Two Weeks After

Its been two weeks since I threw away my last 3 accutane pills. And since I was in the desert and suffering from crazy eczema, and hiking in the desert drinking a gallon plus of water a day, I didn't feel bad skipping out on a day and half of accutane.

Things are going well. My energy is good. My skin is good. Joints are getting better. Brain is still improving.

Most importantly, occasionally I am thinking of myself as someone who doesn't get acne. Having acne was such a constant thing, then all the acne medications were something that needed my attention, now occasionally, I think/worry about my skin, but then I don't need to. So much will be freed up if this treatment continues to work.

The dermatologist gave me some cleanser and told me not to moisturize my face unless its dry. He said there's too much moisturizing going on under false information, and that this topic should be on Oprah. So I'm cleaning my face really for the first time in 6mo. I used to just use a wash cloth to get all the dead skin off.

My desert eczema is clearing up since we go back from the southwest. I was diagnosed with Polymorphous Light Eruption. This is the most fun to say ailment I've ever been diagnosed with. Say it out loud. You'll enjoy it. Basically, I'm allergic to the sun. Ha!

35 days left-blood test-absorption

I went for my blood test at the end of my 5th month today. I am going to take an additional month of accutane, 6 months total. I feel pretty down in the dumps about it. Although I know its what I should do since I've continued to get some cysts, but I'm not optimistic that this additional month will cure me so that I don't need a second treatment. I guess I just hope that it delays a second treatment.

For the past couple weeks, I've been taking my accutane with oil, which helps with its absorption, which I just learned. I am having a resurgence of side effects. I feel so tired, achy, and kinda down in the dumps. I am going to take a nap today, which I haven't needed for over a month.

Looking back on my treatment, this has been really hard. I think while it was happening, I didn't really appreciate how bad it was making me feel, especially emotionally. Looking back at the winter, I'm surprised it went as well as it did. I guess I'm lucky.

It feels really hard to generate the energy and motivation to get through this last month.

Pimple and Cyst- mid month 5

Why am I still getting stuff???!!!!

I got one pimple/blackhead thing on my temple today. One pimple on my scalp yesterday. And a small cyst is living in my cheek for the past few days.

Why is this happening on the accutane?

Was it the pizza from this weekend? Why am I so stuck on this dairy and acne relationship?

On the plus side most of my bad side effects are gone. I don't feel 100% physically, but I am feeling so much better!

Special Occasion-beginning of month 5

I had two beers tonight, right in a row with dinner. Its wonderful. I've had so little to drink through out this ordeal. I want to sorta celebrate and have a lovely evening with my husband on our back porch. It was the first beautiful evening and we could eat outside. It was worth it and I loved it.

Bad News- Blood Test 5

I had my 5th blood test today, and it was supposed to be my last. But since I've had few cysts on my back over the past 2 months, it probably won't be. Julia said I shouldn't be getting any more cysts at this point in my treatment. If I don't get anymore cysts this month it might be my last month, other wise it'll be another month- 6 months total. I told her I would be happy to go for another month if I knew it would help prevent needing a second treatment in the future. She said that her and Dr. Berk didn't really know if an additional month had any effect on the need for future treatments.

So deep in this bad news is more bad news. Not only do I think I will be on accutane for another month, but I also think I will need another treatment, like my cousin did.

This bad news has been really hard. I've been trying to not (re)act to and not suppress my emotions. Its a new thing I am working on. Although I can say the advice in my head like a mantra, its actionable execution is questionable. I do know on some level that I am fortunate that this treatment is available to me.

And at the heart of this bad news is the end of my waiting. Knowing that I will be on this for not only a month longer then I thought, but probably an additional treatment at some point in the future means I can't wait for it to be over to get on with my life. I need to figure out how to exercise and have energy which will help my mood. I think the rhodiola has really been helping, and the gentle yoga I've been doing and springtime!

Rhodiola Rosea- mid month 4

I am trying so hard not to be discouraged. I slept for 12 hours last night, woke up exhasted, and I feel like taking a nap right now. I have a mild dull headache and my eyes feel dry like I've been crying, even though I have not.

