Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
Hi Everyone,
While I've been avoiding it for several years I'm facing the inevitability that wide surgical excision may be the only option left for me.
In a final attempt to deny my fate, I wanted to see anyone has some advise for me regarding any real alternative to surgery when you're at stage III. I also wanted to hear from anyone who has has a positive experience with wide surgical excision.
Any advice or feedback would be greatly appreciated as I'm really struggling with what to do next.
BACKGROUND
I'm a 46 year old guy from Toronto Canada, who has been suffering from HS for 10+ years. I'm not overweight (although I could loose 10-15 lbs). Walking any real distance leads to friction and additional inflammation within 12 hours. Exercising is too painful.
I currently have stage III on both sides of my groin and on my left armpit that have been draining 24/7 non-stop for the past 8 years. As you'll all appreciate, they are extremely painful and severely hinder my quality of life.
I see a pretty good dermatologist. Every 6 months he sets up an appointment for morning rounds at a hospital where he has 5+ doctors take a look and review my history. They then 'crowd source' possible treatment protocols between them.
SURGERY
De-roofing
I had about 4 procedures early on many years ago to cauterize (de-roof) the sinus tracts in my groin. This only offered very temporary remission at the time.
Wide Surgical Excision
I have a consultation appointing in July with a surgeon to discussion wide surgical excision of my left arm pit and both sides of my groin.
MEDICATION
Antibiotics
I've tried Clindamycin and rifampicin in the past without any significant improvement along with a series of other antibiotics.
Biologics
I've tried just about everything including biologics (Remicade, Humira and Kinneret) and have been able to get it under control. As much as I had been resisting wide surgical excision I can't see any alternative.
Current Medication
I'm currently taking Clindamycin, Ciprofloxacin, Dalacin T (Topical) and Prednisone.
DIET
I've tried a paleo diet but didn't see any significant improvement. I'm currently two week into a Ketogenic Diet but haven't seen an improvement yet.
TRIGGERS
I know that the following will typically trigger a flare-up,
- Sugar: If I consume sugary foods I'll see a reaction
- Stress: Definitely a correlation with stress or a lack of sleep
- Friction: Any kind of friction will trigger a flare-up
Would love to hear from anyone regarding my situation. I'd also be interested in hearing from any HS suffers in the Toronto area.
Thanks,
BlueSkyGuy
While I've been avoiding it for several years I'm facing the inevitability that wide surgical excision may be the only option left for me.
In a final attempt to deny my fate, I wanted to see anyone has some advise for me regarding any real alternative to surgery when you're at stage III. I also wanted to hear from anyone who has has a positive experience with wide surgical excision.
Any advice or feedback would be greatly appreciated as I'm really struggling with what to do next.
BACKGROUND
I'm a 46 year old guy from Toronto Canada, who has been suffering from HS for 10+ years. I'm not overweight (although I could loose 10-15 lbs). Walking any real distance leads to friction and additional inflammation within 12 hours. Exercising is too painful.
I currently have stage III on both sides of my groin and on my left armpit that have been draining 24/7 non-stop for the past 8 years. As you'll all appreciate, they are extremely painful and severely hinder my quality of life.
I see a pretty good dermatologist. Every 6 months he sets up an appointment for morning rounds at a hospital where he has 5+ doctors take a look and review my history. They then 'crowd source' possible treatment protocols between them.
SURGERY
De-roofing
I had about 4 procedures early on many years ago to cauterize (de-roof) the sinus tracts in my groin. This only offered very temporary remission at the time.
Wide Surgical Excision
I have a consultation appointing in July with a surgeon to discussion wide surgical excision of my left arm pit and both sides of my groin.
MEDICATION
Antibiotics
I've tried Clindamycin and rifampicin in the past without any significant improvement along with a series of other antibiotics.
Biologics
I've tried just about everything including biologics (Remicade, Humira and Kinneret) and have been able to get it under control. As much as I had been resisting wide surgical excision I can't see any alternative.
Current Medication
I'm currently taking Clindamycin, Ciprofloxacin, Dalacin T (Topical) and Prednisone.
DIET
I've tried a paleo diet but didn't see any significant improvement. I'm currently two week into a Ketogenic Diet but haven't seen an improvement yet.
TRIGGERS
I know that the following will typically trigger a flare-up,
- Sugar: If I consume sugary foods I'll see a reaction
- Stress: Definitely a correlation with stress or a lack of sleep
- Friction: Any kind of friction will trigger a flare-up
Would love to hear from anyone regarding my situation. I'd also be interested in hearing from any HS suffers in the Toronto area.
Thanks,
BlueSkyGuy
Hmmm... It sounds like your caregiver is pretty sharp with the clindamycin-rifampin combo which has some good representation in HS literature, although not necessarily as up-to-date on HS as possible?
I think intravenous ertapenem may hold more promise than clindamycin or clindamycin-rifampin. I wish I could speak from actual experience but some clinical studies have reported some good results using ertapenem.
Some efforts have used ertapenem in combination with other antibiotics (rifampin has been one) but ertapenem may be qualified to assume the bulk of the credit, it has a remarkably broad spectrum that covers most of the more worrisome infections that have been found complicating HS.
These efforts haven't given permanent results either I don't think, but I can see where even temporary remission would be a blessing.
I'm guessing that failures of clindamycin and/or rifampin to make desired improvements in HS may be due to microorganisms present that acquired resistance to one or the other, or to both.
What worries me about surgical options now is that I think it usually takes some careful microbiological work to guide antibiotic
use both against HS directly, and to help assure a good post-surgical outcome.
I keep hoping that if someone has an adequate work-up of their bacteriology, that surgery can be avoided in favor of more successful antibiotic use.
Without that info, the best surgical results may be harder to get, is what I think.
I did have a horrible network of sinus tracts about 10 years ago. I didn't have surgery on them but they eventually went away - I'm not certain how but I suspect my doctor might have succeeded in killing off some of the organisms responsible for that using antibiotics.
I wish I knew which antibiotics now, but even if I found my old pharmacy receipts it probably wouldn't help much unless I remembered exactly when the improvement seemed to start. I sort of wasn't paying that much attention to partial improvements at the time, and I was thinking of the attempt as a complete failure for not getting 100% results, instead of noticing a partial success.
Wish I knew what to think of the ciprofloxacin. My doctor considered that at one point but I was reading something awhile back that made me sort of glad they didn't try. Can't quite recall whether it most seemed risky or just seemed somewhat futile. I know it's not near the list of things I'm excited about, anyway.
Also appreciated your views regarding microorganisms.
Thanks again for the suggestion.