Musings of a Person With an Autoimmune Disease: Anyone Else Have ROSACEA?

I have lived a long time w/ T1 diabetes to find out that the autoimmune issues it brings are not confined to my pancreas:) Seems my reddened, inflammed face may also be one of them. Did not notice it until my 20’s and worsened in my late 30’s and 40’s. Sometimes my face feels like it is on fire…I hear comments like…“oh, you have a sunburn” or “love your rosy cheeks!”. Rosacea is a chronic inflammation of the epidermis…likely leaking capillaries of the face related in some way to my other manifestations of autoimmunity. As a look back, I see it in Aunts/Uncles, sisters…and my beloved grandparents…all from Northeastern Europe and likely carrying some form of the genes that resulted in my T1 diabetes, their throid issues and my father’s painful battle w/ Alzheimers. We learn so much more about the origins of autoimmune diseases every day and how they relate to one another…I suspect, in the future that is what we will be treating…not T1 specifically.

So, my question is…how many of you have rosacea and what works best to treat it for you? I have found that nothing works really well, but Finacea//azeliac acid seems to be the best right now…Metrogel worked for a while. I invite you to share your experiences…even horror stories of reddened faces in a fit of college drinking (yes, some have pictures to prove it happened to me!).

I struggled with rosacea for more than 10 years until I found a dermatologist who put me on Minocycline. I had to take Minocycline for about a year in decreasing dosage. Now my rosacea is gone. It took not long to find out that Minocycline was the silver bullet for me. After taking Minocycline for a day the skin cleared up. Not taking Minocycline brought the redness back in a day too. Like an on/off switch.

Sounds great…I should talk to my doc about Minocycline. I have avoided tetracyclines due to the risks to kidneys, etc. but, I am getting really tired of the worstened condition in my 40’s…really red and all over my face. Some concerns that I may have it in my eyes now. I will have to dig up the article…but, just recently they determined the real problem is w /2 genes that effect capillary dynamics…maybe linked to leaky gut risk for invading bacterium/proteins that trigger gut/immune reaction in T1. I suspect “bugs” take up residence due to the new conditions in the epidermis…and that is maybe how your Minocycline helped clear up your rosacea. SO, YOU ARE USING NOTHING AT THIS POINT? I have also been told that laser treatments are very effective…cauterizing the vessels in question. Glad to hear something has worked for someone else! Take care, Helmut.

Here is a reference to the studies identifying the proteins and enzymes which inflame the skin of rosacea sufferers…seems they also believe some of the antibiotics are effective in blocking the formation of proteins supporting your experience Helmut:) For those interested, just google “genetics of rosacea discovered” and will get a list of internet accessible references to the research done in CA.

Great link, thanks… I don’t have Rosacea but my husband does. He’s had it since he was about 30; about the last ten years. I think he has giiven up on it at this point. He was on metrogel too which just worked briefly. He also suffers from gout so I wonder if there would be a connection with that. It sure would be nice if there was a simple fix.

I’m going to the doctor tomorrow to find out what is wrong with my face. Does your face feel like a sunburn? Mine gets worse when I exercise or get hot. It doesn’t seem to be going away. I’m not sure if I’m allergic to my make-up, but I haven’t been wearing it for 3 days now and still feel a slight burning on my nose. I’ll let you know what the doc says.

You know…that was my experience on Metrogel. I even went off of it for 2 years and resumed…never got that clear skin back again. I now have flushes…whole face gets red and hot…looks like I am running a fever. All I can say is that I am asking my doc to try different things. Maybe I need to give the low dose antibiotics a try (Doxycycline or Minocycline recommended by Helmut. Good luck to you and hope he gets some relief:)

