through it with the 5/500's. I agreed in part because I don't want to become physically dependant on anything.
When I talked with my psych and told him everything, he said there is a stronger version of hydro, called norco, which is 10/325, which allows you to use 2 at a time for severe pain. My rhuemy said that the 5/500's were the strongest hydrocodone meds availaibale. My psych said this was not so. I wonder why my rhuemy would not know that?
Since seeing the psych, I now have norco, and sometimes it isn't effective either. I do have to take 2 for it to work. I also start prednisone immediately when this happens. I have done a lot of research, and apparently the lupus headache can occur even when disease activity is low....odd, eh? I would think otherwise. I was on plaquenil for months and stopped because of side effects. I prefer prednisone.
I do notice an increase in headache when my Raynaud's is worse...
I have: SLE, Raynaud's, Livido Reticularis, joint pain and headache, rashes, pleurisy, heart palp.
Meds: Fish Oil, DHEA, prednsione 10 mg. Norco, aspirin, vicodin 5/500, ssri