"What would be other explanation for failure of topical steroids? I guess an infection?"
That steroids are the *wrong* anti-inflammatory.
"Well, in that case its obviously some systemic infrction"
Nope, I doubt that. If it was an infection, it would be local; though it would be leaking cytokines out into circulation which produce systemic inflammation.
One thing is pretty certain: what you have is very rare.
"I heard that with folliculitis, cells get trapped in one of the skin layer and remain there after skin damage. so it looks like scar, but its trapped cells."
Ok, I'll keep that in mind.
"What would be other explanation for failure of topical steroids? I guess an infection?"
Correct. Anti-inflammatories are not antimicrobial. (In fact, at really heavy doses, steroids are immune suppressants and as such they can end up letting an infection run wild.)
'Is it of any significance that the hyperpigmented "scars" blanche when i press on them? Only a tiny center of the scar doesn't blanche. '
I don't know. But if you are saying that it is so very curious that pigmentation can blanche? Then I agree with you there. How can pigment blanche?
Maybe the doc made an error in that finding. Maybe.
Maybe it is really spherocytes bunched up and clogged in micro blood vessels, with the hemoglobin mistaken as melanin? Just a thought.
Her late onset RA is probably not notable.
The failure of fhe steroids to show any benefit might convince some docs that the problem is not immune system mediated. I'd say they are wrong on that. There are various pathways of inflammation and steroids only inhibit/antagonize some, mainly IL-1 IIRC.
Let's try to tackle this one: why the back and arms? (outside and inside of arms?)
What is there that contacts? Laundry detergent? Protective gear at work? Mites or other insects? Sleeping on a bed of nails for meditation?
"acryllic/ceramic/ plaster dust. I also work with chemicals like monomer"
Let's assume regardless that it is a bad influence, unless/until proven otherwise.
Btw, pus is mostly dead neutrophils. They pretty much attack/engulf invaders such as bacteria, like a Pacman; they then put them into an internal compartment, and blast them with bleach. The neutrophils tirelessly do this work against invaders until they get spent and die. That's why it's so odd that they can form pus without an invader being present. Then again, they can also shoot out a net to entrap invaders, like a Spiderman. Immune cells can do many unlikely things.
"Conjuctivitis (3x) in 3 months."
Any triggers identified?
I'd keep a log from now on. ID'ing triggers can be very difficult sometimes.
Conjunctivitis = inflammation
I think I'm beginning to see a pattern :)
Joking aside, do you have a family history of inflammatory and/or autoimmune diseases? Or just call them medical oddities.
"I must say that Pustules, although present before vaccine - were aggravated after 2nd dose of Moderna vaccine. But as i say, they were present before it."
A vaccine activates the immune system and can aggravate existing problems. Be wary that often a first dose isn't so bad but the immune system trained on the first dose and can run amok dangerously on followup doses. Esp if an allergy develops - which involves IgE and is more powerful than a sensitivity.
(I know I'm throwing out a lot of terms, but they might come in very useful to you in the long run. After a steep learning curve. But you seem very capable in acquiring understanding, and I'm trying to save you a lot of time by providing signposts, rather than you discovering them independently.)
"I had Covid 3 months prior the onset of chronic symptoms. Could there be a connection?"
Yes. Any infection can activate the immune system generally. A rising tide of inflammation can lift all boats. But since not associated closely in time (3 mos) with you, the more likely effect is that the infection changed your immune system (which is why I'd mentioned post viral syndrome, or as branded lately to be Long COVID).
"(Even though this seems like a separate issue)"
Not separate. Also try to identify any recent triggers. Vaccines. Certain foods. GI upsets. Molds or bee stings, etc. Exercise or lack thereof.
"relation of lymphadenopaty with skin issues"
Well, I'd say that nodes can react to many things, so it's not specific enough to help us to zero in on anything.
You are very correct to have focused on 1st symptoms, so your thinking is good. I'll point out that nodes enlarged in >1 region is called 'generalized lymphadenopathy', which is a different thing than local. That indicates systemic inflammation, usually because signalling molecules such as cytokines are in the blood circulation. That yours are still tender after 1 yr tends very much to mean they are still reactive to signalling, rather than merely having residual fibrosis inside from some past immune battle. They are also not directly downstream from a site that is producing signalling.
If your docs went super gung ho, they could test for IL-6 and TNF and IL-1 and other inflammatory signalling molecules in the blood. I don't think that would help much clinically, though.
