So I am am a newbie to the site, but not a newbie to lupus sadly. Was diagnosed Type III Lupus Glomeronephritis in 1999 and I still have trouble spelling it! It's been pretty mild, all things considered, but the last year there have been a number of incidents that are making my treatment more complicated. I had a visit to the GP where they found I had really unreasonably high blood pressure, despite being on BP meds (losartan), so they plunked me in the hospital because they thought I was having a flare. The blood work came back negative, but it took 3 days to get my pressure down. I developed a blood clot at one of the IV sites from the hospital stay which meant going on Xarelto and getting a hematologist, who kept me on that for three months, and found no evidence of a lupus related clotting disorder. Now he is telling me that I am anemic and that I need biweekly shots to correct this as well as possibly IV iron or a blood transfusion. Finally, I had an incident of gout in May, just to top things off.
So here's where I am at. Everytime I go to the hematologist, he says, "gosh you must be tired" after looking at my blood work. And I kind of look at him funny, because I don't feel especially more tired that usual. I'm not falling asleep in the middle of the day the way I was two months ago. God knows, I've had those days where it's like "lay down before you fall down", but no so much lately. But I am kind of wondering if this is just my normal now. Yeah I'm tired, but this is how I am.
I do have pretty much daily headaches and occasionally achy joints. I get dizzy easily and bruise easily. (The hematologist says the bruising is just one of those things that people with immune problems get, nothing to be done about it.)
And I am concerned that the symptoms that are causing me the most trouble are actually side effects of my drugs. I have a pill box that is overflowing (Cellcept, Losartan, Coreg, Levothyroxin, folic acid, B12, B6, Vitamin D, Lexapro, low dose aspirin). More than one lists fatigue, anemia, headaches, and gout as potential side effects. And I don't know how to adjust things so that I actually identify the problem. My doctors seem to be chasing symptoms, and I am not convinced that this is not causing more problems. Right now I am pretty fed up.
The correct course of action is probably just to go to one of my many specialists and try to work it out with them. I'll probably try the nephrologist first, but has anyone else had to approach their doctors with something like this? Any advice for having the conversation?