Hiii. So far I have been through all 13 pages of the topic titled "*FREQUENTLY ASKED QUESTIONS* for Accutane users, Accutane and generic (different brands)" ....I wanted to jot down my questions along the way..



1. I read that someone had to wait 3 weeks before they could get their last dose of accutane perscribed to them because of ipledge. Does this happen to everyone? Why would ipledge make ppl wait 3 weeks to take their last dose?


2. Do you have to be registered in ipledges system for 30-days before you can fill your first perscription of accutane? (that's what my doctor has told me that ipledge told him) .....ipledge is SO confusing!!!!
I had my first blood test done at the end of November 06 (negative), then I got registered in December 06, Got my booklets from ipledge earlier this month January 07.. at this visit I also took a pee pregnancy test (negative), I've been on BCP for over 6months now so all that's good to go. I got my booklets, got my script, then the doctor called and told me that I had to be registered for 30-days before I can take that online test and fill my perscription. GREAT! Another month. Well that's fine... I just want to make sure there won't be anymore setbacks when I go back in in February 07. Have I done everything correctly??? Should anything else be done in order to make sure there are no more set backs???


3. Could someone please list helpful things to keep around while on accutane?
- chapstick (aquaphor....... what else?)
- vitamin e (how much is reccommended?)
- stool softener (one of my doctors said she was on accutane and this came in handy.... anyone else know about this?)
- lubercation for your private parts (??)
- fish oil (or if you're a vegetarian like me, flax seed oil!)
- moisturizer (that's obvious
- nasel spray (???)
- eye drops (genteal tears???)
- lots and lots of water (which is 98% of liquid i consume as it is)
.....I'd like to make a shopping list of helpful things so I can be ready! ANY suggestions (and an explanation of why) would be appreciated!


4. If you spend some time in the sun one day and don't normally burn... what exactly happens while on accutane?


5. I am very, very confused on doseage of accutane. I am the first patient that my doctor has perscribed accutane to. I weigh 115lbs, I am 22 years old, and I'm about 5'4" .......How much should I be taking?
I haven't gotten accutane yet because of some ipledge "30-day" rule though I have had 2 pregnancy tests done (negative x2), etc.
So I'd also like to know, as the months of being on accutane go by... should the doctor up the doseage? How exactly does doseage of accutane work? Help!
Though I am horrible at math, I understand that to prevent relapse you have to take between 8400 - 10500mg by the end of your treatment. I don't think my doctor is aware of this. hmmm.


6. Do you have to re-do the ipledge online test every month before you can refill your accutane perscription? (I saw that the answer to this was 'yes' in one thread, but I just want to make sure!)


7. Is this how the monthly process looks for you females on accutane?
- go to doctor, get perscription written & pregnancy test done
- doctor updates your stuff in ipledge system
- you take ipledge test & pass
- you can the refill your perscription at pharmacy.


8. Every month, what tests does your doctor run on you? blood tests (pregnancy, and what else?) and/or pee pregnancy test?
Do you HAVE to have a blood pregnancy test done every month to clear with ipledge or can you do the pee test instead?


9. Accutane (even generics) without insurance is INSANE. I'm going to look into student loans.. but.. ouch. I saw someone mention getting medical aid... what exactly do you mean by this? Money is going to be so incredibly tight (though it already is) while on accutane, and I am so scared that there will be a month where I can't pick it up from the pharmacy.



I've gone back about 8 pages in the whole Accutane forum and read alot of interesting posts. I have some high hopes here! The questions I've listed here are the only ones that come to mind right now. Any responses will be very helpful.


Thank you!!

I've only listed the questions I think I can help answer. I'll leave it to others for the rest.

#3: I use vaseline, aquafor and Blistex Gentlesense stick for my lips. I use common skin moisturizer (moisturele, curel, etc.) for my face. I use Systane eye drops when my eyes are dry. I haven't had other issues. I don't take vitamins or supplements, except I have been taking Milk Thistle to reduce impact on my liver.

#4: SUN: I HAD to use sunscreen every day or I would burn. I just put it on routinely in the morning and later if needed. I bought non-comedogenic types (regular and sport) and they were excellent moisturizers as well.

