Roaccutane working really slowly -- any other tips on acne? (Light therapy???)

LegacyUser

hiya,
I've had acne for about 4 or 5 years now (I'm 18 at the moment), and I've been on Roaccutane for about 20 months at this stage. It cleared up my face straight away, but it's struggling to clear my back especially, and my chest to a lesser extent. I also frequently get bit lumpy spots under my arm-pits, and in my groin area, as well as sometimes on my back side.

My dermatologist knows how frustrating I'm finding it, but says that there is nothing else they can be doing to help it along. He says vitamins may interfere with the medicine, sunbeds are too dangerous, and hasn't mentioned any cleansing rituals (although my face is as good as can be, and hasn't been a problem for months).

I've also had a joint consultants meeting thing, where I sat with my back and chest exposed, and about 25 or 30 of "the best" consultants in Dublin came into the room at their leisure and prodded around and asked questions. Then they went off to discuss it, and concluded that I should continue to take Roaccutane. That was the cumulative total of their collective intellect and experience. Cheers.

Oh on my last check-up (about a week ago), I was booked in for a procedure to remove the blackheads from my body. Anyone had this done before? Apparantly I'm gonna be covered in local anaesthetic cream (who's the lucky nurse who gets to do this...), and then have them all burned out with what I gather is like a soldering iron device. Lovely. Supposedly getting rid of the blackheads will reduce the number of large ones forming.

Anyways,
I'm just starting this thread to see if any of you have tips or advice to help me here... I'm getting incredibly p*ssed off with this disease, and I'm supposed to be going to Spain in about 2 1/2 weeks, and I don't fancy exposing myself there this time. No doubt it sickens most "normal" people.

About the spots under the arms, and in the groin, do ye think that this is caused by friction? And should I start putting moisturiser in the areas to lube it up?

Thanks for any help or advice

missingtime

Yea i was on Roaccutane too. Did ya get the nose bleeds yet?

It pretty much gets worse before it gets better. Going to spain is probably the best thing for it. Ironic eh?
I was the same and now since I have Psorasis I'm quite nervey bout going sun bathing but the sun really helps.
Drink sh1t loads of water. Its supposed to help. Dont put moisturiser on, the reason you are getting acne is because your skin is too oily.

LegacyUser

I'm roacc 12 months now, has helped loads, even though its been a bumpy ride. Do use moist, it helps loads. I use e45 every night before I go to bed and put some SPF 15 on in the morn cause your skin burns really bad on Roacc. Whose your derm?

Dublinstiofán

There is a cream most doctors/dermatologist prescribe for use with roaccutane i used it when i was on it and it worked great. Think it works so well because as the Roaccutane is working from the inside the cream is also working on the outside. I cant think of the name of it off hand but i still have some of it at home and i can get the name off it for you later on. Think its called Differin.

Yep differin i just looked it up.
http://www.differin.com/
If you get it it should make a huge difference in a few weeks.
Hope this helps
Enjoy your holiday

Black Swan

logged_out wrote:

My dermatologist knows how frustrating I'm finding it, but says that there is nothing else they can be doing to help it along. He says vitamins may interfere with the medicine, sunbeds are too dangerous, and hasn't mentioned any cleansing rituals (although my face is as good as can be, and hasn't been a problem for months).

Never had this condition, but we all have had a need for medical treatment at one time or another. Had a doc once tell me, like your dermatologist, "there is nothing else they can be doing...", got a second opinion, and found out there was something else. Have you tried a second opinion with another doc?

Carcharodon

I wason Roaccutane a couple of years ago too, had bad acne too, very painfull on back especially.
My dermotologist told me that i should only go on it for around six months i think, and then do another course of it if it didnt clear up. The drug still works for some time after even when you have stoped taking it.
I think its very dangerous to take it for too long, could have other long lasting effets on your body.
Everyone thats been on it knows how hard it is to take it, it really does mess with your body.
Although i have lately started getting acne again i would not go back on it, so from that point of view, it might me worth your while to stick at it for a little while longer if you feel comfortable with it.

The best thing for my skin is the sun, spent a couple of moths away and mine totally cleared up.

If you go to the sauna and steem rooms consistently, that will help, i know it can be embarassing but it would be worth it if it works.