I bought some Rhodiola Rosea extract today at Whole Foods, its not cheap, but its pretty good. I used to take it regularly for energy and to prevent depression, of which it helped greatly with both. Hopefully it works now.

Its "only" a migraine

Today, I really thought I was loosing my mind. Coupled with the resent emotional turmoils, I thought "Oh my god! They were right, this stuff makes you crazy."

I left my house and returned to it four times this morning, locking it each time before I realized what I forgot!

But just a few hours ago in the middle of critique for one of my classes, the small dull headache blossomed into a migraine. I haven't had a migraine in a long time, which I attribute to my lack of drinking while on accutane, so this one caught me a little off guard. But I am glad its a migraine and not psychosis.

Meloncholy Mid Month 4

Its really easy to use the accutane as an excuse.

Sure I think its making me feel bad, no doubt. But instead of using that as an excuse for acting bad, I should use it as an excuse behaving very well, very presently. My mind feels very dull, somewhat cloudy and uninterested. I will expend effort to over come this inertia.

There has been a really fine line between taking a nap because I know it will make me feel better and because I know the accutane is causing this fatigue. And taking a nap because I am lazy and don't want to deal with even the things that normally interest me.

Feeling Better (early month 4)

Ever since the last of my old skin fell off and was left with this feeling of all new skin, the rest of me has been feeling better too.

Maybe my body has kinda adjusted to this. Or maybe the continued and consistent side effects has made me less sensitive.

Still I can't wait for it to be over

New Skin! {early month 4}

Today is an encouraging day. Today is the day my skin feels new.

When I started treatment, Julia said not to do anything to my skin I wouldn't do to a newborn. She basically said that Accutane was going to give me new skin, and today it feels like that. The skin on my face and the back of my hands feel especially new. Its amazing. Its amazing that I noticed it just like that, in one day.

There are still marks, scars, and skin discoloration but I treat that with bleaching cream prescribed to me. Not something I'd put on a newborn, but Julia said it was ok.

just trying to keep it together

I have been struggling on and off with constipation during this treatment, and doing my best to drink lots of water. But it has now caused an injury. I will be adding a daily stool softener and fiber supplement, and just hoping my body can keep it together for another 2 months.

Frustrated- beginning of 4th month

This weekend I had some emotional break downs. I succumbed to feeling ok and getting lazy with action.

For a while I was feeling optimistic with only 2 months to go, past the 1/2 way mark! But this weekend I was like, "How can I do this for another 2 months?"

I'm tired of being tired. I'm tired of condoms. I'm tired of my skin hurting, and not wanting to shower. And why am I having pimples now, when I didn't earlier in the treatment.

Don't call it a come back! (please) end of month 3

In the past two weeks I've been getting some pimples, one cyst, and it seems like the blackheads are budding. Whats going on?! Are they figuring out how to survive in this harsh accutane tundra, or is this the last of the stuff hiding deep below?

I have been feeling somewhat better in the past couple weeks too. Not like I am going to ride my bike to work, like I so desperately want, but not like I feel like I'm falling apart. Maybe I had an actual cold before.

4th Blood Test

I had my 4th blood test today, without a hitch.

I feel more tired then ever. Am I actually sick, or is this just a side effect? I have congestion in my ears and nose, but not too much, and of course my body feels achy, but it has for over a month.

My doctor said I could reduce my dose, 2 one day, 1 the next day, etc., but that will add more time to my treatment. Hopefully this is actually a cold, and I will feel better soon.

Blah- Blah..... mid month 3

Blah blah achy day.


I had to sand and paint the new walls in my studio the past two days, and I think that is why I feel yucky. But that project is done...

It seems like the achy is directly related to physical effort, which sucks. I like to work out, and soon the ice will melt and I can start riding my bike again, but that may all have to wait until May.

Once I am done with this I will have to seriously work out!

Is your doctor competent? A comment and response.

Below is a comment I just received and my response, which I wanted to republish for the benefit of others. Not all doctors are the same. Find one that you think serves you well, and do your own research and ask lots of questions.

