Guide

My most recent regimen is taking vitamins, minerals, supplements, and homeopathy treatment prescribed from an acupuncturist in Rome, GA, Howard Elrod. I also use Azelaic Acid Gel, 15%, about three to six times a month. Occasionally I  also use the ZZ cream. My rosacea is controlled, but when I go off my Rosacea Diet, it flares up. 

Updates

In February 2022 we sectioned off about three quarters of our website to members only and only allow guests to view a portion of our website. At the end of March we switched to a subscription based website for members only and allow 95%e of our website to members only who subscribe at least $2/month donation ($1/month for three or more months). Guests were allowed to post for free in our guest forum if until the end of June 2022. Now guest cannot post period unless they subscribe. Watch Season 2 Episode 3 that explains all this. 

Since November 2023, due to a generous donation from one of our members, we have opened up the member forum to guests to view and only allow subscriber members to post. 

My current regimen is using Azelaic Acid generic topical regularly, avoid sugar/carbohydate as much as possible, use the ZZ cream on a regular basis (once a week), stopped drinking alcohol, take loads of vitamins/minerals, drink lots of sugar free seltzer, eating high protein/fat, and continue taking carvedilol. 

Why not donate $2 and gain access to our member forum and create your own rosacea blog?

We have made the MEMBER FORUM totally private now. If one registers with Sign in with Apple, hides behind a cryptic, mysterious DISPLAY NAME and hides their email address using Apple's Hide My Email service when registering, this makes the RRDi member forum the most private rosacea forum on the internet. 

Guests can only view a portion of our website. 

Registered Active members have full access to the Member Forum. 

I have been cranking out the videos, particularly less than one minute trailers and you can view them at YouTube or TikTok or Instagram. What I learned is that the forum style platform which has been used for about twenty years is not the preferred style platform anymore, even though some major companies still use it for their websites. In the rosacea world, rosaceans prefer the social media style platforms and use mobile devices (phones), to browse the internet and post. On a mobile phone our Invision Community style platform isn't familiar or comfortable with these new rosaceans because it takes a lot more thinking to navigate our forum than the simple style Facebook, Reddit, Instagram and all the other social style platforms use to integrate with mobile devices. The Invision Community attempted to use beta versions of a mobile app but failed to complete the project and it is in limbo. So I have made a number of videos trying to increase registrations which seems to be working some, but still haven't figured out how to get these new rosaceans to engage or post on our website. I haven't given up and will continue to work on this. Just wanted to update you on why I have been making videos for the RRDi. 

I have been adding more videos to YouTube if you are interested as well as TikTok (click here for more TikTok videos). 

Thought I would update you on what I have been doing since my last blog post on February 23. 

(1) I have been adding a huge number of FAQs pointing to the most viewed posts/pages on our website and listed most of them in this post as a reference to those who might want to know what rosaceans are interested in viewing on our website. Discovered that the most reviewed rosacea regimen on our website is mine all about Soolantra which has be viewed over 19.7K views. As you have discovered I now post my current regimen in this blog. 

(2) Released this video on February 23, 2021

(3) After browsing the Invision Community administrators forum (members are usually IC forum admins) found this thread about a subject dear to my heart, The future of forums... let's talk!, and learned a great deal on what I can do as an admin here at the RRDi website to encourage not only registrations but also try to get the members to engage with posts. The post was started in 2018 and has continued and I added my thoughts and questions to the group which has really helped me understand that giving all the FREE rosacea data on our website to guests is a big mistake and that we need to limit what guests can view to encourage them to join the RRDi to view the more pertinent information on rosacea that they are searching for. So I posted this thread at the IC forum to ask about my thoughts on the subject. 

So on Feb 26 I posted this post on our website, RRDi Active vs Inactive Members.  It took me a number of days to figure out how to make the different member groups do what I want each group to be able to view on our website. I changed the title of this post to reflect a better understanding of our financial situation since we received a donation in January that will keep us going for at least a year. 

On March 2 the home page of the web site was simplified to reduce the clutter for new guests to the website and I placed a four minute video introduction.

So the short version of all this is that guests can view approximately about a quarter of our website and members have full access to member area of our site. They have to remain active to continue to have access to the site which requires one post a month. I am hoping this increases registrations and engagement. 

At the previously mentioned thread at IC, The future of forums... let's talk!, one of the admins critiqued my video and said it was too long, that these new guests have a very short attention span, so I moved the above video to the About the RRDi page at the top of the page, and put a one minute video introduction on our home page. 