Rb

I did a 6 month course of this stuff a few years ago, worked wonders and I haven't had a proper spot since.

It's very powerful stuff though as I'm sure you're aware, so just follow your dermatologists advice 'cause if you mess around with it can mess you up good and proper.
Though your course is particularly long, just stick with it and come off it when your dermatologist recommends.
I found drinking loads of water, cutting down/out sugars and a good facial wash(I only had spots on my face though) helped, along with some sun. Though I should say, when I finished my course I quickly learned that my skin was more sensitive to sun and I was more prone to burning. So when it comes to your holiday (leaving cert. holiday I'm guessing), try and not worry what others are thinking and just lay out. It'll do your skin good, just remember to wear a high enough suncream.

And you should try the advice of saunas/steam rooms too, they do great things for your skin too.

I've never heard of the blackhead treatment you're about to receive, it sounds great though and hope it goes well for you 'cause afterall, spots generally start as blackheads so the less you have the better.

And as has been said, roaccutane keeps working long after you're finished your course, so though it may not clear up now while you're on it, it may a month/6 months/a year after you're finished, and sure if after a long period its still not cleared, I'm sure you could try another course.


Good luck.

miss_gonzo

I'm on my third month of Accutane. Im not in Ireland, but was wondering what you guys have to pay for it? Its damn expensive here, and I dont have insurance to cover it.


Anyways, Im finding that its cleared up 80% of my face so far...and Ive had severe acne since I was 16 (Im 21 now). I still have a bit though, and my doctor would like to keep me on for an extra month to see if it clears up. If not, Im assuming she might continue the treatment.

Oh, for the first month and half, my acne got a slightly worse. But, thats a really common side effect.


My back, however, seems to not have cleared up like my face has. Thats why I think I might need more than 4 months of treatment. I hate it...I find it really embarassing and avoid showing my back and upper arms. I even dont like showing those parts of my body to my partner.







I pretty much got ALL the side effects. Esp. the nose bleeds, dried lips, eyes....dried everything! I also noticed that since I started accutane, my exezema has worsened. The side effects have been horrible for me and I hope they will be worth it.



Acne is such a biiiitch.

imeddyhobbs

miss_gonzo wrote:

I'm on my third month of Accutane. Im not in Ireland, but was wondering what you guys have to pay for it? Its damn expensive here, and I dont have insurance to cover it.


Anyways, Im finding that its cleared up 80% of my face so far...and Ive had severe acne since I was 16 (Im 21 now). I still have a bit though, and my doctor would like to keep me on for an extra month to see if it clears up. If not, Im assuming she might continue the treatment.

Oh, for the first month and half, my acne got a slightly worse. But, thats a really common side effect.


My back, however, seems to not have cleared up like my face has. Thats why I think I might need more than 4 months of treatment. I hate it...I find it really embarassing and avoid showing my back and upper arms. I even dont like showing those parts of my body to my partner.







I pretty much got ALL the side effects. Esp. the nose bleeds, dried lips, eyes....dried everything! I also noticed that since I started accutane, my exezema has worsened. The side effects have been horrible for me and I hope they will be worth it.



Acne is such a biiiitch.

it cost me about €1500 for 6 months,most of my costs were with the dermatologist

Carcharodon

imeddyhobbs wrote:

it cost me about €1500 for 6 months,most of my costs were with the dermatologist

That is alot of money but worth it if it makes your quality of life better

I managed to get mine on the medical card when i was in college, very lucky indeed

LegacyUser

Is 20 months not far too long to be on roaccutane? I was on it before for about 4 months and it was so strong. You can have liver failure etc. if you stay on it for too long!

Cleared me up and havnt had, as rb_ie said, a proper spot since.

Carcharodon

spotty dick wrote:

Is 20 months not far too long to be on roaccutane? I was on it before for about 4 months and it was so strong. You can have liver failure etc. if you stay on it for too long!

Cleared me up and havnt had, as rb_ie said, a proper spot since.

I think it is too, my doctor told me that he wouldn't allow me to stay on it for too long because of what it does to your body.
A friend of mine went on it a good couple of years ago and he had to stop after a short while cos it gave him ulcers, he was very sick after using it.
I suppose everyones body acts differently, some might be able to cope with it...

