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My acne: Moderate, nodulocystic (since 5 years, including epithelial-lined sinus tracks for half a year in the past - that is classified as a severe, when I was a teenager I had pustules acne and then it turned into nodulocystic). Several painful cysts (sometimes huge) can show up on my neck and chin and stay there for weeks or months - always in the same places. Another weeks can be quite okay or even 100% clear. Also mild acne on chest and shoulders - that is not so problematic and easy to treat with antibiotics (but then it returns). Usually gets better when having more sports and much better when going on vacation to the desert. Unfortunately not this winter. Cysts go always very bad after serious colds, and often after having milk :(
My treatment assumptions: Keep dosage not to high. I am afraid of side effects especially in 4 areas:
- hair which are thin and not too strong already - before taking Isotretinoin,
- dry eye problems, which I already have (mild),
- mood - last year had quite serious depression,
- strong backaches - which I already have periodically becouse of narrowed spaces between vertebra and my office job.
My dosage plan:
CODE
Month Days Daily Dosage [mg/kg] Monthly Dosage [mg/kg]
----------- ----------- ------------------------ -----------------------------
1 30 0.5 15
2 15 0.75 11.25
2 15 1.0 15
3 30 1.0 30
4 30 1.0 30
5 19 1.0 18.75
TOTAL DOSAGE: 120
@ 78kgs = 16 boxes x 30 tabs a 20mg = 550 EUR
Start: 10 January 2007. Dosage: 40mg / day @ 78kgs = ~0.5mg/kg/day. A week ago started to use antibiotic gel on my cysts and going to continue for first 4 weeks. 2 small but hard (very deep) cysts, inflammation on neck and chin. Looks like something more serious was going to start. Shoulders and chest also not clear - lots of "red points", which can get worse.----------- ----------- ------------------------ -----------------------------
1 30 0.5 15
2 15 0.75 11.25
2 15 1.0 15
3 30 1.0 30
4 30 1.0 30
5 19 1.0 18.75
TOTAL DOSAGE: 120
@ 78kgs = 16 boxes x 30 tabs a 20mg = 550 EUR
Week 1: Istoretoin started to work just after 2 days. Dry lips, dry eyes, dry face - its irritating for me, and I feel afraid of the strength of the pills. Acne stays controlled. I believe that if not this drying effect of isotetoin it would get much worse at that time. I started using lipstick, day and night face creams for elderly women :) - they work great, as they are well dealing with so dry skin. I also use lots of stuff for my dry eyes. I did my blood examination after a week of taking the pills. It looks like everything is okay, but I have "good" cholesterol very close to minimum limits. Will have to take care about that.
Week 2: My acne is still well controlled. One of the small cysts got almost flat. I am still getting dry more then expected. My hair becomes dry and I got very strong dandruff (I had no one for years). I have changed my shampoo for the one for dry hair and cut my hair :( Now I'm almost bold. My face, especially nose is peeling. Shaving is difficult and painful. It completely irritates my face... now I am really red and I feel uncomfortable going to work. My eyelids hurt with every blink - their ends are pink and dry - I bought good herbal eye cream for that - it helped just after one day. Since then I am using eye cream (but not the strong one, just moisturizing one)
Week 3: Sudden change. Just in a few days all side effects are getting much more mild, but unfortunately my acne gets worse. One of the cysts stays flat, the other grows big! It hurts. At that time I started to be not so strict about getting pills with food containg fat (as I did not know the rule). That surely has decreased levels of isotrotein being accumulated in my body :(
Week 4: I got ill at the beginning of the week and my face went much worse. Several red points. Another big cyst is growing fast on my neck. Acne on my shoulders is bleeding... Fcuk. It's bad, but still it is not worse then it can be. I stopped using antibiotic gel. It looks like it doesn't help much (as usually).
Week 5: I have completed my first month on istotretoin. 2 big cysts bring lots of pain to me, two other small cysts just started growing, one is bleeding. I increased dosage to 60mg / day @ 78kgs = ~0.75mg/kg/day. After 2 days I feel pain in joints and my back hurts. Maybe because after a week of long hours in the office all evenings laying ill in bed I was jogging for 40mins/6,5kms two days ago, and was drinking tequila all night yesterday. Anyway my mood is very good (despite hangover), eye, lips and face dryness are well controlled and I have no more problems with dandruff. I also don't have to wash my hair daily :) I should also start taking vitamin E, and calcium probably...
