Aggravation with results

@kawhortny2023 Welcome to Mayo Clinic Connect! You have an autoinflammatory disorder which is different than an autoimmune disorder. You have some pus-filled blisters (yuck) and these blisters tend to stay in areas of skin folds. I included the url to some Mayo Clinic information:
https://www.mayoclinic.org/diseases-conditions/hidradenitis-suppurativa/symptoms-causes/syc-20352306
You may want to see a dermatologist rather than a rheumatologist.
And, yes, some doctors do act this way, that “it’s all in your head.” Do you think you would consider changing doctors, if you could?

I don't have HS, but instead have acne rosacea, which is mostly controlled with Metronidazole gel and diet/minimizing stress. I'm 70 and it recurred 5 years ago when I got back into woodworking. My skin is sensitive to chemicals such as overly processed foods, wood dust, getting glutened (celiac), and alcohol (darn). Dermatologists treat skin disorders; hopefully you can find an engaged doctor. Stress and diet have strong and under-researched effects on one's skin and on autoimmune disorders and diseases. You might consider keeping a log of what you eat and experience, just to see if there are things that make the HS worse. I had itchy patches of skin rashes for decades and dermatologist always said "its just dry skin". The rashes all went away within a few months of going gluten free; the gluten intolerance first had to morph into celiac.

@kawhortny2023 this seems to happen a lot with rheumatologists. I hope you can see a dermatologist who could also perhaps do a biopsy.

I have been told that healthy people have positive ANA's. I don't know about the RNP.

I think the main concern for rheumatologists is internal damage from an autoimmune disorder. They are, for instance, dealing with people who need kidney transplants. If internal damage is a possibility for a patient, rheumatology tends to follow up annually or twice a year.

I have a long time diagnosis of systemic lupus, by blood test and biopsy, as well as very high antibodies for scleroderma. I have had symptoms for decades. I still ran into a dismissive rheumatologist , even with ANA of 1:5120 and anti-centromere > 8 and some other positives, I switched to a different one who is following me twice a year. Hope you find doctors who are sympathetic.

Thank you to all who replied to me. I should have said , I do have a dermatologist, she's the one who diagnosed me with HS. I'm also in a group, and have asked if it's normal to feel the way I do, when getting a flare , and the people who had autoimmune disorders and HS , related to my symptoms.
Wow, @windyshores , those were quite some positive tests and to still be looked at and dismissed, I'm sorry. So , you made me have an ah ha moment, I guess I never thought about the severity of the disorders, and the logical order of things. Even on the beginning stagess of a disorder, i wouldnt be too much of a concern in her eyes. I will stay diligent with tracking any symptoms and try to find some answers along the way. Thank you 🙂

@kawhortny2023 just to be clear, I have seen 3 rheumatologists over the years (first one retired) and only felt dismissed by one, who had not known me for awhile. I do have a systemic lupus diagnosis. I have been sick for days after being in the sun. I can no longer take Plaquenil or steroids so not much they can do. I don't go see a doctor when I am sick like this anymore!

The main thing remains: is there any organ damage? My kidneys suddenly got worse last fall but it does not seem to be autoimmune. That is the kind of thing that sends me back to the rheumy! And they do a check in every 6 months.

If you are dismissed, I hope you find a doctor who doesn't do that!

I relate. It was since my early 20’s until about 5 years ago. Even then, my doctor did NOT do the ANA for Lupus but, rather, psoriatic arthritis (I had blistering, horrible itching rashes on both legs for years). The test came back Positive for Hashimoto’s (of which we were already treating) and SLE.

I’m sticking with good old prednisone to help the outcome of the flare that I can tell is coming on and often do nothing and the issue goes away so I don’t need prednisone all the time. After all, every medical professional told me, with no test but just a glance to the face and would smile and say “You don’t have Lupus.” .

I’m sorry you’re going through this. It takes trying out another doctor, or becoming more aggressively proactive for yourself. And, I wish I knew how they were just pulling the wool over my eyes. It was easier than researching for a patient.

Best of luck. Please know that I’m 77 and I am always questioned by other than my own doctor “do you see a special doctor?”, to which I reply that every doctor all my life just treated my symptoms. Nobody knew what the plethora of issues were and, yes, I often got the intense feeling that I was being ridiculed. I changed several doctors and am happy with my doctor of about 12 years.

Have faith. You are NOT alone in your feelings.

Love,
Sharin

@sharing what test did you have that definitively showed SLE? Anti-DNA?

My stepfather has both HS and psoriasis. I am so sorry you are dealing with the HS. His has landed him in the hospital with sepsis a couple times. He has to pretty much stay on antibiotics. I don't think he's tried any monoclonal antibody or other biologic treatments. Ilumya is one that may treat both conditions.

It was the ANA test, aka the antinuclear antibody test. It cannot be used to diagnose any specific autoimmune diseases but, in my case (I’d been begging for this test while everyone told me nothing was wrong with me) it definitively showed Hashimoto’s, which I knew I had, but instead of psoriatic arthritis (my horrible red, blistering, flaking rashes on lower legs) it PROVED I had SLE!

I have to tell everyone that SLE may not show up but you may have it. There are more and more autoimmune issues today that are known about than 50+ years ago but….still, some doctors are stubborn to really LISTEN to their patient. I hope you can open his or her mind.

BTW, I would highly encourage you to find a doctor you can communicate with and who has empathy. We kiss a lot of frogs, first.

Love to you,
Sharing

@sharing thanks, I have good doctors and was diagnosed with lupus 20+ years ago.. However, an ANA by itself doesn't show any specific autoimmune disorder, as you said, and in fact does not even show the presence of any autoimmune disorder, since some healthy people have positive ANA's. So I am curious how you got your diagnosis of lupus or of Hashimoto's.