LegacyUser

I get blood tests nearly every time I go to my derm now (every 8 weeks roughly), and have been getting them fairly regularly since I started, and they didn't show any problems. I haven't noticed anything serious myself either, although I do of course get the many, many, many, side-effects associated with it. I can't remember what it's like to have moist lips

I'll address the other posts later, thanks for the replies!

BTW, the Roaccutane is costing us €85 a month cos it's covered on the government scheme (don't know what it's called, but you can only pay €85 a month on medicine [altogether] if you're on it... quite handy), and I'm seeing a public dermatologist, so money saved on that.

daiixi

woah... scary stuff.. I was on roaccutane for about a year and while it cleared up the really really small amount of bad skin I had it fcuked with my head for about 18months... as far as I'm concerned the stuff is majorly bad news. however for the most part it works...
I just did normal skin cleansing.. ie cleanse/tone/moisturise and stayed out of the sun as much as possible (because of the easily being burnt thing)... as for the extra spots you mention, yes, friction will always help bring on spots...

Jumpy

Oh jesus. Please tell me Roaccutane isnt still legal.
I would gladly have acne back tenfold compared to the damage it caused to my head while I was taking it.
It is not a safe drug. It will mess with your emotions and swing your moods wildly. It will take years before you can get a decent tan again also.
Worst 6 months of my life with that stuff.

spinandscribble

god this is all pretty scary stuff. i just started this drug today. please tell me its not all bad

Carcharodon

spinandscribble wrote:

god this is all pretty scary stuff. i just started this drug today. please tell me its not all bad

It all depends on the person and how they react to the drug.
The majority of the time most people will have the same reactions to the drug, dry lips and skin, nose bleeds etc loads of them. I also got really really bad back pain, play lots of sport so it was worse.

It is reported to cause depression and was banned before and might still be in some countries.
In my opinion people with bad acne are kind of depressed anyway and the drug probably doesnt help.
If your emotionaly stable it should be ok.

It can be a hard couple of months but well worth it in the end, it really does work and change your life especially in regards to confidence and not being embarassed all the time

I literaly tried everything before it and nothing worked, its not the perfect solution but the best one out there in my opinion.

Jumpy

Well the only other thing that I have seen cause more side effects than Roaccutane is Chemotherapy.

ronan25

Hi. Im a 25 year old bloke who has recently discovered acne. I avoided acne when I was a teenager but over the past 18 months it has just been terrible. I am currently taking benzamycin and minox. I think it helps a bit but I just cant shake it completely. My useless GP has referred me to a dermatoligist. He will no doubt reccomend roaccutane. I have a couple of queries that maybe someone could help me with.... How many times will you have to see the dermatoligist during the course? Do you really have to wait years to get a sun tan? And finally, is it just me or does anyone else think that these guys offer a crappy service? I had to wait 12 weeks to see a guy... privately!!! Thanks, Ronan.

Colm_OReilly

I'm not a doctor but I do coach athletes in a demanding sport.

The key factor we've found in health and recuperation is diet. And we've found nothing better than "The Paleo Diet"

I'm not paid by these people but every single person I know who has used this diet has had a marked increase in their health, and their skin has cleared up. I don't suffer from acne but when I vary from Paleo my skin gets blemishes and spots.

Dr. Cordain has written "The Dietary Cure for Acne." http://www.dietaryacnecure.com/ - warning, it's a long adcopy page. I haven't read it but following paleo has improved my skin, it might help with yours.

Hope this helps,
Colm

LegacyUser

ronan25 wrote:

How many times will you have to see the dermatoligist during the course?

I see mine every 8 weeks, the first few times it might be less frequently though, cos there's no point in you going to see him if there's no change, so they'll give it time to start working.

ronan25 wrote:

Do you really have to wait years to get a sun tan?

Dunno where you heard that, but it's not true! I have a (slight) tan right now, from playin football and stuff over the past few days!
You do however have to be more careful in the sun, because the drug makes your skin more sensitive (to burning and also to abrasion! I don't know how many times I've vigorously scratched an itch, and ended up with a scab on my arm! and the drug makes you itchy too, so it's a catch 22 ). I didn't really take it seriously until I fell asleep in the sun one day, and musta been out there for at least 45 minutes. Got burned to a crisp, and whatever way it reacted with the medicine or the acne, I was incredibly itchy especially on my back, for about 3 days. Worst 3 days of my life.

