Hidradenitis suppurativa

[imsmiley12]

I was diagnosed with HS a few years ago and subsequently had a surgery to remove an infected sweat gland in my left arm pit.  During the last year I have had a recurrance of symptoms in my right arm pit 4/5 times.  Most generally we have been able to "deal" with this with clyndomycin, although on one occassion I had to have the area lanced twice.  I am currently having issues again.  We have started the antibiotic treatment today.  In the past my doctor has been reticent about advancing to the surgical procedure, but I am getting sick of having to deal with this on a regular basis.  I want to push my doctor to do transfer my care to the surgeon to get this accomplished, but I don't want to make him mad.  Any thoughts on whether I should wait or go ahead and press the issue?  I am aware that recovery is dificcult, but I have done it once and am going into this (I feel) fully informed.  Thanks!!

[Dr_Smita_S]

Hi

Hidradenitis Suppurativa is an uncommon chronic inflammatory skin condition. The underlying cause may be autoimmune, genetic or hormonal imbalance. As with many skin disorders, HS symptoms are increased by stress.

There is not a single treatment developed as yet for Hidradenitis. The current modalities of treatment include antibiotics, long term (commonly tetracyclines- as a preventive measure) and short term (typically Ciprofloxicillin- for secondary infections), retinoids, high-dose systemic steroids, birth control pills (to make up for the hormonal imbalance).

You can discuss with your doctor about other surgical treatments such as incision and drainage of the lesions, excision and skin grafting and CO2 laser therapy.

Radiation treatment has also been used for this condition

You should wear loose fitting clothes and underwear and avoid shaving the affected areas to prevent skin irritation. Some anti-bacterial soap may be used for washing the lesions. Application of warm compress or baths to induce drainage may be tried to achieve some relief from severe, often debilitating, pressure induced pain. A general advice would be to stop smoking and lose weight, which may contribute indirectly in symptom control.

For more information, you may like to refer to the link below:

http://www.mayoclinic.com/health/hidradenitis-suppurativa/DS00818

Take care!

[imsmiley12]

returned to the doctor today and had to have the area lanced, we also switched to sulfur antibiotic

[imsmiley12]

ok, I've been on this antibiotic for almost 7 days now, and things were going great.  After the lancing and starting the new antibiotic (SMZ-TMP) the swelling was going down wonderfully and I was pretty much reduced to what looked like 2 boils.  These had even broke open on their own and were draining.  Today I started noticing a renewed tenderness to the area, and it feels like it might be "filling up" again.  The "boils" have stopped draining as well.  Any thoughts on what I should do next?  Anyone?

[imsmiley12]

I went to the dr. this morning and he lanced my armpit in 2 places this time.  He also packed the wounds, and wants to see me back tomorrow.  I guess he got some white stuff out of it this time when he "squished" it.  Last week was just liquid.  Lots of liquid.  I have an appointment with a dermatologist on the 14th, as the surgeons my dr. contacted wanted to be assured that all other measures have been taken.  I know the surgery will suck, but I can't wait for this whole ordeal to be over.  Just when it seems like it's getting better it backtracks.  I'm getting irritated by the upset stomach from the antibiotics, and then when the pain comes back I'm all dopey with the hydrocodone.  Thanks for listening and any suggestions are appreciated.

[imsmiley12]

Well, once the dr took the packing out of the holes I started feeling much better.  Haven't taken a pain killer since.  Still washing twice a day with Hibiclense and taking my antibiotic.  Switched to doxicyclene to see if that was easier on my stomach than the bactrim.  Wish me well on the 14th when i see the dermatologist.  All is good for now, No swelling no drainage.

[imsmiley12]

