As far as I can tell, I have had HD since Christmas 2011, when I was 61 years old. It worsened in 2012, but my dermatologist (#1) resisted testing for/exploring autoimmunity (my younger brother died from complications related to JRA in 2009 so I thought there might be a link). Dermatologist #2 did all the blood tests, which came up negative. FInally Dermatologist #1 agreed to send me for allergy testing on March 3 of 2013, and that dermatologist, #3, diagnosed and treated HD. At that point I was losing my mind with itch and skin pain which I described as a volcano erupting from the inside. I have been gluten and iodine free since then and steadily improving, except for some local itching. I had help with Dapsone for a few blissful weeks, but then my blood levels went haywire. Luckily my blood was tested often on Dapsone and demonstrated odd values for RBC, platelets, etc.. Early June I had an ultrasound, chest x-ray and soon after, a biopsy on a large lymph node. I was diagnosed with NH Lymphoma on June 12, 2013, and will begin treatment (not sure yet what it will be) today. Obviously this is not the course of disease I had bargained for, but I am on the road to accepting it now. My only question is: has anyone out there had a similar journey? Has anyone had chemotherapy for HD alone? For Lymphoma? Other therapies? I hope someone has had a similar experience or can offer some comparative stories.
Thank you for listening.
Anyone else not impressed with NHS treatment of Dermatitis Herpetiformis diagnosis?
Anyone else confused??
will any private hospital test for cd without a gp referral?
How do you convince adult children to get tested for CD?
