Accutane has cured my flushing

[Mknlvi]

The only thing I don't understand is how this has worked, I've been looking at lots of research about ultra low dose Isotretinoin and, the only thing I have come up with is that at low dose it can normalize the immune response of exaggerated toll like receptors (tlr2).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614089

The above was for acne but it says about Isotretinoin:
"Treatment of patients with isotretinoin significantly decreased monocyte TLR-2 expression and subsequent inflammatory cytokine response.. This effect was sustained six months following cessation of therapy, indicating that TLR-2 modulation may be involved in the durable therapeutic response to isotretinoin.
The modulation of TLR-2 expression on monocytes has important implications in other inflammatory disorders characterized by TLR-2 dysregulation."

If you can find a dose low enough that doesn't aggravate redness or flushing it can help down-regulate and normalize TLR-2 expression (TLR-2 is indicated in the pathogenesis or Rosacea). That might be how it helped you.

[Brady Barrows]

It would be interesting to find out what doses of Isotretinoin others have taken for Rosacea on this forum when it didn't help them. Search isn't bring up much on doses as low as 2.5mg a day.

Wouldn't it be incredible to unite rosaceans together into one non profit organization so that they could engage in this type of research with confirmed followup reports on those who say rosacea remission has actually been sustained for six months, one year, two years, five years?

[Brady Barrows]

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3614089

Thanks for the link. I have added it to the Cytokines and Rosacea post as well as the Low Dose Isotretinoin thread.

[laser_cat]

I started Accutane in December 2019 after exhausting all other treatments(antibiotics, topicals etc) over the last 7 years. My Doctor suggested low dose accutane at 5mg a day but even this dose caused my flushing to increase slightly. After a two week delay to get generic 2.5mg tablets, I started a dose of 2.5mg a day for the first month followed by 2.5mg every other day for the following three months. Finished the course at the start of May and my flushing is completely gone (been 4 months clear now). Only side effect I had was slightly dry lips, my doctor didn't even take blood test checks because he said the dose was too low. I began to get better after around 3 weeks in and the swelling took around 6 weeks. My Rosacea started in 2013 with extreme bouts of flushing and swelling, cheeks and nose mainly. Main triggers were food and bending/laying down. Never had any papules/pustules or acne.

It feels strange now being over it, almost like what was all the fuss about. I understand now why people without rosacea view it as trivial. Of course when you have it, it's like the end of the world and I'll never forget that.
Also this isn't remission, I had previously flushed every day for 7 years, now it's just gone. Since May I have had warm showers, helped my brother painting his house out in the summer sun for 7 hours. I'm eating ice cream and drinking cola (liquid sugar) with no flushing. Also put on around 14 pounds of weight and my skin is not flushing, like a normal person.

The only thing I don't understand is how this has worked, I've been looking at lots of research about ultra low dose Isotretinoin and, the only thing I have come up with is that at low dose it can normalize the immune response of exaggerated toll like receptors (tlr2).

THis is really interesting to me. Can I ask:

-Did your ears flush? Neck?
-Did you have night flushes and/or afternoon flushes?

Thanks so much. There are some docs who think vascular rosacea is totally different from other rosacea subtypes. (beta blockers, clonidine etc). I finally found a doc who thinks differently - that you can't really separate out the subtypes, they all might have overlapping pathologies.

I know flushers who are cured with doxy, eg. Full dose doxy helps my flushing quite a bit - more than bb's or clonidine ever did. I'm almost horrified that docs missed rx'ing the rosacea "gold standard" for me (doxy) at full dose before ruling out antibiotics (prescribed only at 4 yrs after onset for me!!)

I never worked up the courage to try ultra-low dose accutane, but I might. I know many people who had accutane spark their relentless flushing though which is terrible. Maybe it depends on someone's starting place, though, to some extent.

[laser_cat]

I started Accutane in December 2019 after exhausting all other treatments(antibiotics, topicals etc) over the last 7 years. My Doctor suggested low dose accutane at 5mg a day but even this dose caused my flushing to increase slightly. After a two week delay to get generic 2.5mg tablets, I started a dose of 2.5mg a day for the first month followed by 2.5mg every other day for the following three months. Finished the course at the start of May and my flushing is completely gone (been 4 months clear now). Only side effect I had was slightly dry lips, my doctor didn't even take blood test checks because he said the dose was too low. I began to get better after around 3 weeks in and the swelling took around 6 weeks. My Rosacea started in 2013 with extreme bouts of flushing and swelling, cheeks and nose mainly. Main triggers were food and bending/laying down. Never had any papules/pustules or acne.

It feels strange now being over it, almost like what was all the fuss about. I understand now why people without rosacea view it as trivial. Of course when you have it, it's like the end of the world and I'll never forget that.
Also this isn't remission, I had previously flushed every day for 7 years, now it's just gone. Since May I have had warm showers, helped my brother painting his house out in the summer sun for 7 hours. I'm eating ice cream and drinking cola (liquid sugar) with no flushing. Also put on around 14 pounds of weight and my skin is not flushing, like a normal person.

