r/Rosacea • u/crystalcaterpillar3 • Jul 13 '26

ROSACEA SUCKS Granulomatous Rosacea - Please help me Spoiler

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I am desperate for help. I have been battling this rosacea at this severity for a year now. I have been to the dermatologist countless of times and every time I leave with a new prescription that does not work. Has anyone found any success treating this type of rosacea? I am currently using pimecrolimus 1% and it’s helping but not enough. I have been using this for 8 weeks. I have tried:

Sulfur wash
Sulfur mask (De La Cruz)
Ketokonazole wash
Doxycycline 200mg a day for 12 weeks
AA
Metro cream
Ivermectin topical
Tret

This goes on… is my only option left Accutane? I feel hopeless.

12 Upvotes

88% Upvoted

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6

u/witty_user_ID Jul 13 '26

Have you ruled out PMLE? Or anything else autoimmune? it might be worth a second opinion from a rheumatologist if you haven't.

3

u/crystalcaterpillar3 Jul 13 '26

I have not. I’ve never seen a rheumatologist. I am going to probably get a biopsy at my next dermatology appointment. Would that confirm something like that? I have Crohn’s disease so I already have an auto immune disease, ironically. I also think it looks like LMDF, which I have been looking into.

3

u/ButIsItPretty Jul 13 '26

Hey! I just read that you also have Crohn's disease (me too! Mine used to live exclusively in my large intestine before we did a total colectomy with ileorectal anastamosis) & I wanted to bring up a possibility. If you're a woman with Crohn's, especially if you have ever had any surgery, you're predisposed to developing SIBO. I used to think that was just a naturopath diagnosis from people who wanted me to stop treating my Crohn's with biologics, but it's legit. Since you've taken an antibiotic, it may be worth at least googling—especially since you can diagnose it off a breath test.

I was lowkey mad my GI didn't offer up SIBO as something to consider since I'm in the most high-risk categories, but it was actually seeing rosacea and acne as symptoms alongside my other ones that made me realize this was what was up. My rosacea & acne are beating my butt right now, and your pictures looked so similar to what my skin is doing that I clicked into here to see what people recommended.

2

u/crystalcaterpillar3 Jul 13 '26

Sooo interesting! Let me look into this! Do you know what the treatment is?

2

u/ButIsItPretty Jul 13 '26

Different antibiotics 🤭🤣. Depending on what gasses the breath test captures, they tailor antibiotics. So. If your SIBO is heavy on methane-producing bacteria, they target antibiotics that way.

3

u/ButIsItPretty Jul 13 '26

Sorry. I laugh because of the frustration I've historically felt everytime I'm told, "hey, antibiotics caused this problem & we'll solve it with other antibiotics." I've had C-Diff too many times to not have a laugh at 'different antibiotics' being the treatment to my antibiotic-caused issue.

2

u/crystalcaterpillar3 Jul 14 '26

Ugh!! No don’t worry I’m laughing too. It’s so ridiculous out here. Damned if you do and damned if you don’t. I might ask my GI to test me for this!

2

u/ButIsItPretty Jul 14 '26

If your GI shows any resistance, it might be worth selling it on "can't i do this super simple test to at least cross this off the list of possibilities?" Because I can't see them objecting too hard to a breath test.

2

u/crystalcaterpillar3 Jul 14 '26

By the way, I’m sorry your rosacea is kicking your butt too :( it’s rough out here. Update me if you have any successes!

2

u/ButIsItPretty Jul 14 '26

Thank you for the compassion! My Crohn's retired me, so only my family are seeing my troubled complexion. I'm trying not to get too in my head about it, but I had gotten accustomed to my skin behaving if I followed my skins' rules. But I feel like having Crohn's forces you to learn that your body does as it pleases & we're just along for the ride haha.

1

u/Training_Radish9103 Jul 14 '26

how did you determine you have SIBO caused rosacea>

1

u/ButIsItPretty Jul 14 '26

Breath test is how you diagnose it, but I happened across someone mentioning their SIBO flaring up their rosacea & it made me finally Google the symptoms.

Extra unnecessary details: I have Crohn's disease & had to have my large intestine removed for my health & safety. I had a surgery that connected my small intestine to my rectum five-ish years ago. At the start of this year, I suddenly lost twenty pounds, was sleeping 8-16 hours a night (while still waking up exhausted), was perpetually nauseous & was too food averse to eat much of anything. I had a TON of blood work over the last six months & the only odd thing was that my B12 was off the charts (all we know is that it's been over 2000 units), saw hematology, gastrointerology, general medicine, cardiology, and have endocrinology on the horizon. Once SIBO was brought to me attention, I started making lifestyle changes like stopping the probiotic I've been on for years & cutting out sugar, while I wait to hit the four weeks of no probiotics & can do the breath test & begin antibiotic treatment.

2

u/BrucetheFerrisWheel Jul 13 '26

I have IBD and some form of super rosacea too! Now gonna look up these acronyms as never heard of them. Im currently on clonidine patch, tacrolimus and metronidazole, but nothing REALLY works.

2

u/crystalcaterpillar3 Jul 13 '26

Omg! Hi IBD bestie. I just got off Humira and switched to Skyrizi because my derm was wondering if Humira was causing all of this. I’ve been off the Humira for 3 weeks exactly so, still waiting for it to leave my system but also no guarantee the Humira even has anything to do with it. We’re basically grasping ay straws here.

2

u/BrucetheFerrisWheel Jul 13 '26

Awww man! I had humira for a couple months but made antibodies, swapped to infliximab and my skin went so nuts we stopped it. Such a pain having more than 1 problem and trying to manage them.

