Is there a cure for steatocystoma multiplex?

[kazza123]

Hi, I have just been diagnoised with steatocystoma multiplex, just wanted to know if there is anyone out there trying to find a cure. As I'm a young woman and it isn't easy to live with.

Thanks.

[Shell567]

Hi kazza123, unfortunately there isn't a cure for your condition but there are treatments available.

Main treatment options:

- Cysts can be removed surgically. In most cases, small incisions (cuts into the skin) allow the cyst and its contents to be extracted through the opening. If it is tethered to the underlying skin, excision biopsy may be necessary.

- Inflammation can be reduced with antibiotic tablets (tetracycline antibiotics).

- Isotretinoin tablets are not a cure but may temporarily shrink the cysts and reduce inflammation. However, in some people it can cause their condition to flare-up.

Kazza, there are some members of this group with Steatocystoma multiplex. Perhaps you could contact them if you need some support. I have a rare inflammatory condition called Sweet's syndrome, and I know that it can be incredibly tough and isolating dealing with a rare condition by yourself.

britishskinfoundation.healt...

[Shell567]

Sorry Kazza, the link isn't that clear.

Link to members with Steatocystoma multiplex (scribbler and livehealthy): britishskinfoundation.healt...

[kazza123]

Hiya thankyou, I have hundreds on my chest and under my arms I aso suffer from keloid scars so having then cut out wouldn't be an option. Just hope and pray they don't spread to my face. But thankyou so much for your help.

[scribbler]

Hi Kazza, Sorry to hear you suffer with the same condition. I get cysts on my chest, back and under my arms. I've had some of the larger ones removed, but my doctor is reluctant to cut many more out. I am currently on antibiotics to prevent a angry cyst getting bigger. The condition is a pain, i only found out what i had last year, i've had it since i was a teenager and i'm now 33. Hopefully a better treatment will be available in the near future. I hope it doesn't get you too down.

[saab01]

This is sooo painful when mine erupt. I had one erupt and become inflamed on my face next to my ear. I went to a dermatologist who used a cortisone injection. Was so amazed at how quickly it resolved! It became smaller, less inflamed and the residual lesion is smaller than all the other "resolved" lesion on my back. They also have discoloration/scarring while the face one doesn't.

I've been contemplating on getting a powerful cortisone cream I can have available to use anytime. Not sure if it will work otherwise I'd rather get an injection each time it occurs.

Good luck to you all

[jadadeb]

Hi Kazza.

I know this is an old post - but I have suffered with this for 43 years. Dreadful thing to have. There are days where I cannot walk because of an abcess caused by this condition. It is genetic and both of my children have it also. I can tell you that there is a medicine that can help keep them at bay. Spironolactone. This is a diruetic, but there is some effect on a hormonal issue in the body that really helps with the frequency of the infections.. You would need your blood monitored . I have taken this for years and no problems. It really helps.

[Blatane01 in reply to jadadeb]

Hi there! I know you posted this 3 years ago but your post caught my eye. I have been diagnosed with this dreadful condition too. I have tried roaccutane, antibiotics, creams, washes, bleach baths, and now all I can really do is excise them when they appear on the surface. I'm trying spirolactone as my last attempt to keep these lumps at bay- what dosage do/did you take? I have been prescribed 200mg per day but I think I'll start with 100mg. Hope you are managing the condition ok!

[Letssolvethisproblem]

I can tell you that I am trying but I can only tell I am willing to spend time to do so. I have it myself.

[Letssolvethisproblem]

Google "The Vein Hook Successfully Used for Eradication of Steatocystoma Multiplex" I think so far this is the best method. I have tried just about everything.They have a PDF on the whole procedure download it. I have hundreds of it and luckily I had a patience doctor that took the time to do this method. He did close to a hundred in a few years. He would only do a few at a time. You now doctors in US only give you about 15-20 minutes max. He is retiring now. I would like to find someone that can do this method and can do about 100 in one visit. It's very possible to do this in 3 or 4hours. And the best of all is that there is no scarring and no reoccurrence. I am a live witness. I would also like to find a doctor that can do it affordable. I might have to go to a Central America country to find a doctor but I will. I would like to start a list of people with contact information so I can keep them updated on my progress. The more people get this procedure done the cheaper it would be. There is a place in Korea that specializes on this but they charge thousands of dollars.

