Hi everyone, how are you doing?
I just want to update on my progress regarding my SM. Few months back, I went to see a dermatologist in a town where I live and she is supposed to be one of the best in the country since she used to be the head of the dermatology unit in the biggest hospital in my country. But I suspected she is more concerned with making money. She asked me to try isotretinoin, and even asked me to take the original one (Roaccutane) which of course is the most expensive of all. So I took a supply of 2 months to try (2 months is too little even for acne).
Then, I fleeeeew to study far far away from home since new semester starts. A few weeks back, I made an appointment with another dermatologist. She's the 5th dermatologist I saw and I think she is very brilliant. She said she had doubt with me taking Roaccutane because it doesn't really destroy the sebaceous gland, it just shrink it and it will grow back once I stop taking the medication. So she asked me to try laser. So she sent me to see another dermatologist who specialized in laser therapy.
I went to see the 6th dermatologist who specialized in laser, and she told me that it is impossible to do laser now because once I took the Roaccutane, I need to take a 3 months gap before laser treatment can start. Moreover, it is better to do it in winter due to less sunlight thus low risk of UV damage. Since now is already December, she said why not if I continue taking Roaccutane for another 4 months and see the effect and if I still need laser, I can do the it in winter 2013.
What I realized after seeing 6 dermatologist so far, all of them said that sm cysts are flesh colored and it dont look that bad at all. Maybe that is why dermatologist dont really think sm is so serious and they dont urgently need to find a cure.
Maybe next week I'm going to see another dermatologist.
My question to you guys, have any of you had done laser? and how was it?
Loading...
Guys, how are you¿? It´s been some time since my last post. For all those new in this thread, i´ve benn sharing my experiences with the treatments i´ve tried so far (most of whats available, from Dr. Anderson in Boston, to the 5fl in China, going through co2 and diets, and so on and on). The only thing i can advice is needle extraction (so simple, that can be done at home after watching a doctor doing it a couple of times), followed (if possible) by shooting Smoothbeam laser into the extracted cysts, to prevent them from refilling, or at least, delay it. That´s the only thing that actually worked on me, with minimal scarring. All the rest, a waste of money and time. FYI, i´m currently being treated by a fellow of Dr. Anderson, who´s trying a new laser on me (a laser developed by someone in Dr. Anderson´s team). This laser is supposed to melt down the fat straight trough the skin. Yet no improvements, but as it´s a new laser, the doctor is still trying different adjustments to the settings. This laser is not available for human testing in the U.S (there are only 2 machines in the world, one is with Dr. Anderson, and the other one with my doctor, in south america). I already had 2 sessions, but like i said, no improvements yet. Please cheer up guys, something will come up. Actually this laser is quite promising, once the fda aproves it, more testings in the US will probably offer us some hope. On the other hand, and this is for males only. Has anyone thought about hair implants in the body? I´ve been thinking about this for quite some time, and as i see it, it´s a good alternative to help conceal the bumps and scars (which i have thooooousands, as a result of giving my body to almost any doctor willing to try stuff). Cause lets be honest, no lasers and no cosmetic treatments will help that much with significant scarring....... I´ve been in touch with a doctor in Miami, Jeffrey S. Epstein, who seems to have quite a lot of experience in this particular procedure. He took a look at my photos and said that i´m a very good candidate for this...but it´s quite expensive (around 15k) so i´m giving it some thinking.... This won´t help at all with our problem, but it will help conceal the bumps and/or scars, that are the main cause of our concerns. Please, think about it and let me know what you all think about it.
Loading...
I was diagnosed with SM 2 weeks ago, and i'm extremely devastated, i currently only have them on my forearms, and like everyone of you, the idea of it spreading over the years brings tears to my eyes. I've been going to countless Derma's but to no avail.
I've been researching day and night and the sad thing is, since 2002, people have been hopeful of a cure "in a few years time"
it's 2013 and those people 10 years ago have no choice but to deal with it, unfortunately, i'm not able to live with this condition looking at myself every morning checking if i have new cysts. hence,
I've quit my job, gave up everything in life and dedicate myself to finding a possible solution to this condition. I'm readying myself for any travel / any clinical trials possible.
