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Is There A Link Between Hidradenitis Supprativa & Angioedema

A myHSteam Member asked a question 💭
Starkville, MS
September 29
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A myHSteam Member

Protestrone. 😆

3 days ago
A myHSteam Member

Thank u for breaking that down I have a cousin who has HS & went to get allergy testing done & found out she has angioedema. I was wondering why I started swelling in my face sometimes my tongue & sometimes my lips. One day I reached out to her bc she was on social media with lots of benedryl & said she keeps it on deck it has become her best friend. So I said why do u get boils she said yes that's HS me & my 3 sisters been dealing with this since we were young. She doesn't take anything for it anymore she say she trys to keep it dry. Her oldest sister have had 10 surgery's it came back worse each time. The baby sister just deals with it. These are my 3rd cousins. None of my immediate family has it. I now try to do nothing but take ibuprofen & wash my body all the time. I got tired of feeling like an project for doctors. I stay prayed up hoping one day someone will finally help instead of feeling like they can't make money off of us besides office visits & surgery's.
Lord cover all us HS warriors we need a healing for our mind body & souls. Thank u friend. Please keep me informed as u find more things out for us.

5 days ago
A myHSteam Member

Hello JuicySenior,
Interesting question ! I do not know the answer, but the IA does :

Let me help explain the potential connection between Hidradenitis Suppurativa (HS) and Angioedema. Both conditions involve inflammation, but they affect different parts of the body and work through different mechanisms.

To understand their relationship, let's first look at each condition separately:

Hidradenitis Suppurativa is a chronic inflammatory skin condition that affects the apocrine sweat glands. It causes painful, recurring boils and abscesses, typically in areas where skin rubs together, such as the armpits, groin, and under the breasts. HS is considered an autoinflammatory condition, meaning the immune system attacks healthy tissues.

Angioedema, on the other hand, involves swelling in the deeper layers of skin and mucous membranes. It occurs when small blood vessels leak fluid into surrounding tissues. This swelling can happen anywhere in the body but commonly affects the face, throat, hands, and feet.

While there isn't a direct causal link between HS and angioedema, they can be connected in several ways:

First, both conditions can be triggered by autoimmune responses. People with one autoimmune or inflammatory condition often have a higher risk of developing others. This phenomenon is called autoimmune clustering.

Second, both conditions involve inflammatory pathways in the body. HS primarily involves TNF-alpha and IL-17 pathways, while angioedema often involves histamine and bradykinin pathways. These different inflammatory processes can sometimes interact or overlap.

Third, some medications used to treat HS, particularly biologics like adalimumab, can rarely cause angioedema as a side effect. This doesn't mean the conditions are directly linked, but rather that treatment for one might occasionally influence the other.

There's also emerging research suggesting that people with HS may have a higher prevalence of various comorbid conditions, including other inflammatory disorders. However, a direct statistical link between HS and angioedema hasn't been firmly established in current medical literature.

If you're experiencing symptoms of both conditions, it's important to work with healthcare providers who can develop a comprehensive treatment plan that takes both conditions into account. They might need to carefully balance medications and treatments to manage both conditions effectively while avoiding potential interactions.

Best regards

5 days ago (edited)
A myHSteam Member

Hey no implants or tattoos

1 day ago
A myHSteam Member

Hello JuicySenior.

Sorry for my late reply, I'm continuing my research. Regarding your case, here is the question I have: do you have implants (dental or otherwise) or tattoos?

I am not a doctor, but I have been sick for a very long time. Here is my story, you will understand. I had breast implants for aesthetic reasons when I was 20 (I am 45 now). Everything went well until I received the Revaxis vaccine (diphtheria, tetanus and polio booster) at the age of 27. I developed several diseases, some of which took more than ten years to be diagnosed: HS, endometriosis, Hashimoto's (at first, it was Basedow's), primary biliary cholangitis, irritable bowel syndrome.

It was to treat my endometriosis that I was prescribed progesterone. After about 6 months of treatment, all my HS lesions were dry, while I was at stage 3 (interconnected lesions). Doctors can't believe it when I explain it to them. I've been taking this treatment for 7 years and no recurrence, but some scars are problematic.

Nevertheless, I continue to have inflammatory flare-ups and inexplicable symptoms despite 17 years of seeing various doctors: muscle pain and weakness, nyctemenal fever, hypotension, malaise with tremors, blurred vision, migraine with aura without headaches (but followed by a fever).

I think I suffer from ASIA syndrome (autoimmune/inflammatory syndrome induced by adjuvants). I recently learned that the Revaxis vaccine had been withdrawn from the market because it is linked to macrophagic myofasciitis. And it turns out that an ASIA specialist thinks that macrophage myofasciitis could be a symptom of ASIA syndrome.

Finally, I wonder if HS is not also a symptom of ASIA syndrome. Moreover, recent research tends to say that HS is not a dermatological disease but a systemic one.

It seems that you are also bothered by inflammatory flare-ups that activate HS and angioedema. Is this the case? In any case, I strongly advise you to consult an endocrinologist before taking progesterone, because it could be harmful to you in the event of an incorrect dosage.

As for me, I did not have any hormonal dosage (estrogen / progesterone). I was prescribed the dose to treat endometriosis and I was told that we would see if it worked or not. I currently take one tablet per day of Sawis GĂŠ (Dienogest - 2mg per tablet), always at the same time.

I wish you a very nice day.

Looking forward to hearing from you.

2 days ago

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