82 replies to this topic

[fotoguy]

I'm noticing my hands are starting to get pretty dry and have a faint rash developing. It's due to the accutane coupled with the heaters being used in my office and home. A humidifier works well in these situations and you may want to get one. When I took accuatne in high school I remember the joints in my hips hurting really bad when I ran. My shoulder also hurt when I would throw a baseball. Tell your son to just hang in there and have faith that his skin will get better because it will. I am now on day 22 and my back is going crazy with bumps.  My scalp is as well. Luckily, I have never had acne on my face. Weird, I know.

 

As mentioned before, I am 43 years old. My son went to school with a kid who had bad acne on his face and went on accutane in the 11th grade. He looked pretty bad for almost all of their 11th grade year but by the time their senior year rolled around he didn;t have a bump or spot on his face. Staying on the med and dealing with the side effects is really all you can do. Your son should start to see a seroius turn-around for the better around month 4 -5. Within a year, he will be free of acne - mark my words. There is hope!

[Mosey mom]

Thanks fotoguy. I'm just a little frustrated for him it was looking like things were getting better and then we lowered the dose and things are worse again. My son got a rash on his hands and arms also, recently. I got him a humidifier now he just has to remember to turn it on and refill it when the water runs out!! It helped along with cerave cream in the jar and a change to his body wash. He now uses my dove deep moisture body wash for "older skin" as he calls it lol . he didnt want to at first but after he tried it and felt how much smoother and moisturized his skin felt i had to go buy more bottles..lol.. No more weird rashes. I guess joint pain is common too he's had back and feet pain occasionally and usually after lying down for a while. Since you took accutane before, did you have any side effects that bothered you after you stopped taking it? it is so weird that some people have body acne and not the face acne and visa versa. It goes to show you we are all different.

PS. He also got few bumps in his head that he's never had before.

Edited by Mosey mom, 19 February 2013 - 12:25 PM.

[erb27]

My son has been on accutane 10 days now and has broken out rather bad with about 20 active acne, he's never had more than about 5 at one time, on both sides of his face. It seems that this is happening quite early so I am worried that accutane may be causing a reaction? Or could it be a bad case of ib since he is on 80mg a day from the start? Any answers would be greatly appreciated.

 

Hey Mosey, just wanted to chime in. I'm on my 22nd day of Accutane (40mg/day), and I am currently in the middle of my IB. It's horrific. My skin is essentially purging itself of all unwanted bacteria (blackheads surfacing, LOTS of deep cysts forming everyday), it's rather disgusting. It all started about a week and half into the course. So, I'd say your son and I are in the same boat. I hope his IB is improving!

[Lastlazarus]

Mosey Mom,

 

I am a 25 year old woman and I am a month in to my third course of Accutane: I am 5'4, 130 pounds, on 100mg/day and I am experiencing a BRUTAL inital breakout, so I know how your son feels! This is my first time posting on this forum (long time reader), but seeing all of the dissmissive responses towards your son's dose, and large doses generally, I felt compelled to respond.

 

It is my belief that had I previously been prescribed an adequate dose of Accutane 10 years ago, I could have avoided the past decade of severe cystic acne. My current dermotologist was flabbergasted when I told him that I had been on 40 and then 60 mg about 2 years ago, because acne as severe as mine requires a seemingly extreme dose to counteract. To preempt any potential hyperbolic comments insisting that my doctor should have his medical license revoked/that he is a bad doctor/that I will die from this dosage: I am extremely fortunate to currently be treated by a physician that specializes in acneic skin and also happens to be the head of the dermotology department of a prestigious East Coast teaching hospital, so I err on the side of trusting his opinion.

 

Of course, everyone is different, but it seems that if his bloodwork is normal, his health is in check. I think the ticket is just staying on top of best practices by researching and talking to people, which is what you are already doing

 

Basically, I just want to parrot what everyone else has said: I think it is wonderful that you are so invested in your son's treatment and please tell him that the end is in sight! Think about how bad this initial breakout has been and how it is really all of the latent stuff lurking around under his skin -- if he wasn't on Accutane now (and a higher dose at that!) he would still be dealing with these cysts, etc. years from now.

 

 

[Mosey mom]

Dear Lastia thanks for your response. However after one month on 80 mg accutane his cholesterol almost doubled and he was around 240. I lowered his dose ( letting his derm know of course to 40 mg) we have an appt in 2 weeks and may raise it to 60 mg but I don't think his body can take 80mg. Ideally appreciate your advice and your doctor may absolutely be correct in his findings since u are on your 3 rd round. I am hoping that this first round works for him as it has taken me 7 years to get to this point to try this drug. Please wish us luck. I hope this is your last round to and you never have to use again thanks so much

Ib update, things still bad and red still 6 weeks in.

