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What's it going to take to get a definitive diagnosis for lupus? Sheesh! Are the plaquenil and prednisone for the arthritis? How bad is the arthritis? I'm sorry you are struggling with so many things at once. Which doc have you gone back to for the return of your symptoms? I'm really baffled that they wanted to wait 6 months for re-checks of your ferritin level. Obviously that wasn't a good plan, since you couldn't "make it" until December.

My hematologist had me coming in every 6 weeks. I did also have low hemoglobin and hematocrit, along with a ferritin level of 5, but it was the ferritin that she was most concerned about. At the first re-check my ferritin had only increased to 5.7 and my other numbers were still low. I'm now no longer officially anemic and my ferritin was up to 26 at last check. She wants to see me again 4 months after my last appt. She said that low ferritin definitely causes symptoms, and that she expected me to start feeling better once my level had reached around 100. I really don't understand why your hematologist is not taking your low ferritin more seriously. If it's bad enough to require iron infusions, shouldn't you be tested more often? Maybe it's time for a new hematologist.

I hope you get some relief from your infusion, if you end up having one. And that you get a definitive diagnosis soon. Can you ask to get blood tests more often, so that you don't get to feeling so sick before they decide you need another infusion? That just seems so unnecessary! If the infusions are going to be a maintenance thing, it would be nice if they could actually [I]maintain[/I] your feeling better.

Let us know what happens....

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