Re-setting my daily routine:
- Isotec (Isotretinoin): morning: 1x20mg, evening: 2x20mg
- Vitamine E: 400mg (to increase Isotretinoin absorbtion)
- Omega 3 fish oil fats: 1000mg (to increase Isotretinoin absorbtion and increase "good holesterol" levels)
- Breakfast and dinner with fats - not only apples (to increase Isotretinoin absorbtion)
- Vitamin B Compositum (B1 9mg, B2 15mg, B6 15mg, PP 120mg) (just because I don't want to take multivitamin with vit. A)
I counted that the new routine and 1.5x higher Isotretinoin dosage should increase levels of Isotretinoin in my body by up to 3 times comparing to the levels from the first month! I hope that my body will manage it.
End of week 5 where lots has hapened. My dry skin and lips are not a problem any more (but still dry). I have to use drops for my eyes every 2-3 ours, otherwise I see strong flares. The problem is that I wanted to train next for months (jogging 40min 2x/week, yoga 2x/week, gym 2x/week) and it looks that I have to revise those plans. My muscle and joints do suffer, but it is not strong enogug to stop sports completly, but I've just read that... it can increase risk of serious bone deseases in the future. So I am affraid.
And my face: 5 places where something started to grow deeply two days ago when I have reseted my daily routine - very painful, but not it has stopped and lets hope it will no show up to the surface.
A am reading a lot, and maybe I should go on higher dose...
Week 6:
Starts 15/02
16/02: 5 cysts >1cm diameter are already grown and starting to decline. I called my doc and he dosn't want me to go with dose up to 1mg/kg/day. Hm... I think I should. My skin is not too dry any more, and eyes need less and less drops every day :) Unfortunately pain is everywhere, but still managable, I still run a lot. And I've just noticed that my last bleckheads are disapearing. Great!
19/02: Huge cysts are getting dry, but small 3-4 dots of standard acne (white dots) have appeared on my face, that was uncommon in last months. Side effects are gone, only a bit dry skin/lips/eyes. I can not associate my mild muscle pains with the pills, rather with bad weather. After all my face and neck looks wore then when I started taking the drug. Going to increase my dosage from week 7. I was drinking havely on weekend so I skipped evening dose (60mg). I am completing this week with face like I've never taken Accutane. Lots of small but firing cysts around my neck. Only black heads have disapeared.
Week 7:
Starts 22/02. Dose increase up to 80mg / day @ 78kgs = 1mg/kg/day. As all side effect went really mild and my acne was still not moving better (actualy it was worse then at the very beggining of the treatment), I have decided to increase my daily dose. I think my doctor will not like it, as he is low dose protagonist.
23/02: My skin gets dry, I got dandruff again, muscle pains, and it looks like my sight is a bit worst in dark room where I work. I also have new (or maybe more visible) side effects: pain in my chest, feeling like I can not breath deeply, I could say it is more then mild. Not a problem yet, but I hope it will be gone in a few days. But cysts are getting dry very fast. This week I have no time for sports, at all :(
24/02: I feel dizzy. My knees realy hurt. I had problems with getting asleep. I never had problems of this kind. In the morning I've called my doctor and I am back on lower dose (75mg/kg). But just 2 days later I will try to go back to 1mg/kg. I've also started using silimarin regularly.
Week 8:
Starts 1/03. After having fatty meal on sunday I had liver problems for all day, but extra silimarin dose, apples and lemons helped. Most of the week on 1mg/kg. I skipped one dose when I was drinking alcohol in the evening.
Week 9:
Starts 8/03. I starded not well. I had great sausages, a kind of fatty ones. Normaly I would have some problems with that, but now this is my third day when I feel ill, and all the symptoms are like my liver was in a bad condition. And it has been already three days since I have dark green excrements. Upps, thats strage. I called a doctor, and he can't explain. Just says that it should not be any illness. I hope so.
