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severe nodulocystic accutane cyst nodules cortisone

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#1 ughhhhh

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Posted 28 December 2012 - 02:50 PM

I used to only have minor problems with acne, easily spot treated. Then I got pregnant and my face got worse and worse (still just minor acne) and I was afraid to treat it with anything other than baking soda and tea tree oil.
When I gave birth I got a rare rash that covered most of my body. When that rash subsided, my face exploded. I didn't even know what it was, because I just had what looked like tumors covering my chin. I got 5 cortisone injections in two of them to bring them down, and now they are both much smaller hard knots but still very much there.
I was told by two dermatologists that I had severe nodulocystic acne and that I needed accutane. After putting it off for two months and trying to heal myself through diet and supplements (because I wanted to breastfeed), I relented and let myself be put on doxycycline for 6 weeks, which did nothing.
I am on my 6th week of accutane and have seen minimal improvement in my normal acne, but no movement whatsoever on these nodules/cysts. They are ruining my life and I feel like they are permanent features on my face. I'm starting to doubt my Dr's that these are treatable with accutane as I've never even seen anything like these in my months of searching on this condition. I'm starting to think some of these are epidermal cysts and need to be taken out, and they are causing me severe anxiety to not have ever seen anyone in my life with this.
This one on my forehead was injected once, went away for two weeks and came back. It is now hard to the touch..
The bottom one was the one injected 5 times, also hard to the touch and the last injection did nothing but make a dent and bruise. The circled area above it is a long (nodule?) that is so deep under the skin you dont even know its there unless you see it from certain angles.

The ones under my neck have been there for 4 months. The larger one was inflamed but went down with the decadron I was put on in the first 10 days of accutane. It is still there under the skin. The lower one has been growing for the last 4 months.

This one appeared after my first dermatologist injected a nearby much smaller cyst. This ballooned in the following weeks and has only had a little puss come out of it, when it was injected my derm said nothing was coming out of it and it only collapsed in half. It is hard to the touch. The longer circle is an area that was two hard spots under my skin for two months, that seemed to join and then drained. Injected but the area under the skin still feels puffy, even if its not red. Much larger than it looks.



I'm sorry for the novel here, but I am freaking out. None of these are even painful, they're just hard bubbles on my skin and I feel like they're never going to go away. I keep wondering if I'm on accutane for nothing because this isn't acne, its something else. I just want my life back, I want to enjoy my new family without seeing glimpses of my future as a lumpy fugly mom.


Edited by ughhhhh, 07 March 2013 - 09:39 PM.


#2 JWaltersRN

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Posted 28 December 2012 - 03:23 PM

I'm so sorry you are suffering through this! I can't offer much in the way of advice, its not anything I've ever seen except on you, and my husband. He has only one, right by his ear for the last year. He says it hurts sometimes, never "pops" or anything.
Just last week he got a monster of a zit on the border of this hard nodule (we call it his "tumor"). We applied 20% Salicylic acid to the monster zit and the next day started with hot epsom salt compresses. After an hour or so the monster zit came to a head, when he squeezed it, literally TONS of puss came out. He would push behind his ear, about 2-3 inches from the zit, and MORE came out. This was a Staph infection or something that lie dormant under the skin for literally a YEAR. the "monster zit" was just a new opening to the puss volcano lying beneath.
The "tumor" and monster zit continued to drain for several days. He would leave it alone and let the inflammation subside before applying more hot epsom salt compresses and going again. He now has only a small lump where the tumor was before. If it started out the size of marble, it is now a BB.
Maybe you should ask your doc for an incision and drainage. They can test the fluid inside to see what it would respond to, or determine if it is a solid mass that needs other intervention. At the very least, hot compresses may help to bring it to the surface so it can drain out for you.

Please let us know how it turns out. Best wishes!

30 years old
Caucasian Female
Medium Skin Tone
Cystic and Superficial Acne, Whiteheads, Pustules, Blackheads and clogged pores: OH MY!
Severe hyperpigmentation to cheeks and chin

Morning[/]
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO (started 11/1/12)
Moisturize with Hemp oil or Say Yes to Carrots SPF 15 moisturizer

Night
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO

200mg Spironolactone (started 12/19/12)
Differin .1%
Hemp oil or Emu oil for moisture



Weekly

20% Salicylic Acid Peel (once per week)
Manuka Honey after peel 

Manuka Honey and ginger once per week.


