This is the most pred I've been on outside the hospital. I'm struggling most because my pulm. doesn't think that my lungs appear to be improving, she just bumped me from 20mgs which I've been on since my bronch. to the 60 because of the SOB and haziness they seem to be finding in my x-rays. I don't sleep well on this dosage, but I can breathe. I'm really tired, but super anxious on this much pred. I get to drop down in a few more days and try the 40 mgs again. But at that time I'm looking at another boost of Imuran, which happens to wreak havoc on my stomach.
I have a book called The Lupus Book Third Ed. I have found more info there about
lung involved lupus issues than anywhere else. I have read through a couple other books as well. Unfortunately the info I have found it not exactly what I would call the best news. I still think I choose not to really believe it yet. According to the sources, I am falling under very rare circumstances.
According to my sources Lupus Pneumonitis is only found in 1-9% of all lupus patients. Apparently with high-dose steroids and an immunosuppresant or chemo. drug it is reversible. Unfortunately it also says about
50% of these patients die within months, usually due to a delay in dxs.
As far as the Pulmonary Hemorrhage, less than 1% of lupus patients sustain this condition. This is a very rare, dangerous manifestation of lupus. Although up to 10% of deaths from all forms of active lupus are associated with such an event. This usually hits early in the course of the disease. It says pulm hemorrhage is usually fatal, but patients may be saved by aggressive quick treatments that involve high-dose steroids and a specific chemo. drug called cyclophosphamide.
I'm wondering since the latter of the two seems to be more serious if I should take my sources to the pulm. and rheumy and point out that it specifies that I should be on the chemo. drug instead of the immunosuppresant.
What do you guys think? I just feel so naive and clueless about
all of this. I feel like I'm not digging deep enough for info, but I'm not finding more. Is it just me or is this really scary information?
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