Diagnosed with IGG4.
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I have been poked, scanned and everything else. Now my rheumatologist says I have IGg4. I was seeing an oncologist in regards to this, but he really couldn't nail it down, even after blood test after blood test. I have had several other issues that I think the igg4 has caused. Such as problems with my prostate. I know this is a relatively new disease, and few few doctors seem to know much about it. I'm just looking for some support groups to help me cope with this. I had severe weight loss (70) pounds without trying or wanting to in less than a year.
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candi40806 jon22347
Posted
scott51787 jon22347
Posted
Jon,
I was diagnosed with IGG4 back in April. I'm sorry you're going through this it's not fun to deal with. Unfortunately it is relatively new and doctors don't necessarily know what to do. For me it went after my kidneys and put me into stage 5 kidney disease. I have been on prednisone since April which has helped reverse some of the kidney issues and stopped the IGG4 for now. I would suggest you see a Hematologist who will prescribe the prednisone which helps put the IGG4 into remission for the short term so it will not continue to effect your prostate. But prednisone has many side effects that are nasty to deal with. I would also suggest asking the Hematologist about Rituxan. It's a chemo that my hematologist suggested that has really good results with IGG4 from what I've been reading up on (google "IGG4+Rituxan"
. I'm about to start treatments with it myself if I can get my insurance company to allow it. The Rituxan should put the IGG4 into a longer state of remission so I can stop the use of the prednisone and eliminate the weird side effects. Hope this helps and I wish you the best of luck!