#3 ughhhhh

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Posted 28 December 2012 - 04:13 PM

I'm so sorry you are suffering through this! I can't offer much in the way of advice, its not anything I've ever seen except on you, and my husband. He has only one, right by his ear for the last year. He says it hurts sometimes, never "pops" or anything.
Just last week he got a monster of a zit on the border of this hard nodule (we call it his "tumor"). We applied 20% Salicylic acid to the monster zit and the next day started with hot epsom salt compresses. After an hour or so the monster zit came to a head, when he squeezed it, literally TONS of puss came out. He would push behind his ear, about 2-3 inches from the zit, and MORE came out. This was a Staph infection or something that lie dormant under the skin for literally a YEAR. the "monster zit" was just a new opening to the puss volcano lying beneath.
The "tumor" and monster zit continued to drain for several days. He would leave it alone and let the inflammation subside before applying more hot epsom salt compresses and going again. He now has only a small lump where the tumor was before. If it started out the size of marble, it is now a BB.
Maybe you should ask your doc for an incision and drainage. They can test the fluid inside to see what it would respond to, or determine if it is a solid mass that needs other intervention. At the very least, hot compresses may help to bring it to the surface so it can drain out for you.

Please let us know how it turns out. Best wishes!


The large patch of scars on my cheek was from one like that, which was very infected and finally subsided with draining and doxy. They tested that one because I was sure I had staph and they said no, just p acnes (never got a copy of that report) .I have some by my ears that drained and now they are smaller bumps but they remain. Everyone talks about their cysts that dont go away for two weeks, mine have been there for months! And the drs just say let the accutane do its job. Every time I get a shot I end ep with a giant bruise and they barely do anything Posted Image

Edited by ughhhhh, 28 December 2012 - 04:17 PM.


#4 JWaltersRN

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Posted 28 December 2012 - 04:20 PM

hmmm. these dont sound like normal cysts though. I get cysts regularly, and they hang around for months. They never swell up into big nodules though. (Theres pics on my log if you want to see what I mean by "cysts") What I'm seeing in these pics looks like my husband's thing.

I would ask about hormone management. Accutane might not be effective on these for you. I never got cysts at all until after my son was born. 2 daughters and I was fine. Have a boy and BOOM too much androgens forever! grr! DO you happen to have any menstrual issues, ovarian cysts, or anything like that?? Could be worth talking to your GYN about as well. Having babies jacks stuff up!! (i'm only half kidding)

Cortisone only works on inflammation. If these dont respond to cortisone injections, then they aren't inflammation. They are something else. Have you gotten a 2nd opinion?

30 years old
Caucasian Female
Medium Skin Tone
Cystic and Superficial Acne, Whiteheads, Pustules, Blackheads and clogged pores: OH MY!
Severe hyperpigmentation to cheeks and chin

Morning[/]
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO (started 11/1/12)
Moisturize with Hemp oil or Say Yes to Carrots SPF 15 moisturizer

Night
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO

200mg Spironolactone (started 12/19/12)
Differin .1%
Hemp oil or Emu oil for moisture



Weekly

20% Salicylic Acid Peel (once per week)
Manuka Honey after peel 

Manuka Honey and ginger once per week.


#5 Ind1g0

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Posted 28 December 2012 - 04:21 PM

This is very interesting indeed. What exactly is your diet like? What are your supplements like? What was your digestion like before pregnancy? How was your menstrual cycle before and after pregnancy? These answers will help me help you.

I am sorry that you are pained by this and I very much so empathize with you. This site is the best place to come for information!!

#6 leelowe1

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Posted 28 December 2012 - 05:03 PM

If you are on accutane, realise that your skin is very sensitive and will bruise more easily so any type of procedure you have (such as shots) can make things work. You won't know if accutane will work for you if you don't take a full course so try your best to get through your 6 month course as best as you can.

Since things started to get worse duing your pregnancy, hormones seem to driving your acne ao after your accutane course, you may want to look into hormone testing to see if spiro or BC is an option for you


My heart goes out to you during this time. I am on day 75 of accutane and i am still going through an IB so don't be alarmed if your acne worsens even up to the 5th or 6th month.

Good luck and congrats on the baby.

It's a rocky road but like everything else in life, there is always a beginning and an end.  Here's to finding my end.