I'm not looking for a cure since gene therapy is light years away (especially for our rare condition)
i'm looking for:
1.) possible procedure to prevent SM from ever spreading else where in your body
- There has been research of diode lasers which destroys sebaceous glands to aid acne vulgarities. I'm wondering if it's possible to find a procedure to target the arms,chest,back,neck (areas of sebaceous glands), destroy these glands to prevent cysts from ever popping out, re-occuring. It makes sense to me since SM cysts manifests within the sebaceous glands.
2.) Best procedure of removal of the cysts
-without scarring and re-occurance
Treatments thus far & Research
-I've started on accutane, however its too soon to tell. Results from what i've speculated online is that success rate is extremely minimal. Accutane reduces the size of sebaceous glands, somtimes destroying it over a long period of taking accutane, which i'm confused why it doesn't actually address SM.
- South korea Kobayashi treatment for destroy sebaceous glands, unfortunately from what i've read, they only treat infected areas with success. Hence with regards to SM, this can only destroy existing cysts and not prevent new ones from growing since the needle requires a certain sized pore.
- dr anderson selective photothermolysis; called their clinic but they have a rather mixed results on treating SM.
- dr sakamoto research on diode lasers to destroy sebaceous glands. Hair remove diode lasers are said to permanently destroy sebaceous glands, so if this is possible, we can use this procedure on potential parts of our body that the cysts would appear to prevent future occurance
Answers i still need to know
- i'm uncertain if destroying the sebaceous glands would even 100% prevent SM cysts from occuring
- what are the repercussion of destroying these glands, possible of increase rate of wrinkling?
- will the glands grow back themselves? i've had mixed answers on this thus far
The focus
We need to think out of the box. Like i mentioned gene therapy is not gonna happen in the near future for our condition hence a cure is not possible. But any possible procedure to Prevent and Eradicate SM cysts is our best option. Diet may or may not play a big part in developing new cysts but i'm sure as hell not ready to take the risk of waiting years for an improvement with a new diet regime(although im taking every possible step, started on non meat, not diary diet)
thus far laser procedures destroying sebaceous glands is the best route to pursue in my opinion. Other possible options of accutane, lifestyle change have been exhausted to little success on many online forums. Surgical removals are only a temporary way of dealing with this problem.
If anyone here is as dedicated and as serious as I am to take this fight, contact me.
There's alot of talk on this forum about creating a group to try to put your heads together to find a solution which like every other forum dies eventually, we're not doctors anyway. We can only fight for a possible control over this condition. Since our condition is rare, in medical science it's not worth the research time and money. However, i'm very serious when i say im dedicating my life to find a solution to this and i'm not giving up.
I need dedicated people with this condition to aid me in this journey. Be pro active, help me to research, email doctors, exhaust any possible probable solution.
***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use
Loading...
Here is an update on my research for anyone who is interested:
as you know it, I've only had SM occuring on my forearms over the past month, i'm 28 atm never had it in my life.
Genetic mutation
Steotocystoma Multiplex may not be a genetic mutation, there are cases where some people have it and it's causes are unknown although some doctors have mentioned it may be caused by Trauma / bacterial infection / Immunological events
- I'm going to test to see if my Keratin 17 genes has mutated or not. It's possible that if my K17 genes has not mutated, it may be a cause of outside factors such as diet/lifestyle, hence it might/may be controlled
Those of you who are not hereditary: i advise you to get a genetic test. This will narrow down a "fix" to our problem.
To those who have had it since you were young & hereditary: the cure is quite some time away.
pachyonychia organization is working on gene silencing on the k17 gene mutation. I've contacted them, to see how i may help. A cure for PC is also a very likely cure for SM by switching off the mutation in the genetic defect.
Controling Your current condition
Removal of cysts options: The cyst, sabeceous gland, cyst wall has to be all taken out together, removing the cyst only and not the wall(fat tissue) will cause the cyst to simply grow back. Which means, you'll scar yourself, grow back and scar again.
CO2: The Co2 laser is ablative and will cause scabbing and crusting and scarring. My current derm will use this as a last option, i believe for larger cysts, this is the best option. when i say large i mean more than 1cm ++.
