Does anyone have any experience of Evans syndrome? I have had "ITP" for 3 years, but in amongst all that have swollen lymph nodes, submandibular nodes and body scans revealed I have swollen lymph nodes throughout my body. I had biopsies and they were clear, and the doctors say the nodes are smaller than anything that they would be concerned about. I have had them for about 2 years. Had all the usual viral screens - negative.
Whilst I was having a bone marrow biopsy, and FNA in the gland, I developed severe neutropenia, and the doctors told me I have intermittent immune neutropenia.
I sometimes doubted my diagnosis of ITP because of the other stuff, going on, but I think I am so far down the track that I settled on ITP. I have recently transferred hospitals and am seeing a specialist in ITP. He has done loads more tests, and I am awaiting the results. So as I guess as is normal you start researching, and I read a link that although Evans syndrome appears to be destruction of red blood cells, and platlets it is extremely rare but it can destroy neutrophils and cause lymph nodes to swell?
I will obviously get the results from the doctors test, but has anyone on here ever heard of this presentation of Evans syndrome or experienced it?
I've got swollen lymph nodes too. Haven't quite ruled out lymphoma yet but I'm hopeful of getting to that point. I've also had autoimmune neutropenia at one point which lasted about six months. Mine is all associated with CVID so as Sandi says to check that out would be a good idea. Maybe your latest blood tests include that. It was when I had the neutropenia that the haemo tested IGs and they came back low. The blood results for IGs take at least a week to come back usually. Let us know.
Thanks for the replies, I have never heard of CVID, that does seem possible from what I have read.
I go through bouts of infections particulary ear infections, that always end in antibiotics. I have had concerns at the amount of antibiotics I have, as I can not seem to shift infections, which I put down to maybe bouts of low white cells neutropenia. Earlier in the year I had two rounds of antibiotics for ear infections and ended up on steroids to shift it.
I always thought until now that my ITP was one issue and the Immune Neutropenia was another, it seems logical that it's maybe all related and basically my body seems on the blink.
Delnstyle - I have not been diagnosed with anything other than ITP yet, I am awaiting more tests which might be to confirm CVID or this Evans Syndrome. If not I will certainly speak to the doctor about it.
Ann - Sorry to hear you haven't had lymphoma ruled out, that was also like me, I had / do get other symptoms that are signs of Lymphoma and one doctor I used to see, did talk of slow growing lymphoma and that it can / could take time to present. Although as time has past the latest doctor new hospital seemed more confident than others in stating he doesn't think so. So I think I am in this intermittent wax and wane periods of ITP & Immune Neutopenia, one thing is for sure it's a nuisance and I spend far to much time in hospital being tested.
The worst part of it, is no one other than people on here that have to live with it, seem to understand how frustrating this condition is. I get fed up of telling friends / colleagues why I am yo the hospital every four weeks, weekly or whatever over the last 3 years. Because I get on with my life as normal, and look normal - I think people think you make it up!
I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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I have Evans Syndrome with hemolytic anemia and ITP. Evans syndrome can be secondary to CVID and your symptoms sound similar to other people who have it. it seems to be more common in children to have neutropenia and ITP related to CVID. There is a pretty good Facebook group...Evans Syndrome Community, a mix of adults with it and parents of children who have it, it is a relatively small group.
I share your frustration about dealing with this stuff and trying to have a normal life as well.
John, ear infections have always been my main problem too. I now take an antibiotic (Septrin) daily which helps with that. I haven't had serious ear problems for a good while which is why it's been strange that that's just when the lymph nodes came up. Like you, I've been told by the latest doctor, a haem-onc consultant, that she doesn't think it's anything, but still she is talking to the radiologist and cytologist to decide whether to do more tests or not. I go back in two weeks to hear what they think.
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