 

God is good to me..........more than I deserve.

 

James 1:2-4

Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing.


#7 ughhhhh

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Posted 28 December 2012 - 05:07 PM

No I've never had menstrual issues, I got pregnant in our second month of trying after BC and my cycle had gone back to exactly how it always was. I had complete hormone and CBC and no issues there either, my OBGYN didn't think anything was wrong, she suggested accutane herself as well. I was suggested to go back on BC at about 6 weeks Postpartum so I didn't get my natural cycle back yet.
I've seen two dermatologists and my current PA with the same diagnosis. That I absolutely needed to be on accutane. When I got my really bad cyst drained (and it drained for weeks) I asked if there was anything else I could be doing to help it and they said that I made the right decision on accutane and that it would only help.
My diet has changed considerably for the better since the birth (I ate well, lots of yogurt and salads but sometimes cookies etc), lots of veggies and berries, chicken/pork some fish and almonds. Completely cut out dairy for 3 months with no change, still not going back to it and have switched to almond milk. I have lost a considerable amount of weight due to this (15 lbs under pregnancy weight).
My digestion is good, no real issues to speak of, though my anxiety has made me a little bit of an undereater and I'm working on that. I feel fine otherwise, I actually don't get body acne which I used to before pregnancy.
I took prenatals throughout the pregnancy along with fish oil. They did not contain iodine I believe. I now take zinc, C, milk thistle, fish oil/flaxseed with no considerable change.
I have also developed dermatographism (skin writing) which I did not have until 6 weeks post partum. My mother also developed this though so I dont know if its related.

Sasch83 - I am planning on finishing my course, I'm just worried that I'm being lied to by the derm that accutane will help or that they dont really know what it is.

This was my face at 4 weeks post partum (with makeup)
you can see the massive swelling on my chin and cheek, the chin one was the one I had injected 5 times. It was never red, just swollen facial tissue.


Edited by ughhhhh, 07 March 2013 - 09:41 PM.


#8 JWaltersRN

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Posted 28 December 2012 - 05:19 PM

Sounds like you've done your due diligence. Now just have to wait to see if the Accutane will do it's thing. This type is so hard to cope with and can be such a struggle. Keep your eyes on the prize, enjoy that baby and wait it out. We will all be here to support you, and look forward to the progress reports! Lots of hugs!

30 years old
Caucasian Female
Medium Skin Tone
Cystic and Superficial Acne, Whiteheads, Pustules, Blackheads and clogged pores: OH MY!
Severe hyperpigmentation to cheeks and chin

Morning[/]
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO (started 11/1/12)
Moisturize with Hemp oil or Say Yes to Carrots SPF 15 moisturizer

Night
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO

200mg Spironolactone (started 12/19/12)
Differin .1%
Hemp oil or Emu oil for moisture



Weekly

20% Salicylic Acid Peel (once per week)
Manuka Honey after peel 

Manuka Honey and ginger once per week.


#9 ughhhhh

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Posted 28 December 2012 - 06:07 PM

I guess that it what I will have to do. It is hard not to spend a lot of time looking for someone who shared this experience and came out on the other side, and its hard not to want to visit every single dermatologist in the area but it is quite expensive for a visit. I have to go back to work in 6 weeks and I just can't imagine what people will think of me...

#10 JWaltersRN

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Posted 28 December 2012 - 06:12 PM

I assume you are a nice person, and most adults do understand acne. Only the most tactless, assholes dont. I'm sure people wont think anything about you. Just bring baby pics, cuz that's what your coworkers want! LOL
I'll poke around as well and see if I can't find other info.
Keep your chin up and your smile on!!

30 years old
Caucasian Female
Medium Skin Tone
Cystic and Superficial Acne, Whiteheads, Pustules, Blackheads and clogged pores: OH MY!
Severe hyperpigmentation to cheeks and chin

Morning[/]
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO (started 11/1/12)
Moisturize with Hemp oil or Say Yes to Carrots SPF 15 moisturizer

Night
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO

200mg Spironolactone (started 12/19/12)
Differin .1%
Hemp oil or Emu oil for moisture



Weekly

20% Salicylic Acid Peel (once per week)
Manuka Honey after peel 

Manuka Honey and ginger once per week.