5. DOSAGE. You weigh about 50 kg (pounds/2.2). "normal" daily dose is 0.5 - 1.0 mg/kg/day. For you that would be 25 - 50 mg/day. It is not unusual to round these things, so if you are on 60, I wouldn't consider that a high dose, just that it's easier to dispense than 50/day because of the way the med is manufactured. That said, it is not unusual to go up to 1.5mg/kg or even 2.0 (for you that would be 80 - 100/day)

Sometimes doctors start you at the low end (say 20/day for you), then ramp it up - say a month at 20 then a month at 40, then continue at 60. Sometimes, they start with a medium or high dose and stay there. To me, if you started on anything between 20 and 60 it would not be unusual. I would expect you'd end up on 40 or 60/day, but 20 wouldn't be all that odd for a person of your size. The daily dose is often adjusted to minimize side effects while still solving the problem.

More recent studies are showing that regardless of the daily dose, statistically the best overall results are found if you take a cumulative dose of 120-150 mg/kg. This is the total of all the daily doses you'd take over the course of your treatment. Simply take the daily dose for each month and multiply it by 30 for that month. Then add all those up and see what the number is. Divide that number by your weight in kg (i.e. 50). That is your cumulative dose/kg and it should be in that 120-150 mg/kg range. For you (50 kg), you'd be looking at 6,000-7,500 mg total. The final amoung will most likely be based not on stopping when you reach a magic number, but rather stopping at the end of a month. Your doctor won't stop you at some magic number if it happens in the middle of the month.

The numbers you listed (8400 - 10500mg) do not relate to someone of your weight. They would apply to someone in the 70kg (155 lb) range. Remember, both daily and cumulative dose is based on weight, not a set number. There is a lot of overlap in the ranges though, so you could very well be taking the same dose as someone larger or smaller than you.

8: TESTS: For a guy, the only monthly blood tests I've seen are blood lipids (cholesterol, etc) and liver function. I'll leave it up to a female to answer the pregnancy questions.

Thank you so much for your response. I'm glad you explained the whole weight - dose thing. I definitely get it now.

I hope more people respond. I'm really curious about the monthly ipledge thing for females!

-Amanda

As a male, I too will answer only the ones I know:
1.) I've never heard of anything about having to wait 3 weeks for the last script. Maybe it was because of blood test results.

2.) Yes Ipledge is hecka confusing. I don't think you have to wait 30 days after registering to get your script (I maybe wrong though because it's different for females), just register asap and answer some questions. From my experience make sure that if you have health insurance, the derm. writes one that is covered. I had a stupid incident regarding the insurance company not wanting to cover a specific dose despite the fact that it was generic.

3.) I use Carmex and I have one almost everywhere. Trust me you don't wanna be without lip balm for over a long period of time.
-A lot of people take 2x Vitamin E 400IU=800IU. I take only one because I don't like to pop a lot of pills (I usually forget).
-Stool Softener, yeah I noticed that Tane made me irregular. I was gonna buy Benefiber tablets but since I hate popping many pills, I did some research online about high fiber cereals (I love cereal). Bought a box of Fiber-one w/ honey clusters (Mmmm) and within 1 week I was back to normal.
-Cetaphil spf 15 daily moisturizer for me.
-Instead of nasal spray I rub Vaseline in my nose
-Visine Tears
-If you're prone to sun burn then a good sunscreen would help (like SPF 65)

4.) Use sunscreen and keep your face moisturized.

6.) Yup I believe so.

9.) Student loan would be a good idea. I use my student loan to help pay for my health insurance. Check out some health insurance companies while your at it (good investment for the long run).

I hope I helped.

Just bumping my post up in hopes that some females can answer... or really anyone who knows!!

I'd really appreciate some more helpful responses.




