Red spots all over my body.

[Angie4now]

I am on watch & wait and have been experiencing fatigue & I started getting spots on different parts of my body about 3 years ago. It started with a couple & they would turn like scratches and dry out & disappear. Couple of weeks ago I started getting them all over my body, lots of them & they itch. They start out like pus pimples and turn purple like and don’t disappear.

Today I got my biopsy results and I don’t remember a word the doctor said, except the spots might take years to go away.

My diagnosis is CD8 positive type B Lymphomatoid papulosis with some overlapping features with pityriasis lichenoides varioliformis ACUTA.

The doctor prescribed Methotrexate 2.5MG once a week 4 tablets total 17 tablets and folic acid 1MG 30 tablets once a day except on the day I take the Methotrexate.

Please advice if anyone has dealt with this condition & what has been your experience? Thank you

Best,

Angie

[SofiaDeo]

Check out other HealthUnlocked forums to see if there are any for those specific diagnoses, plus maybe the GARD and NORD websites. They may have links to Facebook, or other support groups.

[Angie4now in reply to SofiaDeo]

Hi Sofia, I am confused! I thought I was on the CLL forum.

[JigFettler Volunteer]

Sounds complex. But... have these lesions been swabbed for bacterial infection? Staphylococcal impetigo can behave like this.

Jig

[Grembold in reply to JigFettler]

When you say red spots do you me red bumps or red patches of skin; if the latter this is common in CLL , it occurs when your platelets are low allowing blood to seep

[Angie4now in reply to Grembold]

Hi Grembold, I guess red bumps.

Red bumps

[JigFettler Volunteer in reply to Angie4now]

Check for staphylococcal infection. Scratching can spread it. Easy cure.Family Doc chat recommended!

Jig

[Angie4now in reply to JigFettler]

Hi Jig, I went to a cancer skin doctor that I have been seeing since my CLL diagnosis & she did a biopsy & that was the diagnosis she gave me. I thought being that this is the CLL forum someone might have experienced some skin condition. I guess not. Thanks for you suggesting.

[JigFettler Volunteer in reply to Angie4now]

No harm asking. Impetigo could look different in immune irregularity like what all have to varying degrees. Or indeed a another infective process.

Useful to adopt a "wide angle" view on stuff that comes our way.

Jig

[Angie4now in reply to JigFettler]

Your right! Thank you

[Hotrods4me]

I have had these patches appear on me and at one time they were little red spots but they did go away now I have patches on both arms and I was told that it's called petitia, I'm sure that is spelled wrong but anyway that is they say blood vessels breaking under the skin and then they turn dark and in my case they're there for a long time and as they're starting to go away then more pop up and take their place. Recently I was able to get into MD Anderson and was told that this is a side effect of imbruvica. I'm taking nothing for it and I'll see what happens as far as if they go away or not.

[Angie4now in reply to Hotrods4me]

Thanks Hotrods, & good luck.

[pragnar]

For the last 8 years I have been getting all sorts of skin rashes. My skin was reacting even before chemo and now on Acalabrutininb. I saw several doctors including dermatologist and nobody has any good answer. I just had several rashes come up two weeks ago along with burning sensation inside my body. Interesting after my IVIG therapy burning stopped and rashes started to heal. Keep searching and experimenting and hopefully you get some answers. Those ones that you described as pussing and purple I get them and they can be extremely itchy.

[Angie4now in reply to pragnar]

Hi Pragnar, yes they do get itchy! My doctor put me on Methotrexate 10MG for one month.

Thanks

[lankisterguy Volunteer]

Hi Angie4now,-

I understand your confusion. I was diagnosed with CLL in 2008, but have had continuing skin issues also.

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An expert skin pathologist believes I also have a skin complication that falls in the broad category of CTCL (Cutaneous T-Cell Lymphoma) which exhibits odd CD-8 behaviour. See: nature.com/articles/s41590-..., but it is known to be very difficult to diagnose and treat, and can take years to develop into either Mycosis Fungoides or Sézary syndrome. see: clfoundation.org/

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But many CLL patients also have odd skin issues see:

Our archives has over 850 replies that mention skin issues and CLL:

healthunlocked.com/cllsuppo...

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The NIH has several papers suggesting that CLL itself leads to skin issues, as noted here:

ncbi.nlm.nih.gov/pubmed/174...

SNIP: "Cutaneous lesions occur in up to 25% of patients with chronic lymphocytic leukemia (CLL). These can be caused by either cutaneous seeding by leukemic cells (leukemia cutis, LC) and other malignant diseases or nonmalignant disorders. Skin infiltration with B-lymphocyte CLL manifests as solitary, grouped, or generalized papules, plaques, nodules, or large tumors.....The most common secondary cutaneous changes seen in CLL are those of infectious or hemorrhagic origin. Other secondary lesions present as vasculitis, purpura, generalized pruritus, exfoliative erythroderma, and paraneoplastic pemphigus. An exaggerated reaction to an insect bite and insect bite-like reactions have been also observed".

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I suggest you have a good cancer oriented dermatologist do a full body inspection of your skin every 6 months (we get skin cancer at 5x to 8x more often than non-CLL people- and the only way to detect it early is get an expert examination) and helping treat your sores will be part of that care.

-

Len

[Angie4now]

Thanks Len, I will check out the websites.

Best,

Angie

[KirbyBH]

I am W&W 15 years and have had this problem with very itching bite like sores. I read a report from Israel saying it could be due to CLL however non of the CLL doctors I have seen think it is. the only Dr who thought it could be from CLL was my dermatologist. She did a biopsy and the results was inconclusive. I was breaking out about every couple of months. Lately I have not had a breakout for 6 months and just ended up with a bunch . They look more like bites this time and have hard centers and become scabs on top. They do itch but seem not to be so bad this time. Not sure what to make of this as I am sure you are in the same situation. Hope you find some answers.

[Angie4now in reply to KirbyBH]

Hi Kirby,My dermatologist spoke to my CLL doctor and prescribe Methotrexate 10MG for one month. Did your doctor ever prescribe anything. Thanks

[KirbyBH]

Just RX for the itching. I don't think I would want to take Methotrexate as this seems to clear up on it's own but thanks for the info.

[Angie4now]

I panicked & started taking it. I totally understand I am not a medication person. I hope you don’t mind I included a pictures. Thanks

Spots

[Gigi246810]

I have those I just got diagnosed with traces of Lymphomatoid Papulosis and I’m still waiting on the rest of my biopsy results I was in hospital for 10 days and they finally biopsy me, at first they thought it was MRSA then sweet syndrome then shingles/chickenpox they did all kinds of blood work. Finally they did the biopsy. It is real scary? How are you coping have you found other people with it? I hear it is rare?