Btw, did you try topical corticosteroids on lesions?
"mild eosinophilia"
That I disregarded because eos can react to many conditions and in unexpected ways. So again it's nonspecific --- except e.g. in (unrelated to you) conditions such as Eosinophilic Esophagitis wherein they destroy GI tissue, and are found with a snip biopsy.
Since you mention eos, I'll mention mast cells, which are central to auto inflammatory (not auto immune) disorders. MCs might become relevant at some future point, of understanding. MCs reside in world facing tissues like skin.
"hereditary spherocytosis"
I think that specific history should be regarded as very important because it is an odd condition, and here you are with another odd health problem. In diagnosis of mystery cases, we should be using Occam's Razor - and start by thinking that both oddities are related, rather than figuring that you just are extremely unlucky to have two independent and rare conditions. Maybe three, if we add in the urinary tract.
Thinking out loud: what if an abnormality (maybe with spectin fibers) that causes malformed red blood cells also is somehow making your skin have openings that let normal bacteria in. E.g. if I nick myself shaving I might develop a small whitehead pimple.
Meanwhile, we still have to account for the pigmentation. So let's call that a fourth mystery. What's the mechanism there?
Docs generally just do pattern matching. They'd done that for you extensively, but you have no resolution. So the avenue we have left is this type of inductive thinking using logic. Like a Sherlock Holmes approach.
"All this time CR-P and ESR showed no inflammation."
That does not rule out all inflammatory conditions. But if one or both were very high, that would have been meaningful.
Regarding the question of whether a non-infection inflammatory condition can cause formation of pus, I looked and quickly found Hidradenitis suppurativa. You can look at photos and probably will say that doesn't look like you. However, tne important point is to know that such a pathophysiology exists, and you can very possibly have some similar but not identical condition mechanism going on.
Cancer is fairly much not the cause, because the suppuration comes and goes. But that episodic behavior does very much fit inflammatory conditions, and so you can try to figure out what possible triggers exist.
And here's a DDx: https://emedicine.medscape.com/article/1073117-differential
which interestingly does include Bartonella/Cat Scratch which you were tested for because of symptoms.
(Btw, your profile perhaps mistakenly says you are from Croatia, which is why I'd said "bok".)
Melanoma produces Melanonychia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3390039/
On the other hand, if the pus eruptions disappear? That probably argues against a skin cancer.
If it's not a cancer and it's not an infection, then that leaves immune system dysfunction --- sterile inflammation. An unrelated example of that is when women get a UTI, but there is no infection and therefore anti-inflammatories are what is needed.
"Peripheral blood smear shows lymphocites at 0,53 while CBC lymphocite count is 3,8-4,0"
That bit of lymphocytosis is probably reactive, not a malignancy. If it's not a reaction to a pathogen, and it's not a reaction to a cancer (which is different from when lymphocytes multiply out of control because they *are* cancerous), then what are they reacting to? Sometimes the immune system just runs amok. There is even something called "post viral syndrome" which is when the immune system runs amok, and that is not understood well at all.
Two things stand out to me:
- a post viral syndrome fits your history
- but pus/suppuration doesn't seem to fit, so that is the symptom I'd focus on if you research on your own. What fits with suppuration in the absence of any *detected* infection?
Bok, Karl.
"Does this indicate anything more serious like lymphoma?"
No, not the usual types like Hodgkins or CLL. But what about a Cutaneous T-Cell Lymphoma? Maybe. Or melanoma? Maybe.
Melanoma can create pus without any pathogen (bacteria, virus, parasite, or fungus) present. A melanoma can also stir up lots of lymphocytes (B and T cell.)
On the other hand, a Cutaneous T-Cell Lymphoma can be elusive to diagnose and take years - and you are experiencing a *mystery* condition for sure. Cutaneous T-Cell Lymphomas typically progress very slowly. They might not be easy to spot in a biopsy - but didn't the pathologist look for cancer cells in your biopsy?
I'd want to know if the increase in lymphocytes is from B-cells or T-cells, that knowledge might help. The fact that immunoglobulins are not high maybe tends to say that B-cells are not elevated (B cells aka plasma cells make the IGs).
T Cell Lymphomas and Melanoma are not my field, so I'm just guessing here. But if those two have been ruled out, then you'd want to then look at a DDx for each of them.
*Differential Diagnosis = DDx