First Post by Roger
The wife just turned me on to this site today! Have been looking through some of the posts! Seems like there are an awful lot of different drugs being prescribed for Lupus out there! But I do not see Prednisone mentioned as often as I thought I would! For me, it has been a lifesaver! But my situation is a little more complicated! Was hospitalized in 2002 for Pneumonia, but was diagnosed as severely diabetic, and as having Cold Agglutinin Hemolitic Anemia! I got very lucky, and had an old country doctor that recognized the symptoms, and got the right specialists involved just in time! Being a Vietnam Vet, the Diabetes got me into the VA medical system under the agent orange protocol in 2003! Right out of the gate, the primary doc asigned to me suspected Lupus to also be involved! She just did not bother to tell me she was testing for it before she resigned, nor did my second doc before she resigned! To make a much too long story short, I did not get the Lupus diagnosis until July of 2009! Seems, out of 5 ANA tests, number 5 was negative! My SMAB and Mitachondrial Antibody tests had been 100 times too high all along! I have the head of Rhumatology working with me at the local VA hospital! Test 6 (his)was positive! So at last I had a name to describe every symptom I am reading about here that I have been living with! Just went through a confirmation in the last 60 days! Since I was already on prednisone, he just added hydroxychloroquine! Last year, the Cold Agglutinin Disease started getting out of control, so my hemologist, and rheumatologist ran me through a 4 week course of Rituxan! I got almost 9 months of remission with the Cold Agglutinin Disease, but only 2 weeks for the Lupus! And when the Lupus came back, it came back 10 times worse! Some Luppies seem to have luck with it, but not for me!
This year has been a series of major changes on the Lupus front! I now appear to have become severely sun sensitive! Found out the hard way while out Halibut fishing! Wound up back in the hospital with an HCT of 13 an an RBC of 1.75 within 72 hours! Had Pluerisy for the fist provable time! Seems the Lupus likes to go after the lining around the lungs and heart! Fevers of 102, and wouldn't you know it, the Cold Agglutinins see it as a Viral infection, and go right after the red cells! Before, all I had to do was avoid being cold, and people with viruses and bacterial infections! Gee, aren't we lucky? Feels like half a dozen fillet knives in your ribs! At that point they added 200mg of Azathioprine to my daily meds! Does not seem to be of help with the Lupus, but may have created a break with the cold Agglutinin Disease! Monthly CBC and blood workup is next week, and we hope to confirm that at least! The "flares" are happening about every other day! One or two days into one , one or two days with it reduced!
I am wondering if anyone else out there has the combination of the Cold Agglutinin Hemolitic Anemia and Lupus! With or without the Diabetes! Warm Agglutinins and Lupus are very common, but not the cold version!The heavy amounts of Prednisone will probably have you drug induced diabetic anyway! I have only been able to find 2 case studies on the combination. One in Oklahoma, and one in Helsinky! Both are at similar stages to myself, so do not help with any prognosis! And both were women! Although both caught the interest of my team when I made them aware! The combination is at least 300 million to 1, so everybody is guessing! Including me! Any ideas, I am open! There is a mountain of information about Lupus out there, and I spend hours researching! You all need to do the same for yourselves! Sounds like a lot of you are not getting the real help you need!
I also am trying to get this sun thing figured out! I have 4 or 5 sunscreens on hand, and have ordered UV 50 shirts and a hat! Does the denim in the jeans protect? What about shoes? I have been a hunter and fisher my whole life! With my business gone, that is all I really have left and am looking for viable solutions!
Thanks, and good luck to all! Roger