(Since it is now December and I am finally sitting down to write all of this down, I am pretty much just cutting and pasting from my facebook page for these updates until I get caught up. I hope to add clinic appointments and misc. items as they occur from now on.)
So this is probably the last one I will have to cut and paste from my facebook wall. It is only a few days old. Here is the update on the last clinic appointment.
BP was the best it has been 105/65. Creatinine is normal now. He still has too much protein in the urine. We are doing some major medication changes now. He can stop the water pill (HCTZ) and the Prevacid (will trial him off for a few days to see if it can really be stopped). The prednisone is down to 30mg a day. His Lisinopril is now doubled to 20mg a day. He will be started on CellCept. This is a med that is usually used for transplant patients to help prevent rejection of the organ. However, studies have shown that in 25-30% of patients with IgA Nephritis it works. I am still investigating it, but so far he still is spilling too much protein and if there is a chance this may help, then we are going to try it. He will be on it for about three months to see if he is in the 25-30%. Prayers and keeping fingers crossed. Also, he now has high cholesterol so he will be started on Zocor now too. Overall...not a horribly bad update, but could of done without the cholesterol news! At least his kidneys arent getting worse!
Update: The day after his clinic appointment, his doc called to say that there is less protein in the urine! Praise the Lord! Is it the fish oil working?? No clue, but maybe it is! The studies say 3000-4000mg of fish oil a day is recommended. I only give him 1 tsp which is about 1200mg. I think it may be helping, but that is just my opinion. Of course now that we have started the CellCept we may not know if it is that med or the fish oil, but thats ok...as long as he continues to improve!
I also have been noticing that his face is getting fuller. This is a common side effect of Prednisone use. I got the same side effect when I was on it as a child for rheumatoid arthritis. "Cushing syndrome" is it called. I pray Jacob doesnt get teased like I did. I am an adult and still cringe when I think of the teasing I got because of my "moonface". So far he has not mentioned being teased. I have not mentioned his face to him and do not plan on it. Maybe he doesnt notice?? He is very sensitive to things. He misperceives what we are telling him and thinks we are mad or yelling at him sometimes so I am not going to add this to it just for him to think we are teasing him! No thank you!
Prednisone 30mg every morning
Zocor 10mg every evening
Lisinopril 20mg every night.
Fish oil 1 tsp every evening
Cellcept 500mg every morning and every night