POSTED UNDER Laser Resurfacing REVIEWS
Pustular Rosacea Treating with Isotretinoin After All else Failed - Mount Juliet, TN
ORIGINAL POST
Originally diagnosed as infection at urgent care,...
NobodyReallyAugust 29, 2015
WORTH IT$10
Originally diagnosed as infection at urgent care, prescribed Keflex and Desonide.
Flare 1 lasted 4 months. It was swollen itchy, painful.
Primary thought same and gave me Bactrim.
Dermatologist #1 Metrogel(too harsh), then Sulfacetamide (did nothing)
Dermatologist #2 Prednisone, Doxy, Finacea, Oracea, Eurax, Azithromycin, Ivermectin. The prescribed the Isotretinoin, but while waiting for approval I spontaneously cleared, only to have it come back 4 months later.
Flare 2
Same dermatologist prescribed the newly approved Soolantra. This was not working. Also tried another dose of Ivermectin and some Permethrin which I practically had to beg for after showing him I did have too many Demodex by buying a cheap microscope and checking myself.
On to Dermatologist #3 as I needed one closer.
Used a steroid cream and Prednisone, then started on 10mg/day Of Isotretinoin and upped dose by 10mg every couple of weeks or so to where I am today at 40mg/day. These are my results so far.
No initial breakout since I started so low and went up gradually. Dry lips, skin, eyes and some lower back pain and vaginal dryness(yes it will dry you out here too) are the side effects I have experienced so far. I have been using lip balm, an Aloe with Vitamin E for my face and then a regular body lotion for the rest.
Flare 1 lasted 4 months. It was swollen itchy, painful.
Primary thought same and gave me Bactrim.
Dermatologist #1 Metrogel(too harsh), then Sulfacetamide (did nothing)
Dermatologist #2 Prednisone, Doxy, Finacea, Oracea, Eurax, Azithromycin, Ivermectin. The prescribed the Isotretinoin, but while waiting for approval I spontaneously cleared, only to have it come back 4 months later.
Flare 2
Same dermatologist prescribed the newly approved Soolantra. This was not working. Also tried another dose of Ivermectin and some Permethrin which I practically had to beg for after showing him I did have too many Demodex by buying a cheap microscope and checking myself.
On to Dermatologist #3 as I needed one closer.
Used a steroid cream and Prednisone, then started on 10mg/day Of Isotretinoin and upped dose by 10mg every couple of weeks or so to where I am today at 40mg/day. These are my results so far.
No initial breakout since I started so low and went up gradually. Dry lips, skin, eyes and some lower back pain and vaginal dryness(yes it will dry you out here too) are the side effects I have experienced so far. I have been using lip balm, an Aloe with Vitamin E for my face and then a regular body lotion for the rest.
Replies (12)
September 7, 2015
There's a sulfer cream for animals called Nustock that's super cheap and is the best thing I've found for my demodex/rosacea. I apply at night and sleep with it on, but it can be too strong to use a full strength so starting with a ratio of 50% Nustock mixed with a simple face cream or oil is best to start out with, and slowly work up to full strength. You can find it on amazon, along with many reviews.
October 9, 2015
Tried finnaea with little results.Been on soolantra (ivermectrin cream) for a couple of weeks.Things are getting better now but some paptules keep coming back in the same place. It is strange,Heals then without warning comes back.Still trying to find the trigger.The weather is changing cooler ,I wonder if that is helping some too.Been on a strict diet now too. Wanting to see if losing weight helps.
October 9, 2015
I tried those both, Finacea burned, Soolantra didn't do much.
If weight had something to do with it, I'd have great skin(I'm tiny)!
If weight had something to do with it, I'd have great skin(I'm tiny)!
March 10, 2016
My skin overall is healthier since i lost 50 lbs, now i am normal weight and bmi is normal. but same paptules come and go in the same place. maybe not as severe as last fall. Still using ivermectrin cream. I wash my face twice a day with liquid baby soap thats very gentle and lukewarm water.I sometimes dab rubbing alcohol. Hows your situation going?Havent heard from you in a while?
March 10, 2016
I am all done my accutane, I've been off for about a month or so. I get some bumps, but unlike the old ones, these now do not get big and pus filled, but dry up and go in a day or so. So far no clusters of them, swelling or itching. I too have used baby wash for a long time now...it's the only thing I could use that didn't burn during the flare.
March 11, 2016
Hi traciet,My situation is about the same. I never got the skin scrape but derm said they suspected dermodex too. It is very strange that it just comes and goes in the same place. It seems like its under control but with summer coming we will see what happens ,I know i am photosensitive. Ken
August 27, 2016
Hi!
You have certainly tried everything! I am very happy that you're skin is looking wonderful now!
I saw a dermatologist for my brand new rosacea yesterday, and all he prescribed was Desonide lotion. I'm afraid to use it after reading some horror stories. Did it help you at all?
Thank you in advance!
You have certainly tried everything! I am very happy that you're skin is looking wonderful now!
I saw a dermatologist for my brand new rosacea yesterday, and all he prescribed was Desonide lotion. I'm afraid to use it after reading some horror stories. Did it help you at all?
Thank you in advance!
August 27, 2016
No it did not and steroids really shouldn't be used as it can cause a worse rebound when you stop and thin the skin. It is ok temporarily to calm it before starting something else only, and usually not as strong as desonide, but a milder one. Steroids can even induce rosacea.