Steatocystomamultiplexcure gmail

[monittaa in reply to Letssolvethisproblem]

Hi There, i am a 24 and i just noticed mine have started flaring up. Do you have any new updates? Its becoming a little frustrating as some of them are on my neck and quite visible..

[kandace95 in reply to Letssolvethisproblem]

So the cure is not in the US? I had a feeling that it would be out of the country since it is a rare disease.

[Jholedawg in reply to Letssolvethisproblem]

Hey- were u able to find someone to do the vein hook surgery ? If so, has it worked ?

[nadiclinic]

cafe.naver.com/nadiclinic

cafe.naver.com/nadiclinic/726

cafe.naver.com/nadiclinic/958

facebook.com/nadiclinic

[nadiclinic]

This is K's experience.

(His Steatocystoma multiplex experience)

He lives in Europe.

steatocystoma-multiplex.web...

[Sachin_wow]

hi kazza, i am suffering from the same disorder

help me mail me at [e-mail]

[jasonship]

Hi all, I suffer from severe steatocystoma multiplex. I have cysts all over my body from head (literally, my hair falls out when they erupt) to toe (where I can't walk from the pain). I have weeks where I can barely move and feel like life is just not worth the suffering when they become inflamed. I have had random people on the street ask "omg what happened to your neck" (This is one of my worst areas}. I was picked on in school and called "lump boy". I don't know how everyone else seems to get by so easily with this condition. I feel disgusted when I look in the mirror. If there is ANY new trial treatments etc available, please let me know. The thought of living this way for the rest of my life is heart breaking.

[Lumpman2711 in reply to jasonship]

Hey buddy i just wanted you to know your not alone at 21 i got one right between the eyes the size of a golf ball that took 3 years to go away just remember tough times dont last tough people do p.s. I just got a huge one last night that hurts like hell but we can't let these bumps run our lives we just can't good luck to you i wish you the best on this journey

[fonds]

I'm in my 20's and I am very self-conscious when I am meeting people for the first time because when I make eye contact with them , their eyes always go down to my neck and stay there for a while. I've come to accept this in terms of how they make me look and the inflammations that comes with the condition.

I have never tried any medical treatments so I can't recommend any. There are a few things I do which helps: 1) when inflamed, drain the contents with a syringe needle when the skin feels very thin. The skins usually thins during the most painful stage allowing easy access to drain the contents. A quick poke with drain things out. Depending on the size of the cyst, it may take several drain sessions, if you will, to empty out the entire thing. 2) If you notice any "new" ones that grow, they are usually in liquid form (just oil not solid) so it's very easy to drain them using syringe needles. It also leaves minimal scarring when removed during this stage. I can share more tips about draining if anyone is interested. It may sound daunting but it's actually easy and straightforward once you have the right equipment and technique. 3) Kind of an obvious one but don't touch or put pressure on them, bacteria and germs from fingers can cause inflammation!

Personally, I hate it when the ones under an arm or in the private regions get inflamed. Those are the ones that hurts the most....

I also notice that stress and some foods can lead to inflammation. I used to love mushrooms but I found out it actually causes inflammation. My brother has this condition too and for him he stays away from seafood. Be vigilant in what you consume and try to see if there are patterns.

Gaining weight helps to disguise the condition. I am fairly thin and I noticed that when I gain some weight, the cysts on my neck and chest are less visible. I also tell friends and colleagues about this condition so they know what it is. I don't mind sharing it because it don't think it's anything to be ashamed of. It also helps them understand the pain involved with inflamed cysts in case I need to take sick time from work etc. 

[Opyj in reply to fonds]

Hi,

I have this condition also. I have gone to the dermatologist a couple of times to have some of my cysts drained but I would like to be able to do it myself at home. 

Can you share your methods with me?

What size of syringe needle do you use and where do you get it?

Any tips you have would be helpful.

Thanks

[fonds in reply to Opyj]

Hi Opyj. You can purchase syringes in most medical supplies stores. I don't have them with me at the moment but the tip of the one I have is at an angle which means the pointy end is very sharp. The thickness of the needle is much thicker than the ones used for vaccinations. 

