Is isotretinoin a cure? - Personal Journey (Part 2)

I was prescribed with Isotretinoin or more commonly known as Accutane for my acne last December. Actually, another purpose for me getting on the drug is to test its effects on my steatocystoma multiplex (SM) cysts.

I'm currently still on Isotretinoin and am planning to take it till Jan next year. I am on a generic version labeled Acnotin. The dose I'm on is pretty low; 20mg a day, so it's alright to take it for a longer period. The total duration would be a little over a year with a cumulative dosing of 130mg/kg, sufficient to eradicate my acne I hope! Haha!

 Generic version of Accutane, Acnotin 20mg

Back to SM. So far, there has been not much change with the cysts. They do seem to be closer to the surface, but that is probably due to the thinning of the skin caused by Isotretinoin. The cysts seem to be softer. A few (about 2 - 3) cysts has become inflammed but not erupted through the skin, and then they seem to slowly get reabsorbed and fade away. Weird, I know. Inflammations also take a much much quicker time to heal.

Isotretinoin 'works' on that very few cysts, depending on how one sees it. The number of cysts remain much the same and the effect is so limited that I have to say it is not a cure - all solution that one wishes for. However, a full conclusion can only be made till a few months after I finish the course on January.

Is isotretinoin a cure? (Part 1)

My research on the web for isotretinoin as a potential cure / treatment for steatocystoma multiplex didn't seem to be that promising. Most medical articles have shown varied results on the use of isotretinoin for the treatment of SM.

http://www.ncbi.nlm.nih.gov/pubmed/3456886
http://www.ncbi.nlm.nih.gov/pubmed/3197445

The first article states a possible adverse reaction with isotretinoin use, while the second shows that could be a possible delayed effect on the shrinkage of cysts.

Can isotretinoin or as it's more commonly referred to as accutane be a possible treatment of SM, aiding in the shrinkage and even full eradication of SM cysts? Personally, I have my doubts on that. Even so, I would guess only a small percentage of SM sufferers would see any beneficial effects while on isotretinoin.

Doxycycline and Steatocystoma Multiplex

After having diagnosed with SM, you know... one gets kinda paranoid and start thinking of all possibilities that may induce even more cysts. (lack of sleep perhaps? or maybe food allergy or even detergent???)

Anyways, I have been reading the forums and came across this post on a SM thread on Steadyhealth.

The person mentioned that his SM is caused due to Doxycycline allergy, and guess what!? I have recently been prescribed doxycycline for my acne!

My doxycycline tabs!

To cut the long story short, no, Doxycycline has no effect on my SM whatsoever, but that is not to discount the post from Steadyhealth above. 

What I gather from this is that for the majority of SM sufferers, external factors would have minimal effect on the condition as it is genetic. (so don't over think!) However, for those with sudden spontaneous appearance of SM cysts, then it may be an allergic reaction and thus a cause for concern!

Anyways, should you have any doubts, always consult your dermatologist (or you may choose to email me :) ). More often than not, they will tell you it is genetic. 

A Case Report

Hi all, I have read through this case report on this 19 year old boy with steatocystoma mulitplex, and found it to be quite helpful to those who wants to know more about the condition. I have enclosed the link below.

http://www.nursingcenter.com/lnc/CEArticle?an=01412499-201303000-00004&Journal_ID=849729&Issue_ID=1534302

Treatment options

It's been sometime since I have updated, sorry all but I'm kind of busy lately. Not to worry though, I will make it a point to continue to update this space.

I have come across this specific method for the extraction of the cysts. I will attach a link to the pdf stipulating the method below. You guys can discuss with your dermatologist regarding this extraction method. It seem to be a fast way (about 1 min per cyst), and outlook after surgery is good. Hypopigmentation with little recurrence, as the extraction method involves the scrapping of the sebaceous glands and extraction of cyst wall.

Of course, I won't be undergoing this just yet. But definitely I will discuss this with my derm should I seek further treatments.

To those who are interested the link is as such:

http://www.pachyonychia1.org/Bibliography/PDFFiles/Lee,%20S.%20(2007).pdf


SM is not the end of the world, we can overcome this together :)

New Bumps!

Hello!

Recently, I have found some new cysts on the upper portion of my lower arm. Damn those bumps!

Until next time!

What is Steatocystoma Multiplex?

Hi guys! It's been awhile since my first post, sorry for the late second post! I have been kinda busy lately, and thus contemplating updating this space. Another reason is I don't really like to talk about my SM, I just like to be busy (or doing nothing sometimes) to forget that I have SM.

So... the question is, what is Steatoycstoma Multiplex? (SM)

To answer the question simply, it is a hereditary, sometimes sporadic condition, where multiple cysts ranging from about 1mm to 4mm manifests itself usually on the extremities, namely the wrists, chests, abdomen, inner thighs, armpits etc.

Usual manifestations would be on the wrists, armpits, chest and abdomen areas. However, where sebaceous glands exist or are in abundance, cysts can manifest in those areas. (Good thing is those pesky cysts would not be able to grow on the soles or palms!)

My own personal SM started when I was undergoing puberty (about 14 years of age). I would notice those weird bumps under my wrists, and probably put it off afterwards, thinking that it was a normal thing for people to have. My SM "erupted", meaning to say it started to spread when I was around eighteen and a half. New bumps started to appear on my abdomen area, then slowly on my back and chest. During the "eruption" period, the bumps on my wrists started to grow more prominent as well. Now, I have them mostly on my back, abdomen and wrists, with some sparingly on my chests, armpits and approximately less than 5 on my lower neck area.

 Cysts on my wrist; under normal lighting.

 Cysts on my wrist; skin taut under normal lighting (Close up)

Cysts on my wrists; skin taut under bright white light

This led me to think that there could be a dormant phase in Steatocystoma Multiplex when it first starts to manifest itself, and then an "eruption / flaring" phase where cysts start to appear in other areas of the body. I would also like to believe that as one is older, the spreading of SM cysts start to diminish. This would be true for most conditions, there would however be exceptions as from some cases online.

The "eruption / flaring" phase tends to differ in different individuals. I have a friend (a little older than me) who has the same bumps under the wrist (he has no idea he has SM; just finds the bumps weird), however his SM does not seem to have "flared up" yet. Thus, the manifestation of SM differs in individuals, which might be due to environmental factors or genetic make up.

As can been seen from the photos above, the cysts appear quite small (generally about 1mm to 4mm, tho some tend to clusterfuck together!), therefore I would deem them to be pretty manageable. A good dermatologist should be able to extract them out permanently with minimal scaring. However, my chest area is very prone to scaring and the cysts there are abit larger though lesser in quantity. Again, different individuals will have different manifestations, including size, quantity, areas and growth of cysts.

This is a poorly understood condition, therefore I hope this blog of mine will exist as a platform for all SM sufferers to come together and share their experience. I hope you all will stay with me throughout this entire journey. I know we need the support of one another. My next few posts I will be posting more about SM. Toodles! :)