Originally diagnosed as infection at urgent care,...
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.
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.
Trying to get better photos, they show up to small for detail.
Still suspect it was Demodex all along.
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!
Its been a little over 3 months, no bumps really, just still pink.
Can't take much more
I have muscle pain all over...neck, shoulders, back, pelvis, above my heels. Derm did a creatine kinase test, was fine. And seriously whats with this cough I've had since week 1? Now that I am so sore it really hurts to cough, or even sneeze for that matter. We may have to go back down, or stop completely. This pain only started after going up to 40mg. I also got a yeast infection last week...related or coincidence?
back to 20mg
Could not deal with the pain anymore, back down to 20mg. This means it will take longer to finish the course. Still a little stiff when getting up in the morning, but nothing like it was. I think the cough has something to do with this med and the e-cig together. I stopped inhaling and no cough...hmmm... Nicotine withdrawal is a bitch! I totally went and had a sobfest over every little thing thats been bugging me lately that I have been keeping to myself.
Clear and about 30 days left!
Well I have tweaked my dose to get this over faster. Couldn't handle 40mg each day so I have been doing 40mg on MWF and 30mg on all other days. I still have some pink, but no bumps! Even if one tries to come up it is tiny and gone the next day. The derm. says since it stays in your system it will keep working a while after you stop and the pink should go away more. I have plans on doing something about the scars and any pink left after I am off 6mo.-1yr. I hope this is the end of this and I stay clear!
I think its back :(
I am sad to say that after finishing my course in January and being clear all this time, I may be flaring up again. Noticed redness on the nose and some pinpoint pustules, starting to itch. My IBS which has also been under control since February is also flaring up. I did some digging and it seems that SIBO can actually affect not only your bowels, but also your skin!! So if you suffer from both you may want to look into this. I guess it's back to the Derm and GI for me. It was so nice being off all the meds for so long. This sucks!
Time to go back to the dermatologist I think
After finishing the course at the end of January I started to flare a bit last month, but it is getting worse. Left side is worse that right, it always starts out on one or the other it seems.
Trying to avoid a 2nd course or microdose
I went back to the derm and she said we could do a microdose of 10mg/day indefinitely or try Soolantra again with Oracea since we are catching it early this time and we don't have much inflammation. While waiting for insurance and approval I did some looking around and saw great Soolantra results from a woman on youtube and decided to give it another shot. Oracea made me so nauseated that I did not want to try that again, but I did still have an unexpired tube of Soolantra, so I started to use it. In just a few days I noticed a change. I have had no more bumps and the ones that were starting went away. I still have some pink/redness, but no bumps, itching, swelling, sensitivity. I go back in a few days to see her again and hope she thinks this can work long term. I think it was just so bad and inflamed last time the Soolantra never had a chance to get through it, but am hopeful this time around.