Ok, well the doxicyclene and my tummy didn't agree, so we switched me back to the bactrim.  Saturday night I noticed another lump starting.  Thankfully it hasn't gotten bigger since then.  Went to the dermatologist today, and didn't receive the answer I was looking for (surgery) but now i get to rub clyndamycin ointment on it twice a day after I wash with my hibiclense.  When (if) the lump disappears I get to cut down to just using it once a day, until I see her again in 3 months.  Part of me is hoping that this works, even though it's just pretty much a control measure, and part of me hopes it doesn't so I can cut to the chase and get the surgery over with.  I didn't have all this bs when I had my other surgery, so it's frustrating.  Also, I found that if/when I have the surgery, I'm going to have to travel to the other end of the state (a 4-5 hour drive on way) to have it done as none of the surgeons in my area are apparently familiar with the procedure.  Now, I may be wrong, but shouldn't most surgeons be able to slice open an armpit and remove the layer of skin the sweat glands (and hair) are in and sew me back up?  Granted it may be much more complicated than I think, but still.  Also, she talked about sending me to the dr that did my first surgery, since he was so successful.  He's a couple hours farther than the state teaching hospital.  Now, in my head, it would only make sense to send me to the U of Iowa for the surgery so that more surgeons would become familiar with the procedure, therefore (hopefully) insuring that someone else wouldn't have to travel as far for the same problem.  Am I wrong?  Any thoughts at all are appreciated!!

[coloratura]

Hi there!
Just noticed your posts.  I thought I maybe could help.  I have had HS for approx. 13 years.  I have had multiple surgeries & multiple lesions.  They started around my breasts and eventually migrated to my armpits & groin area.  I haven't had alot of luck w/ treatments, but I have found a few things very helpful & thought I would share.  The things I have tried somewhat successfully would be:
tanning (sometimes in the tanning bed)
salt water
baby powder
cotton clothing
I am trying to find out now if laser hair removal would be effective in treating this condition.  Since they say it is often an issue w/ hair follicles, you would think that this would help.  Let me know if you hear anything new!  :)

Thanks!

[imsmiley12]

Thanks for the advice!  I am usually sporting cotton t-shirts, and since this last outbreak, I've quit wearing a bra entirely.  I'm washing twice a day, and applying clindamycin gel once a day.  I'm supposed to do this for 3 months and then see the dermatologist again.  My psychologist suggested a surgeon closer to me that might be able to do the surgery when the time comes.  I've had the surgery on my other armpit a couple years ago, and it was successful, which is why I want to do it again.  I'm already tired of stinking...lol  My counselor also said she had heard of some "crystal" that was supposed to help keep the odor down (apparently her father had had issues) and she was going to ask him and let me know.  I'll pass it on when/if I hear of anything.

[kirstybell]

I have suffered from HS for 20 years.  I have tried countless treatments (excluding surgery) which dont work.  I have learnt to deal with it over the years and am just getting over a particularly bad episode.  My reason for writing is my 13 year old daughter.  She has had HS since she was 8 years old.  My heart is broken at what she is going through as i know first hand how painful and debilitating it is.  She has something which i dont have and i havent come across it anywhere else.  The top of her left arm is 3 inches larger than her right.  The rest of her arm, wrist and fingers are also bigger on that side.  The surgeon said it is caused by blocked glands and that there is no cure (his words were "she will just have to live with it").  She is very overweight and has been since she was 2 years old.  I started taking her to the doctor at that age thinking she may have an underactive thyroid gland or something as she didnt eat enough to be so large.  The doctor said there was nothing wrong with her.  My daughter is beautiful and very clean - she showers twice a day.  I know this disease is not caused by poor hygiene but try telling that to other 13 year olds.  By the way we have tried acupuncture, herbalist, chinese medicine etc but all to no avail.  Please can anyone out there help us.  (We live in Scotland,UK).
Thank you for taking the time to read this.

[coloratura]

Hi,
I am so sorry to hear about your daughter.  That breaks my heart...

I recently was diagnosed w/ PCOS & Insulin Resistance...which I believe started at a much earlier age.
They have me on a medication called Spironolactone to lower my testosterone & androgen levels.  My doctor knows that I have HS & have also had some unusual facial hair come out of nowhere.  (Another side note I have hypothyroidism & have had many weight issues)
So, that being said...from my experience, I honestly believe that HS is caused by hormones being out of whack.  I have finally been able to lose some weight and am smaller than I have been in over 10 years!  My skin has dramatically improved & I feel so much better.
Have you tried taking her off of all sugar?  When I found out about the insulin resistance, they put me on the diet Sugar Busters & found it has really helped!
Also, I have found in the past that saltwater & sun (or even the tanning bed) has helped me.

I hope some of this helps.  She should have a complete workup on all of her hormone levels.  HS is known to be associated with PCOS.  My doctors never figured this out my whole life until I finally found a doctor worth something who has struggled with PCOS herself.  It is SO important to do your own digging & not trust what doctors tell you until you trust your doctor!  :)

Good luck!