Edited by Mosey mom, 24 February 2013 - 04:52 PM.

[OldogNewTricks]

Hi Mosey Mom, 

 

We saw the post by Lastlazarus about your son's initial break out and the issue concerning the dosage. We posted a response to your question about your son's 80mg initial dosage and commented that this seemed really high to start. We think the posting by Lastlazarus shows how important this site is; we have read that a large dose is sometimes necessary for severe acne and the "norm of 120mg/kg" dosage is not for everyone. I think what happened to her bears this out. Hopefully other readers will do their research on the dosage and determine what is best for them.  

 

As you discovered; the higher dosage can result in more severe side effects like the high cholesterol and impact it can have on the liver; and these are just two of the more severe side effects. (we have found that taking red rice yeast helps reduce our cholesterol; if your son's levels remain high, ask your derm and/dr about this?).  

 

As to the IB, we didn't see any improvement in our daughter the first 3 months. In fact, her face acne was worse than it  had ever been on the anitbiotics or topicals she was prescribed; she almost quit taking the accutane in month 3. We asked our older daughter to come home for a weekend to talk to her little sister and re-assure her the IB will pass. Seeing is believing.  Our older daughter went thru the exact same thing when she took accutane and her skin is beautiful today. 

 

Our daughter is now into her 4th month on 40mg and her face is completely clear of any acne. The marks the IB caused are already starting to fade; it is incredible. She just had a small break out on her back (it had completely cleared up in month 3) which we think is just the final IB. For both of our daughters, it seems that once they exceed the midway point of their cumulative dosage, the drug really kicks in. Is your son at his midway point yet? 

 

As to the rash, we find an otc of 1% cortisone cream works best. We also think taking an omega 3 really helped with joint pain and the IB; make sure the omega has real fish oil. As to the joint pain, our daughter stretches every morning and nite and this helped significantly with her back and knee pain. 

 

We really hope your son is able to stick with the accutane and he has no severe side effects going forward. We really struggled with increasing the dosage from 40mg to 60mg after month 3 b/c we weren't seeing any improvement. We opted to add an additional month b/c of some weight gain and we are so happy we didn't change the dosage b/c the results in month 4 are so incredible. The main reason we didn't increase dosage is b/c our daughter had the side effects under control and it made no sense to us to take the risk of causing more side effects since she had them under control.

 

The IB will pass and your son will see improvement; give it time.

 

Good luck. 

[Lastlazarus]

MoseyMom, I wish you and your son the absolute best of luck. I, too, hope that this is his only round! I agree wholeheartedly with OldDogsNewTricks about how important this forum is for demonstrating the differences in regime: I am very relived that your son's cholestrol levels are back on the healthy track and also extremely happy to know that OldDogs' daughter's skin is doing well after just four months!

 

And, again, thank you for being such wonderful, supporting parents to your children. You are EXACTLY what they need right now

[Mosey mom]

Thanks old dog and Latista sorry been really busy but wanted to update. Yesterday in finally starting to look better. Mostly a lot of drying up of the red inflamed cysts. They look pretty dry with with patchy white dry skin around them. He's still on 40 mg a day and I think we will keep him there if his blood work comes back okay. Will update more when I have more time.

[Mosey mom]

Hi everyone just wanted to update on my sons cholesterol and ib. As everyone knows I lowered his dose to 40 mg because cholesterol was over 230. He was previously taking 80 mg a day. Today after a month on 40 mg I'm glad to say his cholesterol is back down to 122. His ib is still happening. He had more injections at the derm today. But glad to say they seem to be drying up faster. I just wish they would stop forming. It seems as if one side of the face starts to look better and then the other side breaks out and visa versa. Hopefully I will have some good news soon. Or I should say better news soon.

Edited by Mosey mom, 11 March 2013 - 06:46 PM.

[tracy521]

hey glad to hear your son is doing better. have they given him something to help the ib? i know there are certain antibiotics that he can take safely while on accutane and my pa mentioned that if one of their patients flares up pretty bad they give them prednisone to get rid of it quick. 

[Mosey mom]

Thank you Tracy. Ib is still happening. We are at least 50 days in and still breaking out. I can't wait to see when things start clearing up

Actually today is day 63

[tracy521]

awe i feel so bad for your son. this must be so hard for him but it will get better. i think for some people it takes months of being on accutane to clear up so just tell him to stay strong and one day soon this will all be over.