The only thing I don't understand is how this has worked, I've been looking at lots of research about ultra low dose Isotretinoin and, the only thing I have come up with is that at low dose it can normalize the immune response of exaggerated toll like receptors (tlr2).

Also - how much (kg) do you weigh? Just wanted to get a sense of the dose mg/kg you used

I remember poking around online trying to find out why accutane can have such a dual effect. I've found sources say accutane can trigger mast cell activity

https://www.sciencedirect.com/scienc...Y_MN5TuDguhMUK

https://pubmed.ncbi.nlm.nih.gov/2094...he%20group%202.

https://onlinelibrary.wiley.com/doi/...1993.tb00006.x

and also sources to say accutane can help with mast cells eg the downstream rosacea effects in the diagram in this paper by inhibiting tlr2

https://www.mdpi.com/1422-0067/17/9/1562/htm I think a lot of us notice vit D makes us (flushers) drastically worse - and in theory accutane would target the upstream root of this (TLR2) - assuming vit D is bad because it upregulates LL-37 rosacea pathway bla bla. Vitamin D makes my ears so much worse.

I had a derm who said he used low dose accutane in lupus folk for its good perifollicular inflammation properties, which surprised me bc they're already light sensitive folk.

It would be super interesting if an accutane-induced person found improvement after going back on accutane (slow titration) but I understand why they wouldn't want to try it again!

I talked to my doc - he suggested 2-5 mg / day to start for me. (one of my docs, anyway) he said accutane is real good at sending lymph to the lymph nodes (presumably). I had an interesting experience of taking a lot of benadryl - after several double doses, it felt like all the irritation could drain from my scalp, ears, eyes, nose etc and down the sides of my neck and my neck felt slimmer and more flexible. I'm guessing the anticholinergic mechanism of the benadryl or something encouraged lymph node pumping. Supporting the overall idea of an imbalance between inflammation in the face and lymphatics unable to drain. I think I read somewhere that there are some people who think this is the underlying idea of all rosacea subtypes (it's the idea of end-stage rare variant Morbihan's) but probably won't be able to find that again. After the benadryl experience though, I might agree. The ear burning stopped, I could bend over, etc. It literally felt like benadryl vaccuumed up all the burning heat from my ear - the relief was very distinct like an off-switch, like having a stuffed sinus get cleared. (Unfortunately this is an unsustainable amount of benadryl for me, but it was still an interesting experience)

[RedMage]

Im also trying low dose accutane now reduced from 5mg every other day to 3,33mg. Now its a 7th week going.
First 4 weeks were great, you could see by your eyes how the redness is fading from your face ;]
The 5th week was a major crush moment, for a whole week my redness was counterattacking. My face was looking bad and I was feeling bad. That was the moment when I changed the dose.
The 6th week was alright and now im at the 7th and it still looks good. Not a major breakthrough but its calm, doesnt flush, just a pink skin without hot redness.

Some insights I may have.
My ears are getting more red now I think, unless I imagine thinks, especially after the shower. Didn't notice them as much previosly. But it may be because I was focus more on face.
Ma hands used to be cold even at the normal or warm temperatures and now it happens more often.
And I have had all other side effects, dry skin T-shaped on face, nose, lips, forehead, dry eyes. But that is easy to fix.

Hope you will find your way with Isotretynoin also succesfull.

[laser_cat]

Im also trying low dose accutane now reduced from 5mg every other day to 3,33mg. Now its a 7th week going.
First 4 weeks were great, you could see by your eyes how the redness is fading from your face ;]
The 5th week was a major crush moment, for a whole week my redness was counterattacking. My face was looking bad and I was feeling bad. That was the moment when I changed the dose.
The 6th week was alright and now im at the 7th and it still looks good. Not a major breakthrough but its calm, doesnt flush, just a pink skin without hot redness.

Some insights I may have.
My ears are getting more red now I think, unless I imagine thinks, especially after the shower. Didn't notice them as much previosly. But it may be because I was focus more on face.
Ma hands used to be cold even at the normal or warm temperatures and now it happens more often.
And I have had all other side effects, dry skin T-shaped on face, nose, lips, forehead, dry eyes. But that is easy to fix.

Hope you will find your way with Isotretynoin also succesfull.

One of my docs said at the 5th week or so, there is a spike in inflammation from the accutane.

Pls keep us posted. Are you taking 3.33 mg every other day?

[laser_cat]

i tried accutane for 2 wks. a few days of 5 mg / day, a few days of 10 mg / day and a few days of 20 mg / day. I have severe flushing and solid edema and neurogenic rosacea. I was also on 500 mg BID flagyl at the time - which to me helps the flushing (anxiety, night) but not the edema or sensitivity. Was told accutane is the best treatment for solid edema (Morbihans - when it is the main feature of rosacea ... since I have other features, docs go back/forth on giving me this diagnosis).

