Started low dose accutane \ isotretinoin for rosacea

[flying_er]

No you are not wrong. Fine maybe not perfect skin but heck yes as best as possible. You just need to continue on the low dose. Unfortunately higher dose will make your ears flush that is not good either. I agree try to find another derm but that is so totally difficult! I've been searching for a good one for so many years no luck yet, but I still continue the search!

Good luck, things will get better as you continue your progress with accutane.

Thanks for the support Alba. I agree, I'll just continue taking the low dose and see if things eventually improve. I'm certainly not looking for perfection, semi-normal would be fine. It just made my blood boil that my doctor thinks I should just accept what I've got now and be happy with it.

[Alba]

MY blood boiled too, Imagine when my rheumatologist tells me that at the moment i have nothing even thought some test came out positive and that i really have to stop thinking about it put it out of my mind stop worrying and the problem with my hands has not idea what it is. NO HELP whatsoever! Thankfully i have a wonderful primary dr and i keep praying that someday i find a good thoughtful caring derm, hey we can dream! LIke the wonderful Dr. Chu i think he is in London, God i so wish i could go see him!

[3ac3]

Hi 3ac3 and welcome to this thread. I agree, 10mgs seems like nothing but some of us are really sensitive to this med. If I took 80mg per day, I think it would make my head explode ;-)

- Dave -

"head explode"- that's funny
But sadly I believe you it is truth! I took 40mg and had several issues with side effects. I was very lucky, my dermatologist hit the right dose- borderline between progress and bad side effects!

[flying_er]

I've now completed 6 months on accutane. I've played around with the dose quite a bit trying to find a level that will help with my P&Ps but not irritate or cause my ears to flush\turn red. I've found that the dose that works best for me is one 20mg pill every four days. For some reason taking a 10mg pill every other day doesn't seem to work all that well. I do get some relief from this dose, but I am not symptom free as I had hoped I would be when I started accutane. I get fewer P&Ps than I did before accutane but I'm certainly not blemish free.

I've recently added a probiotic to my daily routine and I'm starting to use a bit of Tea Tree oil at night. I'll monitor these additions and see if they help. I've also been monitoring\changing diet and trying to figure out trigger foods etc.

How are the other accutane users out there doing?

-Dave-

[bluesky]

Hi... I'm about 5 months in; BUT, I probably will not be able to continue w/ it anymore as my lovely insurance has decided to cut my supply off, so I only have a few more pills, we'll see if they change their mind but even if they do I will still be left hanging this month. I have been taking 10-20 mgs per day, mostly 20 mgs but now that I'm cut off I've been using only 10 mgs a day. I am VERY happy with what accutane has done for me though, my skin is almost poreless and any bumps that do arrise disapear very quickly. I do still have scars/red marks from my old blemishes but for the most part, aside from my PD which has been hanging around, granted atleast 85% improved, so... very happy! I don't wear foundation for the most part anymore which before was something I couldn't even begin imagine doing.

I'm scared to come off it and also very upset that my insurance is doing this for me as I have not reached my cumulative total, and having moderate acne, I would really hate for all of this to be in vain and have all those breakouts return in a month or two. Also I'm so nervous about what to do for skin care etc!

Sense decreasing my dose my PD is getting kind of bad and creeping back in again, and as I have a life I need to accommodate to I am going to need to wipe it out ASAP as soon as my last 10 mgs pills are gone, as it seems a 1 in 4 chance that my insurance will give me another month of pills. So, I'm going to have to get on a high dose course of erythromycin or perhaps doxy as soon as I run out of pills, and then afterwards I'll likely stick with oracea and oil-free, gentle skin care, and alot of hope!

[Melissa W]

Hi Bluesky,
That is very unfair of your insurance company! How can they cut you off if you have not even reached the cumulative dose you were aiming for initially? Have you started an appeal process? This really burns me. I don't want to get on my soapbox about the insurance companies now so I will spare all of you from my diatribe. However I will say that things appear to be getting worse concerning this issue rather than better.