[fotoguy]

From what I understand, Accutane keeps working for a while even after your last dose. My pharmacist just refilled my Rx and I am now taking 60mg's a day of Amnesteem, up from 40mgs a of Clavaris. I was expecting more dryness but the opposite seems to be happening. Is there anything behind me wondering if Amnesteem isn't as effective as Clavaris? Or should I just be glad the dryness is gone?

Thanks.

[Mosey mom]

To fotoguy. After all the research I did, I havent seen anything that states Amnesteen doesnt work as well as claravis or visa versa. i have seen different side effects though.

 

Weel 11.  So about day 80 or so. Sorry everyone have not been here in ages, mostly because nothing much has changed, everytime things look like they are getting better, 3 days later things look worse again. Today he has about 10 new active from 3 days ago, although they are not  huge cysts, they are like just red and huge or white and huge and you can see them from under the skin.  What makes it look even worse is the "accutane blush". the skin looks pretty bad and the healing rate is bad also. he was very depressed today> i tiried to stay positive and tell him that since hes on $0mg it will take twice as long to see results. Not that 40 mg is anything to sneeze at. He has his drs appt in a few days so we will check cholesterol again. I hope its as good as last time.

 

I hope everyone is doing well and their faces are looking better. Be gone acne, be gone!

[Mom Too]

Mosey mom,

 

I ran across this forum while looking into isotretenoin because my 17 year old son has just started taking it.  I have an older daughter who has taken it before, the first time at age 15 and then again recently.  She is 20 now.  She had great results and, as of now, no lasting side effects.

 

My son is on day 20 and is going through the initial breakout period and has a  lot of drying and chapped lips.  His dosage started at 70 mg per day, but after hearing his complaints of knee and back pain, I began to search online for more info.  He is a student athlete and is having a hard time with practicing through the pain.  I contacted our derm on day 17 and he reduced the dosage from 70 mg to 40 mg.  We go back for blood work at the end of next week.  

 

Being immersed in other web sites containing all sorts of horrible things concerning these side effects, I was so happy run across your posts!  Many of your posts concerning feelings about your son, his moodiness, and "looks" he gives you are just like what I am experiencing now with my son!  If fact, we are amusingly the same as moms trying to take care of our boys!

 

I have had my son read some of the posts to help him know he is not the only one dealing with this issue.  Many of the responses from others have been great for me to read also and I will be following along to see how it goes with you.  Praying for great results with no harmful effects!

[Mosey mom]

Mosey mom,
 
I ran across this forum while looking into isotretenoin because my 17 year old son has just started taking it.  I have an older daughter who has taken it before, the first time at age 15 and then again recently.  She is 20 now.  She had great results and, as of now, no lasting side effects.
 
My son is on day 20 and is going through the initial breakout period and has a  lot of drying and chapped lips.  His dosage started at 70 mg per day, but after hearing his complaints of knee and back pain, I began to search online for more info.  He is a student athlete and is having a hard time with practicing through the pain.  I contacted our derm on day 17 and he reduced the dosage from 70 mg to 40 mg.  We go back for blood work at the end of next week.  
 
Being immersed in other web sites containing all sorts of horrible things concerning these side effects, I was so happy run across your posts!  Many of your posts concerning feelings about your son, his moodiness, and "looks" he gives you are just like what I am experiencing now with my son!  If fact, we are amusingly the same as moms trying to take care of our boys!
 
I have had my son read some of the posts to help him know he is not the only one dealing with this issue.  Many of the responses from others have been great for me to read also and I will be following along to see how it goes with you.  Praying for great results with no harmful effects!

Thank you Mom too, its good to know I'm not alone..although I'm sure this is not something we would wish on anyone else. His dr has prescribed him some antibiotics and said that things are going rather slow. Neither of us wants the mg raised because of the cholesterol. We haven't filled the prescription for the antibiotics yet because I have read mixed reviews, but we may do so on Monday. It didnt help that the dr admitted things were going slow. He will be done with his third month in another week and a half. I also had my son watch some YouTube videos. That might help your son too. That way they can get tips without us nagging them to apply lotion or Chapstick lol. Please keep us updated. I will check out some of your posts.

[Mosey mom]

I hope everyone is doing well on their accutane journey. As you know, progress here has been a little slow. The derm has added the antibiotic bactrim and prednisone for 10 days so we will see how it goes. Will update in a few days.