I will write more soon!

[iryna]

Hello everyone,

I have Steatocystoma Multiplex. I have been diagnozed about 7 years ago and was told then that I was lucky that they didnt get inflamed.

Well, that has now changed. After having had to deal with really bad inflamations recently that left me with big scars on my belly and back I started reading and researching more about this genetic skin condition.

The reason why im writing a post here is that I have decided to have each of the cysts sugically removed to prevent them getting inflamed in future.

So I had the procedure done today. Started with 15 removed under local aneasthetics followed by a stitch on each.

I feel great. Firstly because it feels good to have them gone from my skin, secondly is that the procedure was painless and the surgeon was very professional and gentle.

I will try to upload some pictures before and after.

And hopefully if everything is fine with me )) and it all heals maybe some of you could follow my steps in dealing with the condition same way.

I am Ukrainian who lives in the UK. But while in London they wanted to charge me around £100 per each cyst removal I flew back to Kyiv, Ukraine and had each done for £3.

Hope this help.

And if any of you has a question or needs help organising a trip to Kyiv for this I would be very happy to help.

Iryna

[Letssolvethisproblem in reply to iryna]

please check your inbox. I am very interested in finding more information.

Thanks

[monittaa in reply to iryna]

Hi Iryna!

If you could post some pictures that would be great!

[iryna in reply to monittaa]

Please email me , as I can't see the option here to upload the pictures

[e-mail]

[nildoalan]

steatocystoma-multiplex.web...

This is very interesting.

[BrowniePoints]

I've had this condition since I hit puberty in high school. I have them on my face, neck, armpits, groin, head, and a lot on my back.

It has been a non stop struggle to get rid of these things but no clear easy solution yet. I'm now 35 years old and my problem still persists.

I've gone to multiple dermatologists, but they haven't been much help. They only surgically remove them by incision, but they only do 10-15 and the charge almost $300 per visit.

I've tried Accutane pills for an entire year but I didn't notice any difference, plus those pills are hard on the kidneys. I've stopped taking them.

I found the best solution is to make small incision with a sharp pointed surgical blade (you can buy them online). I do the ones I can reach myself but the ones on my back I get someone else to do them for me. My brother and I have the same condition and we work on each others backs since that's our main problem area. In one hour I can take out 50 or more. Some spots on the body are more tender and painful to remove. Sometimes you'll see a small sac that will come out when squeezing the contents out, this is good because you'll know that once the sac is removed the cyst won't re-appear. You must be sure you squeeze out everything because if you don't there's a high probability for inflammation. I also prefer poking the cyst before it gets to the inflamed stage to diminish chances of scarring. Specially the ones on the head because as some of you might know, inflammation of these will cause hair loss and you'll have a bald spot for at least a couple months.

I like to shower and wipe the area with rubbing alcohol on the surgery site to keep it as bacteria free as possible. I also use latex gloves. You may need more than one pair as the oily substance from the cysts make it very slippery to work. Or just wipe the gloves and area with plenty of rubbing alcohol to remove the oil.

Hope this helps guys.

[Lola1219 in reply to BrowniePoints]

I recently went to a DR who said the would charge $270 per lesion. 😱 Do you mind telling me where you're from? I would love to know more about your technique on removing them yourself.

[Buzzy35]

Hi Helen, I also live in Australia.

I know it’s been 2 years since you wrote this post but I was wondering if you’ve found anyone in Aus to treat it? Dr Jo in South Korea seems to be the only one I can find. I’m sure it’s a technique that many doctors could perform but I just haven’t found one.

Have you had any luck?

[string22]

hi kazza, do you have any new treatment with the condition? was/is it effective? I also have the same problem. pls do email me at [e-mail] thank you so much!

[Leahw466]

Hello my name is Leah 27 years of age I’ve notice a couple on my stomach for about 2 years was told it’s nothing but stress now about a week ago because they have spread I’ve finally been told I have this condition aswell I’m soooo stressed and don’t know where to begin I notice lots of tiny ones on my back and now they are spreading on my neck what can I do before they get big ? Is there anything I can do or take I’m scared I don’t want them on my face or too get big