Severe pain in the armpits and groin. Diagnosed after 7 years. Now new medications are being introduced.
- Hidradenitis suppurativa (HS) is a chronic inflammatory disease that affects both the skin and subcutaneous tissue. It is the most painful of all dermatoses. Diagnosis can take up to 7-8 years.
- The main symptoms include the formation of abscesses and large nodules/inflammatory infiltrates. As the disease progresses, irreversible skin lesions develop in the form of fistulas.
- New therapeutic options are primarily biologics. The first such drug registered in the EU was adalimumab, which is still not reimbursed in Poland. The drug program includes secukinumab, and dermatologists are also expecting reimbursement for bimekizumab.
- Biological treatment should be initiated early, when the disease is in the inflammatory stage. This can significantly limit its progression and protect the patient from developing permanent changes.
- Hidradenitis suppurativa (HS) is a chronic disease that affects both the skin and subcutaneous tissue - says Prof. Jacek Szepietowski , president of the Polish Dermatological Society, head of the Clinic of Dermatology, Venereology and Clinical Immunology at the 4th Military Clinical Hospital with Polyclinic of the Public Healthcare Center in Wrocław
The expert explains that HS is an inflammatory, recurrent disease with a very characteristic clinical picture and typical location. It primarily affects the armpits and inguinal fossa, and is also often found in the anogenital region, i.e., the anogenital region. It can also appear in other locations, including under the breasts or around the neck.
The main symptoms involve the formation of skin lesions – abscesses and large nodules/inflammatory infiltrates . As the disease progresses, irreversible skin lesions develop in the form of fistulas, also known as tunnels. The disease is accompanied by scarring, resulting in visible, drawn-in scars. In addition to the skin lesions, a large, unpleasant-smelling discharge also occurs. The vast majority of patients experience pain at the site of the lesions – HS is the most painful of all dermatoses . The disease is also accompanied by itching.
"HS primarily affects young people between 20 and 30 years of age , but it is increasingly affecting even younger people. This is one of the most severe dermatoses, significantly reducing the quality of life of these patients and causing them to feel stigmatized. This is a significant problem because we are talking about young people entering the job market, and in their private lives – a time when they are entering a relationship and starting a family," notes Professor Szepietowski.
As he notes, the problem with HS is the diagnosis itself, which can take up to 7-8 years . This isn't just a Polish phenomenon, as the situation is very similar in other countries, as documented in international multicenter studies.
"Why does diagnosis take so long? The reason is likely that patients are referred not only to dermatologists, who are most knowledgeable about the disease, but also to other physicians . Because abscesses form as the first skin lesions, patients may be referred to a surgeon or family doctor. Lesions appearing in the anogenital area refer patients to a gynecologist or urologist. Recent studies conducted at our center show that HS is recognized satisfactorily among dermatologists, but among specialists in other fields of medicine, the situation is much worse – the detection rate is at most 20-30 percent, " the professor points out.
"The terminology is also a problem, as we don't have a good Polish name for the disease hidradenitis suppurativa . The ICD-10 classification, which we use to code patients, uses the term "multiple axillary hidradenitis," which doesn't reflect the nature of the disease, which affects not only the axillae and not only abscesses," says the expert.
"Many years ago, German dermatologists introduced the term acne inversa, meaning inverted acne. This term causes significant misunderstanding because it refers to the common dermatosis of acne vulgaris. Therefore, both in the public and in the medical community , HS may be associated with a variant of acne, which is completely unjustified . Using this term may also lead to a negative perception of HS by healthcare decision-makers," adds Professor Szepietowski.
The expert points out that delaying the initiation of HS treatment or inappropriate treatment has a profound impact on the patient's psyche. Depression, anxiety reactions, and suicide attempts are common. The quality of life for both the patient and their partner dramatically declines.
For a large group of patients, the lack of a partner also becomes a problem. According to a study conducted by a Wrocław-based center, over 30% of these patients are unmarried: the lack of early anti-inflammatory intervention leads to gradual progression of the disease and the development of the previously mentioned skin lesions – draining fistulas and scars.
"Furthermore, HS is associated with systemic inflammation, so if the disease is not treated early enough, similarly to psoriasis, it can lead to systemic disorders such as metabolic syndrome, overweight or obesity, diabetes, and cardiovascular disease. The consequences are therefore very serious," emphasizes Professor Szepietowski.
"Regarding the treatment of HS, we have developed Polish guidelines based on European guidelines, which we also contributed to. They indicate that HS is a disease entity requiring intensive, effective anti-inflammatory treatment and the addition of surgical treatment , which will vary depending on the stage of the disease," he explains.
"We currently have new therapeutic options, primarily in the form of biologics. The first such drug registered in the EU was adalimumab , but Poland is unfortunately one of the few European countries that still doesn't reimburse it, which is very unfavorable for patients. However, we hope that it will eventually be included in the drug program with secukinumab – a newer drug that inhibits interleukin 17 – which we are currently using," the expert points out.
"We would also like to see bimekizumab , which targets both interleukin 17A and interleukin 17F, included in the drug program. The results of the clinical trials are very encouraging and allow us to place great hopes on this therapy," he adds.
" As physicians, we must be able to choose and tailor therapy to a specific patient , depending on which treatment they respond best to. Achieving the best possible outcome requires individualized therapy. We would also expect greater flexibility within the drug program, as our colleagues in other countries have much greater options in this regard," emphasizes Professor Szepietowski.
As he notes, dermatologists have always thought of biological treatments as a last resort, administered to the most seriously ill after all other available options have been exhausted. This was true for cases of psoriasis and atopic dermatitis, for example.
"However, in the case of HS, due to the different nature of this condition, we want biological treatment to be introduced early, when the disease is in the inflammatory stage . This allows for a significant reduction in its progression and protects the patient from developing permanent changes that would require a combination of pharmacological and surgical therapy," says the professor.
It also addresses the issue of model care for HS patients .
"What should it look like? First, the disease should be diagnosed as early as possible, and anti-inflammatory treatment (antibiotics and biologics, as available options) should be initiated as soon as possible. If permanent changes occur, combined therapy should be implemented—surgical treatment along with continued anti-inflammatory therapy," says Professor Szepietowski.
- Importantly, a dermatologist should be the key person guiding the patient through this difficult and burdensome disease, using, depending on the needs, the support of other medical specialties - he adds.
As a reminder, Professor Jacek Szepietowski co-authored a publication on hidradenitis suppurativa published in the world's most prestigious medical journal, The Lancet. According to the expert, this is the latest update on HS, with the most important message including the identification of three phases of disease development and the emphasis on a holistic approach to patients with HS.
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