[Mom Too]

I know the slow progress must be frustrating for you and your son.  Hopefully things will look better soon! 

 

Since starting the isotretenoin, my son has had several complaints that he normally does not have.  The dosgae was reduced after the first two weeks from 70 mg to 40 mg per day, but he has continued to have back pain, knee pain, tightening in his chest, and then last night he woke up with a nose bleed.  He is convinced that all of these things are from the medicine and I have to say that I feel he may be correct.  He said that he may want to stop taking it.  We go back to the derm in the morning to have his blood work done after his first month of treatment.  

 

So far, his acne has not shown much improvement, maybe a little, but I do feel like it will improve if the treatment continues.  

 

Right now, I feel like stopping the treatment might be the best decision for my son because he just seems worried about these ailments and so am I. As I said before, my daughter has completed two courses of treatment with no problems.  But it may not be right for everyone, so tomorrow we will decide what to do from here.

 

Does anyone know of any alternatives to the isotretenoin treatment that are somewhat effective? 

[mike09]

It's good your son is breaking out bad....the worse the better imo......I went to Rush Dermatology in Chicago (one of the best in IL) and my derm said I was the 2nd worst patient he's ever had out of hundreds (embarrassing yea)......During my Accutane duration, i broke out baddddd twice (1 month after taking it, then 3 months after, not to mention other weird things).......for the last 2 years later my face is clear! it's quite unbelievable.......the worse the break outs the better it is in the future, the body is getting it all out

[mike09]

Mosey mom,

 

I ran across this forum while looking into isotretenoin because my 17 year old son has just started taking it.  I have an older daughter who has taken it before, the first time at age 15 and then again recently.  She is 20 now.  She had great results and, as of now, no lasting side effects.

 

My son is on day 20 and is going through the initial breakout period and has a  lot of drying and chapped lips.  His dosage started at 70 mg per day, but after hearing his complaints of knee and back pain, I began to search online for more info.  He is a student athlete and is having a hard time with practicing through the pain.  I contacted our derm on day 17 and he reduced the dosage from 70 mg to 40 mg.  We go back for blood work at the end of next week.  

 

Being immersed in other web sites containing all sorts of horrible things concerning these side effects, I was so happy run across your posts!  Many of your posts concerning feelings about your son, his moodiness, and "looks" he gives you are just like what I am experiencing now with my son!  If fact, we are amusingly the same as moms trying to take care of our boys!

 

I have had my son read some of the posts to help him know he is not the only one dealing with this issue.  Many of the responses from others have been great for me to read also and I will be following along to see how it goes with you.  Praying for great results with no harmful effects!

 

 

Mosey mom,

 

I ran across this forum while looking into isotretenoin because my 17 year old son has just started taking it.  I have an older daughter who has taken it before, the first time at age 15 and then again recently.  She is 20 now.  She had great results and, as of now, no lasting side effects.

 

My son is on day 20 and is going through the initial breakout period and has a  lot of drying and chapped lips.  His dosage started at 70 mg per day, but after hearing his complaints of knee and back pain, I began to search online for more info.  He is a student athlete and is having a hard time with practicing through the pain.  I contacted our derm on day 17 and he reduced the dosage from 70 mg to 40 mg.  We go back for blood work at the end of next week.  

 

Being immersed in other web sites containing all sorts of horrible things concerning these side effects, I was so happy run across your posts!  Many of your posts concerning feelings about your son, his moodiness, and "looks" he gives you are just like what I am experiencing now with my son!  If fact, we are amusingly the same as moms trying to take care of our boys!

 

I have had my son read some of the posts to help him know he is not the only one dealing with this issue.  Many of the responses from others have been great for me to read also and I will be following along to see how it goes with you.  Praying for great results with no harmful effects!

and "Mosey Mom" for what its worth (taking into consideration bodies work differently) i was 150 lbs 6 feet tall wen I took accutane.   My dosage was 40mgs the first 2 months, then I made my derm up it to 80 for the rest of the time to get all the acne out of me.  Don't think deeply into the "horrible things" accutane causes.  What it mostly causes is depression and anxiety because you're going thru the worst break outs ever.  I even received a gram negative infection on my face with all the bacteria coming out so fast! my derm has barely ever seen that! but back to "horrible things" it causes, my derm was telling me how the pregnancy issues hold it back from becoming a life changing medicine for people. 2 years later, i agree with his statement

Edited by mike09, 12 April 2013 - 12:39 AM.