Cutaneous T-cell Lymphoma anyone?

Posted by jacqincalifornia @jacqincalifornia, Sep 23 9:49pm

Hi good people - I have a nasty rash that both my allergy/immunology doctor and my dermatologist said looked like eczema or contact dermatitis. But after a punch biopsy the pathology report has identified "interface dermatitis." Differential diagnoses are autoimmune connective tissue, disease, medication reaction and viral infection. Fungal infection was ruled out per the path report. Labs the dermatologist ordered when the report posted have all come back negative.

In the six months since this flat, patchy rash started, it has spread extensively, BUT only in sunlight-protected skin surfaces. As much as it has taken over my skin under my clothes it has not crept outside of what my clothes cover. In my own research what has jumped out at me is the possibility of Cutaneous T-cell Lymphoma, because typically a CTCL rash is known to be limited to sun-protected areas.

I'm reading that in the earliest stages, a CTCL rash often mimics eczema, which is what my doctors initially thought it was. I'm also reading that early biopsies don't always clearly demonstrate CTCL, that often several biopsies over time are required before the unique pathological characteristics of CTCL become apparent from skin biopsy.

So, I'm starting to think about the best way to advocate for myself with my dermatologist (who performed the biopsy) for further investigation. These days I often find that when the initial round of labs are negative, it becomes the end of pursuing a more specific diagnosis. I'm also discovering in the medical literature that there seems to be some connection between CTCL and patients who are on Dupixent for atopic dermatitis - I've been on Dupixent for 3 years.

So I'm just wondering if any of you who have CTCL are willing to share how the diagnosis was made for you, how long it took, what your symptoms were, and how treatment has gone for you.

Thanks for any comments!

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minnesota10 | @minnesota10 | Sep 24 9:22am

Did I understand you correctly? It is only where you wear clothing not on the skin that is in the daylight.
If that is the case, I question if you have started using something 6 or 8 months ago that contains Chemicals you are sensitive to. This can include a dye as a lot of of them Container aluminum, A perfume or fresh scent. The perfumes And fresh scent We don’t know what’s in them unless you have a laboratory doing analysis of them. Because they are made at a foreign country and they will not tell us what they put in them. For this reason, question if it’s your laundry soap, if you use softener on your clothing
Fabric some of them are putting a lot of things in their fabrics these days. I would check your PJs you wear at night your underwear cotton only
And so on
Do a diary of your symptoms any new spots and spots looking better and itching soreness and so on
To see if there is a pattern that is showing it could also be a food
I wish you the best

jacqincalifornia | @jacqincalifornia | Sep 24 2:36pm

In reply to @minnesota10 "Did I understand you correctly? It is only where you wear clothing not on the skin..." + (show)

@minnesota10 Yes, the rash is only on skin that's protected from sunlight. We've ruled out my clothes and food as irritants - I use only hypo-allergenic detergent, no softener or dryer sheets, and I triple rinse my clothes - which are all cotton. And the pathology finding is interface dermatitis, not contact dermatitis which has different characteristics under the microscope. I've actually had biopsies of contact allergy reactions in the past, described in the path report as Spongiotic dermatitis with eosinophils.

Thank you for responding and sharing your ideas.

minnesota10 | @minnesota10 | Sep 25 8:41am

Sounds like you are doing a terrific job keeping chemicals and things out of your life. The one thing I noticed this dryer sheets I use dryer balls and I get them on Amazon last time once I found in town were wool and I did not want wool dryer balls. They do help to get my clothes, nice and soft,
Now this is gonna sound funny to you. I have my own home a nice small one. I have a softener and a home house filter for my water. A couple years ago, I needed to change a few things in the house water filter. Some of the filter filters had to be ordered and it took about three weeks. Those three weeks until the new filters came my body hurt so bad from the chemicals that is put in our water to make it safe. Once I got the filters back in 24 hours later, my skin started to feel better. So look at your water.
I use dove sensitive soap for showering no liquid. The doctor was adamant no liquid soap and he told me to use Dove. It all helps,
I’ve gone through this so I know what you are dealing with and I wish you the very best.

jacqincalifornia | @jacqincalifornia | Sep 25 2:45pm

In reply to @minnesota10 "Sounds like you are doing a terrific job keeping chemicals and things out of your life...." + (show)

@minnesota10 Thank you again for your thoughts. I've been using the AquaTrue reverse osmosis system for my water without any breaks.

minnesota10 | @minnesota10 | Sep 26 8:51am

In reply to @jacqincalifornia "@minnesota10 Thank you again for your thoughts. I've been using the AquaTrue reverse osmosis system for..." + (show)

@jacqincalifornia I understand what you are going through as I’ve had to deal with similar issues for years on many different items, And to be told, I was deliberately doing it. It was just because Modern technology wasn’t there but many years later it was there.
The only thing I could think of is to do a diary daily diary. In the diary, you write down things that you eat things that you do and see if there’s any connection with hand lotion foods, and so on..
I wish you the very best and your upcoming struggles

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