Yes, getting heated or blood vessels dilating for any reason (exercise, hot showers, sauna, hot tub, drinking, hot foods, etc.) are triggers for the flushing and burning. It usually comes and goes but, you can get a chronic episode that is miserable…that is when you usually make the doc appt! People w/ rosacea tend to be sensitive to makeup ingredients…I have now switched to all natural mineral makeup I have to order online…love it and it provides SPF naturally:) Mine is by J Lynne but also like Everyday Minerals…important that it not contain bismuth (highly irritating). I went through a period this past Christmas that I could not put anything on my face…it looked like it was burned and peeling! Even my upper eyelid! I headed to the doc and got back on a healthy skin plan and it seems better…but, not in any way gone…skin is clear but, flushes about 5x/week for a few hours. I usually have more problems in the summer but, really cold/windburn conditions also trigger it. Have also questioned if my vasodilating blood pressure meds contribute as well. The Rosacea Society is a good resource for information…here is a link to a good list of triggers and treatments. Notice the picture on the Rosacea Society web page…mine is more like pink all over vs reddened spots…the picture they have seems more like moderate rosacea than mild. It can get real bad and topical/oral medications and sunblock are the routine treatments. Laser treatments seem to provide permanent results but, are expensive.

Good luck Kim w/ your visit…let us know what they tell you.

I noticed redness on my forehead and skin breaking out in the late 80s. I went to 2 dermatologists who could not help me. I gave up and went without treatment for 10 years. Then my skin got so bad that I had to try again. This time I lucked out and found a dermatologist who helped me. I took Minocycline for about a year around 2001 and haven’t used anything since. No cream, no medication, nothing. When I started taking Minocycline it was as if a sunburn went away and my skin turned pale like I had never seen it before. Then my broken out skin started to heal. I could not believe that I had endured the torture of this skin condition for 10 years and it could be fixed in a day. Not all dermatologists are created equal.

So glad you found the dermatologist who helped you:) I went to a really good derm but, she spent only minutes w/ me…said “yes, you have it and will need to be on Metrogel/sunscreen the rest of your life.” I said “ok”…and filled the script and began using it again (had been off it for about 4 years due to lack of medication coverage)…seemed a little better…not great so now on Finacea…burned/peeled…got better and now same thing, getting flushed and some pumps. So last night went back to Metrocream (higher % than Metrogel) and clear as a baby this a.m.! It is crazy! I am going to call the MD and see if I can try antibiotics for a trial and see if it clears it. Thanks for sharing your experience.

What is Minocycline:

Minocycline is a tetracycline antibiotic. It fights bacteria in the body. It works by slowing the growth of certain bacteria and allowing the body’s immune system to kill them.
Minocycline is used to treat many types of different bacterial infections, such as urinary tract infections, severe acne, gonorrhea, tick fever, chlamydia, and others.
Minocycline may also be used for other purposes not listed in this medication guide.

Important Information about Minocycline:

Do not use this medication if you are pregnant. It could cause harm to the unborn baby, including permanent discoloration of the teeth later in life. Minocycline can make birth control pills less effective. Use a second method of birth control while you are taking minoocycline to keep from getting pregnant. Minocycline passes into breast milk and may affect bone and tooth development in a nursing baby. Do not take this medication without telling your doctor if you are breast-feeding a baby. Do not give this medication to a child younger than 8 years old. Minocycline can cause permanent yellowing or graying of the teeth, and it can affect a child’s growth. Avoid exposure to sunlight or artificial UV rays (sunlamps or tanning beds). Minocycline can make your skin more sensitive to sunlight and sunburn may result. Use a sunscreen (minimum SPF 15) and wear protective clothing if you must be out in the sun.
Do not take iron supplements, multivitamins, calcium supplements, antacids, or laxatives within 2 hours before or after taking minocycline. These products can make minocycline less effective. Throw away any unused minocycline when it expires or when it is no longer needed. Do not take any minocycline after the expiration date printed on the label. Using expired minocycline can cause damage to your kidneys.

Years later, they came out w/ Soolantra (ivermectine) cream 1% that has worked amazingly well. I only occasionally flush and it has minimized the appearance and symptoms of my rosacea considerably. In the meantime, I used oral doxycycline which helped my ocular rosacea as well but, ended up causing gastritis. If you suffer from rosacea (a type of inflammatory skin disease) - see a dermatologist and ask about topical ivermectine - it works!