#11 DC-girl

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Posted 08 January 2013 - 01:03 AM

hmmm. these dont sound like normal cysts though. I get cysts regularly, and they hang around for months. They never swell up into big nodules though. (Theres pics on my log if you want to see what I mean by "cysts") What I'm seeing in these pics looks like my husband's thing.

I would ask about hormone management. Accutane might not be effective on these for you. I never got cysts at all until after my son was born. 2 daughters and I was fine. Have a boy and BOOM too much androgens forever! grr! DO you happen to have any menstrual issues, ovarian cysts, or anything like that?? Could be worth talking to your GYN about as well. Having babies jacks stuff up!! (i'm only half kidding)

Cortisone only works on inflammation. If these dont respond to cortisone injections, then they aren't inflammation. They are something else. Have you gotten a 2nd opinion?


I want to comment on this because that's not totally true.
I had 1 cyst injected 3 times and the 1st time it did Nothing, the 2nd time it stayed down for only a couple days and swelled up again and the 3rd time it finally stayed down. It's been 10 days and it's still flat so it finally worked.
I've heard of cyst getting injected up to 6 times; so it doesn't mean that it isn't acne or cysts; it just means they are very inflamed.

#12 JWaltersRN

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Posted 08 January 2013 - 09:39 AM

DC- girl: you're right. Sometimes it takes multiple shots to work, however usually if one doesnt work, they try another type of steroid injection. This is not always told to the patient. Doctors use many types of injectible steroids: Cortisone, Cortisol, Betamethasone, Dexamethasone etc... Sometimes its not responsive to one type. Thanks for pointing that out!

30 years old
Caucasian Female
Medium Skin Tone
Cystic and Superficial Acne, Whiteheads, Pustules, Blackheads and clogged pores: OH MY!
Severe hyperpigmentation to cheeks and chin

Morning[/]
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO (started 11/1/12)
Moisturize with Hemp oil or Say Yes to Carrots SPF 15 moisturizer

Night
OCM: 70% Castor Oil, 30% Hemp seed oil, 5 drops Lavender EO

200mg Spironolactone (started 12/19/12)
Differin .1%
Hemp oil or Emu oil for moisture



Weekly

20% Salicylic Acid Peel (once per week)
Manuka Honey after peel 

Manuka Honey and ginger once per week.


#13 readytosmileagain

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Posted 08 January 2013 - 09:51 AM

Where do you live?
If your acne resulted from giving birth, its hormonal, period. I think you said they did the entire CBC scope but get your thyroid checked before you go on accutane. Also, see if anything is funny with your Candida levels (yeast growth). Because your acne is very much inflamed and it hurts, something is going inside and I would suggest you really look everywhere before you go on accutane - the pill will help, im 90% sure so you will be back on that shortly, thank goodness. and i get (as a former accutane user myself) why they want to get you on very soon because it will hopefully help with any future damage to your skin as far as scarring so PLEASE whatever you do, do not pop anything... PLEASE. Im going through scar treatments now and its a nightmare. Be very gentle with your skin.

Everything will be okay, keep looking for answers with doctors - try a nutritionist and get your thyroid checked.

we are here for you

Edited by readytosmileagain, 08 January 2013 - 10:01 AM.

Am:
Cetaphil
ceraVe lotion

PM:
Cetaphil
ceraVe Lotion
Differin


wash my face with cetaphil before and after working out
sometimes add Glytone - mild gel wash to the regimen and then Glytone alphy hydroxy lotion at night

Finished my Accutane Course in August 2010!!

#14 ughhhhh

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Posted 08 January 2013 - 12:37 PM

Where do you live?
If your acne resulted from giving birth, its hormonal, period. I think you said they did the entire CBC scope but get your thyroid checked before you go on accutane. Also, see if anything is funny with your Candida levels (yeast growth). Because your acne is very much inflamed and it hurts, something is going inside and I would suggest you really look everywhere before you go on accutane - the pill will help, im 90% sure so you will be back on that shortly, thank goodness. and i get (as a former accutane user myself) why they want to get you on very soon because it will hopefully help with any future damage to your skin as far as scarring so PLEASE whatever you do, do not pop anything... PLEASE. Im going through scar treatments now and its a nightmare. Be very gentle with your skin.