To show you the difference in stats on registrations. In 2020 we had in the last three months, October 5 registrations, November 5 registrations, December 8 registrations (none of these 18 registrations posted or engaged on our website). 

In January 2021 we had 10 registrations and no engagement. 

From February 1 till Feb 26 we had 11 registrations. On February 26 we restricted access to our website to guests and created a group called inactive members that limits inactive members to what guest can view. The only difference is that inactive members can POST in the areas that guests can view (guests are not allowed to post in these areas but are allowed to post in the feedback forum). 

We have had five registrations since Feb 27 and one registered but didn't validate the email so that would have been six registrations. So we have added six new active members in less than a week and one inactive member has posted so that moved that member from the inactive member group to the active member group. This member hadn't posted in over a year! So, I think this is working but will have to evaluate this for several months to make sure. Hoping this increases registrations and engagement with our members who hopefully will start posting. 

Thought I would post photos today for a reference. 

New post on the RRDi MAC

New Video on Volunteering for the RRDi Social Media Accounts

Looking back I started taking the 20 mg of doxycycline twice a day since August 25, 2020 and stopped it on Feb 8 which was a total of 167 days. I will say that taking the doxycycline does indeed clear my rosacea. However, the side effect of my upset stomach and burping is difficult to deal with. I have now been off the doxycycline for ten days. I have been taking the Butyric Acid on average two a day for ten days. It is a little better but I am still recovering with my upset stomach and burping. I have noticed that my skin is developing a few red spots. I will update again in twenty days. 

Just an update on my rosacea regimen. I have been having digestion issues (lots of burping and stomach issues), so I have decided to stop the 20 mg of doxycycline twice a day for a while starting Feb 8 to see if this clears up my issues. I ordered some Butyric Acid since I posted about this based upon the clinical paper mentioned in the post. Amazon should deliver it tomorrow and I got 90 capsules of this particular item. I will post my progress here but it usually takes a month to see if this clears up my burping and stomach issues. If my rosacea comes back I can always take the low dose doxycycline since I have plenty in my medicine cabinet.  Otherwise my video on my current regimen is just like I say in the video. 

Volunteering is at the core of the RRDi non profit organization. Watch this short video about why you should volunteer to post at the RRDi forum or at the very least donate one dollar to keep the RRDi going. 

Update on My Rosacea Regimen Treatments

My current regimen includes Generic Doxycline 20 mg tab twice a day, Generic Azelaic Acid Gel about three times a week on my face/scalp on stubborn spots (more like folliculitis than SD on my scalp), the ZZ cream about three times a week (alternate the ZZ cream and the Azelaic Acid Gel on my face and forehead), and sometimes I may skip some days. Right now my face is fairly clear and the folliculitis on the scalp is much improved. I am now using a tablespoon of Tea Tree Oil in ten ounces of baby shampoo for my hair and also use on my face and neck when showering. This regimen seems to improve my rosacea/SD as well. Of course, I try to follow my Rosacea Diet and have been fairly a good boy on it for the past month. Below are photos as of December 23, 2020: 

Just made this video about Rx treatments for rosacea. 

Went to my dermatologist appointment yesterday and Dr. Harper feels that her regimen is improving my rosacea/SD/folliculitis and I concur. She says to keep taking the 20 mg tab oral doxycycline twice a day and gave me more generic 15% azelaic acid gel prescriptions and scheduled an appointment for my next visit February 1, 2021. The Finacea she offered to refill more prescriptions but my insurance co-payment is $57 and even though I think the 15% Finacea Foam is probably better than the generic 15% gel, I don't think it is that much better so I opted NO on the Finacea, which is for those who have lots of money to burn, which I don't. Generic gel works good enough. That's my update. I will post new photos in a month. And did you see the recent RSS feed post that azelaic acid promotes hair growth!

Note on January 25, 2021: 
I cancelled my appointment with Dr. Harper on February 1, 2021 since my current regimen is fine and no need to see her. Got all my Rx's renewed. 

Update on my progress with azelaic acid gel/Finacea with photos. Seems to be working. The itching in the scalp has stopped. There is some 'keratin' that I am able to scratch off in my scalp but it definitely has improved. I will see Dr. Harper on September 30. 

Here is my update in photos after twenty days using azelaic acid. I used up one tube of the generic gel and started using the Finacea 15% Foam about a week ago. Still taking the low dose doxycycline tabs (20 mg) twice a day. 

