Sorry, didn't mean to post that other one yet, I had a moment! Let's try this again.
I guess I'm wondering how everyone else got thru the process of getting on to the immunosuppressant, and weened off the prednisone.
Here I have been out of the hospital and off oxygen for almost 1 month to the day, I started taking Imuran exactly 1 month ago today on a 50 mg dose. My last appt with the rheumy was on the 16th of April, when I saw him I was doing okay (mild stomach aches) on the 50mg of Imuran and 20 mg of Prednisone with my twice daily advair. He doubled my dose of Imuran to 100 mg and sent me home to see how it went. The next day my pulmonologist told me I could quit taking the advair(which has addtl steroids in it), It made me very sleepy for abut 2 days, and then I started vomiting my morning meds which include pretty much everything except my supplements. I spent that weekend very sick and really sore.
The following Monday I saw my pulmonologist, she was not impressed with my breathing. I also took a chest x-ray which showed little to no improvement since the hospitalization. She put me back up to 60 mg of Prednisone and gave me some phenergan to help with the nausea.
A couple of days later I was keeping the meds down, finally. I went to get my CBC workups done last Friday, I don't know what they came back like, but I thought I'd get a chance to talk to my rheumy on Monday. Unfortunately I really apparently don't get to speak with him, but thru a nurse. He suggested because of the nausea that I fall back on the dose of Imuran to 75 mg to alleviate the nausea. I told him that my PCP had had me cut down the phenergan to a half dose and I stayed on the 100 mg. I'm afraid to go back because I don't want to go thru having to raise it again. I was supposed to move up to 150 mg on Tuesday, I don't know what the plan is now.
I also started my Prednisone (now down to 40mg) taper on Tuesday, and now today I woke up with some of my same old SOB, blood tinged sputum, and a serious lack of energy. I came home from work early because I couldn't even get my whole speel out on my phone calls because I'd run out of breath.
I feel like this cycle of lowering the prednisone and getting sick is never gonna end. This coming off the prednisone since I was first hospitalized is how I have ended up in the hospital twice more.
Does this crap ever end? I'm afraid to keep trying to reduce the Prednisone. It seems to be the key to my health right now. What are the bad side effects that they keep telling me there are?? Does anyone suffer from the bad side effects? I just seem to be jittery and anxious, I'll take that over not being able to breathe any day!
Diagnosis: Lupus Pneumonitis with Chronic Pulmonary Hemmorrhage and Anemia, Polycystic Ovarian Syndrome, Migraines
Medications and Supplements: 60 mg Prednisone, 100 mg Imuran, 1800 mg Calcium w/ Vitamin D, 25 mg Prilosec, Iron pill 2x daily, albuterol inhaler, 50 mg visteral, 500/5 Vicoden, 25 mg Phenergan, Midrin, Imitrex