Hi Renee,

I just started my fourth month of accutane last week. This is my second month of the 80mg. I completely understand everything you're going through. I went to the Dr. on Friday, and he said I may need to stay on it for an excess of 6 months. My acne isn't as good as it should look for how long I've been on the medicine. I'm experiencing the acing joints today more than ever. I've been sleeping a lot and I have no desire to get up for my morning classes. I'm upset that I skipped my business class this morning. I just found out last night that I'm not supposed to drink while on accutane. Until now, I've been drinking several times per week. Do you know if this could affect how my acne responds to the medicine? I'm hoping now that I know not to drink, my acne will improve. I'm quite upset that my Dr. never told me not to drink. The iPledge booklet doesn't mention anything, either. I love your blog, I just found it tonight. It's great to have someone who is going through the same stuff I am.


Andy,

Your doctor made a grave error in not informing you about drinking. Drinking, or any substance use, while on accutane is very bad for your liver because accutane is very bad for your liver. So your liver is doing double duty. Not drinking might help your fatigue for obvious reasons, but I have no idea about your acne.

I hope that your acne clears up with accutane, but it is also important that you protect yourself from injuries that accutane could cause (like liver damage). Are you getting a monthly blood test? My doctor won't keep me on it for more then 5 months, I asked, because I want to make sure it works, but she said dosage is based on body weight. Some people end up taking it twice. Don't be discouraged, but read as much as you can, and maybe consider a different doctor.

Best Wishes,

-Renee

3rd Blood Test Today

Today I go for my third blood test. Hopefully there are no mix ups or screwups this time, I only have 3 days of medicine left.

My body aches have reduced significantly after taking the naproxen sodium twice a day for several days. I am not taking it now, but I will again, if I need to. It seems to sorta "build up" after taking it for several days.

I have one big red pimple/cycst on my cheek, and its been there for about a week. And a crack is forming in the corner of my mouth no matter how much I put Aquaphor on it.

Look for the texts from my phone and the ipledge/pharmacy circus tomorrow.

Body Pain Management

I am taking Naproxen Sodium (Aleve) twice a day, and I started taking the Glucosamine. The Glucosamine takes at least a month to kick in and doesn't work for everyone, but it shouldn't hurt. I just started these, so I have no positive results to report, yet.

Joint Pain, Acne, and Cuts: 1 1/2 months

Today I felt like and old woman. I feel this is probably what arthritis feels like. I feel like my bones are grinding together. This joint pain is a recognized side effect so I looked on line to see if I could find any recommended relief. I am shy to take any pain relievers because I really don't want to tax my liver anymore.

I found a helpful question and answer site covering this topic at MedHelp.org. Unfortunately it costs $19 to ask a question, but the posted questions and answers are helpful.

I also found this wikihealth site over all very helpful. It lays out typical side effects and experiences by month of treatment. I will add this to my links column.

The last entry in this forum recommends Glucosamine Sulphate which is used by arthritic people. Go figure. I will call my doctor or pharmacist to find out if its ok to take.

This forum recommends more water! That sounds like a good idea too. I try to drink as much as I can, but sometimes I forget, and sometimes I don't want to have to pee all the time.

At 1/2 way through my second month my skin looks better, but the pimples are still putting up a fight. I've had a few small cysts break through this week.

Also cuts are happening more easily and taking longer to heal. I've had some mystery cuts on my face. Did I do that when I was sleeping?

adjustment

I am on day 6 of the new dosage, and I remember some of these feeling from the first dosage.

I feel really week, sore in my joints-back and knees, and just really tired. Almost like I getting sick, but I know thats not it. Although I built walls in my studio this weekend, and did alot of heavy lifting, I know that this soreness is not the same. Its like a deep down fatigue.

However, I believe it will pass, or come and go. I am trying to drink tons of water because that seems to help, but I am also having coffee before my night class. Getting up in the morning seems impossible, no matter how early I go to bed.

All these things were happening when I began the lower dose, but less intense, and then they passed. I'm thinking this will too. I just hope I have energy for skiing this weekend, I've really been looking forward to it.