Vein hook surgery: this is like a fishing hook, that goes in from one point, out the other and punctures 2 holes. the cyst is then squeezed out and a "tweezer" like instrument to remove the other parts. I'm not certain how good this is because it breaks up the cysts, making it not 100% that it will not grow back cause its likely that some of them is left inside. I'm done this for a few, but the derm wasn't too happy doing it and did a half bothered job, when i went home i had to squeeze out the rest of the contents myself. note: you need a very caring derma to do this, to make sure all the contents is removed. scarring is almost non existent.
Lasers:
Smoothbeam: Smoothbeam targets and attempts to destroy the sebaceous glands. Perroloco has his own machine, but only to a certain degree of success. The problem with this: The sabeceous gland is what produces the sebum that fills the cyst, however the problem lies in the defect in the pilosebaceous duct junction.
What this means is that if the sebaceous gland is not fully destroyed, the cyst may just form again. Also, sebaceous glands are hard to destroy since the whole follicle unit may just regrow it. The whole unit must be destroyed. To those who have an isolated condition, this may be a good "cure" to be combined with other lasers.
1450 and microwave lasers are experimental: Currently perroloco is testing it out with his doctor, laser to target fat cells, he has no success as of yet but his doctor is still adjusting the numbers to specifically target the problem. I believe this is very promising to control the condition because destroying the fat cells would also mean destroying the cyst AND the wall. which prevents the regrowth of the cyst.
there are other lasers which i'm discussing with my doctor at the moment, however it mostly targets only the cysts and the glands, which may not be the best option since i believe the cyst may return. (i will try this out next week or so maybe)
So the best bet right now cosmetically i believe would be a laser thats able to kill the unit, cyst walls which is lasers targeting fat cells. I'm pretty sure its very close to FDA approval but it is experimental. But it sounds logical and promising.
Other things i'm trying to control my condition
Essential fatty oils
non hormonal foods- no meat, fish/vegetables/fruits to build my immune system (my diet has been very bad the past year which one doctor said could be immunological to cause SM)
daily exercise
Plenty of water
Accutane(been on it for one and half weeks) - on 30mg a day, gonna continue for 1 month and see any results
i'm keeping records and a very close check to what is benefiting my condition. Like i said, if yours is a genetic mutation, it may be harder to control. If it's not, it may be a isolated case and very controllable. I will look into the both sides of this
If you guys are still watching this thread, and willing to everything possible. Please contact me or Perroloco. We need to exchange personal data. This is rare condition, and if you google SM extensively, you know not much research has been done on this condition since it's non fatal. I have the time to do this, but i need you guys to share with me personal experiences.
Loading...
i've created an account here so people can PM me, my email was removed.
Those interested about the genetics portion of this here's some interesting data i collected looking through various forums and these:
Hereditary 6/41
Since childhood 17/41
Since Puberty 24/41
late onset(began at a later age) 1 or 2(including me)
comments:
1 claimed he excercised alot, does not help his condition (had since childhood)
1 that is hereditary and since childhood does alot of exercise and eats healthy
1 inherited with natal teeth possible PC
1 sporadic noticed at age of 20 reduced alot of weight but cysts continued to grow
trends ive noticed: those that began at childhood / hereditary have little or no control over their growth of cysts.
those that began at puberty have a higher control via diet/lifestyle
now, i apologize if im digging into your personal experiences, but this is a way i can help everyone as well. Like i said, some is hereditary, some is sporadic, and as of the trend what i'm looking online, alot of it is sporadic. I believe that the way you developed SM, requires different treatments. in the same way some times how acne is treated, people respond to different treatments. Also for example, those who went through puberty and developed SM is likely hormonal triggered. their treatments should involve their diet etc. It's very possible.
i would really really like more data like if anyone went for genetic testing and found their k17 normal or not etc. so please, PM me.
Loading...
Update
21 days since i noticed my condition, 14 days since my diagnosis, 13 days since on Accutane, 4 days since lifestyle change
Accutane- I'm not sure about accutane, my skin feels dryer recently, could be the kick in on accutane. im taking 30mg per day my weight is 60kg.
Lifestyle change- i've been exercising an hour + a day, mostly cardio and stretching exercises to get more blood circulation
Diet- I'm on all fish diet like sardine high on omega 3, plenty of water, fruits, vegetables
Note that prior to my condition i've probably been having the worst lifestyle ever of unhealthy food and no exercise.
both large and small cysts seems to be going down in size, no new ones has appeared, those removed by vein hook surgery has not regrown.