Anyway, please have your doctor write a letter pleading your case as well as you writing one and then make sure you keep at them so you can continue with your medication. Fingers crossed it works out for you!

Best,
Melissa

ps congrats on all the progress you have made so far!!

[Snegovik]

Dave,

I am slowing down on accutane and will stop it next week because of laser treatment and a small surgery in my foot in april. According to my surgent and dermatologist I could stay on accutane as long as the dose is so low, but I stop it just to make sure. This week I took 1, 20mg pill only. I can feel some of the burning is coming back and that my skin is more oily.
The side effects I struggle with is headaches, stiff neck and ear flushing.

To those who say that accutane only works for rosaceans with pustules or acne, I can only say that I disagree. For me it works against burning, small acne, redness, teleangestia and oiliness. Maybe accutane have a better permanent effect on acne and pustules, that I don`t know yet.

It has been nice to have a relief from the harsh topicals, this winter. I will maybe go back on it after surgery and laser. Will see how my skin reacts when the summer is here.

[Melissa W]

To those who say that accutane only works for rosaceans with pustules or acne, I can only say that I disagree. For me it works against burning, small acne, redness, teleangestia and oiliness. Maybe accutane have a better permanent effect on acne and pustules, that I don`t know yet.

Good to know!
Thanks for sharing your experience and best wishes for continued success

[flying_er]

Snegovik,

Good luck with your Laser treatment and operation. I hope it all goes well for you.

-Dave-

[bluesky]

Hi Bluesky,
That is very unfair of your insurance company! How can they cut you off if you have not even reached the cumulative dose you were aiming for initially? Have you started an appeal process? This really burns me. I don't want to get on my soapbox about the insurance companies now so I will spare all of you from my diatribe. However I will say that things appear to be getting worse concerning this issue rather than better.

Anyway, please have your doctor write a letter pleading your case as well as you writing one and then make sure you keep at them so you can continue with your medication. Fingers crossed it works out for you!

Best,
Melissa

ps congrats on all the progress you have made so far!!

Hi Melissa,

Yes I'm very upset! I got a letter in the mail the other day from my insurance company informing me that they reviewed my case and the meds/treatments I'm taking presently and in the past, and they said based off that I'm denied further treatment on accutane. They have only paid for 4 months though, which isn't even long enough for a normal dose course yet alone low dose.

I don't know that there is much I can do about it though and honestly I don't have time or the resources to hire a lawyer and appeal it. I assume due to the high volume of "care" I receive and all the prescriptions they are likely very sick of me and think I suck the life out of my funds etc. granted I guess I do, but hey isn't that what insurance is for?? Also I have never really used insurance at all aside from maybe yearly visit to the Dr if even up until now, w/ rosacea and what not in the picture as I do indeed visit my GP/Derm alot and will be going to a rheumatologist soon etc., I additionally get a ton of testing done, also I'm on clonodine, remeron, and have a script for propanol as well.

My game plan at the moment is to go to my GP appt. that is already scheduled and ask that he prescribe me spiro @ 25 mgs, then hopefully increase to between 50-100 mgs in a month or so, and also request that he write me a script for a 2 month course of tetracycline, that of which has 3 or 4 refills so in case the POD comes back in the future I can kick it in the butt pronto. Also going to ask for metrogel to topically treat the POD as it seems like alot of folks have sucess w/ that in combo w/ the antibiotics. Also contemplating adding a BC pill into the mix for extra acne prevention but not Yaz/Yasmin as I dislike both of them, so I guess ortho-tri-cycline or ortho-cycline... but I'm nervous about how BC will play w/ my rosacea, also worried it may cause breakouts etc. initially as I know finding the right BC is a hassle!!

Thanks for your concern though, I really wish there was a way I could stay on accutane but it doesn't seem like it's going to happen. I have a box of 40 mgs which I could technically take one every 3 or 2 days but 40 mgs in one hit is a little much for me. I just hope so much that the acne will stay away! Rosacea and flushing is more than enough on my plate!

talk soon and thanks again!

bluesky