Long term medication?: Hi, I recently... - Hidradenitis Supp...

Hidradenitis Suppurativa Support

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Long term medication?

emma_elizabeth_1992 profile image
emma_elizabeth_1992

Hi, I recently got a pretty dismissive diagnosis in December of Hidradenitis Suppurativa. I have suffered with reoccurring cysts for two years and through research on my own found that my symptoms matched this condition completely so I went to the doctors and asked if that is what I could have, and the response was a vague ‘yes sounds like it is, you will just have antibiotics during a flare up ‘. Are antibiotics enough or should daily treatment be taken like humira as I have seen many people have!

19 Replies

Hello if You are UK based you need to get a referral to dermatology. I don't know how that works in other countries if you're not uk

I am UK based yes, my doctor has never mentioned a referral to a dermatologist so could be worth chasing up

Humira is a last resort. Before my dermatologist would refer me I had to show that I have been on all other recomended drugs/treatments. Also my local hospital didn’t have funding so I have to drive miles (3.5hrs) to a derm across the county where they do have funding.

Suzoo profile image
Suzoo in reply to Titch_

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What is Humera please, never eard of it.

I am not sure myself, just from reading forums lots of people seem to be on it to help

Titch_ profile image
Titch_ in reply to Jaycee

It’s an injection that binds to a protein in the blood to help reduce inflammation (TNFa blocker).

It works well in HS but it can have lots of nasty side effects. The main issue is that it lowers the immune system so users are more susceptible to infections. There is also a link to some cancers. However, many people take it with no problems.

That’s very interesting, thank you!

Antibiotics only prevent/fight infections in the open lesions.

HS is caused by an over active immune protein called TNF alpha.

The only way to reduce/prevent flares is to take a TNF binder like Humira but these are only considered when the HS is uncontrolled and affecting daily living.

Humira is hospital only medication that requires dual sign off and special instructions on how to use it and store it. The side effects list is quite scary but for someone like me who couldn’t walk or wear a bra for 10 years because of HS flares it was a no brainier.

Humira is a brand name i can’t remember the medication name

Thank you, it is a horrible condition isn’t it. I relate to the bra situation, they make the lesions worse when they rub

its really painful. I myself can not wear panties, if I do then I would get a flare-up. It becomes really hard for me once my monthly friend appears because i have no choice but to wear underwear + pad. With wearing both of those things combined my HS would be very very angry and burn and hurt really bad. I cant relate with the bra situation but very well can still relate somewhat. this condition really sucks eggs. The medication that works well for me for the flare-ups is cephalex take one of those while starting to flare and it starts to go away almost immediately. Then to maintain I continuously take spiroton 2 tablets in the morning everyday. (they taste minty)

Have you tried ladies boy shorts underwear. They are helpful for wearing pads when needed.

Suzoo profile image
Suzoo in reply to LadyJoro

healthunlocked.com/hstrust/...

Good to know. I found out recently that I also have HS but the main place I get the boils is in my groin in the same spot everytime and have found that shaving triggers them and due to the extremely sensitive area where it keeps reoccurring I’m not able to drain the pus. My fiance was able to get alittle out but it looked like honey mustard. I suspect part of the extreme pain is the build-up of the pus over time. I’ve been told by a close friend of mine and my own mother that I should have a dr drain it.

How have you got on? I've had 3 surgeries, 2in April n other last month, all in my Left groin, I'm still being packed daily, antibiotics aren't working for me even though I'm still taken them,just to show them they don't work, I take metformin have done for yrs, they don't do anything for my HS, wash&shower in hibi scrub, I'm currently on metronidazole & Amoxicillin combined I'm on my 2nd week of them now & during that time I've had 2new lumps come up! I'm at my wits end now n fed up attending wound care daily, maybe if your kinda on the mend you could share what you tried?

what has been working for me is for the flare ups i take cephalex it almost starts to work right away. And to maintain i take spiroton 2 tablets once daily in the morning, and it looks like for once i am actually healing!!!! ive scabbed for the first time which means the holes are closing or i hope thats whats happening. i feel thats whats happening because there was no smell witch means it did close because no discharge. But i tend to accidently take them off, or because its in my groin the moisture makes the scabs really soft so easily they come off and then the process starts all over. but these medications i have been using are working really really well, if you havnt tried them i reccomend to give them a try.

Aww thanks for that, hope your keeping well x

I’ve been getting laser hair removal, and that has made it stop for months now and hopefully forever. It can be about 400$ for 6 treatments at the place I found, I’m not sure what it would be other places.

Have you tried or considered birth control? After years of monthly boils I am finally outbreak free since I started taking Lo Loestrin fe.

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