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, culminating in drainage, often leaving open wounds that will not heal.

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HS secondary to MRSA

I was recently diagnosed with HS seconday to MRSA. I am a Radiation Therapist and deal with cancer patients daily so my ID doc decided to attempt decolonization protocol(Muciprocim ointment 2 times a day and Hibiclens baths for 10 days) for me( I am colonized and infected) and my family. I was given a nasal swab to start and received the news the next day from my hemotogist/oncologist and was in to see the ID doc in 2 days(I'm very lucky). I was referred for possible hidradenitis suppurativa but that was secondary to my MRSA infection. We were on the protocol for 10 days with Zyvox(after failure on Keflex and Augmentun) for myself for 10 days to coincided with it. I had 7 boils under my left armpit and 2 on my right and an stye in my right eye. 5 days after stopping the meds and nasal ointment, I had a new boil emerging under my left armpit. We are still doing the hibiclens showers. I have leukocytosis and thrombocytosis of unknown origin for about 7 years and low immunoglobulin G so I am considered immunocompromised. I went back to the ID doc and started Bactrim DS. 4 days into Bactrim DS treament I got a new boil that is now as big as a golf ball and a pea sized one that is just waiting to pounce. Now I will be starting another round of Zyvox for 14 days in a couple of days-the pharmacy has to order it because of the cost they don't keep it on hand. My ID doc told me that the hope was to reduce the MRSA levels but I would probably always battle this disease. One option is IV immunoglobulin but that only boosts the immune system for a few weeks. Plus there are considerable side effects. I am blessed that this is not in my bloodstream or lungs and I hope that never happens...but only time will tell. Just wanted to introduce myself and say hello to my new HS family. If anybody needs to talk or vent just let me know. Oh...the ID doc gave me a card for Zyvox and I paid $35 for my prescription with insurance and it is worth up to $300 to someone that is not insured...so maybe the drug reps can get others some of these cards? It's worth asking about. I've been on Kelfex, Augmentum, Bactrim DS and Zyvox for the sores. Zyvox seems to be the best...any other ideas to try? So thanks to everyone for your responses...even if it is only to introduce yourselves.

Replies

deleted_user
deleted_user

Welcome! Sounds like you are having a tough go of it but it also sounds like your doc is on top of it as well. My daughter has had MRSA and it ended up being a 3 week hospital stay coming home with a pic line and doing IV's at home.
deleted_user
deleted_user

I don't Have MRSA but my doc did put me on a MRSA med.
Doxycycline Hyclate 100mg twice day

I also learned from the group that Turmeric 500 mg twice a day
its over the counter I get the spring valley kind. it can work fast or it might take awhile. all so make sure it wont inter fear with what your taking.
With the Hibiclens I bath in it.
hope this helps
tangerinebear
tangerinebear

So sorry you are having so much trouble..MRSA is ALMOST impossible to get rid ...Once you are colonized you are stuck with it. as antibiotics go I am surprised they did not give you vancomycin....Have you tried alternative approaches to this problem like garlic baths? garlic will not become resistant to staph......antibiotics eventually quit working..... With antibiotics and HS they really dont work...you keep breaking out regardless. I take care o my daughter who has HS ....... Staph is a problem with her so I give her garlic baths and do not bathe her in bleach as I have done a long time as it did NOTHING TO stop the mean little bacteria.....kids with Down Syndrome are also prone to boils....so she gets a 2 edged sword with genetics......I bathe her with hibiclens in the groin area...... other than that I use dial soap ( gold bar).......I dont think she has mrsa because she started breaking out with boils at 7 years old and I never wear gloves and have had some horrendous lesions on her skin and I never get as much as a pimple so I dont think she has MRSA...... I am so sorry you are battling HS and MRSA....that is a bear to have to deal with that.... I would stay not eat sugar in any way as bacteria grows with sugar....would also boost the immune system with whatever you can do....like very healthy veggies..... and do not eat junk...good luck to you....Tangerinebear xo I gave up on the medical community years ago to help my daughter~
tangerinebear
tangerinebear

by the way, take care when looking into cures with mrsa and HS...lots and lots o scams....sorry my keyboard is not working right...God bless, Tangerinebear xo
ATOWifeofJason
ATOWifeofJason

Thanks to all that for your support and comments...I am really new to all of this so I am thankful for all info. I'll keep everyone updated.