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,...

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tangerinebear 04/11/2011

Hi gang,
Well, My daughter was on bactrim for about 2 weeks doing pretty well with it. Yesterday she broke out and so I stopped the bactrim. I called her derm doctor which wants to put her on minocycline....I researched this drug a bit and was quite taken back by the side effects that this drug brings on.....
self-induced lupus, intercranial hypertension, dizziness, headaches,
gi issues, and of course yeast infections and on and on....I thought to myself I really dont want to go there.. I am kind of disgusted that the only thing the medical community has to offer is antibiotics that can cause the body to even more damage.... Have any of you taken this drug? Am thinking of putting her on tumeric which I did today and calling it good. She was on doxycycline and it gave her horrible diarrhea. The bactrim broke her out.
Now the minocycline is in the same family as doxy so am super hesitant to go there.... So will wait this out and when I see the doc on the 28th of this month will explain to her my fears..... Yes, this drug is suppose to bea really good one for acne but the side effects are really not good. So, we are
not doing this drug and hoping for the tumeric to work help keep the
inflammation down. At least the tumeric wont put her into extreme dizziness, gastric upset, yeast infections, and on and on...all input is welcome...would like you guys opinions on long-term use of antibiotics and HS.....thanks, tangerinebear xo

deleted_user 04/11/2011

Because of my many allergies, one of them bactrim, I have had to use daptomycin and vsncomycin. These are REALLY intense antibiotics and I don't recommend them to anyone,but they do work. Since they are so strong, I have to either do it at home through homeheath since I used them intravenously, or at the hospital through the MISU department (medical intravenous short stay unit) twice a day. I have to say it worked better than clindamycin and cipro in clearing up the infection. These are actually drugs used in chemotherapy as well. My insurance would not approve Zyvoxx, which is okay, because it would have had a $600 copay and gone into catostrophic coverage.

deleted_user 04/11/2011

typo...Vancomycin

tangerinebear 04/11/2011

Wow, those are major big time drugs. The vanco is a drug used for MRSA. if you have mrsa and become resistant to that drug you are in trouble. Have you been diagnosed with MRSA? I look at it this way. Elisa is a teen and has Down syndrome...She also has several other things going on like asthma, allergies, and is on the autistic spectrum. So, the broad spectrum antibiotic is not the only med she takes. As far as minocycline goes, after I googled it I would not take that drug myself let alone give it to a teen. I am glad the drugs you take help but my goodness, those certainly are heavy duty drugs.... I hope that you keep doing okay with them..... As far as big pharma goes, they sell the drugs big time and damned the side effects. Most people dont have a clue about drugs. I am a medical transcriptionist and have read it all when it comes to drugs and patient care. One needs to be very prudent and up front with their doctors on what they will and wont accept. Thanks for sharing and hope you get better.
tangerinebear xo

deleted_user 04/12/2011

Thanks.
I have never had MRSA, but because I have severe allergies it was my only option I have so-o-o many sinus tracts and I have had over 40 surgeries. My dotors feel that the double whammy of Lupus and HS are the reasons. I'm w/u as to not allowing your child to use these antibiotis. They destroy your veins and some , no most of the side effects are horrendous.I have to applaud you for taking such good care of your daughter, she sounds lovely. I have also read a lot of your posts, and I love your positivity. Good luck and God bless.

tangerinebear 04/12/2011

Thanks for your kind words and am so glad you dont have MRSA,
HS is hard enough to deal with....Lupus and HS, you poor kid....
Take care and will be praying for you..... tangerinebearxo

deleted_user 04/12/2011

I went to my dermatologist and he prescribed me Doryx and it was working wonders for my HS, it was controlling them very well BUT I lost a chunk of hair on the back of my head and so did my brother who suffers from HS. Taking longterm antibiotics is a huge risk so I wouldn't suggest it.

tangerinebear 04/12/2011

That drug gave my daughter horrible diarrhea. She would get flushed and sweaty and get horrible gi issues so we stopped that one. Then the bactrim broke her out...Now the doc wants us to try minocycline. I think I would have to have ROCKS in my head to give her that drug.
Yes, these drugs do help the HS but have major side effects.... if the HS doesn't do ya in the antibiotics will ! tangerinebear xo

tinababe1224 04/13/2011

I'm on Minocycline now. It has cleared up my HS tremendously in just a month. I haven't gotten any side affects, besides the yeast infection. I immediately told my dr and I did an at-home treatment for the yeast infection and started taking pro-biotic yogurt (to balance the yeast in my body). My yeast infection has since gone away, and I have seen a significant improvement and difference in my HS. ALL OF MY CYSTS are closing, and I have not had a recurrence of any new cysts/boils/or outbreaks!

I think it's worth a try, but this is an aggressive drug (hence the great side effects). This is obviously something huge to consider especially since your daughter seems sensitive to certain medications.

I hope this helps...

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