Haemosiderin Staining Lower legs

[Drago1941]

I have a problem with haemosiderin staining in my lower right leg. Blood work shows a normal INR and APTT range and the CBC & Auto differential is normal. Urine sample showed a normal result. My GP thinks this may not be a vascular problem, but that there may be a possibility of this discolouration being a side-effect of Acalabrutinib which I have been on for three years with great success. We're waiting for the oncologist to respond to this possibility and the result of an ultrasound, but I'm wondering if anyone else from HealthUnlocked has this issue with their lower legs? See the attached picture.

[lankisterguy Volunteer]

Hi Drago1941,

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I've often shared my 17 year experience with skin issues on my arms and legs that look somewhat like yours. Here is my long explanation once more:

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I have had a rash on my legs, arms and torso (mostly small light red dots connected in a web pattern –most days no itch or discomfort) since 2006 before my CLL diagnosis in 2008.

Now in 2023 and on Calquence / Acalabrutinib my skin is very thin and most contact with branches or furniture corners will cause bleeding.

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Each of the 6 times I was treated for my CLL it got visibly worse, but Ibrutinib made it much worse- angry red & itchy.

- I also have lots of seborrheic keratosis that seem to wax and wane along with the red dots and rashes. Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and even CTCL or Mycosis Fungoides.

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The common result from expert pathologists that ran flow cytometry on the biopsy, was finding many T-cells and CLL cells in a specific layer of my skin. But the puzzle is why they are there.

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My most successful treatment was Photo therapy (lightbox treatment with UVB rays 3X per week- similar to a stand up tanning bed, but with medical precision on light frequency and duration).

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In winter - dry cold weather, if it becomes itchy and bothersome, I use Triamcinolone Acetonide (prescription steroid cream) for 2-3 days then switch to a good moisturizer like CeraVe until the rash is well controlled.

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A 2016 diagnosis by a research pathologist eliminated CTCL and its cousins, but attributed it to T-cell Dyscrasia. ncbi.nlm.nih.gov/pubmed/176...

My CLL expert doctor believes that it is caused by a HHV-6a infection (roseola infantum or exanthem subitum) which we discovered in 2012 but like most of the HHV viruses is not curable and stays dormant in our cells until the immune system declines and it re-emerges. en.wikipedia.org/wiki/Herpe... ref: HHV 3 is Chickenpox & Shingles, HHV 4 is EBV & Mononucleosis.

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Our archives has over 950 postings 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.

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Len

[country76 in reply to lankisterguy]

Thank you for posting. I have had spots on my lower legs since taking Ibrutinib. First they were like red small spots I figured Petichia. I am now on Alacabrutinib and the areas on my legs are mostly brown that are together looking like a tan. I still a few red spots. They don't itch.

[Drago1941 in reply to country76]

Hello country76,

Thanks. Are your legs swollen?

[country76 in reply to Drago1941]

When I took Ibrutinib they were. Now that I take Alacabrutinb not as often.

[JerrysGirl3 in reply to lankisterguy]

I am not on any CLL meds since Aug 2022 and I absolutely go to my dermatologist twice a year minimum. I feel like this started, as I'm just low thinking about it...I have had warts on two fingers that my derma was working on. Slowly. They never went away but became manageable. I had to see his assistant as he's been out sick and she froze them time and time again the same day! 3X using the cryotherapy. I told her I had leukemia. I remember thinking my body was not happy while she was freezing them (didn't have the problem when my beloved dermatologist was working on it slowly 1 freeze a visit ) and I was woozy when I got up and barely made the drive home😳😳😳😳. I wonder if she activated something in my body!!! Oh my God!!!! I have to now look at the calendar to see when I saw her and when rash started. I've kept a running daily diary of BP since I had started cll meds (7/2022), even when I stopped. And notated anything of consequence that happened if something seemed off. 😳😳😁. I bet it was after I saw her that it started. Your post just jogged my memory. I had forgotten. Thank you Neal. Will look after I take splinter out (see prior post )

[LeoPa]

My mother-in-law's legs looks exactly the same but she has no CLL. How are your inflammation levels? CRP? How are you on the front of blood sugar control and insulin resistance? Much weight lose?

[Drago1941 in reply to LeoPa]

Hello LeoPa,

I've had no blood work done to reply to your questions about inflammation levels or CRP. I'm not diabetic and weight has been normal with no loss. My opinion is that it may be one of the vascular diseases like Chronic Venous Insufficiency (CVI), but testing is needed to determine whether this is true. CVI develops when vein valves are damaged and weak and stop working properly. Blood flows down into the legs instead of returning up to the heart. The blood pools, and veins begin to bulge and leak, causing leg discoloration and other symptoms.

[blowinginthewind]

I have a patch of skin on the top of one of my feet - I didnt know it had a name. It varies in colour somewhat over time - sometimes bluer, sometimes more purple. Nobody seems to be very bothered about it, and my feet don't hurt. Was it related to CLL? Sadly the hospital I was in failed to notice I had CLL!

Liz in UK

[MrMidnight]

I noticed a brown stain on the top of both my feet near my toes a couple of years ago when I had just stated taking Venetoclax. The haematologist didn't know what it was but said it would not be from V because a skin reaction would have been less localised.

A dermatologist subsequently diagnosed it as haemosiderin staining but had no idea why I had it.

[Jemorgen]

hi - just catching up and saw your post. I had a suspicious (but benign ) looking thing removed from my lower leg and ended up with a stain very similar to yours. I was told also it was hemosiderin staining. It was in a perfect square where the mepore bandage had been. After 6 months it has faded considerably. My hemonc suggested next time I stop my a few days before such a procedure.

This photo was taken about 6 weeks after the growth was removed.