Anyone have Cutaneous T Cell Lymphoma?

Hello, new to these posts, groups and all of this information. I have had atopic dermatitis for 60 years and it has now evolved into something else that I am really suffering with. I have been to several dermatologists at the big hospitals around the Philadelphia area and they cannot diagnose my new condition however they have recently thrown out some new terms such as Cutaneous T cell lymphoma (CTCL). It has been a nightmare trying to get a true diagnosis as everyone knows, this is very hard to do. The doctors put labels on like Atypical Dermatitis or something that does not give you the answer or treatment you need.
This past winter my condition turned and went from my traditional atopic dermatitis (Eczema) to this new unknown condition that I don't have a name for but it has disabled me at time. When it was really bad, 90 percent of my body was covered in what they call Erythroderma (redness of the skin) but also was covered in lumps/hive like things over my back. I had uncontrollable shakes, night sweats, and severe sensitivity to anything touching my skin. I felt like I was having seizures at night it was so bad and my skin was burning, not itching like eczema gives you. The doctors gave me overdose amounts of prednisone (60/80)mg per day for over 3 months. It tore my system apart on the inside but did nothing, nothing for my bizarre skin condition.
I stopped taking and eating everything, it took weeks to taper off the prednisone but and so glad I am off of it. When I totally went on the lamb and ate a very bland diet, no coffee or anything, the lumps\hives went away after 4 - 6 weeks but cannot get rid of the Erythroderma, burning skin or skin sensitivity. I have been through it all my life with allergies, eczema, itching but am at wits end. Now I have a pre-cancerous patch on my arm about the size of a quarter that had been biopsied and told that it needs to be treated. my current doctor wants me to use a type of topical cream that will totally inflame the area and kill the cancer. That's all I need is to have my are totally inflamed for 6 - weeks. I'm tired of suffering and am glad to vent my frustrations.

@tataddyp , my son is awaiting a biopsy and struggling with getting a true diagnosis.

He has similar symptoms, he gets cold hands, chattering teeth, sweats and a full on weakness and looses all his strength. Writhing a few hours of these symptoms he then gets a red patch that covers the whole side of one buttocks cheek , he then gets hard tumours under the skin in one side of the buttocks.. the doctors keep prescribing antibiotics whilst waiting for a biopsy.

We spoke to our doctor as like you it’s a waiting game, she is adamant that he has Mycosis fungoides ( T-cell lymphoma. My son is only 31 so it’s a big worry as when we have researched the condition there doesn’t seem to be any real fix or cure??? It’s strange as it comes out every 3 months then goes away, but always the same place and the same symptoms.

Please can you tell me how long you had to wait for diagnosis.. and if it was the biopsy that confirmed the diagnosis as my son has had so many blood tests but nothing shows up abnormal in these???

Desperately trying veto understand this condition and if there are quicker ways for a full diagnosis.

Thanks for reading .

So I had a biopsy on a specific lesion which I could not see as it was on the back of my leg. I waited 10 days for the results. The dermatologist sent it out again to confirm. I think when I looked at the report 4 pathologist had seen the specimen. I then had to wait for a PET scan. Then about a week for the PET scan results. I first saw the dermatologist in February but only had a definitive answer at the beginning of May. This is not right but that is medicine in the US in 2023. Good luck with your son.

Looking for anyone who has this type of lymphoma, my 16 year old daughter was just diagnosed on Monday.
We have already been dealing with this for two years, only the lymphoma has only now presented itself.

Does anyone here have cutaneous t-cell lymphoma? I was just diagnosed with it last week.

Does anyone here have cutaneous t-cell lymphoma? I was just diagnosed with it last week.

I was diagnosed with Sezary Syndrome in January 2023. I live in Canada & to date I have received excellent care & attention. Started my treatment with Methotrexate & ECP, advanced to Chlorambucil, Brentuximab & most recently Mogamulizumab.
Too early to see significant results with the Moga but everything I read is positive.
This sites purpose should be to discuss symptoms, treatments & successes not complain about our health systems.