Anyway, each of my family members noticed a positive difference with accutane. I could walk down the hall and not feel the air like frostbite on my cheeks. Skin wasn't as red. Skin texture improved. There was a day of extreme itchiness where I'm guessing it was purging all the dead skin cells from my face. For the first couple doses after a dose increase, I think i had hotter ears for an hour - nothing major. It's possible that the flagyl I was on simultaneously was blocking any accutane-induced flushing. (I've been on flagyl before and know what it can and can't do)

Docs disagreed about target dose - one wanted a slow titration 10-30 mg / wk and the other wanted at least 20 mg / day to start with. Likely patient dependent and depended on my edema, not sure. Both said if I can tolerate it, target dose of 1 mg / day which is 40-60 mg / day for me.

I stopped, due to a rare side effect that docs aren't sure came from the accutane or not. (More- they don't think it's accutane-related, but I am not sure..) (Intense pressure in my skull.) After I get cleared by a neuro I think plan is to do a slower titration. Out of dozens and dozens of meds, I can see a solution working with full dose rosacea antibiotics (either 1-2) paired with an accutane course. I am a severe case, and for a while was bedbound from the rosacea (frostbite or burning sensations from the air). From what I understand from my longtime derm, the interstitial fluid is just stuck on my face, with nowhere to go but sensitizing the nerves. If the lymphatics can work better, there will be less inflammation, less nerve sensitivity, less flushing, less edema.

Best

Another note - from what I read in literature, seems like accutane can work better for solid facial edema with an antihistamine (like ketotifen).

[Jamoverton]

i tried accutane for 2 wks. a few days of 5 mg / day, a few days of 10 mg / day and a few days of 20 mg / day. I have severe flushing and solid edema and neurogenic rosacea. I was also on 500 mg BID flagyl at the time - which to me helps the flushing (anxiety, night) but not the edema or sensitivity. Was told accutane is the best treatment for solid edema (Morbihans - when it is the main feature of rosacea ... since I have other features, docs go back/forth on giving me this diagnosis).

Anyway, each of my family members noticed a positive difference with accutane. I could walk down the hall and not feel the air like frostbite on my cheeks. Skin wasn't as red. Skin texture improved. There was a day of extreme itchiness where I'm guessing it was purging all the dead skin cells from my face. For the first couple doses after a dose increase, I think i had hotter ears for an hour - nothing major. It's possible that the flagyl I was on simultaneously was blocking any accutane-induced flushing. (I've been on flagyl before and know what it can and can't do)

Docs disagreed about target dose - one wanted a slow titration 10-30 mg / wk and the other wanted at least 20 mg / day to start with. Likely patient dependent and depended on my edema, not sure. Both said if I can tolerate it, target dose of 1 mg / day which is 40-60 mg / day for me.

I stopped, due to a rare side effect that docs aren't sure came from the accutane or not. (More- they don't think it's accutane-related, but I am not sure..) (Intense pressure in my skull.) After I get cleared by a neuro I think plan is to do a slower titration. Out of dozens and dozens of meds, I can see a solution working with full dose rosacea antibiotics (either 1-2) paired with an accutane course. I am a severe case, and for a while was bedbound from the rosacea (frostbite or burning sensations from the air). From what I understand from my longtime derm, the interstitial fluid is just stuck on my face, with nowhere to go but sensitizing the nerves. If the lymphatics can work better, there will be less inflammation, less nerve sensitivity, less flushing, less edema.

Best

Another note - from what I read in literature, seems like accutane can work better for solid facial edema with an antihistamine (like ketotifen).

Thank you for the update! I hope that the side effect gets cleared and that the Accutane helps you. It worked great for me when I was younger- I took it when I was about 19 (over a decade ago) for some moderate, but persistent acne. I think I can remember it lessening the general inflammation in my face and it was like my face sort of slimmed down, in addition to working on the actual acne breakouts. I do plan on trying it again at a low-dose for my flushing and edema issues. Like you mentioned, the edema seems to cause the flushing and vice versa- hoping there's something that can break that cycle.

[laser_cat]

Thank you for the update! I hope that the side effect gets cleared and that the Accutane helps you. It worked great for me when I was younger- I took it when I was about 19 (over a decade ago) for some moderate, but persistent acne. I think I can remember it lessening the general inflammation in my face and it was like my face sort of slimmed down, in addition to working on the actual acne breakouts. I do plan on trying it again at a low-dose for my flushing and edema issues. Like you mentioned, the edema seems to cause the flushing and vice versa- hoping there's something that can break that cycle.

Yeah, I can def see how it would slim down your face. I hope it goes well for you too. It even slimmed down my neck, which I didn't realize was tight.

Funnily enough (or not?) I went to the ER for my skull pressure / headache whatever thing. My brother later told me when he dropped me off - "Wow, she's handling these temp changes like a normal person - car to outside to inside the ER.."
At the time I was scared for my life (I'm better now thankfully) and this was the most striking thing to him about the situation. Lol.