I'm so grateful for this site b/c I have so many questions about this disease. My fiance was diagnosed about 18 months ago, so we're still learning about this. And I don't feel comfortable calling the doctors to ask general questions. It seems any symptom could be a sign of a flare and it makes it super confusing, whether to be concerned or not. He gets regular blood test, (actually) just had one last week. and (I think) the doctors are okay with it b/c we didn't get a call otherwise.
I'm curious how many of you feel tired (off and on) to the point where you have a hard time keeping your eyes open? Is this fairly common? And when/if you feel this way, are you (still) considered in remission?
Also, do you find a pattern where you feel fine one day and the next day you feel ill? How often does this happen? And how often do you get headaches? Are your fingertips white? Do any of you have the following symptoms while tapering off the prednisone? Mild joint soreness/stiffness? headache? night sweats? Anything you could ad (in addition) would be so helpful.
Are you on Azathioprine? Does it make you tired? Is your white blood count in normal range or is it below. (his fluctuates-but doctors don't seem concerned)-I'm curious what your experience is. What are your side effects...if any to this medication? What other medications are you on for this disease besides the Azathioprine? (for example, he is on Azathioprine and prednisone)
As you can tell, I'm loaded with questions. Thank you so much for your reply! I really appreciate any input you have.