Hi all, it's been awhile...I've been out enjoying life since hitting remission and getting fully vaccinated (we still have enough restrictions here in Germany that it feels relatively safe out there).
I've read some literature and I understand that skin lesions are fairly common in CLL patients, but I've got a funny case: I seem to have developed moderate-to-severe psoriasis (I think) all over my arms and legs since treatment ended. It's mostly type 2 (guttate psoriasis) but it's not going away! I've seen my specialist and a dermatologist, and I'm not getting any satisfying answers or treatment. I've been given steroid and other creams, but they don't do much for it, and it's only getting worse. I've cut out red wine (which was a definite trigger) but can't figure out what else to do. Honestly, this is becoming harder to live with than CLL was for me during W&W, and the attitude over here seems to be "oh well." I'd really love any advice or kinship you can share.
I've had a biopsy of one of the patches and we're waiting for results, but I've also just freaked myself out on Dr. Google reading about parapsoriasis!
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jijic
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Try a carnivore diet for 5 days and keep rubbing it with extra virgin coconut oil. That is for 5 days you can eat only meat and eggs. I intentionally leave out All dairy products because dairy proteins are known to trigger skin conditions. See if this has any effect after 5 days. It is definitely not an easy thing to do for most people because it is very restrictive but on the other hand you do not need to be hungry. I am in the middle of one such 5-day course myself and the more often I do it the easier it gets. In case you do it and it helps please do not forget to share.
I have experienced Petechiae and occasionally mildly itchy skin and plaque psoriasis since 2006, but Ibrutinib really made the rash strongly itchy.
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Over the years I've had many biopsies; dermatologists and pathologists postulated Psoriasis, Eczema, drug reactions, and more recently CTCL or Mycosis Fungoides. My CLL expert doctor thinks that my refractory HHV6a infection is the cause.
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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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Our archives has over 850 replies that mention skin issues and CLL:
My most successful treatment is 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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I obtained a home unit in December 2020, it's 1.8 meters / 6 ft high with 8 special fluorescent bulbs see:
The psoriasis & seborrheic keratosis is in full remission and I only need 1 treatment per week - a total of 8.5 minutes exposure to keep it under complete control
Avoid dr Google.. too confusing.I also suggest more dietary adjustments, temporary for crisis, and longer term if you find it helps..
Empathy, as skin problems really kicked off during treatment and I’d forgotten how my families flaky skin issues were/are mostly resolved with extract of tar oil shampoos and suchlike.. ones the medical profession are loathe to get involved with, since the mode of action is unclear.
Previously I discovered egg allergy in middle age through an exclusion diet.
My focus then, was as now to lower inflammation.. egg in my diet must have done me great harm.
You might try reducing sugar, reducing carbohydrates, avoiding dairy, increasing low-inflammatory fats: more saturated fats, more fish oils, less seed oil.. the balance of fats in olive oil is more or less mirrored by pork and beef dripping.. both may contain a good amount of omega 3 fats.. Whereas chicken raised on a diet of grain likely has raised omega6.. the goal is to improve your omega 3 : 6 ratio.. we all tend to get rather a lot of omega 6.
Steroids can be necessary in a crisis, but they often treat mostly the symptom not the cause.
Do you know whether your vitamin D and A levels are in good order?
Do you ever eat liver? ..or take retinyl esters in a vitamin pill?
These are worth pondering.
[PS. it is also helpful for good replies to improve your profile on here to include country and approx age.. makes it easier for people to proffer relevant comment and avoid irrelevant comment.. Here, I might avoid UK specific items and age is relevant to vitamin A]
Good luck. I hope it eases very soon.
A friend with multiple skin issues, but not with CLL, eventually found she was vitamin A deficient.. correction of that resolved multiple issues.
Yes, sure is! ..though best to have it in your profile for quick access by those who reply.. Vitamin A — too much is a risk for everyone, but presets exceptional risk to the unborn.. this is no issue for the elderly.. but it just could be worth mentioning to you.
However, vitamin A deficiency, VAD, is a problem for anyone, and it is worth knowing that it does not likely get solved with beta carotene..
..best bet from a pill or diet, is retinyl esters.. in the diet the source is liver.
You can likely get a test in Germany for vitamin A level. We cannot here in UK, at least, it falls outside of health guidelines.. allegedly it is not economic to test for, as the regulator thinks it too rare.
Symptoms include poor night eyesight, skin issues and slow healing/recovery from viruses.. Complicated to spot the latter with our immune dysfunction.
My husband doesn't have CLL, but his psoriasis did not respond well to creams either, and he didn't like using the steroid cream. Light box treatment and modest vitamin D supplement (1000-2000 units) seem to help.
I have had psoriasis my whole life. Gotten much worse in past decade. Not treatment related.
I have a full body PUVA light machine at home. I used to use the nice one at the doctors office that looked like a time machine but then covid came.
It provides moderate help. Unfortunately, not making it go away. At least it makes it look less horrible.
If you have concerns about skin cancer just don't work your way up to a high dose. It isn't a tanning machine. It is a very narrow wavelength. Also, ask dermatology if nicotinamide supplement a consideration. I have pale skin so I don't go much further than a minute.
Machines expensive. In USA my insurance paid for it completely. Not sure about Germany.
I have never tried biologics before or during CLL. Many doctors have reservations. But surprisingly some doctors I talked to at NIH were not as bothered. You could discuss with your doctors.
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