Puzzled

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Hi folks.  I have had HS for around 15 years but have just had a new experience with it which has me confused and I wonder if anyone could clarify it please.

Around 5 months ago I got a big squishy lump by my shoulder blades which I think was a cyst.  Anyway I ignored it but around 10 days ago it became infected overnight.  

I went to the doctor who  gave me ab's Erythromycin which I took for 2 days but made me feel sick.  So I changed to doxyclycline which usually clears them.   It hasn't.  

It has gone down by about 3/4 but it is still infected and painful with lots of impacted matter still there.  

My questions are:    It is a very unusual place to have one for me,  I have never had a cyst go bad before,   and is the only option now to lance it?   Will the surgery be able to do it?

Thanks.   Bev x

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  • Posted

    Sounds like either you've built up a tolerance to doxycycline, or the infection is not covered by that particular antibiotic. For example, when mine get infected, I usually get proteus infections, and doxycyclines do not cover those. Erythromycin is great for staph infections, but there are a lot of bacteria that are resistant to it now-a-days, proteus for example.

    It could be that another antibiotic will take care of it, but your best bet is to have it lanced. I know with mine, once the infection gets to a certain point, antibiotics alone won't take care of it, they actually have to open it up and let the infection out. They'll send the pus out for analysis and should have a better idea of what antiobiotic will work next time you get an infection.

    If this is a recurring cyst in the exact same spot, you might want to look into having it surgically excised by a dermatologist. Once one of my cysts started to get infected, they just kept getting reinfected within a few months time. Sorry to hear your HS is progressing this way. Good luck!

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    • Posted

      Hi atticus many thanks for your reply.  I knew I could rely on you to help coz you always do bless you. 

      That's what puzzling me - the fact that doxyclycline isn't being completely effective this time.  I don't think it is that but I am worried this is a different stage to my HS and things are going to get worse.   The ab's have until now always cured it and taken the infection away completely even if little lumps of stuff are occasionally left in.  It hasn't happened this time as it is still infected which is very unusual for me. 

      What is a proteus infection please?   Can HS morph into that do you know?  Or are there just different variations?  I have never had a cyst before so I am in uncharted terriotory now. 

      Do your doctors lance yours?   I think I might have to go to A and E which is a real pain.  I have had a few recurring ones incised and thankfully they have never come back.

      I am going to ring the doctors tomorrow for advice and will let you know how I get on.

      Many thanks again for your reply love.  Bev xx

       

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    • Posted

      Proteus, or Proteus mirabilis, is just a type of bacterial infection. HS has absolutely nothing to do with bacteria. Remember that, because it's very important. And a lot of GPs don't seem to understand that.

      The initial cyst is just an inflammatory reponse, and the puss that makes up a HS cyst is just a bunch of white blood cells. However, it is very common for these cysts to become infected, but the primary cause of a cyst caused by HS is not bacterial in nature. That's what separates HS from things like MRSA.

      For whatever reason, when mine get infected it's always a proteus infection. I've never had staph or anything else turn up in any of my cultures (sadly there have been quite a few samples taken).

      I've done some research and that seems to be a pretty common bacteria in people with HS. There was a medical journal published in Poland I think that listed the most common bacterial infections in HS boils. I think Proteus was #2, don't quote me on that though.

      To be clear, not everyone with HS gets infections, only the lucky ones. Yay us. I honestly can't tell you why some people can go through their entire lives with HS and not have a single infection, where others, like moi seem to get infected at the drop of a hat.

      It is possible you're progressing into another stage of the disease, or it could just be spreading to another part of your body. I'm not sure what areas are usually affected for you, but over time HS does tend to spread and even though it's usually concentrated in the armpits, underboobs, groin and anal regions, it can spread anywhere you have hair. And you can have different stages in different parts of your body.

      The antibiotics have been working as an anti-inflammatory, although from what you've said it doesn't seem to get rid of your lumps entirely just keeps them under control. I'm not sure if you've been taking them long-term or just as needed, but either way, it's certainly possible you've built up a tolerance if you've been taking it for more than 3 months. Your doc might recommend another antibiotic in a different class if this one's been working for you.

      As far as whether or not it needs to be lanced...that's sort of in the eye of the beholder, or doctor as it were. Some doctors would rather put you on antibiotics first and lance as a last resort, others just say forget it, let's drain it. Once an abscess reaches a certain point though, usually when it starts causing fevers, chills etc, or just causing you too much pain, a doctor will just go ahead and lance it. I've always gotten an antibiotic after the fact to kill whatever else is in there.

