I have been reading on here for quite some time now and everyone seems so caring and kind. I don't know where to start. I had lung cancer 13 years ago and have COPD and was seeing a Rheumy for Fibromyalgia when he decided to do an ANCA lab test in October. It came back positive for c-ANCA so he said I had Wegener's and started me on Septra for 30 days then Methotrexate which made me sick for 4 days after taking it. He switched me to Imuran, 60 mil of prednisone a day, and folic acid. I am on other meds for COPD and silent reflux, anxiety and dry eyes. I have moved, and now the new Rheumy isn't sure I have Wegs and is reducing my prdnisone to have blood work done and a biopsy of my sinuses. I feel like I have wasted 6 months of my life on meds I may not have needed, weight gain, stress and cost as I did not have insurance and had to pay everything out of pocket.
I am down to 5 MG of Prednisone and wake up with a headache everyday. Sometimes it goes away and sometimes I need to take migraine meds. I see on this site that a lot of you have tests done while on all your meds so I am confused as to why this Dr. wants me to get off the pred. completely before doing the blood work and biopsy. I had such a bad headache the other day I went to see him and insisted I get these tests done that I felt 5MG of pred was not going to make a big deal on tests. I need to know what is going on. It seems like he wants to blame everything on sinusitis and allergies. I have a rash on both arms, stomach and back and they say this is from the prednisone. Why would I have it on 5MG and not when I was on 60?
There is so much more to say, ask and "complain" about this is why I am dazed and confused!
Anyhow,I have learned a lot from you members and hope to get some answers soon.