It has been five days using the Azelaic Gel on the back of my scalp and on my face. It has reduced the itch and has improved the folliculitis on the scalp, but just a little improvement on the red spots of my face. I still have them. I am also taking the 20 mg tabs of doxycycline twice a day. I have just about used up the Free & Clear sample shampoo tubes (on the last one). 

Update August 24

Received the generic Azeliac Acid 15% today Fedex and applied it to the back of my scalp where I have bumps, keratin, and incredible itches. I also applied it all over my face bumps and red spots. Here I am today after my first application of Azeliac Acid. 

Went to my new dermatologist, Julie Harper, MD, Dermatology and Skin Care Center of Birmingham for the first visit. Dr. Harper is last year's past president of the AARS. The screenshot below shows she is still president today! Dr. Harper insists she is the past president. 

So I gave her a list of what I have been using to treat whatever is on the back of my scalp here:

Over the counter 
Equate Anti-Dandruff Therapeutic Shampoo (T Gel)
Baby Shampoo
Nizoral (ketoconazole 1%)
Braunfels Labs Sulfur Butter Cream 'n Ointment
Zhongzhou Cream 
Sesderma Sebovalis Facial Gel (key ingredients 8% lithium gluconate -  0.5% Piroctone olamine - 4.5% glycolic acid - Calendula extract)
Yesto tea tree scalp treatment
Clotrimazole cream
Aqua Vive Shampoo

Prescription 
Doxycycline 100 mg twice a day for twenty days 
Fluocinolone Acetonide Topical Oil

She examined my face and asked some questions about different spots that I had scratched, examined the back of my scalp and said I had folliculitis, which is what my primary nurse practitioner diagnosed as well. I asked her about that and she said that I probably have SD, rosacea and folliculitis and that they may all be related to each other. She advised me to stop using everything and prescribed AZELAIC ACID 15% GEL 50GM and Finacea 15% (Azelaic Acid) for my face, oral doxycycline 20 mg twice a day for my face and scalp, a sample of amzeeq (minocycline) topical foam 4% for my scalp, samples of Free and Clear Shampoo for my hair, and samples of LaRoche-Posay Anthelios Clear Skin Dry Touch Sunscreen which she told me to use when in the sun. I am scheduled for a followup visit on September 30. Saw Dr. Harper for fifteen minutes and asked her about listing her name on the RRDi MAC. She said she would look into it. I will follow her Rx treatments and recommendations and see what happens. 

Update August 20. 

My insurance won't cover the Finacea and requires I pay for this out of pocket. One Rx is for AZELAIC ACID 15% GEL 50GM which costs over $300 and another Rx for FINACEA 15% AER FOAM which costs over $400. Needless to say, I cancelled those two Rx(s). The generic doxycycline was approved and is being shipped to me through the mail. I called Dr. Harper's office and explained what happened (left a voice mail, of course). My insurance company says if the doctor fills out a certain form and goes through some hoops they can cover some of the amount of the two I just cancelled. I need to know what my out of pocket costs are for either one of them before I approve either one. I wondered why we don't hear more about Azeliac Acid and Finacea and now I know why. Who can afford it?  I know there are ways to approach the pharmaceutical company and get discounts but when I tried to approach Galderma with a discount for Soolantra I was told my insurance (Medicare) doesn't allow me to participate in this program. Going through all the hoops to get a discount is not for the faint of heart and they make this very difficult to get these brand name prescriptions available to those who cannot afford it. So I went through the hoops to get the savings card discount for Finacea and after filling out the form was told I don't qualify since I am on Medicare. Figure that one? 

Update August 22

After going through some hoops I got the generic version of the azeliac gel for $47 initially through GoodRx but ended up using Geesons Pharmacy since my dermatologist sent the Rx to Geesons. Today my insurance company approved giving both the gel and foam after my dermatologist went through some hoops to explain why I needed azeliac acid rather than metronidazole and the Finacea Foam costs me $57. Both are being mailed to me and should arrive Monday. Turns out my insurance company who also provides a mail order pharmacy service (Humana) offers the generic gel for $39. So if I had just been patient I could have saved $8. Opps. I just noticed there is an over the counter The Ordinary Azelaic Acid Suspension in the RRDi affiliate store or Paula's Choice 10% Azelaic Acid Booster or Lyfetrition Azelaic Acid Serum or Strata Dermatalogics Melazepam Cream (all these treatments have the key ingredient azeliac acid). Got the 20 mg tabs of doxycycline today!  Took the first one!

    
 (0 reviews) 

I just had to post this since I just came up with it. 

The rosaceans come and go, talking about their rosacea woes, some of these reports glow, while others are lows, still others crow. 

