Quote Originally Posted by owldog View Post
Thanks laser cat. I know what you mean. Docs really seem to ignore the flushing side effect with Accutane.

I've been on and off Accutane for a long time. I had very severe acne when I was a teenager so they put me on a high dose 40mg a day (I'm very small so that's high for me) for 6 months. Cleared up the acne beautifully however it kept coming back, more mild but persistent, through my 20s. I also have really oily skin. So they put me on a low dose regimen of 10-20mg a week.

My skin was great. I had no eczema in that time (weird I know as you'd expect the dryness to exacerbate eczema), barely got ill and my allergies were dampened down. After 15 years of this regimen and getting on with my life etc I decided maybe I shouldn't be on this drug anymore so I started lowering my dose to 10mg every 2 weeks then trying to taper off.

That's when the extreme flushing started and I stopped taking accutane immediately. I also developed Raynaud's around this time. It's been 2 years since and my skin is worse than ever. And 8 months after I stopped accutane I developed rashes which were diagnosed as subacute cutaneous lupus.

So who knows if accutane gave me lupus or triggered it. I have a family history of autoimmune illness so perhaps it may have triggered something that was dormant. Or I may have ended up getting it anyway. I really don't know. But at this point I'm willing to take a risk and retry taking it. One doc seems to think the accutane may have actually been holding back the autoimmunity I already had as it was triggered when I lowered my dose.

It's a weird drug as it's both helpful and can be harmful. No surprise it was originally used as a chemotherapy agent for people with brain cancers. The rheumatologist I see thinks for me for the acne I've been getting accutane is safer than something like spironolactone which he thinks could trigger lupus flares. I'm trusting him at the moment on this one. But obviously if the accutane makes me worse I will definitely reconsider.

Can you go ahead taking the accutane with flagyl? If that worked so well is there a reason behind not taking them together? Perhaps you can convince your docs to try that again. You definitely wouldn't lose your foothold so don't worry about that.

You are definitely right about taking something that counteracts the flushing effect that accutane seems to trigger in some people. If my experiment doesn't work too with accutane alone then I may try with ketotifen too. I also thought about trying with LDN, I saw a paper about it being helpful at stabilising mast cells in the gut.

Honestly I wish my docs would consider me taking accutane with antibiotics however the ones I'm seeing are pretty conservative in their dosing and due to the lupus I have they're reluctant to prescribe antibiotics as they think it may send me into a flare. I'm willing to try it though.

Thanks for explaining all that. Sorry you've been dealing with skin issues for so long. I'm glad accutane helped you for as long as it did.

My docs in CA have realized I'm a very difficult case (Dr. Berger at UCSF and a derm at stanford). Dr. Berger gets tertiary referrals and I asked him how often his vasoactive/nerve/antibiotic protocol worked for neurogenic rosacea patients? and he said 80%. I asked "are they as bad as me?" He said "you're in the top 20-25%" So he supports flagyl for me. He's had patients who get sensory neuropathy on it and says their skin benefits outweigh that (huge) side effect... and at this point I agree. He said "sometimes it's the only drug that works for rosacea." The docs I'm seeing out here I think want to be more conservative, maybe it hasn't dawned on them I've lost a piece of myself and a large part of my life for several years due to this. I want to ask for ketotifen though first - I think a less powerful drug but I can see that complementing the accutane well. Maybe my local docs would go for that ....

Yes, the flagyl definitely helped accelerate the accutane effectiveness.

I could see accutane masking some of the autoimmune issues for you. And I have to thinkj about issues with rebound iwth any drug I take. I don't usually hear about flushing starting after stopping accutane - so that's interesting. I hope getting on a maintenance dose will be just what you need, then. My CA docs give maintenance doses for life to a lot of people, they aren't concerned about doing that. Actually, I think they all must be on a maintenance dose of accutane - derms' skin always looks perfect? "He could be 35 or 50... hard to say"

Good luck and keep us /me posted Thanks for sharing your story.