Month 2

Month 2 begins tonight and I am jumping from 20mg twice a day to 40mg twice a day, which is based on body weight. Apparently my doctor was giving me a warm up dose. Although I was bitching and moaning for a stronger dose, I must say now that it is here, I am worried.

I have been feeling a little weepy lately.

I should not indulge in worry, but use the weepiness to alert awareness. I need to be in control of any depression potential, I need this medicine to work.

Day 22, Month 1

My skin on my nose and around it is peeling, but there are tons of really nasty blackheads there too. I hope the peeling starts to peel out those blackheads.

Right after my last post, I got three big cysts, one is still clearing up.

But other then that, the dryness, even in the desert was manageable.

Day 14, Month 1

We are in Tucson, AZ, which is obviously a dry climate. I think I might finally be detecting some dryness, but it could also be the desert. My skin looks really good however, which is great. For the past year and 1/2 I have been treated with minocycline, which worked really well, but can't be used forever. When I tried weening off it, the acne came right back. They put me back on minocycline for the month long waiting period be fore starting this, which cleared up my skin. I think coming into this with clear skin helped. I'm glad the breakout from last week is over. When I was using the minocycline, which I knew was going to be temporary, I really appreciated everyday my skin was clear, and still do now.

Hopefully my lack of dry and peeling side effects is due to all my diligent moisterizing, and not a lack of effectiveness. I have been using a fragrance free thick cream from Trader Joes, and Aquaphor on my lips and in my nostrils everyday, since before I started. I also drink tons of water. But the feeling that the medicine is working now, has me feeling optimistic.

Day 9, Month 1

I still don't have any side effects. And of course I hope that I never get a depression side effect, but I did associate the expected dryness with the medicine working. I am breaking out a little, and taking that as a good sign, but if I don't get other side effects, like dryness by the time this month is over, I will ask the doctor for the higher dose of 40mg twice a day. I'm not doing all this birth control stuff and not drinking, to get anything less then the best results possible.

Although, I have had a couple glasses of wine over the holidays, but very little.

Day 3

I feel tired, and have been sleeping really well, that is all I want to do. I feel a little moody, but I don't think the fatigue or moodiness can solely be blamed on the accutane, but also on the cold, the ice, and my very own laziness.

Day 2

I feel very tired and some what disconnected, but I think that has nothing to do with accutane and everything to do with the semester being over. I think I need to be more busy, and exercise more. Its just been so cold and snowy. All I want to do is sleep.

I am beginning to feel relief. There was so much effort and worry about getting the medicine, but now that I have it, and know everything will work just fine the next times, I am beginning to feel relaxed, and looking forward. Although all the processes seem so over whelming, that has a lot to do with my personality, not being able to switch gears very well. I am really optimistic about the out come of this treatment.

However, I forgot mention another very important restriction.

NO DRINKING! for the whole 5 months! The reports on the internet vary, but basically, accutane is bad for the liver and so is alcohol, so you don't want to give your body a double dose of work!

Keeping this journal feels really helpful.

Day 1: I am sure I am making this up.

I am sure this is psychosomatic, but I feel itchy, just a little, on my stomach. I am pretty sensitive in general, so I might be perceiving a change.

Day 1

So after eating, I took the first one. I take two a day, 20mg each. They came with even more information, that I must admit, I didn't read. I normally read everything that comes with any prescription, but this has become so much! The amount of information is over whelming and redundant. Here is my check list for the first month.

Stay moisturized: The doctor made fun of male patients for waiting until their lips are bleeding before they start moisturizing. This includes skin moisturizing as well as nose, eyes, and everything else.

Drink tons of water.

Don't get pregnant.

Look out for depression.

Don't drive at night: "sudden loss of night vision may occur"

No contact sports: skin may tear, bones may break.

SUNBLOCK!

During the first few weeks my skin may get worse, before it gets better.

Ok I think that's it. After the whole month of waiting, all the birth control anxieties, and everything involved, taking the first pill is full of psychosomatic responses, before it has even been digested.