Now I lather myself in cream and go out for 10 minutes at a time Although I don't really put cream on when I'm playin football (in shorts and t-shirt), as the burns I get there (if I get them) aren't painful or itchy -- just red.

ronan25 wrote:

And finally, is it just me or does anyone else think that these guys offer a crappy service? I had to wait 12 weeks to see a guy... privately!!!

Well I don't really have any complaints to be honest... I'm seeing my derm publically, and rarely have to wait more than 30 minutes once I get in the door, and as I said, he gives me 8 weeks between visits to allow the drug to work its magic.
The only gripe I'd have is that he doesn't take the whole depression thing seriously enough. I don't suffer from it now, but earlier in my treatment I was quite bummed out. It was probably more a symptom of having disfiguring acne than the drug!!! but literally all he did after say the first visit, was say "well ya don't LOOK depressed!", and I'd smile along. It was probably cos my mother used to come to the appointments with me, so it's not as easy for me to open up, so he didn't bother. Personally I would rather he had asked her to wait outside for a few minutes when talking about this sort of stuff.

In general though, no problems.

About the treatment I got done... it's supposedly called having your comedones cauterized. Briefly, it went as follows...

-bought local anaesthetic cream, brought it in 2 hours before procedure took place, and had a lucky nurse spread it across my back. it was covered with plastic sheets, and I was allowed walk around town as normal.
-went back to the hospital, had sheets removed, and back cleaned up a bit. then the nurse used a little device that looked like the right-hand side of these, only was flatter, smaller, and rounder/smoother, to take out most of the blackheads on my back and some on my chest. it wasn't sore, she just put the hoop onto one, pushed down, and up came the grease and stuff (ew).
-then I went into the theatre, lay on the bed thing on my chest, and 2 of them went to work on my back. they had hand-held devices that had short, hot, needles in them, and they literally just went around to all the white things that I thought were scars (apparantly they were deposits of sebum), and poked a shallow hole in them. it wasn't painful, in fact it was kinda relaxing As I said to the nurse, "it's like acupuncture, only with red-hot needles!"

I had it done about a week ago, and so far I haven't seen any noticeable results, but here's hopin! It's supposed to stop big cystic ones forming.

sorry for the disgusting detail

mayo4sam

Wow.... just been readin through all those comments.... cant believe how lucky i am!! Im nearly finished my 4th month of roaccutane, and the ONLY side affect ive got is dry lips!!?? how cum ye guys got it so bad!?? its really weird isnt it!?? It cleared up my back entirly in the first month, but it's taking a lil bit longer wit me face, but god, it really is working, every day i can see a lil bit more improvement! And it makes people grumpy aparantly... it's made me happier than iv ever been!! I mean, im not the spotty one anymore!! But i have noticed that if i dont get enough sleep, then i can be a lil cranky, so bed early, everyone!! :L

o, and i was warned to use NO lotions or potions on my face, just ta wash it with water?? seemingly your skins too sensitive for any of the face washes??

But iv one question.... for anyone who has finished a course of it.... i mean, will ya notice any difference once ya stop?? im afraid they'll come back like?? :(

ANyway, ive rambled enough!! I just wanna wish ye the best of luck wit yer treatments!! ill log bk onta dis again, see how its goin!! And anyone who's thinking of starting, dnt worry!! Dont think the worst, it mit b d best thing ya ever did.... it defo is for me!!!! :L

CHEERS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :L x

Dave!

Your derm will you that it's common to have a bit of a 'flare up' immediately after stopping. But usually it dies back down again. Some people have to go on a second or subsequent course of the drug also.

I found that it got a bit worse after stopping, but gradually improved again, and I've been clear for months now. Touch wood, I won't need to go back on it!

As to why the effects and side-effects are so inconsistent... well, that's drugs for ya! Not everyone gets the same side-effects, and not everyone improved at the same rate. It might also be relevent that you've only been on it for 4 months; perhaps after a year at least, you would get these other side-effects.

All the best with it

By the way, how have people dealt with scarring? That's my next obstacle It's not too bad, but the derm is giving me steroid injections in the larger ones to get them to go down, and basically says that only time will fade them, and they'll probably never fully 'go away'. Like I say, it's not too bad, I'm not overly concerned about it.