12/03: Here I plan to visit my doctor. Let's sumarize how am I:
1. What is good?
- no black heads on my nose and face, great :)
- my hair is not oily any more, I can wash it once a week insead of daily, great :)
2. What about my acne?
- it is more less in the same condition as at the beginning of the treatment 2 months ago :(
- I still have a number of painful cysts :(
- it got much worse yesterday, when I skipped just I dose and had serious liver originated problems stomach problems :(
3. What about my side effects?
- dry face is okay now and I don't have to use creams everyday :)
- my eyes are better - I have to use drops just 3-4 times daily :)
- my lips are quite okay, but still require using lipstick, now just 3-4 times daily :)
- my knees hurt, just a bit, but all the time. I never had it before. I know this kind of feeling from the short time after I broke my arm and I had the same type of pain for the first year or two especially when bad weather came :(
- my stomach is bad, I don't feel I want to eat. That looks like liver problems :(
- I have dark green excrements with no change in diet - hope that it is not connected to my liver problems :(
- since 2-3 weeks I have to go to restrooms quite to very often and can't wait :(
- I smell realy bad. In the past I had very smelly sweat, and now it's back, even stronger. That's a serious problem. That's maybe becouse my body tries to help my dry skin and I swet more intensively :(
- bad body circulation - I had this problem like 10 years ago, and now it is back - cold legs and hands for most of the time :(
Week 10:
Starts 15/03. I have changed eye drops and it looks like I got some irritation. Off, it doesn't want to go away. I just see not sharp enough to read by left eye (the only one I use). That's annoying. I've spend 4 days on a weekend in Paris walking like 12h a day in sun/wind/rain. My face was totaly red, and using factor 20 did not help. Now my skin is very dry on my hands and arms and I got lots of red dots on my arms. Maybe thats irritation from my new deo. Of course it woulnd't happened if not isotretoin. Other things:
- stomach: now okay
- frequent toalet usage: no change
- face skin: dry but managable
- eye lids: gots irritated/red/painful when no cream is used twice daily
- headache: no more (I had some before)
- knees: I had some after 2nd day of 20h walking, but that looks drug independent
- black heads: occasionaly I get some brown and huge
and my acne: 5 irritated red points on my face, flat but occasionaly bleeding (skin is dry) another 5 red points on my chest, some on my arms, all cysts but one on my neck are flat. Just one ex-huge-cyst place under the skin with blood and other stuff is left. I believe it shouls be flat in a week or two.
Dream target for next 2 weeks (when I am planning to croos half of the total dose):
- all cysts flat
- all red points not red and blooding any more
Fcuk, the last day of a week is as follows:
- my eyes are swollen and eyelids dry. That causes my eyes being irritated and red from scraches
- my acne got worse again...
- I feel that the dose is too much for comfort of my body and not enough for my acne;
Week 11:
Starts 22/03.
22/03 First day of the week and not a great day. People start questioning me about my red/purple and huge (swollen) eyelids. Again I had fatty meal (just chinease food) and I can't handle it. Skin on my arms is peeling off. Two new huge cysts started to grow - over 1cm in diameter each. Now I have 4 big and around 10 small red irrytated but flat points aroung 0.7cm in diameter). In the evening I had huge diarrhea. Total cleaning of my stomach.
23/03 Wow. The diarrhea helped a lot. I woke up with CLEAR FACE - all cysts went flat just in one night. And at the same time side effects went mild.
25/03 Victory. 3nd day all cysts 100% flat. It doesn't mean that they disapeared, but they are flat and not irritated any more. I suppose that I will have to wait several weeks till my skin gets natural color in those places. Now that looks like old pinki wounds.
26/03 No victory. My cysts are not flat any more, and some of them are irrytated. No problems with side effects.
Week 12:
Starts 29/03. Here I will croos 1/2 of total dose. If my side effects will be so much problematic at this time I will lower the dose.
