Small cell vasculitis and epidermis demostosis

[cartwheels]

Back in November last year,I got covered in a rash which was awful . Treatment initially was antibiotics and suspect strep infection. And then as it kept reappearing and visits to dermatology put down as vasculitis caused by covid vaccine of which I still don't really buy into. Here we are 8 months later and although much less severe and now on daily antihistamines and when needed oral steroids it is still present. I'm actually wondering if it's more to do with my Cll ? As the outbreaks I think look like epidermis demostosis and that's a condition which is known for cll patients. My hospital has been all but useless the dermatologist won't see me again as I questioned his dx of vasculitis caused by covid vaccine,my doctor is in some agreement with me but doesn't want to step on toes and my CLL consultant is of the opinion it's a problem for dermatology. My numbers are up but again he is not concerned and I'm left miserable by outbreaks of acne like sores on face ,chest ,back and lower legs.My point is maybe this is all down to my cll and they are missing the point because of the dermatologist DX of vasculitis caused by covid vaccine. Not pretty but here are a few pictures

All thoughts appreciated

[cartwheels]

Lower leg

Picture

[Angie4now]

Good day Cartwell,

I’m on W&W and started experiencing lesions on various part of my body about 5 years ago, nothing major, at least I didn’t think so.It started with a couple they would turn into lesions, scratches or pimple like and eventually dry out & resolve.

About two years ago I was under so much stress with remote work, I started getting the lesions, scratches more than usual. Some would start out like pus pimples and turn purple like and this time they were taking much longer to resolve.

June of 2021, I got a biopsy done by Dr. Larisa Gaskin, a cancer specialist @ Columbia Presbyterian in NYC and the biopsy was reviewed and read by pathologist Dr. Cynthia Magro.I was diagnosed with CD8 positive type B Lymphomatoid Papulosis (LyP)with some overlapping features with pityriasis lichenoides varioliformis ACUTA. I was prescribed Methotrexate10MG along with Folic Acid & Triamcinolone Acetonide cream which didn’t help.

After four weeks of taking the methotrexate I stopped, because I developed a rash all over my body, including face & scalp I went back to see the doctor and was instructed to stop the MTX and find a Dermatologist in my area and do light box therapy. The rash was itchy and it stung. The light therapy treatment didn’t help. The rash was so bad I literally wanted to take a bottle of pills and sleep permanently.

I was up all night on google & stumbled on a support group on FB for LyP, I went through every single post and discovered that some people were prescribed Valtrex. I ended up seeking a second opinion with a skin cancer specialist at Sloan Kettering and had the new doctor prescribe me Valtrex, my current doctor stated that Valtrex is not a treatment for LyP. I was desperate and willing to try anything. Also, to reduce my stress level I decided to retire and concentrate on my health. I took the Valtrex & eventually my rash resolved, it took months. However, it never completely went away I still get some on my body and it eventually dries out & resolve. Presently I have some and they are in the drying stage and some will pop up someplace else on my body, but not as bad as before.

Recently, I saw Dr. Gaskin, & I informed her that I have been taking Valetrix sometimes when I feel as I’m hiving, once again she said it’s not the treatment for LyP.

My CLL specialist doesn’t think my skin issue is related to my CLL.

Best,

Angie

Some photos of my rash

[cartwheels in reply to Angie4now]

Wow Angie, and thank you so much for replying,I feel I may have hit a eurek moment your spots are identical to mine and like you I have had them all over they crust up and move on . Steroids clear them but only for a short time then they start reappearing. I have writing down all of what you have said and I'm seeing my dermatologist in 4 weeks. Also valtrex I believe is like aciclovir and I have box's of that at home now .. I stopped taking that 6 months ago as I wondered if that could be a trigger but obviously not ,so will start with them straight away nothing to lose. This has been worse then my CLL and has caused me like you immense stress how you coped for 5 years god only knows 💪 I really can't thank you enough for your post. It might be another false dawn but the resemblance is spot on as are your symptoms.

Many thanks I will keep you updated

Jason

[LeoPa]

There is a condition called hydradenitis suppurativa. Somewhat similar to what you are describing.