Everything will be okay, keep looking for answers with doctors - try a nutritionist and get your thyroid checked.

we are here for you

Hi, I am living in California. I did have acne while pregnant, but not nodular cystic. I did have my thyroid checked and that came out fine as well. I don't know how to diagnose candida, but I have not had any yeast infections in my entire life, even while on 6 weeks of doxycycline and I didn't get thrush while breastfeeding, etc. I've been back on birth control for three months and most of my normal acne has cleared up, whether due to accutane or bc I don't know.
I actually believe this acne was a direct result of the rash that I got because it occurred immediately after. Drs do not really know what causes the rash but it is suspected as an allergy to stretch marks or the baby. my body went into overdrive and the rash covered my entire body. It caused a deep infected cyst
On my cheek ( where most of that scarring is) and then the rest of these popped up and have taken months to go away or even go down.
I'm already on day 50 of accutane, I can't live like this trying different treatments while these things are distorting my face. I am eating much healthier than I ever have and lost weight. It's very upsetting to hear that no one thinks accutane will work at all? Many women get acne in pregnancy or postpartum but it clears as their hormones reregulate. I unfortunately have a much more serious form of acne so it needed help to clear, at least that is what my derm says.
I haven't gotten any new nodules since this happened, they are just taking forever to go away and leaving scars.

Edited by ughhhhh, 08 January 2013 - 12:44 PM.


#15 readytosmileagain

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Posted 10 January 2013 - 09:38 AM

Oh girl - dont worry, it will work! Accutane is a dream come true for bad acne - i was right with you - hopefully being on the pill and accutane will clear your face and regulate your hormones and u will be back to feeling amazing again. Enjoy the lack of oily skin, the only washing our hair once it a while and seeing the transition take shape.

My suggestions were only to help give you other things to think about but I didnt read your posts correctly so im happy you went in the direction you did! Patience and just enjoy your little one and there will be a day when you will get to look back and say, wow, i go through that, im stronger for it, and smile.

Posted Image Good luck! Keep us posted

Edited by readytosmileagain, 10 January 2013 - 09:39 AM.

Am:
Cetaphil
ceraVe lotion

PM:
Cetaphil
ceraVe Lotion
Differin


wash my face with cetaphil before and after working out
sometimes add Glytone - mild gel wash to the regimen and then Glytone alphy hydroxy lotion at night

Finished my Accutane Course in August 2010!!

#16 alexisc

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Posted 16 January 2013 - 11:13 AM

Flaxseed oil is highly estrogenic and can cause massive breakouts for some people, fish oil is also known to cause cysts in people who take it. I would cut those out of your regimen for at least a few months and see if it helps your situation. I know whenever I take either I get massive cysts and my face is not prone to cysts at all.
The estrogenic properties of the flax oil might have swung your hormones very out of balance, you might want to try progesterone cream or natural herbal supplements (vitex, saw palmetto etc.) to help them get back to where they should be. In any case I would say the cause is probably hormonal.

Also, have you tried cutting gluten? Trying the paleo diet for a few months? These things tend to really help people, especially if they are gluten intolerant. Worth a shot!

Love and accept yourself for exactly who you are right now. 

 

25, female, moderate acne since age 12. 

Accutane at least 6 times.
Intolerances: corn & wheat & alcohol.

100% clear, if I follow the diet.

"the absence of flaw within beauty, is itself a flaw."


#17 ughhhhh

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Posted 16 January 2013 - 03:50 PM

Flaxseed oil is highly estrogenic and can cause massive breakouts for some people, fish oil is also known to cause cysts in people who take it. I would cut those out of your regimen for at least a few months and see if it helps your situation. I know whenever I take either I get massive cysts and my face is not prone to cysts at all.
The estrogenic properties of the flax oil might have swung your hormones very out of balance, you might want to try progesterone cream or natural herbal supplements (vitex, saw palmetto etc.) to help them get back to where they should be. In any case I would say the cause is probably hormonal.

Also, have you tried cutting gluten? Trying the paleo diet for a few months? These things tend to really help people, especially if they are gluten intolerant. Worth a shot!


If Flax/fish oil were causing these cysts, would I get more or would it just cause these current ones to not go away? I am no longer breaking out, I just have these lumps that do not decrease in size. I got hormonal testing done while I was taking supplements and they came out fine.
I am currently dairy, gluten and soy free (dairy for months, gluten and soy for a week now). I am actually doing the whole 30 diet since I'm so desperate. Have been pretty much paleo for a while now. I'm starting to think these aren't acne but my derm won't listen.