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
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
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UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
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Thanks for all your responses--
What kind of meds do you get from your doctor? Is it along the same lines as Norco? Are pain clinics effective? Do you find that (some) Docs are scared to treat the pain? I think you cannot quantify SLE pain as easily as you can cancer pain.....thus the undertreatment?