-Amanda

It only happens if you fail to meet the timing requirements of iPLEDGE. Because of the way exposed pregnancies have occurred in the past, iPLEDGE requires that you must have your pregnancy tests at least 30 days apart, and that the pharmacy must dispense the prescription within 7 days of the office visit. If for some reason you don't get the prescription within the established timeframe, you are locked out of the system for 23 more days (23+7=30) at which point you'll have to get another pregnancy test and prescription. These guidelines are far too strict at the moment and iPLEDGE is in the process of revising them. The lockout period for males and women not of childbearing potential has already been lifted. Hopefully at some point in the future they will allow women who are of childbearing potential to take another pregnancy test and get a new prescription without requiring the lockout.



iPLEDGE requires that you have a negative screening pregnancy test at least 30 days before your first prescription, yes. Those results have to be input by your doctor into the system, so you have to be registered before that. Your doctor must register you, and then iPLEDGE sends you a "password" (it's a number, really more like an ATM PIN) and you use that and the number on your IDcard as a username to login. If you never get the password in the mail you can get someone at iPLEDGE to give it to you verbally if you can get anyone to pick up the phone at their call center. Then you need another pregnancy test, results input into the system, you must answer the questions (the answers can all be found in that big yellow binder) on the website or phone, and then you can take your iPLEDGE ID card and prescription to your pharmacy. The pharmacy must dispense within 7 days of the office visit or the system eats your script and you are locked out for 23 days.


There are tons of threads in this forum with people's opinions on which products are best and where to get them. I don't have the patience to type it all up again right now, sorry. But i should mention that i really don't think that flax oil will have the same beneficial effect as fish oil. Fish oil has natural anti-inflammatory properties which seem to prevent or reduce the deep joint aches that often occur with Accutane. I am not aware of any data which suggests that flax oil has similar anti-inflammatory properrties.



When you are on Accutane your skin will likely become very sensitive to everything, and that includes sun. It is much easier to burn on Accutane, and i feel that even if you don't burn, you are nevertheless receiving more damage from the exposure than you normally would. I strongly urge you to not take chances in this realm, some members of this forum have ignored this warning and been badly burned. Some have reported that they didn't burn but had signs of sun damage (freckles) that they didn't have previously.


I would personally not trust a doctor who has never previously run a patient through a course to learn on me. Sorry, but i really recommend you find an experienced dermatologist. The iPLEDGE system does allow you to change providers during a course.

115lbs is approximately 52kg. The standard dosing guidelines are to start at a lower dose of approx. 0.5mg/kg, so around 20-30mg/day. After a month or two, depending on how you respond, your doctor will probably raise your dose to about 1mg/kg which will mean 40-60mg/day. Some doctors are more conservative and may keep you on a lower dose, or may start you right at the 1mg/day dose although that increases the chance of an initial flare. If you have bad acne that does not respond well, Roche defines the max daily dose as 2mg/kg which would be about 100mg/day and a very high dose for your weight. Most courses are 4-6 months long, but sometimes they tack extra months onto the end.

The cumulative dose you mention is not carved in stone. Taking a total of 120-125mg/kg gets you the best chance of remission, but remission can and does occur at higher and lower cumulative dosages.



Yes, you have to answer their questions each month, after the pregnancy tests are input by your doctor and before you take your script to the pharmacy.


For my doctor, she gave me the slip for bloodwork for next month at each office visit. I would go to the lab a couple days before my scheduled doctor visit and have the bloodwork done, then show up at for my appointment. Then she would input my results and give me the script, then i had to go home and take the test, then go to the pharmacy and drop off the script - and pick it up within 7 days of the date of entry for the bloodwork. There are not refills for Accutane, you must get a new script each time.



Most doctors require blood lipids (cholesterol, triglycerides, etc) and liver function in addition to the pregnancy test. Some doctors also want stuff like blood sugar or blood cell counts. If i recall correctly, you can take the pregnancy portion with a urine test in a lab (not a home test), but since you will probably be required to take bloodtests for the other panels, you may as well have the more accurate blood pregnancy test too.



Yes, it's incredibly expensive if you are in the US, even the generic. As far as i know, all the programs that were in place to help people who could not afford it (like doctor's samples and the Roche Patient Assistance program) were cancelled when iPLEDGE began. They want to be able to track every single prescription written and the only way to do that is to require that it only be dispensed through participating pharmacies. Your options are limited. You could try to get an insurance policy with prescription coverage, but your acne would likely be excluded as an "existing condition" and coverage for Accutane is spotty, you'd have to do some research. The other option is to get a medical loan. Capital One offers them at exhorbitant interest rates. You could put it on a credit card instead if you have a high enough limit and it has a reasonable rate. There are probably other companies that also offer personal loans or loans for medical expenses. I would strongly discourage you from using student loans to pay anything other than tuition/books/room&board.