Hidradenitis suppurativa and bacteriophage therapy – #P0003
The following is information shared by a patient who has taken bacteriophages for their condition. For privacy purposes, all personal details of the patient have been removed and patients are given an individual code.
Brief patient background:
- Condition: Hidradenitis suppurativa
- First appearance of condition – Age 13
- Stage – 2
- Other conditions – N/A
Medication taken for condition throughout the years:
Creams, ointments, treatment & remedies:
- Echinacin ointment
- Betadine scrub
- Silver ointment
- Many other alternative medical treatments
- Intesti phages oral and topical
- Intesti ointment
- Staphylococci phages oral and topical
- Intesti phages suppository 10 days
- Staphylococci phages suppository 2x 10 days
- Gladskin (staphefekt endolysine)
Hidradenitis suppurativa state prior to phage therapy
I have Hidradenitis suppurativa for almost 20 years now. My HS has developed to a point that I could no longer perform even basic daily tasks. I have been on disability since 2008, but the last months prior to the phage treatment, my HS was worse than ever before. A daily pain score of 7-8 out of 10 and 10-15 new flares a week. I could not do any household chores, was unable to take my daughter to school and all I could do was lay on my couch or in my bed, as even sitting was too painful.
Hidradenitis suppurativa and bacteriophage therapy
I went to the Eliava Phage therapy centre on April 8th. They started me on Intesti phage orally twice a day and applied the Intesti phages directly into my wounds. I had to apply Intesti cream myself.
Within 5 days, 2 of the 3 most painful and recurring flares were gone. When they got the sensitivity tests back, they started me on Intesti phage orally in the morning, and the Staphylococci phages orally in the evening. I noticed that I began to regain my energy during my 2 weeks in Tbilisi for my treatment.
Bacteriophage intake and treatment progress
First week of treatment
The difference was noticeable within a few days. I had more energy and the wounds that were there for months started to close up. I was still getting new flares, but they seemed less aggressive. The most noticeable thing was the decrease in pain. My pain went to a 5 and a 6 within a week. After a week, the institute also gave me the Intesti vaginal suppository for 10 days (once every evening before bed).
Month 1 to Month 3
I completed 20 days of phage treatment and then had 2 stop weeks. The first stop week went fine, but during the second stop week I got a new, fairly aggressive flare. As soon as the 2 weeks were over, I started taking 1 Intesti phage orally in the morning, a Staphylococci oral phage in the afternoon and an Intesti phage orally in the evening. I was also using both Intesti and Staphylococci ointment where needed. I also did a 10-day Staphylococci vaginal suppository again and within 5 days an open flare had closed and went away.
The main thing that I noticed was further decrease in pain (a level 3-4), and a decrease in the number of new flares. The flares that did come up, were less painful and went away faster.
At the end of the second cycle of taking phages, which lasted for 20 days, flares seemed to flare up again. I spoke to the Eliava centre and it was decided for me to skip the stop week and to continue taking the Intesti phages orally every morning and the Staphyloccoci in the evening. In addition, I began to soak phages on band aids and placed them on open or flares that were starting up. My pain was down to a 0-3 score and I got a maximum of 2-3 new flares a week, none of which were really painful. These flares were sore or no pain at all.
Around 2 and a half months since I began the bacteriophage therapy, I squeezed a bump under my armpit (which was a dumb idea). Within a few hours the area was red. It started to swell up, got painful and hot to the touch. Within 48 hours my pain level was back to a 7 in the evening.
I decided to do apply an Intesti phage soak, drenched a whole bottle on a band aid and soaked that onto the spot overnight. The pain level went from a 7 to a 3, and the next morning I even woke up on that side, which I could not lay on at all the evening before. The redness decreased; it was not hot to the touch anymore. Within 10 days the flare was almost gone and not painful anymore.
My current pain score is 0-2. I hardly get any new flares. I have started re-validation with a physiotherapist to get my muscle strength back up and my fitness at a healthy level. I am not 100% flare free, but they don’t hurt anymore and I don’t get really big ones and hardly get ones that drain. I can ride my bike again, can wear jeans again, and I am feeling better every day. I just sent new swabs to the Eliava phage centre to see if we need to adjust the treatment.
Hidradenitis Suppurativa support group:
Hidradenitis Suppurativa Support – Unique Fun Facts
This group is for those seeking HS Medical science facts, HS research, advice, support, to read and share experiences.
HS & Phage therapy support group:
Hidradenitis Suppurativa Phage Therapy Resource
This group is for all patients, doctors and scientists. Everyone is welcome to share their HS/phage story, ask questions about Bacteriophage treatment with Hidradenitis Suppurativa.