I'm really not sure if it's the accutane, my overall lifestyle change, or the combination of both but my condition is suddenly improving a little.
next week i'm going to explore laser therapies with my derm that target sweat glands and sebaceous glands to destroy the remaining cysts and discuss if its possible theoretically to prevent new cysts from reappearing by targeting other parts of the body where SM is likely to spread.
Will update soon
Loading...
one more thing, to those who are skeptical about hollistic approach to health,
one of the clinical drug trials to suppressing PC, another type of mutation affecting teeth/toes/fingers but closely related to SM due to the same genetic mutation of the k17 is to lower the cholesterol level
cholesterol levels is also the main culprit of hormonal imbalance; and if you noticed, most people with eruptive vellus hair cysts, steatocystoma multiplex, ovary cysts, sebaceous cysts hits them during puberty(peak of hormonal activity)
this is an approach worth to try for those who had breakouts since puberty. (healthy lifestyle, no meat, just fish and your essential fatty acids, fruits vegetables water)
to those who had it since childhood and hereditary, im not certain if this approach is feasible and i have not really looked deep into that besides gene silencing
Loading...
Daily Logs 24 Feb:
2 weeks accutane: I did not know accutane causes purging and initial breakouts, now i know why i was getting chest and back acne breakouts. Breakout has stabilized few days ago, no new breakouts of acne. lips is getting very dry, face is dry. No dryness on body as of yet.
5th day on holistic approach: omega 3 supplements, fish rich on omega 3, water, vegetables, fruits. cardio exercises and blood circulation exercises 1-2 hours a day.
Daily hygeine: using gentle body wash with some light scrubbing.
comments:
the small cysts on my forearm seem to reduced in size. 1 disappear, another on the verge of disappearing. those removed by vein hook surgery 2 weeks ago has no recurrence. No new cysts as for now.
discussing laser options with my derma tomorrow.
Loading...
Daily Logs 25 Feb
I can feel the accutane effects on my body, my skin looks and feels dryer on my chest area and arms. the dead skin from vein hook surgery is drying up as well.
2 existing cyts, 1 very small on left arm and 1 medium size on right is softening up(if you have sm you guys know if you pinch it you can feel a hard ball inside) and appears less visible even when i pull my arm and tighten the skin.
no new cysts, no new regrowth on extracted cysts from vein hook surgery (i only removed 4 or 5 from each arm, i had about 12 on each arm to begin with)
switch from nimegan(same as accutane but some extra ingrediants that increases testosterone levels) to roaccutane today.
Spoke to my derm today,
she is more than willing to treat me. ive visited more than 5 dermas, very reputable ones and they all said "its not curable nor treatable, you have to live with it the rest of your life". This current derm has been more than helpful, she helpd email derms overseas for treatments they've tried on SM.
Discussion of laser:
She mentioned smoothbeam does not really destroy the sebaceous glands but more rather damages them. Which could be the reason why it doesnt work for some people and the cyst regrows. You have to destroy the cyst wall as well.
Another treatment called Ulthera which is used for skin tightening, ultrasonic device that you can target and adjust different layers of the skin that "melts" away fat cells. This is highly promising because what we want to destroy entirely is the fat cells which will prevent recurrence However, it's never been trialed on SM. There is a current clinical trial using ulthera for treating acne as well, however it's results will only be out end of this year. (strongly considering giving this a shot for my SM)
Loading...
Update(important)
Hi guys, it's me again, and this time it's a really big update. As you know it's been almost 2+ months since my diagnosis(via biopsy)
I DO have steatocystoma multiplex, this is confirmed. However,
As you guys know, i've done a ton of research, everything from lasers to food and diet.
One thing that has always been at the back of my mind, was why i suddenly had it suddenly at such a late age of 27. The one thing i knew i changed during the breakout of my SM on my forearms(20 on each forearm) was that i was on doxycycline for 3 months. 8 of the best doctors in singapore diagnosed me with SM, all of them said it could not be caused by doxycycline.
