Archived

This topic is now archived and is closed to further replies.

New To Forum . Have Questions About Accutane Ib

98 posts in this topic

Ah, I must have misunderstood before. Have you shown him logs on here (specifically the pictures), and then the response to them?

I've told him about things I've read here. He doesn't like to talk about his acne at all. I'm really the only one he ever discusses it with, about how unhappy he is with it. He even refused to tell his girlfriend he was going on accutane until a few days after he started and broke out. She wanted to know why he was so moody and staying at home. One time he got upset with me because I told him in front of daughters boyfriend that his proactive came in the mail. So I try to give him quick tidbits of info without getting too serious about it. Its as if he feels that if he doesnt admit he has acne , no one will notice??? or maybe i just feel thats the way he feels. Have any of you felt the way he does? Do you talk about your acne with friends or ignore it? Maybe it's a guy thing I dunno.

Share this post


Link to post
Share on other sites

Hi everyone, I'm a 43yr. old male and on my 11th day of 40mgs a day. Cystic acne is on the back of my neck and my back with a few on my chest, too. Today seems to be the on-set of my IB. Sucks.

Mosey Mom, your son doesn't want to talk about it because he's embarassed about his condition. When you start talking about it, it's like holding a mirror up and telling him to look at it. I know you only want what's best, though, and are only concerned with your son's well being. Don't bring up the subject unless he does and see how that works. We like to go through life unnoticed when things are bad.

1 person likes this

Share this post


Link to post
Share on other sites

This morning I got multiple kenalog injections into the base of my scalp and back of my neck which had broken out really bad on day 11. It works - I had at least 6 very angry lesions and now they are 50% their prior redness and the swelling has decreased considerably. I had another 5 or 6 injections in the other medium sized bumps and they are almost totally gone. It costs $60 with my insurance and was worth every penny. This isn't a cure, but when things are at their worst and need some tough love, it never fails.

Day 12. Skin a bit dryer but not bad. Hair looks sweet as it isn't all oily 5 minutes after a shower. Pores on my nose are totally closed. Eyes were a little dry this morning but drops fixed that. Didn't sleep well last night due to worrying whether or not my derm would see me w/o an appt. for the injections. Found out they usually will. All in all, today is 100x better than yesterday.

*Mosey Mom, I thought more about your son's reactions and I think I know where he's coming from. When his complexion is talked about, it's an ugly acknowledgement of something he's ashamed of. Who wants to talk about that kind of stuff? Also, I think 80mg a day is too high. I'm 180 lbs and was started at 40mgs daily by a highly reputable doctor. I'll be on 40mg for 30 days, then 80 I guess.

Cheers

Share this post


Link to post
Share on other sites

Thanks everyone for all your responses. I appreciate all of them. I hate seeing him like this. Ok update on the ib. PA said his ib was normal and injected about 10 of the cysts. None of them look better today. We are waiting on blood test results to see if he will remain on the 80mg. She also told him to spot treat with BP. I told her I thought BP was not good with accutane but she said its okay to spot treat. My son will be on 80 mg for 4 months or more. She said with the kind acne he has its normal dosage up to 2.0mg per kg. if he was under 18 I'd put him on lower dosage. Unfortunately at his age I have no say :(

Share this post


Link to post
Share on other sites

Hi Mom, saw your post as a parent and it encouraged us to join for our daughter, who is 14 and started her acutane treatment in Nov.

We agree with leere (sp?) 80 mg seems really high. Our 14 yr old daughter is on a 5 month 40mg plan (110 lbs). From everything we have read, and as leere points out; it's the accumulation of the correct dosage of accutane for your specific body weight that counts; not the monthly dosage amt b/c you can change the dosage so long as you hit the cumulative total for your weight. As to the BP on accutane, goes against everything we have read and what our derm is telling us. There are always 2nd opinions if your son isn't happy with the current progress......based upon everything we now know, we would seek a second opinion.

This is our second child that has used acutane; we have a 20 yr old that completed a course in high school for moderate acne and her results were incredible. Today, you can't even tell she had acne. But, unknown to us until years later, she went thru a bout of depression as a Jr. in high school about 18 months after completing the acutane; we never attributed the depression to the acutane. With her, it started with migraine headaches, which she never had, and progressed so bad we had to see neurologists and nobody was able to figure out what triggered it. Eventually, the migraines went away and have never returned but she was so down, she was out of school for about 3 months. that has been the only negative with accutane and we now know better for our second child and what to watch out for. You don't have to talk about acutane; acne; or any of this with your son b/c it's just too embarrassing for everyone-acne is just such a taboo subject. Please just try to keep an open dialog with him and try to keep tabs on what's going on in his life. I know, easier said than done, but pay very close attention to his behavior while he is on it.

The drug works but i can't imagine the side effects on 80 mgs. Will your son even read this website so he can figure out how it works for himself? Just b/c he is taking 80mgs doesn't mean his acne will improve that much faster. For us, we are hoping our derm for our 14 yr is on the mark with his plan: 1st mo, was 40mg w/o food; as leere points out-this was only 50% absorption. We think dr did this taking into account her sports (club volleyball 2 hr practices x 2 times week and 1 extra practice); joint pain on accutane is bad anyway but athletics can compound this. for months 2&3 40mg with food. She is still having good days bad days with breakouts, but this is b/c she has not reached even 50% of her total prescription intake. since she is still growing and gained a little weight, we are considering up'ing months 4&5 to 60mgs. We are reading this site for as much info as possible to make this decision. So you see, it's not too late to change the dosage; we believe what the studies show it's the accumulation for your weight that matters; not the duration of time.