August 27, 2016
Thank you so much for your reply! I haven't used the cream bc I read some negative things about it last night and today. I am going to try a different dermatologist bc the one I saw yesterday looked at my skin from five feet away, and had started writing the Desonide prescription mere seconds after walking into the room. He was in a hurry, didn't ask questions, and left room before I had a chance to ask questions of my own. So you can only imagine how grateful I am for the info you provided!
August 27, 2016
yeah I totally understand. First derm wanted to prescribe me herpes meds(the kind for cold sores) and if it didn't work it was something else and they'd biopsy. Needless to say, I said no because I have never had a cold sore...do the biopsy first! Why waste the time when you can find out for sure now, not in 2 weeks when this doesn't work. You are supposed to diagnose, then treat, not the other way around.
June 1, 2017
I used so many different creams and lotions I lost count. The doctors pills made me feel ill also and I avoid them like the plague. Give proskin rosacea a try what have you got to lose.
UPDATED FROM NobodyReally
Better pics
NobodyReallyAugust 30, 2015
Trying to get better photos, they show up to small for detail.
Replies (0)
UPDATED FROM NobodyReally
Still suspect it was Demodex all along.
NobodyReallyAugust 30, 2015
I figure it cannot be a coincidence that I cleared up within a month after the Ivermectin last time, but I do strongly believe that you need multiple doses because of the short life span(14 days) and all of the eggs left behind from the ones you managed to kill off. Thats like treating lice and leaving the nits. I think it just took them a while to re-populate to cause this 2nd flare, and this time the meds weren't touching them! Derm didn't seem to think this was the case, but the clearing after it was quick and rather dramatic. He never even did a skin scrape. This is why I bought a cheap $25 USB microscope and $5 slides at Amazon. These photos show what I believe to be the culprit. Every pustule and bit of sebum I collected were filled with Demodex!
Since the Isotretinoin drys you out, I think it basically takes away their food supply(your oil) starving them to death as well as taking away that nice moist environment they need to thrive and this is why it may work. Just my own theory, but it makes sense.
I recommend for anyone, especially with pustular rosacea to push for the skin scrape!
Since the Isotretinoin drys you out, I think it basically takes away their food supply(your oil) starving them to death as well as taking away that nice moist environment they need to thrive and this is why it may work. Just my own theory, but it makes sense.
I recommend for anyone, especially with pustular rosacea to push for the skin scrape!
Replies (13)
September 16, 2015
I have pustular rosacea that I've just given up on - my face is a mess all the time. I get tired of applying the creams. It gets better when I use finacea but when I stop it comes back with a vengeance - worse than before. The term I go to pushes for the laser treatment. I did it once and it improved a bit but it is super expensive and not covered by insurance. You mention a skin scrape - are you talking about having a biopsy or is this a treatment?
September 16, 2015
It is a biopsy. If you have many demodex you won't need a deep scrape to find them. I found mine in the pustule samples and in oil squeezed from chin and sides of nose. The treatment I am on is a generic form of accutane.
September 24, 2015
Hello,I am your brother with this issue.Same look,Symtoms.Its really painful and itching.I have been too 3 derms as well and been prescribed the same things. I do think it is genetic maybe.But do too things we maybe ingesting.I really need to ask for myself.Do you drink alcohol or and use nicotine?Can we talk directly to compare lifestyles? Can you help us ?Ken
September 24, 2015
I do not drink alcohol, I did smoke for 20+ years until 7 months ago, now I use the e-cig.
This started over a year ago for me, so I know it is unrelated to quitting or the e-cig.
This started over a year ago for me, so I know it is unrelated to quitting or the e-cig.
November 16, 2015
I know what your up against I have been going back and forth with numerous Derma Docs as well (for 3 years now) and trying to get them to listen to you is almost non-existent and it is miserable. I have been on everything just as you and nothing has worked like (metrogel, Finacea, Doxy, Mino, Elidel, sulfacetamide topical, Clindacin, protopic) can not take prednisone anymore as it has thinned my skin but just 2 many 2 list, but did see improvement with the Ivermectin I was prescribed for 7 days but couldn't get them to give it to me anymore. So going back soon to see if I can get the script for Soolantra Cream (which is Ivermectin) and I will push to have the skin scrape as I have been doing, but may have to get my own USB microscope to make it more convincing. I wish you much luck and keep us updated on your progress. What are you using for skin care?, I'm finding almost everything I put on my skin just makes it angry!
November 16, 2015
I am taking the isotretinoin and using store brand aloe with vitamin E(it's marketed for after tanning) it's the only thing that doesn't make me feel like there is something on my face). I don't like lotions on my face. Also lots of lip balm!
December 30, 2015
I'm impressed by how far you went to research this on your own accord. Very interesting indeed.
July 27, 2016
Wow this is fascinating. Thank you for posting, and kudos to you on your detective work! Did your doctor require you to use birth control pills while on the oral isotretinoin? Was the ivermectin oral or topical?
July 27, 2016
I did not need birth control, as I had a hysterectomy years ago. If you are able to become pregnant you must have 2 forms of birth control and negative pregnancy tests monthly or the Ipledge program will not allow the pharmacy to fill the script.
Three dermatologists later and it looks like you may be on the road to clearer skin. I know it has to be frustrating but stay determined. Please keep us updated on your progress and thanks for sharing.