2/04. After several (six) days with no side effects (just some dry lips, skin and eyes) I was so happy that the situaltion is stable and acne slowly but disapearing. Unfortunately yesterday night I I was frightened when I looked at my eyes in the mirror. Opps the eye problem is back. Skind is good again, but in addistion I have some muscle / bone aches all around the body. My skin is not 100% flat, but going in a good direction.
4/04. A bad day. End of week. Time for summary:
this is a half of my dose! (60mg/kg)
Acne:
- 4 cysts trying to grow on my neck. Of course they will not get through, but I hate the hate the pain and feeling that is is "going" out
- other places on my neck are not totally flat, there is something under the skin. I can't feel pain but it can grow (or get flat and dry) just in few hours
- one cyst is growing up on my back (lower part). In this place it rarely exploits at the end. But I hate the feeling.
Side effects:
- I don't know which days is is when I have problems with my stomach. Having the feeling that shouls stop eating for a day or two, and instead dring lots of water.
- My eyelids - purple / red / irrytated. Looks realy bad.
- My eyes - red / yellow, average dry
- My skin - irritation and red dots on shoulders, palms, it looks like ALERGY
- Lips average dry
General observations:
- skin is getting pink on my face and in general better...
I believe that stomach / alergy on skin / filling in my cysts has something in common. I still have 2 weeks to meet my doctor, and I know that he will only say that I should lower the dose to 0.75. But I feel I should rather clan my stomach.
Week 13:
Starts 5/04. Slowly going better, but unfortunately I was ill and on antibiotics. 2 big cysts grew up symetricaly on my chicks! That's awful. I had no such a bad cysts for 2-3 years! For 2 days I had huge irritation on my palms. I couln't hold anything in my hands for a day. Now I am starting to take alergy drug on daily basis.
Week 14:
Starts 12/04. All cysts are quite flat and dry. Unfortunately two big red and ocassionaly bleeding dots are left on my chicks. This time dry lips and eyes are back, and some pain in knees. I also don't like that I can't focus and see not too sharp. Opps - that might be dangerous. But skin also looks dryer. Good. In case I was taking the extra dose (up to 150mg) it would be my half dose(75mg/kg) by the end of the week.
Week 15:
Starts 19/04. Dissapointing.
- Acne is worse again. That's probably because for last 2 weeks I have been working like 14h a day.
- My knees hurt! Thats a sudden and very intensive pain. It comes suddenly when sitting or walking for few seconds to minute or so, a couple of times a day. It looks like every day it is more frequent. I am sure that it is related to the drug.
- I had painful allergy from the drug after half day trip in sun. My palms and hands were irritated and my I had a feeling that my head will will in with water or blood.
23/04. I am reducing dosage to 75mg/kg/day :(
Week 16:
Starts 26/04.
This week is the worst of all up to date. This is a third week, when I am working hard, like 12-18h a day and have lots of stress. My acne is awful. Huge cysts growing on my neck and face - in places where I had no cysts for 3 years. Total dissapointment.
Week 17:
Starts 3/05.
I am on vacation. My acne is awful. I went to the mountains with my friends. My skin is pinki and red from the sun. But slowly cysts are getting smaller and smaller. Hopefuly Accutene helps here. My face is still very bad. I stull suffer problems with my eyes and feel very bad in general.
Week 18:
Starts 10/05.
My acne is much better. By te end of the week my face and neck looks pretty good. Still some problems on my chest. If improvement will be so quick then I prognose to get back to the point I were in like 5-6 weeks ago. But fortunately now I am on vacation (and for next couple of weeks) so it also should help me with the treatment.
Week 19:
Starts 17/05.
I've visited my doctor this week. All blood tests are okay. My face is clear. I still have one big cysts under skin on my back neck and not relay clear place on my front neck. Let's wait. Side effects are gone. Only dry skin, eyes and lips, but easy manageable with cosmetics.
Week 20:
Starts 24/05.
Upps. I was always using my lipstick heavily - every hour let's say and I had no problems with lips. Even my doctor was surprised that I'm doing so well. Unfortunately I forgot to take lipstick with me for the very first time for almost whole day when going to the country side on a sunny day. The result is awful. My lips are huge like clown's and painful. I got creme from doctor. We will see. Acne and other side effects with no changes.