1 person likes this

Share this post


Link to post
Share on other sites

Thanks everyone for the replies. Everyone here has been so helpful and caring.

Update: I called his derm this morning and told them we are going to alternate between the 80mg one day and 40 mg the next day. Since my son is at 65kg I feel better at the 60mg or lower dose. I agree with everyone here it is just to high for him. By the way his blood test came back fine. Ib is looking very red ever since the cortisone shots. I hope today when I see him they look better.

Share this post


Link to post
Share on other sites

awe mosey mom keep us updated on your son's progress. i hope that the ib stops soon for him and that his skin gets better. i love that you are such a caring mom and i think its so awesome! don't worry those cortisone injections will definitely work they just take time is all. when i get my cysts injected they look really bad until the next day and then they slowly start to get smaller. my derm dilutes the cortisone so that it takes longer to go away and the worry of getting an indent is a lot lower. so if the cortisone was diluted then sometimes they will take a week or so to go away once injected. i am starting accutane myself in a few months and am horrified to be going through this at 35 but hope that things will get better soon. tell your son to hang in there!

1 person likes this

Share this post


Link to post
Share on other sites

Hi Tracy. Thank you for all the kind words. they must have diluted the cortisone because its been several days and they still look about the same. although i dont think hed want them again...lol..hes never had them before and must not have known how bad they hurt. it was the first time hes ever used the words holy mother of god, in front of me. Lol . Have you used accutane before? Or is this your first time.

Share this post


Link to post
Share on other sites

Hi Tracy. Thank you for all the kind words. they must have diluted the cortisone because its been several days and they still look about the same. although i dont think hed want them again...lol..hes never had them before and must not have known how bad they hurt. it was the first time hes ever used the words holy mother of god, in front of me. Lol . Have you used accutane before? Or is this your first time.

you are welcome!! yeah when they dilute the cortisone it takes a while for them to go away unfortunately but at least he wont have to worry about getting a dent. you know i think i am immune to the shots now. i have had 20 of them in the last 2 1/2 months and i don't even notice the pain anymore. you can tell him to be assured that the more of them you get the easier they are to handle. i havent taken accutane before as i was able to control my acne on and off over the years with antibiotics and topicals but they no longer work now. i am also on spironolactone since my acne is mostly hormonal. keep us updated on your son's progress and take care!

1 person likes this

Share this post


Link to post
Share on other sites

I want to say......today is day 30 and day 25 of ib? Things are not so red today all the acne he has received this past month are still hanging around except for the ones on the forehead that went away last week, cysts looking less inflamed, could be due to the cortisone shots last week or maybe the accutane, not sure. But just incase anyone is following the ib, it is starting to look better, the ones that are still coming out are smaller and only one or so every few days. However the existing is still there, still red and just a little smaller than before. It still looks pretty bad.

Share this post


Link to post
Share on other sites

MM, how much does your son weigh? I'm 180 and my doc is keeping me on 40mg a day for 2 months before increasing my doseage. He said this is the way to avoid, or at least minimize flare-ups. Athough, today is day 18 for me and I broke out on day 11. Kenalog is what my doc injects me with and I've gone for injections last Friday and again today(Thursday). I feel llke this keeps the really bad bumps somewhat under control. Does cortisone do the same thing?

Your son's doseage seems way high and that's likely why his IB is so severe. The redness can be helped with baby wash in the shower with warm water. If you live in a sunny place, sunscreen is a must. As we approach spring, this is super important. Has your son's doctor mentioned Predizone for the inflamation and redness? If not, it is used in conjunction with accutane. Don;t hesitate to call your derm daily if needed with any questions. It sounds like an anti-inflammatory would really help your kid out.

Be well.

Share this post


Link to post
Share on other sites

Hi fotoguy my son weighs about 145. I agree 80 mg was to high. Starting at such a high dose not only gave him a bad ib but his cholesterol rose almost 100 points. We have since lowered his dose to 40mg for a few weeks and maybe to 60 mg. after that, but 60 is as high as I will go. I hope that this thread helps others that are thinking about starting on such a high dose.

We notice a few more new breakout 3 in one day, all connected in the same area on the lower cheek. Could be since we lowered the dose or just continual purging. He also noted rash on both back of the hands, the same area on both. It's so weird that they both have the exact shape rash. Also his heels feel really sore.

Share this post


Link to post
Share on other sites

Day 36 and day 31 of IB , things have gotten worse since lowering the dose to 40 mg. On one side of the cheek there's about 7 new large acne, all joined together in a row, it looks like a large c shaped cut except its acne and very red almost purple color. The other cheek has about 5 red acne in a circle. What makes it look worse is that its not only the acne that's red or purple but also the general area around it. Ughhh I'm so frustrated as a mom right now.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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 :D

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.

Share this post


Link to post
Share on other sites

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.

1 person likes this

Share this post


Link to post
Share on other sites

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.

1 person likes this

Share this post


Link to post
Share on other sites

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 :)

Share this post


Link to post
Share on other sites

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. :)

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites