82 replies to this topic

[kevon]

I had a similar experience. Normally only 4-5 spots at any one time, but within 6 days or so I broke out really badly, had 40+ active spots all over my face. It was unnerving. I was only on 40mg (for the first 4 weeks). I'm now on day 14, and I found it stopped as quickly as it started. I now have no active acne, and I'm hoping that continues. Hope the same goes for your son!

[Mosey mom]

We are on day 22 and no sign of healing yet. It may have to do with being on 80 mg. I try not to stare at his face and I know he tired of me asking" any improvements today?" about 10 days ago lol. Because now he just gives me a look. So I don't ask anymore. Derm appt in a few days. Will keep everyone updated as to what she says regarding ib.


To Kevin, I'm so glad your on the healing path and that it started so quickly for you. Although I'm sure 6 days of breaking out was not something you looked forward to. Stay strong.

ToBMarie. Posting your pics makes it much easier for other people to relate. I wish I could take pics to show how bad my son has broken out but I'm afraid I wouldn't make it back here alive to post.

Edited by Mosey mom, 04 February 2013 - 11:30 AM.

[BMarieWantsNoAcne]

Maybe take pics but don't post them? That way you can still do the before and after comparison and you can both see how far you've come. It's helped me tremendously.

[Mosey mom]

Hi BMarie, yes we have taken pics just to compare from the start to finish. It is a really good idea for anyone. He keeps them on his phone though lol. Ib update day 26. Some of the cysts have been coming to a head and are scabbing now, new pustules and cysts still arriving but the look smaller than before. Just wish there wasn't so many. Used to have 3 maybe 4 cysts at a time before accutane , now there is about 16 active and about 20 or so healing. Derm appt tomorrow. Will update and let you know what she says. I read somewhere that the worse the skin, the worse the ib , because it has to purge everything. We are staying positive though and hoping its over soon.

[Mosey mom]

Going to derm today. Will update on ib status when we return. Things have gotten a little better in the past 2 days since applying some hydrogen peroxide to the active open acne. I think it's helping to dry them up and kill bacteria. If anyone else willing to try hydrogen peroxide and let me know if it helps you too.

[BMarieWantsNoAcne]

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

[Mosey mom]

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.

Edited by Mosey mom, 07 February 2013 - 04:41 PM.

[fotoguy]

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.  

[BMarieWantsNoAcne]

Fotoguy makes a really good point. I know if I bring something up it's much better than if someone else does...

[fotoguy]

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

[Mosey mom]

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

Edited by Mosey mom, 08 February 2013 - 10:23 PM.

[OldogNewTricks]

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. 

[Mosey mom]

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.

Edited by Mosey mom, 11 February 2013 - 01:46 PM.

[tracy521]

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!

[Mosey mom]

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.

[tracy521]

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!

Edited by tracy521, 11 February 2013 - 08:26 PM.

[Mosey mom]

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.

Edited by Mosey mom, 13 February 2013 - 07:09 PM.

[fotoguy]

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.

 

[Mosey mom]

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.

Edited by Mosey mom, 16 February 2013 - 10:54 AM.

[Mosey mom]

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.