Just wanted to update what I have been using for about three weeks. I purchased Sesderma Sebovalis Facial Gel (key ingredients 8% lithium gluconate -  0.5% Piroctone olamine - 4.5% glycolic acid - Calendula extract) from the company website since it is not available at Amazon. I learned about it from Yatzil at RF [post no 1] and have heard about Piroctone Olamine which is the ingredient in this gel that I think may improve SD. I have been having what I think is SD on the back of my scalp near my neck going up the scalp to near the top of my head. I have tried over the last eight to ten months, Sulfur Butter, Equate Coal Tar Shampoo, Yesto Tea Tree Scalp Treatment, Nizoral none of which worked. I tried borax and epsom salt baths. Then I went to a nurse practitioner who initially examined me and took a sample of my scalp and sent it to the lab diagnosing me with folliculitis and handing me a prescription for doxycycline 100 mg twice a day for ten days. After a few days she phoned me and said I had Staphylococcus. After the ten days I noticed that my scalp issue was a lot 'dryer' but still had it. She gave me a second Rx for Doxycycline 100 mg twice a day for another ten days. Took that and basically still had the issue but it was dryer. Went back to the nurse practitioner and told her I think it is a fungus so she prescribed Fluocinolone Acetonide Topical Oil which I tried for a couple of weeks however, it did stop the itch, but didn't do anything to relieve the fungal issue. At the same time I received Tom Busby's AquaVive which I have been using for a month as well. What I have noticed is that whatever the issue is, my guess it is a fungus, is beginning to dry up whatever it is but it still lingers. I have stopped the Fluocinolone and am continuing the borax/epsom salt baths and AquaVive. I just received my second tube of Sesderma Sebovalis Facial Gel. I also still use the ZZ cream on facial red spots and try to follow my Rosacea Diet by reducing sugar/carbohydrate as much as possible but I confess, I cheat on occasion. My scalp issue is still present and it is dryer but I still have spots that itch like crazy and won't go away. Once in a while I put the Sulfur Butter or dab a bit of the Fluocinolone on an itchy spot when it drives me crazy. The Sesderma Sebovalis isn't working either. I recently tried a tube of clotrimazole cream for a few days and it didn't do anything. I am seeing a dermatologist in Birmingham on August 19 about this. 

Got an appointment with Dr. Julie Harper, in Birmingham in August. She happens to be the president of the AARS. Looking forward to seeing her and her insight into my back of the scalp issue. My rosacea has flared up a bit so I am using the ZZ cream on my face and forehead. I just tried some horse paste on the back of my scalp to see if ivermectin might eradicate my issue back there. I am still using Tom Busby's shampoo. I am not too impressed with the Sebovalis Facial Gel. It didn't address the back of my scalp issue. I still have it, and have backed off using the Sebovalis. 

On 4/14/2020 at 10:30 PM, RedVelvet said:

Do we have an instagram account for RRDi? I'm pretty useless with Facebook but find Instagram much easier to navigate, and I'd be happy to set one up if we don't have one yet. It would refer people to RRDi, and you are so right about Reddit. I tried answering a question for someone on Reddit who was asking for the name of a "chinese sulfur cream for rosacea" and when I named ZZ in my post, it was taken down because they said I wasn't able to discuss a product that wasn't FDA approved. ???  But Reddit is just full of pharma advertisements!

No, the RRDi doesn't have an Instagram account. I will send you a private email but if you are willing to volunteer for this that would be much appreciated. RedVelvet, why don't you create your own blog and monitor it?

Could someone explain to me why rosaceans prefer donating to the the NRS, the AARS, the ARSC, or the AAD instead of the RRDi?  Why do they think it is ok for Sam Huff's two private corporations to receive about 60% of all the National Rosacea Society donations received over a twenty year period which amounts to over $9.8 million dollars (see spreadsheet) and they CONTINUE to donate to the NRS. Why is it that with over 1300 members in the RRDi no one posts?  No one really cares if the RRDi dissolves? Really? It is so sad. 

I have given a lot of what I do for rosacea sufferers for FREE to anyone who wants a copy of either of my two books, Rosacea 101 or the Rosacea Diet. All you do is request a copy when you join the RRDi. You at least have to join the RRDi before I give you a free copy. Is that too much to ask? Join the RRDi. All that is required is you donate for a subscription. Is that too much to ask?

You may want to also read my review of Soolantra or my  ZZ cream review. 

In the meantime, why not read all of my recent activity in behalf of the RRDi: