Long term antibiotics?: Has anyone done... - Hidradenitis Supp...

Hidradenitis Suppurativa Support

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Long term antibiotics?

kirstyo profile image
kirstyo

Has anyone done long term antibiotics? My dr gave me lymecycline a few months ago and I put them in a drawer where they have never seen the light of day again but I am really suffering just now. This is probably the worst I have been with my HS and I am just about at that stage where I am willing to try anything.

However I am a nurse and understand the implications of long term antibiotics all too well so I am not keen. I have also had massive antibiotic exposure as a child due to an unrelated medical condition so I really don't want more.

The dr said I could do a month and see how it goes, if it helps do three months then take a break to see what happens. Has anyone done this? Did it help?

19 Replies

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Hi I tried it for a month but I had to stop because of side effect swollen cheeks and tightness in the neck. I saw a slight improvement. The best thing for you is to see a specialist who needs to apply for funding for HUMIRA injections (ADALIMUMAB). Specialist now can prescribe it for HS. Good luck!

kirstyo profile image
kirstyo in reply to Hun77

My Dr wont refer me to anyone

Hi

I have been on long term antibiotics for 10years now they do help but I still get alot of flare ups with my hs and still have surgery, I have been on lymecycline, oxytetracycline- not sure if spelt right and also now on erythromycin, still not found one that helps keep it at bay for any length of time xx

You can demand for your dr to refer you to a dermatologist, explain to the dr that it is causing you emptional distress and you want to see a specialist...i had to push and also see two dermatologists as the first one (male) told me to use antibacterial soap and sent me away, 2nd one (female) understood and helped me. I tried antibiotics for 6 months but didn'twork only thing that worked for me was surgery but it has only solved the large one. Keep pushing your dr dont take no for an answer!!

kirstyo profile image
kirstyo in reply to hellenp

There is a new Dr at my practice who is a bit more understanding, but she quite rightly pointed out that if she was to refer me to dermatology they would ask what we have already tried which is nothing other that short term antibiotics when I have really needed them. I think I should probably give it a go, but I'm on the pill so need to get that side of things sorted first which is another worry because I don't really want a coil or implant but that's what will need to happen

hellenp profile image
hellenp in reply to kirstyo

Sounds like it is the best option for you...the thing most doctors don't understand is that it is not an infection so antibiotics so even long term ones often do not work...I hope they do work for you though, keep us updated!

kirstyo profile image
kirstyo in reply to hellenp

They do seem to work for a lot of people. I am willing to give it a go once I sort out my issues with being on the pill and taking antibiotics. I will need to get the implant I think

hellenp profile image
hellenp in reply to kirstyo

Well i hope they work for you...they worked for me until I stopped them again but that's just my experience. Hope you get on ok

I tried lymecyline for 3 months and saw really good improvement. But after a while, I felt unwell and developed very dry skin and bleeding from new swellings that had no HS lumps. Also, Blood tests revealed I had very low folic acid levels, but the Dr.s did not seem to relate this to the lymecycline. I did some research and discovered that long term use of lymecyline can produce low folic acid levels.

I stopped taking lymecycline and all the above problems improved. But, of course my HS lumps decided to flare up as usual! I'm back to self management for a while - but I think I need to see some kind of specialist who knows and understands HS - where on earth do I find one?

kirstyo profile image
kirstyo in reply to redleaf

Those do not sound like nice side effects at all!

It's dermatology you would need to be referred to

I was also put on a long term antibiotics, it will stop, get dry but once i stop, HS activates again. I see it as a temporary relief specially after the doc drains it.

I am on doxycycline and have been for the past 7 months. It's not a great help but does decrease symptoms. But new lesions still appear. Humira and more immunosuppressant type medications are good I hear.

kirstyo profile image
kirstyo in reply to Esorgem

My hs is nowhere near bad enough for immunosuppressants, plus i would need to give up work for that and im not doing that

I am on Clyndamycin , Rifampin and Spirilactone. ( Horrible speller) Now the spirlactone is to help for balance of the hormones. and the Rifampin and clynamycin is a great mixture .. It has helped me for about a year now.. No problems as long as i can remember to take them.

Hi, I was diagnosed with HS yesterday by the consultant I am under (my doctor referred me to the hospital when everything she tried with me had no impact). My dermatologist consultant has said that I have a 'moderate' case currently but as it is progressively and steadily getting worse the priority is to find some way to have some degree of control or maintenance of it; with this mind she has put me on an initial 3 months worth of Lymecycline with the idea that if this works I remain on it, if not, I switch to a new antibiotics. I also have been given soap replacements and this thing I have to roll on (currently waiting for the chemist as they've had to order it in). Does anyone have any suggestions for...

...things to watch out for with these antibiotics?

...things to ask to the consultant have or try?

...another ways to make life less hideous?

...anything to watch out for with my HS?

Thanks x

Hey! I’m a nurse too and my old PCP and family friend recommended me to do this many years ago but now I’m seriously in suffering here. Current I have two under both breast, one under each armput, and one in my groin and one on my left hip. Now I’m getting them other than my underarms, Breast, and groin. It’s getting so out of hand. I just might do this. I just need new RXs. And a flagyl (just in case) and a probiotic. I’m on more natural things like a tumeric and ginger pills. I’m looking into teas and other things. Thinking about getting weight lose pills too I’m 169 lbs and that’s my heaviest I’ve been. This is so hard! I’m deathly afraid of may be being placed on Humera.

I have been taking Lymecycline since February and it has totally calmed down my symptoms after years of suffering so I would def say to give it a go.

I was initially put on it for 3 months but as Iv had such improvement they are happy for me to continue in ur taking it. Also only wash In dermol and hibiscrub and find that helps.

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