So I had my followups with me PCP and kidney doctor yesterday. The kidney doctor is still confused as what he thinks is going on, but is still monitoring my labs and FINALLY following with my other doctors. My PCP said he is 100% sure its lupus. I was hoping maybe they would find something else but I am glad he is so sure and will be trying to treat it.I think I rather know then not know. He said my case isnt typical but he has seen several through his career. My PCP also stated they are looking at the current labs and such and not what they were in March. He did say, we asked for a different opinion from the Rheumy. that we will wait to see what she says the 27th, then re-evaluate and decide what to do. We will either try and start from square one or add different meds. Both my kidney and PCP finally brought the idea of trying methotrexate, this is a huge step as they havent talked about anything but prednisone and plaqunille for 9 months!!! I have been off the plaqunille for about 5 wks now and I havent seen any difference good or bad. So I am not sure if I should stay off or go back on. I am just so worried about it affecting my eyes. So far the New Year is looking up! I HOPE! :)
I agree, It was a relief to me when they finally diagnosed with lupus because I felt they were jerking me around for a bit. I’ve been on plaquenil since October. I’m not sure if it’s worked, perhaps the severity of the pain. I heard that it takes up to 3 months to start working, so perhaps you need to wait a bit? I haven’t had any issues with my eyes. I’m so happy for you that the new year has come with hope!
It so hard, especially when doctors just jerk you around and treat you bad and cant decided what they want to do. I had been on plaquinlle for 5 months before I quit so I don't know if that was long enough or not. My new rheumy is all for it, but my opinion is if its not doing anything why take it????
Having a name to your illness helps tremendously in learning to cope. Never heard of methotrexate for kidney in lupus altho Cytoxan is used in severe cases. I have had the dx since 1967 with advanced kidney involvement and other body systems being affected - sorry to say that prednisone has been the mainstay of treatment in the control of my disease. Altho the side effects are not pleasant- they are still less than the illness and it is because of steroids that I am still alive and fairly active nearly 50 years later. And I have been on various dosages of prednisone for 30+ of those years. Plaquenil I would leave up to the doctor's recommendation - it is a disease modifying drug and one of the ways it modifies this illness is by lessening the severity of a flare when they do occur. You don't necessarily feel better or worse but it may give your internal organs some extra protection. Or not- best left to the expertise of the specialists. Sounds like you are making progress- here's hoping for a better 2014!!