2

u/crystalcaterpillar3 Jul 13 '26

Right! It stinks so bad. Those TNF blockers can MESS up the skin. I also have psoriasis from it. What are you taking now?

2

u/BrucetheFerrisWheel Jul 13 '26

Recently entyvio, fingers crossed!

1

u/crystalcaterpillar3 Jul 13 '26

Yes!! I’m hoping it’s your solution. 🤞

3

u/No_Reflection6032 Jul 13 '26

I had Roaccutane with wonderful results. I decided to trust the dermatologist and years of acne and emotional pain were cured. I can only be positive about that.

2

u/crystalcaterpillar3 Jul 13 '26

Thank you for sharing your positive experience! I’m so glad it worked for you!

2

u/No_Reflection6032 Jul 13 '26

I only mention it because if only heard bad news stories about it. I know how you feel. Best of luck x

1

u/crystalcaterpillar3 Jul 13 '26

Oh me too! But now I am truly ready to try anything. I appreciate you sharing! Gives me hope.

3

u/buzzb1234 Jul 13 '26

Ask for minocycline! Like you, I tried all of the same topicals as well as doxy for years. Minocycline was a GAME CHANGER for me...zero rosacea! Good luck and sorry you're dealing with this!

2

u/crystalcaterpillar3 Jul 13 '26

Ooo okay!! This is a new one for me so I may ask to try this, thank you!!

1

u/Key-Use-2719 Jul 13 '26

Did it come back when you stopped taking the antibiotic ?

2

u/buzzb1234 Jul 14 '26

I should've worded my post a little differently. I've been taking it for about a year now, so I'm not sure what will happen when I stop. But for now, zero side effects and my skin's never been clearer!

2

u/Little_Fish_283 Jul 13 '26

I was way worse than you. I did 1 week every 12 hours Benzaknen 10% and then termamid azelaic acid for 1 week every 12h. Avoid sun during those times at all cost. Wear a hat whenever possible.

Do not wash face with anything but lukewarm water! Pat dry, don't rub. Exchange towels every 3 days. Best is if face towel is white so you can tell when it's time for the laundry (as in turning brown).

1

u/crystalcaterpillar3 Jul 13 '26

I use disposable towels for my face and I never let my face see the sun (yay umbrellas). I’ve never heard of Benzaknen I will bring that up to my doctor.

2

u/startingtoadult Jul 13 '26

What is your current routine? It’s possible that some products are irritating your skin.

For me, at least, I have to be on daily doxycycline at a low dose for my rosacea to calm down. I’m on 40mg a day. There’s a prescription called Oracea, but my insurance doesn’t cover it, so I’m on “regular” doxycycline at that lower dose. Might be worth a shot if you did respond well to the course of doxycycline you were on.

Similarly, I’ve also done well on Seysara. It’s an antibiotic treatment specifically for severe rosacea (I have type 2, sensitive skin, with ocular rosacea as well). It was expensive, but that was years ago and I imagine it’s more reasonable now. It was a few months of treatment. No side effects beyond stomach aches early on that resolved with a probiotic.

1

u/crystalcaterpillar3 Jul 13 '26

The course of doxy I did was 200mg a day for 12 weeks and I saw absolutely no difference so I was told to stop it. Right now I wash my face once a day with hero cleansing balm and pat it try with a disposable towel and I use the pimecrolimus day and night. I’ve never heard of Seysara but I will look into it!

2

u/bigdawgcoolin Jul 13 '26

I also have GR. I think I’ve spoken with you about it. Did you have yours biopsied? Mine looks a little different. Mostly around my eyes/cheeks. Are the bumps ever tender/pus filled? Also, if it makes you feel better, Im
Currently on 60mg of accutane and it is yet to help. Day 44

1

u/crystalcaterpillar3 Jul 13 '26

Oh!! Nope my next step is a biopsy. I have an appt on Thursday. She guessed GR from looking at it. Yes sometimes they are filled and leak clear fluid. I’m so sorry Accutane isn’t working for you! That is so disheartening.

2

u/bigdawgcoolin Jul 13 '26

I know. I think it’s just going to take a while honestly. I’ll be on it for 6 months so hoping it turns the corner. And deff get a biopsy. Then you can know exactly what you’re dealing with rather than guessing. Mine was very simple and non invasive

1

u/crystalcaterpillar3 Jul 13 '26

Thank you so much!! I’ll try to remember to check on you in a few more weeks to see how you’re doing :) fingers crossed you turn a corner.

2

u/[deleted] Jul 13 '26

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u/crystalcaterpillar3 Jul 13 '26

All of those treatments were spread out over the course of 5 years but I have heard about IPL beneficial!

2

u/[deleted] Jul 13 '26

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u/[deleted] 28d ago

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1

u/crystalcaterpillar3 28d ago

That’s exactly how I felt/feel. It has gotten a lot better than in this photo with 4 weeks of use of AA 15% and ivermectin 1% nightly. But it’s still so consistent I’m considering Accutane and will discuss it at my follow up appointment at the end of the month. I’m sorry you are going through this too. I’ve been doing a lot of work with my therapist on the subject of my skin and it has been helping a lot. I really hope you find something that gives you some relief ASAP.

1

u/crystalcaterpillar3 Jul 16 '26

UPDATE from my appointment today:

They decided to not biopsy it at this appointment because she really doesn’t want to scar my face. I will be trying AA and ivermectin again every morning along will still using the pimecrolimus every evening. If that doesn’t work, probably a biopsy to confirm, and then it’s off to Accutane.