NikkiNicole
03-24-2013, 04:08 AM
Hi Everyone! :unsure:
So I talked with my rheumy yesterday. I had emailed him because when I started Prednisone, he said he wanted me to begin a taper at two weeks. Unfortunately, I only have symptoms and a lung nodule to gauge my feeling on so he can't really track me without updates from me on how I am feeling. I emailed him that I'm still coughing up speckled blood, I don't cough all day but I do cough every day. My nose and eyes burn, the sinus headache, and the fever every single day (low-grade, not to worry). He called me and said he didn't want to keep me at 60mg a day if the symptoms aren't improving and wanted me to cut back to 40mg starting today.
Does this sound normal? I mean, to me it was weird that I'm not improving that quickly and he wants to take me off the meds? At least to taper back so I am not at such a high dose. I think he would rather I stay longer at a lower does so it can work on me? I don't know. Again, I cannot start Cytoxan until my radiation is finished so I doubt I'll ever feel better until then. I mean, my immune system is psycho and the prednisone isn't going to stop my immune system from doing what it's doing, right?
I'm going to do what the doc says, of course. He also said he is referring my information to the same pulmonologist as well to see if she has any input. I won't hear from her until next week obviously.
I just feel like I'm in a holding pattern. Sometimes I feel like my rheumy is so hell bent on this being something other than WG. Yet, all signs and biopsies point to it. I don't want to be super sick before he finally is like OK! I mean, I know he is going to give me the next round of meds as soon as he can. IN the meantime though, I kind of feel like I'm more of a bother to him than a patient. I don't know.
Am I being weird? Oh ... is there anything I should expect with this taper? Any fun new side effects?! :confused1:
So I talked with my rheumy yesterday. I had emailed him because when I started Prednisone, he said he wanted me to begin a taper at two weeks. Unfortunately, I only have symptoms and a lung nodule to gauge my feeling on so he can't really track me without updates from me on how I am feeling. I emailed him that I'm still coughing up speckled blood, I don't cough all day but I do cough every day. My nose and eyes burn, the sinus headache, and the fever every single day (low-grade, not to worry). He called me and said he didn't want to keep me at 60mg a day if the symptoms aren't improving and wanted me to cut back to 40mg starting today.
Does this sound normal? I mean, to me it was weird that I'm not improving that quickly and he wants to take me off the meds? At least to taper back so I am not at such a high dose. I think he would rather I stay longer at a lower does so it can work on me? I don't know. Again, I cannot start Cytoxan until my radiation is finished so I doubt I'll ever feel better until then. I mean, my immune system is psycho and the prednisone isn't going to stop my immune system from doing what it's doing, right?
I'm going to do what the doc says, of course. He also said he is referring my information to the same pulmonologist as well to see if she has any input. I won't hear from her until next week obviously.
I just feel like I'm in a holding pattern. Sometimes I feel like my rheumy is so hell bent on this being something other than WG. Yet, all signs and biopsies point to it. I don't want to be super sick before he finally is like OK! I mean, I know he is going to give me the next round of meds as soon as he can. IN the meantime though, I kind of feel like I'm more of a bother to him than a patient. I don't know.
Am I being weird? Oh ... is there anything I should expect with this taper? Any fun new side effects?! :confused1: