Oracea Long Term

[John W.]

Hi all. I'm a long time reader of this forum, but a first-time poster. I apologize if this should have been placed in an existing thread, but the existing ones on this topic seemed a little out-of-date. I have a couple of questions about the long term use of Oracea.

I've had Rosacea for approximately 12 years. For the first 10 years it was just a red face, which was annoying, but something I could live with. About 2 years ago I developed the dreaded P&Ps, and this not something I want to live with. I've used Metrogel for a while, but I can't really tell if it does anything. Sometimes I think it's working; other times I'm convinced that it does nothing. I like my derm a lot. She seems very knowledgeable about Rosacea, she was number one in her class in medical school, and is an assistant professor of Dermatology at Rush University in Chicago. About a year and a half ago, she gave me a prescription for Soldyn, which was a miracle drug for me. My skin looked great when I would take it, and I could get away with taking it only 3 days a week (M-W-F). However, I've researched this drug a lot, and there is a greater risk of hepatotoxicity with Minocycline than with other tetracyclines, and I really don't like the idea of messing around with this long term. Whenever I quit, though, the P&Ps would gradually come back again.

I discussed this with my derm last month, and she game me Finacea and Oracea to try. The Finacea seemed to be working at first, but then became really irritating. I haven't started the Oracea yet, but I'm starting to think I don't have much choice because my eyes are becoming bloodshot and itchy, so it looks like ocular rosacea has arrived. Anyway, she assured me that Oracea is safe to use long term and that there is a lot of information about it from the studies that have been done with dental doses of doxycycline. She said that I don't need to get blood tests. Nevertheless, the prescribing information from Walgreens recommends blood tests to check organ function, and the prescribing information for Periostat has the same warning. I find this unnerving, and I really don't want to be on any systemic medication long term. I'm 42 years old. Am I supposed to take this for 40 more years? On the other hand, a few minutes looking at pictures of advanced Rosacea with rhinophyma is just as unnerving, and I don't want to risk that either.

I was about to start the Oracea this morning, when I started reading this forum:
http://www.cafepharma.com/boards/sho...d.php?t=194193
Now I'm reluctant again. One of my biggest fears is that if I try it and then stop, things will be worse than they were before. This wasn't true with Solodyn--when I quit taking it, I just slowly reverted back to where things were before, but it's a complaint I've heard several times about Oracea. I'd like to believe that I can try it out without necessarily committing myself for the long haul.

Yes, there are questions here somewhere. For those of you who have been taking Oracea, how long have you gone now? Have you tried stopping it or cutting back the dose with any success? And are you prepared to take this for the rest of your life if need be? Or, is that the wrong way to look at it, and should I just think of it as taking it for now and hoping that something better will come along in the next decade?

I apologize for the length of this post. That was 12 years worth of stuff in one post. I'll be more brief in the future.

[Melissa W]

Hi and welcome to the RF John

I have been on Oracea for over 2 years now and fortunately I have suffered no ill effects and my face remains pretty clear on this med. I also took Solodyn (45 mg) in the past (about 3 years ago) and it cleared me right up but after about 8 months I got nervous just like you about being on this med longterm and that is when I decided to switch to Oracea. I did taper off the Solodyn and then took no medication for a few months because I was curious if I still needed something. Turns out I did. My face started getting lots of papules. That's when I started Oracea and it took 4 months for it to clear me so it was slower to work for me than Solodyn but it did the job and fingers crossed will continue to do so.

I am OK with taking this as long as I have to provided my health is not affected. I take blood tests about once/year to make sure everything is OK. Since Oracea is submicrobial I feel good about my chances on this drug for longterm use.
I am unable to take any topical meds for my rosacea so Oracea is it for me for now.
Hopefully, the future will hold other successful treatments for us but for now I am grateful we have the ones we do.

Best of luck.

Melissa

ps no need to apologise about the length of your post(s)...make them as long as you want to ;)

[John W.]

Thanks, Melissa. It's good to hear from someone who has been on this for a long time without problems. I guess one thing that I have to keep in mind when I read the horror stories is that someone who is having problems with Oracea is much more likely to get online and post about it than someone who is having no issues. When I was on Solodyn, that was the only period in the past several years that I didn't spend all of my time obsessing about Rosacea and reading the forums.

It's still sitting in my medicine chest for now. I've found that by liberally moisturizing with CeraVe, I'm able to better tolerate the Finacea, and it is helping quite a bit. I'll probably give that a few more weeks and try fish oil for my eyes to see if I can put off the Oracea a little longer, but I suspect that I will be on it eventually.

I still hold out hope for a cure, but the cynical side of me realizes that all of the money to be made is on developing things that we have to use for the rest of our lives.

[Brady Barrows]

John,

While the prevailing view is that low dose doxycycline is used for anti-inflammatory treatment, one report said that "resistance to doxycycline can occur in a few days, with resistant bacteria in abundance after just seven days of treatment with 100 mg doxycyline daily."

Since Galderma funds so much research on Metrogel, no doubt in the years ahead there will be plenty of research coming out about Oracea since Galderma is promoting it as well. We will be hearing more reports on what the long term effects are without a doubt since many rosaceans have switched from tetracycline and other antibiotics to doxycycline.

[Brady Barrows]

Originally Posted by John W.

On the other hand, a few minutes looking at pictures of advanced Rosacea with rhinophyma is just as unnerving, and I don't want to risk that either.

John,

While the subtypes of rosacea appear to be progressive like they are in stages, actually the 'expert committee' who set this up said emphatically that they are not. What this means is that a person could get Subtype 4, ocular rosacea, first. Or another person can simply stay in subtype 1, ETR, and not progress to another subtype. In the past literature rosacea was always described in 'stages' which implied it was progressive. While rosacea CAN BE PROGRESSIVE it doesn't always progress. Just because you have rosacea it doesn't necessarily mean you will progress to Subtype 3, Rhinoplyma. Just about all the literature and information says that rhinoplyma develops because of untreated rosacea, but this subtype is actually rare and the chances are you won't develop it. The bottom line is that rosacea is not necessarily progressive. And the most important thing is that it can be controlled.

Taking doxycycline for a short term will no doubt help you. What the long term effects are you will obviously find out if you decide to take that course.

[John W.]

Thanks for the information, Brady. I've read the same thing about Rhinophyma and untreated Rosacea, but it's hard to find an answer to what kind of treatment is best to prevent it from occurring, i.e., systemic treatment versus Metrogel or Finacea, etc. Some people have argued that Rosacea-Ltd. is good for this, but my skin can't handle sulfur.

I would like to try Oracea in the short term, but some have reported that their problem came back worse than before when they went off it, and that's what makes me nervous about trying it. Of course, this is all anecdotal, and I didn't have that problem coming off of Solydyn, so maybe there's not much to worry about.

As far as the long term effects, I'm not really concerned about antibiotic resistance because the dose is submicrobial. My fear is more with regard to possible liver damage, etc. They say that safety has been established up to 9 months, but there's a big difference between 9 months and a decade or two.

[Brady Barrows]

John,

I know what you mean about the risks and side effects.

You might want to consider oral Metronidazole. Check out SiliconMessiah's initial thread and the second thread which is interesting. Apparently one can stop the metronidazole after it clears ups. Might be an option over the Oracea.

But then again there are risks and side effects to consider using oral metronidazole.

[Melissa W]

Originally Posted by Brady Barrows

John,

While the prevailing view is that low dose doxycycline is used for anti-inflammatory treatment, one report said that "resistance to doxycycline can occur in a few days, with resistant bacteria in abundance after just seven days of treatment with 100 mg doxycyline daily."

Since Galderma funds so much research on Metrogel, no doubt in the years ahead there will be plenty of research coming out about Oracea since Galderma is promoting it as well. We will be hearing more reports on what the long term effects are without a doubt since many rosaceans have switched from tetracycline and other antibiotics to doxycycline.

Brady,

I think we discussed this before.
http://www.rosaceagroup.org/The_Rosa...ine#post228256

There have been no reported cases of resistance to doxy after taking Oracea. Oracea is submicrobial. The article you keep referring to is discussing 100 mg of doxy. Not 40 mg. There is a big difference. That is not to say that all is known about this topic. As you write, we should be finding out more info in the coming years as more people continue taking it for longer periods of time.
I just want to point out what you posted can be misleading as what we are discussing is Oracea. Not 100 mg doxy.

Melissa

[Brady Barrows]

Originally Posted by Melissa W

Brady,

I think we discussed this before.
http://www.rosaceagroup.org/The_Rosa...ine#post228256

There have been no reported cases of resistance to doxy after taking Oracea. Oracea is submicrobial. The article you keep referring to is discussing 100 mg of doxy. Not 40 mg. There is a big difference. That is not to say that all is known about this topic. As you write, we should be finding out more info in the coming years as more people continue taking it for longer periods of time.
I just want to point out what you posted can be misleading as what we are discussing is Oracea. Not 100 mg doxy.

Melissa

Quite right Melissa. But if this newbie didn't know that Oracea has a generic equivalent (doxycycline) and that there is indeed a report that shows that 100 mg daily for seven days does indeed show a possible antibiotic resistance due to not knowing about this one report and decided to take Oracea in low dose based on the theory, as you pointed out in the thread mentioned above, that one shouldn't develop antibiotic resistance because of taking the brand name Oracea in low doses and ten years later finds out otherwise, at least I pointed this out to him. I clearly pointed out it was Doxycycline at 100 mg daily for seven days. Doxycyline is cheaper than Oracea too but he would find that out when he bought it. 30 capsules of 50 mg of doxycycline costs $30. 30 capsules of 40 mg of Oracea costs $327. Of course there is Canada and other ways to get around the high price of Oracea. And I have to agree with you we will find out what happens to all these rosaceans who are taking Oracea long term and no doubt Galderma is funding many research studies following these patients long term and they will be released eventually. I wonder if there are any double blind, placebo controlled studies comparing doxycycline with Oracea? Do you know of any?

[Brady Barrows]

Melissa,

Look what I found by googling 'what is the difference between doxycycline and oracea?'

Pascoe's Report on Doxycycline / Oracea