Week 21:
Starts 31/05.
Acne hasn't changed much this week. No side effects but dryness. This week is very sunny and I am spending lots of time on the fresh air, so I lowered dose to 0.75mg/kg/day to avoid sunburn problems. I feel to be burned more than normally, but have no problems like 2 months ago when exposed to sun in Paris.
Week 22:
Starts 7/06.
I got some acne dots on my forehead. They nearly disappeared after a couple of days of extra attention. No side effects but dryness and one new thing: my skin is really weak. Every time I scratch my hand or leg it bloods a bit. Unfortunately my hands and legs all all in small scratches, which were made due to the softness of my skin. By the end of this week I have competed 120mg/kg course. Dosage varied from 0.75 to 1.0 mg/kg/day depending on my exposure to the sun. But my acne is still not cleared, so I am extending the dose to 150mg/kg. Things to be done:
- under-skin cysts on my neck to be cleared,
- just a few places left on my chest to be completely cleared.
Week 23 (extra up to 150mg):
Starts 14/06. No visible changes.
Week 24 (extra up to 150mg):
Starts 21/06. No visible changes.
Week 25 (extra up to 150mg):
Starts 28/06. No visible changes.
Finish
Planned date: 30/06. I am abandoning the treatment 10 days before the planned date. I feel quite exhausted with side effects. Generally I am tired, and I see no changes since 3-4 weeks. Unfortunately I still have some "sleeping vulcanos" under my skin and I am affraid that they can blow up when I stop taking the drug.
4 MONTHS AFTER
Date: 01/11.
Side effects: All side effects are gone! No dry eyes, lips, too dry skin, pains, etc.
Changes to the skin and hair: used to be oily, now is rather dry, so now I am using cosmetics for dry skin and hair. No blackheads on my nose and neck any more!
Acne: gone, but... the "sleeping vilcanos" - a couple of places under my skin where I can feel that "something us under there" are still present and I am afraid that they can blow. I have two small cysts - one on my neck and one on my chest which eroded in last 4 months for 2-3 times. It was always when I forgot to take my sugar level controlling pills - Glucophage. It looks like my acne has more to do with my sugar/insulin problems. Accutane did not work till I started taking the drug along with Accutane. I am still taking it and it is scheduled to be taken for at least one year.
General conclusion: I am satisfied with the results of the treatment as for now, but I am sure that without Glucophage pills it would not work as my insulin levels were significantly influencing my acne.
1,5 YEARS AFTER
Date: 03/01/2009. Unfortunately single cysts are back. It started to return in the last months. Now they are more "static" what means that I had one for 4 months, not growing but not disapearing too...
2 YEARS AFTER
Date 07/22/2009. Three month ago I went to a new dermatologist. And she told me that I NEVER HAD ACNE! That what I have is not an ACNE, but a symptom of Coeliac Disease (gluten sensitive entrropathy). Just three months after I switched to gluken free food I not only have no more cysts (they actually return day after I don't keep the diet, but then quickly reverse).
The sad thing is that doctors didn't find it for 20 years and the only reason that it was found was that the doctor had the ilness herself and she knows it well...
That's the end of my story on this board...
My findings:
0) Before going on (Ro)accutane check your sugar/insulin levels after drinking glucose. Maybe you will find the real source of your acne, as I did. The tests takes 3-4 hours. Even if your sugar/insulin levels are ok in standard tests, you can find that they are going out of scale in the test with glucose. In this test your blood will be taken every 30 mins after dringing glucose shake.
1) Choose eye drops and gel with no preservatives and if you don't use lenses it's better to take drops which are not for those who wear lenses - they contain no irritating additives (and usually those are the cheapest ones).
2) Eye cream with eyebright (plant) and chamomile is perfect for irritated eyelids.
3) Swimming pool is not a good idea when you are on Isotretinoin :(
4) Humidifier next to my bad switched on all nights really helps.
5) The pill is 2.5 times stronger when taken with FAT RICH FOOD then when taken in between meals! Source:
6) Great site:
best wishes
nodulocystic29 ;-)
ps. please excuse me for all language errors. English is my 2nd language
