CVID + Neutophil, platelet, and occasional red blood cell problems
I have never posted before. I was diagnosed a year ago with CVID which I can deal with because I am on IVIG, but I have neutrophil and platelet problems that no doctors have apparently seen before.
I get Neulasta shots to make neutrophils (white blood cells) every 3 weeks even though I don't have cancer, and that make me sick for about a week after treatment. I will go to 32,000 neutrophils after treatment and in three weeks I will only have 500 left. When my Neutrophil count goes up the platelets go down and when they are higher the neutrophils are low.
I saw a Professor at National Jewish Health in Denver who has been in practice about 40 years and he has never seen a case before like mine,
I have the autoimmune disease and the mystery blood cellular disease, so I am wondering if anyone else has blood counts that go up and down like the stock market.
Thanks, and blessings to all who deal with this daily as I do.
Re: CVID + Neutophil, platelet, and occasional red blood cell problems
I have the same thing going on but at least they're giving you the neulasta. In my opinion, these are lupus symptoms but your labs won't convert to positive for a long time. Also RA symptoms but it doesn't sound like you have the joint stuff going on?? Lupus will attack your blood and internal organs. You need to go to a GOOD rheumatologist and start getting the lupus meds you need. A good rheumy will diagnose you by symptoms and not wait for your labs to convert. Good luck, sweetie, and please keeps posted.