      I'd personally recommend getting it lanced, only because relief is pretty much immediate, after you get through the nail-biting experience of being numbed anyway, and they'll be able to send the puss out for culture and give you an antibiotic that will definitely kill whatever bacteria is still running around inside that boil, instead of just best-guessing it. I can't even tell you how many I've had lanced, if I had to guess, probably around 2 or 3 dozen.

      Just to give you another option, because nobody likes the idea or the practical application of lancing a boil, talk to your doctor about the possibility of a corticosteroid injection. Again, it's a powerful anti-inflammatory, but it's injected directly into a cyst and usually reduces inflammation significantly within the first 24 hours, and continues to work from there. It's not a long-term solution by any means, especially since they can only give you so much within a 6 month time span, but sometimes if I had a pea-sized lump that morphed into an infected golf-ball overnight, I'd make an emergency appt with my derma and he'd just inject me, give me an antibiotic, and by that time the next day it was mostly gone, and pretty much flat within 72 hours. Never stopped them from coming back, but it was a lot less painful than lancing, and I was able to go in on my lunch break rather than taking the rest of the day off. He only did this after lancing two or three and determined what type of bacteria we were dealing with though.

      Now here's the good news , if this is the first cyst that's popped up in that particular area, get a dermatologist to surgically excise it. Do it now, before it starts to develop sinus tracts and spread out, and you might prevent more from showing up in that area.

      Definitely go see your doctor, I know it's a pain, but it's just going to get worse if you don't do anything. Let me know how it goes!

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    • Posted

      Wow thanks atticus.  I keep reading your reply through trying to absorb what you have said.   I have never heard of a proteus infection before or an injected straight into the abcess.   I think I have learned more from you in your posts than I ever have from doctors or derma's!  Thank you.   

      I have had a few pea lumps which morph virtually overnight into a monster.  I then visit the dr and get some ab's which usually clear it up with 2/3 days, though sometimes it does leave lumps which do recur so I get those incised.  No one has ever mentioned injected into it and I didn't know this could be done.

      My HS started around 15 years ago on my upper inner thighs,  then spread to my stomach.  I have never had one under my armpits and dread it spreading there. 

      This one is different as was the one before,  on the back of my leg.   This is by my shoulder blades and started off as a cyst which gave me no trouble for around 5/6 months,  until it suddenly became infected.   For the first time ab's aren't curing it completely and it is still lumpy, infected and painful.    I am not on long term ab's though I was for a while on textracycline which did nothing so I stopped it.  

      When I saw the doctor last Monday she refused to refer me again to a derma on the grounds that they have to try everything first before referral.   I don't know where you live but I am in the UK under the NHS and I can't just go to see one on spec (well I can but it's very expensive and I can't afford it).   The way it works here is I go to the doctors with left over lumps,  and they then refer me to a derma for incision but this can take several weeks. 

      They will not do anything with mine when they are infected except give me ab's as they say lancing it as a first option can cause problems. 

      I have rung the doctors and am due a ringback soon so will let you know what they say.  

      Thanks again atticus for your very informative help.   Bev xx   

       

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    • Posted

      Hi I just got a call back from the doctors and he said I need another week of docycycline.   He said it shouldn't cause any further sinus track formations meanwhile.  I hope he is right!   Bev xx
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    • Posted

      No offense to your doctor, but he has no idea what he's talking about. A dermatologist who has actual experience dealing with HS is the only person who could really tell you that for sure, with respect to sinus tracts anyway. They do take awhile to form, so you're probably okay for the next few months, but the longer you wait the more likely you are to develop them.

      The ab by itself could help the infection, as long as you haven't built up a tolerance to it and if it's an infection covered by doxycycline, which is a big if honestly. I would say, if you haven't seen significant improvement in the next 48 hours, get to an ER and have them lance it. Tell them you have a problem with HS and recurring boils and cysts and really put your foot down about being referred to a dermatologist for follow-up. They may or may not, but don't be afraid to be pushy, the doctor isn't the one who has to live with this, you are.

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    • Posted

      Thanks again for your reply.  The doxyclycline is working fine and it has now almost gone thank goodness.   If there are any lumps left afterwards even if very small are they worth getting incised?  Will they cause sinus tract formations even if it doesn't flare up again?  

      At least this doctor I spoke to on the phone knew about HS and he said all doctors should.  Not my experience.  

      I am going to ring up the derma secretary and explain to her/him.  As I have been referred before there is just a chance that I could self refer I guess.  

      Having said that though the derma I saw last time was a patronising git. 

      Is your name taken from 'To Kill a Mockingbird'?   From Finch Atticus?  Just wondering.

      Thanks for your replies love,  much appreciated.  Bev xx

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