All I can say, is it is easier to get crack, heroin, morphine, Oxycontin, or a wide variety of drugs that are addictive and make you feel good. It takes an extreme amount of dedication for a woman to want to, and then to take this drug. And my commentary is that this is all because of abortion and our country's obsession with it. I have seen my responsibility for not getting pregnant as simply, I don't want to have an abortion. I think having an abortion would be painful and awful. But no where in ALL the literature did I read, that abortion would be expected if pregnancy occurred. I asked my doctor if abortion was always an option and they said yes, and that it is what they would recommend it, if all else failed. So in my opinion all this work and waiting for accutane is about abortion.

I wish the literature had all the statistics associated with the various form of birth control. They gave me that information in high school. I feel like the scare tactics of the ipledge program have made me more distant from making accurate and informed decisions, rather then the other way around.

This pharmacist is really nice.

This pharmacist is really nice. He says he doesn't like my insurance. He says i'll get out of here. He is patient.
-Renee

Im at the pharmacy &

Im at the pharmacy & of course there is an insurance problem. I am prone to such little panics...
-Renee

Tomorrow

Tomorrow, I will begin the accutane acquisition. Last week on Thursday I had my blood drawn to confirm that I am still not pregnant, and that my liver works, and I could have gotten my prescription on Friday, but the ipledge program would not let the doctor prescribe it to me until the 15th. Why? I am not really sure.

So tomorrow I will wake up, meditate, and begin my calls. First I will call the wonderful nurse Georgia, who as soon she can, will log onto the ipledge website for the doctor and indicate that I am not pregnant, that my liver works, and that I am using an IUD and condoms. She will then call Walgreens and place my prescription. I then have to log onto the ipledge website and take a quiz about, I'm sure, mostly birth control. My answers concerning what I am using must match what the doctor said I am using, other wise I fail. And failing this process can mean I am locked out from getting accutane for 30 days! So no pressure. Then I will walk to Walgreens to pick up my prescription, and hopefully there will be no problems with my insurance coverage.

On a positive note. I will only have to this 5 times, once a month for five months.

Starting Monday

I will start taking Accutane on Monday.

But the challenges began a month ago when I had to join the FDA mandated ipledge program, in which I pledge not to get pregnant. Accutane causes serious birth defects. So being a woman of child bearing capabilities I must pledge to use TWO forms of birth control, for one month before I even begin accutane, meaning one hormonal and one barrier. I've been married to my lovely husband Michael for almost four years, and using a condom has been challenging for both of us. Hopefully it will result in more creativity and humor, but currently it feels frustrating. What is additionally frustrating is that even though I was given a book to read on how to use and choose two forms of birth control, it did not truly inform me of any drug interaction between accutane and hormonal contraception. I feel like this program is a scare tactic, when I would prefer being informed.

Accutane also threatens its users with depression, of which I am no stranger. After practicing sitting meditation for nearly three years, I have felt confident of my abilities to thwart off depression with great ease. This confidence resulted in me not meditating everyday, which has resulted in a resurgence of impatience, irritability, and anger. In preparation for this treatment, I have once again been meditating everyday, and I am meeting regularly with my meditation instructor at The Shambhala Mediation Center. I will use the discipline of meditation to keep a watchful eye on my mood.

So before the accutance has even started, I feel as though I am in a battle and I am preparing for more. What I took as good news from my doctor is that all of the bad symptoms will happen in the first month. So I feel like if I can handle the first month, I will be able to handle all five!

Accutane works in many ways, and while I'm on it my skin, nose, eyes, everything will be very dry. I have started collecting a kit of lubrications, but I should be more prepared. I should have travel and domestic versions of all the moisturizers I'll need.

At my last appointment, where they took my blood, my doctor greeted me by asking if I was ready to have acne free skin? She said I shouldn't do anything to my skin that wouldn't be done to a new born baby. I am getting new skin! For so many years, I though my acne would clear up. I thought I am too old to have this, so it will go away. I thought and heard from others that it wasn't that bad, but it was. It was really bad. Last year when I started on antibiotics and my skin became clear, I could tell people treated me differently, even Michael. And now, if this is successful, I will have clear skin. Not for the five months of treatment, but for all time after.