A doctor in Singapore; Dr Lim Kar Seng(anyone from singapore you can google him, he's from the dermatology practice) was doubtful it could do anything with it. Still, he did a skin patch test for me since he said no harm trying. He injected a small amount of doxycyline under my skin on my back, and got ready the patch of topical doxycycline to place over my back. however, the second he injected me, i could feel a hot sensation, which turned into pain like a knife just stabbed through my lungs, i was in so much pain i fell to the bed and i started to shake and go into shock. He quickly neutralized it and everything went away. It was the most horrible pain and experience ive ever had.
He said "wow....you are definitely allergic". So we confirmed my allergy to doxycyline but he wanted to put the patch over just to see if doxycycline topical could cause any cysts, as he was still neutral about an antibiotic allergy causing cysts.
2 days later, the injection point quickly formed a huge cyst. And he injected it with steroid and it went away after 2-3 days. We more or less confirmed the doxycycline allergic reaction was causing my steatocystoma multiplex. This is also why ever since i stopped doxycyline, i never had any new cysts formed for 2 months.
Why am i posting this?
I have probably researched SM more than anyone else. treatments, and this condition.
I'd like to share the treatments i've gone through here:
LASERS: Ulthera, technically to heat up and destroy the cysts within along with all the fatty walls and sac. did NOT help, at all
Smoothbeam, maybe only to control the cyst from growing further by reducing sebum production of the sebaceous gland, but other wise, did NOT help.
I'm very disappointed with the laser approach to SM. Honestly, i don't see anything else working.
ACCUTANE: It did help the softer cysts shrink, go down, did NOT entirely make it disappear though.
SURGICAL REMOVAL: A micro hand surgeon Dr Jonathan Lee, did the removal of the very deep large cysts. He was very skilled and the healing is going so well that i think it may not even leave a scar at the end of the day
LANCING: Using a large needle to poke at the very small cysts, 1-2.5 mm. Dr Lim Kar Seng did this for me, he made sure to scoop out the cyst, sac and the walls around. These left small hole scabs with some bruising which are healing well too. MAKE SURE you have a GOOD DERMA to do this. most Dermas i went to who tried to lance, either failed cause they miss the location, didnt go deep enough, or they just lance and squeeze, leaving the rest of the sac and wall behind which i had to go home and remove the rest of the contents myself by squeezing it freaking hard.
- most dermas, couldnt even be bothered to lance the small ones and just said leave them alone. For 1 and a half months, i was going literally out of my mind. On my left forearm i had a cluster of small 1-2mm cysts in a small area, which when i pressed, i could feel all of the 12 cysts rubbing against each other and i always almost vomited just feeling them. My point being; FIND A GOOD DERMA WHO IS SKILLED AND WILLING TO DO THIS.
Exercise, healthy diet omega 3's: I went on a freak nutritional diet for 2 months, water only, fish, vegetable diet, omega 3's. I'm really not sure if this even helped the slightest bit. It kind of seems like the accutane helped it more than anything here.
CONCLUSION AND POSSIBLE ALLERGIC REACTION TO READERS
As all of you know, SM is a very severely understudied condition. My point of everything is, to all you who have sporadic non hereditary cases; Please check if there is anything in your diet scheme that you're actually allergic to. I'm not sure if this may be a causative factor for any of you, BUT, all the doctors said it was not possible for doxycyline to cause my SM.
I understand the pain all of you go through, as i probably went through more, i suffered severe depression through this phase, so much lost hope and physical pain and idiotic doctors who are supposed to be reputably good. i actually spent every single day, 24 hours the past 2 months trying to find treatments or clinical trials to my condition. and the last possible factor, was the real factor. There has been NO documented case of doxycycline causing SM. So please guys, there is no harm checking if you're actually allergic to anything you are eating.
I want to continue to help. I understand the pain everyone here is going through. So if any of you need help from me, feel free to contact my email pasted few posts ago.
I thank God everyday i found a "cure" because of Dr Lim who has been so patient with me and not ruling out anything, and patiently lancing out my cysts properly.
Loading...
Loading...
it actually went flat, but there was still a lump which i had it surgically removed too
i did actually inject everything with steroid, which i ended up really sick and vomitting,
it didnt really help
the cyst formed, was on the biopsy steatocystoma multiplex
so eventually i had everything surgically removed
Loading...