Has anyone ever heard of Sweet's syndrome? 10 years ago I was diagnosed with Selective IgA deficiency but was basically told there was nothing I could do for it except for prevention of illness. Then 6 years ago I was pregnant and gave birth to a beautiful boy. My pregnancy changed everything. For 4 years, I was perfectly healthy. For the past year however, my health has been declining with more and more illnesses, joint pain (which was diagnosed as fibromyalgia)and now this Sweet's syndrome. The doctor says it is a reactive disorder to a problem with the immune system so she sent me to the immunologist who is now convinced I have CVID, not selective IgA and wants me to start on IVIG soon. This has really freaked me out. In 6 weeks, I went from having a disorder there was nothing I could do about to having CVID which requires transfusions and prophylactic antibiotics. The cost alone is beyond my comprehension. Even though I have employer based insurance which is really good, I will reach a lifetime maximum in nothing flat. I make too much money to qualify for Medicaid but not enough money to pay for treatments. What am I supposed to do? To make matters worse, the treatment for Sweet's syndrome is high levels of Prednisone for 3-4 months. I also have major depressive disorder with PTSD and the prednisone is wreaking havoc with my mood. My doctor has place me on 3 days of medical leave because I am just so depleted. I have no energy and want to do nothing. I have never felt this exhausted in my life. My doctor says it is the prednisone, but I'm really worried that I have become very depressed with the overwhelming amount of information that has come my way and with this syndrome. I feel so incredibly alone and empty. I do see a therapist and have family around, but my family is usually more a hindrance than a help. Is there anyone who might have any advice or suggestions? I just feel at wit's end.

I'm so sorry to hear of your struggle. I was just diagnosed with CVID and have significant joint pain, but i'm not far enough along in the process to have done anything about it yet. I have a consulatation at UVA in May. I have never heard of Sweet's disease.

However, I also suffer from depression. I'm on Lexapro for PTSD (hurricane katrina), and the constant sickness and fatigue only worsens the situation, and can become a vicious cycle. For me, the pain, infection, and fatigue are very overwhelming and upseting, which then gets me all worked up, which makes it more overwhelming, which stresses the body, and then it all becomes worse. A doctor I had several years ago gave me Xanax on an as-needed basis. When I would feel at my worst physically, the anti-anxiety effect of the medication would help me cope and keep it from getting worse. It would aid me in getting the complete rest i needed to recover and defend against illness, instead of the worry-ridden rest I was used to.

I'm sorry I can't help much with the pain - I'm trying to work through that myself. You know those times where everything hurts so much that you don't know what to do? The Xanax (there are many other types and brands you can talk to your Psych about) has helped me deal with that emotional pain, and made it slightly easier to cope.

Best of luck. You're welcome to email me at CVIDkatie@gmail.com if you want to talk.