Herpetiformis Dermatitis and Non-Hodgkins Low Grade B-Cell Follicular Lymphoma

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.

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  • Hi Zlata

    I wonder if the Lymphoma site on HealthUnlocked would be of any help to you?

    lymphomaca.healthunlocked.c...

    Good luck with finding someone with similar experience.

  • Thank you. No replies on this site so I will try the other.

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