Dermatomyositis & similar skin conditions in CLL

[ThreeWs]

On a different forum a member of the CLL community, Eliot asked about patient experience with Dermatomyositis. Here was my reply to him and others with skin problems.

Hi Eliot,

The condition of Dermatomyositis and its diagnosis can be complex and you need assurance that your condition is in fact accurately assessed. This paper is just a caution for questioning diagnostic assessment.

onlinelibrary.wiley.com/doi...

From that starting point it is worth knowing that Dermatomyositis is in the minority camp of non-hemolytic autoimmune complications of CLL.

ncbi.nlm.nih.gov/pmc/articl... From the Introduction: "Dermatomyositis (DM) is an inflammatory myopathy affecting skin and skeletal muscle. The pathogenesis of DM is complex, comprising both immune and non-immune mechanisms."

Most autoimmunity in CLL is confined to AIHA (Autoimmune Hemolytic Anemia) and ITP & (Idiotype Thrombocytopenia Purpura). While I have no direct experience with Dermatomyositis or similar conditions the best understanding for what is causing your condition is from an academic center and preferable to attempting to find a patient-template to follow. Below are some potentially helpful articles for you and others with similar skin complications to formulate some good questions for your doctors in pursuing a path to therapy.

sciencedirect.com/science/a... Four dermatomyositis-specific autoantibodies ...

tandfonline.com/doi/abs/10.... Large local reactions to mosquito bites ...

journals.plos.org/plosone/a... Origin of B-Cell Neoplasms in autoimmune disease.

Hope this helps.

WWW

[Eliotf]

Hi Wayne

I think I responded to this post. If i did great. If not here we go...

I am being treated for my CLL at the Phoenix Mayo by a CLL specialist (dr. Leis) very good dr. He sent me over to the dermatologist at the Scottsdale Mayo. Dr Hoss has been wonderful. She ran either a blood test or biopsy every time I came in (every other week). Most visits I was the floor show for the dermatology department. Blood tests came back negative due to high dose steroids. After 5 months of visits & being talked about at the doctors meetings (grand rounds) multiple times, the whole department diagnosed me. Yes it is very rare for this combination of CLL & Dermatomyositis(2-3 people in the USA), I am just one of the lucky ones. I went to UC Davis dermatology department to see dr. Maverakis who specializes in these kind of conditions. He saw me & immediately concurred with Mayo. I have all the stereotypical symptoms & signs. Both dermatology departments agree it is from the CLL. My CLL dr does not agree. After learn & contemplating I hope it is not from the CLL. Since I am writing this on my phone I will stop now. I am willing to continue at a future date when I am at a desktop computer

I hope your wife is doing well

Eliot