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Thread: My story and a question about Rosacea and long-term Doxycycline use

  1. #1
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    Default My story and a question about Rosacea and long-term Doxycycline use

    Hello! Ive been lurking around here for a while now but after visiting multiple unhelpful dermatologists I think its time I appealed to the collective knowledge of this forum. First my story: When I was living in Japan I used a topical steroid called rinderon vg .12% (i think it contains betamethasone valerate and gentamicin sulfate) on my face for around a year. For some reason I didn't research the medicine at all (so dumb). I just knew it made my skin better and then that I needed it to make my skin normal and then that even with the medicine my face had started to be red all the time. I stopped cold turkey and my face went crazy. I then went to a dermatologist who prescribed protopic to help the topical steroid withdrawal. I used the protopic for about a month. It helped a bit at first but I realized that every time I didn't apply it my face got worse (exactly the same as the topical steroid). So I stopped that as well.

    It has been over a year since I stopped the protopic. My face has not returned to normal. I have had a few week long spells of regular skin in the last year but what I thought was steroid induced rosacea will not go away. I first had flushing and then started getting papules and they have just gotten worse and worse. My neck has also started flushing recently. I was hoping that this was just steroid withdrawal and that it would eventually get better but at this point, I have resigned myself to the fact that the perpetual use of the topical steroid on my face coupled with my already sensitive skin has resulted in rosacea.

    I was put on Doxycycline (100mgs morning and night) three months ago by a general practitioner. I finally went to a dermatologist a month later who lowered the dose to 100mgs a day. When I take this dose of Doxy everyday the papules completely go away and flushing almost completely goes away. None of the regular rosacea triggers make me flare. I have been on this dose for about 3 months now and I haven't had any adverse side effects. If I stop taking the Doxy, however, my face immediately flares really badly.

    I have been to two derms so far now that have told me that doxy can be taken forever. This doesn't seem right to me. There must be some side effects from taking an antibiotic for years. On the other hand, I don't know how to find an alternative. How do I find my triggers if I have none while on doxy? The quick flares after stopping doxy makes me think that my face become accustomed/addicted to the doxy. Can that even happen?! Does anyone have a similar experience with doxycycline? I don't trust what these dermatologists told me and I am uncomfortable with taking an antibiotic "forever." Any advice on how to wean myself off of it would be greatly appreciated. On a somewhat unrelated note, does anyone know of any good derms in the Nashville area? Thanks

  2. #2
    Senior Member Brady Barrows's Avatar
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    I remember my dermatologist told me that I would have to take tetracycline for the rest of my life. I didn't think so then, nor do I think so now.

    Might want to read this post.
    Brady Barrows
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    Senior Member dave75's Avatar
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    hello, how are you? i used to live in the nashville area...unfortunately i can't give any recommendations on derms there as the one I went to was just "so-so". Now what I can say, based on my opinion is that doxy at those high doses may not be the greatest thing for your health. i'm on oracea which is a 40mg low-dose, time-released capsule that according to clinical studies is not supposed to "hurt the good bacteria" in your gut. In other words, it is supposed to be not antimicrobial. I would strongly suggest that you review this medication with a doctor or derm. I've been on oracea for years with no apparent side-effects, but everyone is different. I'm really surprised the dr. that prescribed you those large doxy doses had no idea about oracea. funny thing is, when i first got this disease, my derms didn't know about it and they kept prescribing me crap that didn't work...i had to suffer for over a year and figure out things on my own to control this disease. some people don't need meds and some do...i'm one of those that has to be on them all the time...

    Quote Originally Posted by helpmeplease View Post
    Hello! Ive been lurking around here for a while now but after visiting multiple unhelpful dermatologists I think its time I appealed to the collective knowledge of this forum. First my story: When I was living in Japan I used a topical steroid called rinderon vg .12% (i think it contains betamethasone valerate and gentamicin sulfate) on my face for around a year. For some reason I didn't research the medicine at all (so dumb). I just knew it made my skin better and then that I needed it to make my skin normal and then that even with the medicine my face had started to be red all the time. I stopped cold turkey and my face went crazy. I then went to a dermatologist who prescribed protopic to help the topical steroid withdrawal. I used the protopic for about a month. It helped a bit at first but I realized that every time I didn't apply it my face got worse (exactly the same as the topical steroid). So I stopped that as well.

    It has been over a year since I stopped the protopic. My face has not returned to normal. I have had a few week long spells of regular skin in the last year but what I thought was steroid induced rosacea will not go away. I first had flushing and then started getting papules and they have just gotten worse and worse. My neck has also started flushing recently. I was hoping that this was just steroid withdrawal and that it would eventually get better but at this point, I have resigned myself to the fact that the perpetual use of the topical steroid on my face coupled with my already sensitive skin has resulted in rosacea.

    I was put on Doxycycline (100mgs morning and night) three months ago by a general practitioner. I finally went to a dermatologist a month later who lowered the dose to 100mgs a day. When I take this dose of Doxy everyday the papules completely go away and flushing almost completely goes away. None of the regular rosacea triggers make me flare. I have been on this dose for about 3 months now and I haven't had any adverse side effects. If I stop taking the Doxy, however, my face immediately flares really badly.

    I have been to two derms so far now that have told me that doxy can be taken forever. This doesn't seem right to me. There must be some side effects from taking an antibiotic for years. On the other hand, I don't know how to find an alternative. How do I find my triggers if I have none while on doxy? The quick flares after stopping doxy makes me think that my face become accustomed/addicted to the doxy. Can that even happen?! Does anyone have a similar experience with doxycycline? I don't trust what these dermatologists told me and I am uncomfortable with taking an antibiotic "forever." Any advice on how to wean myself off of it would be greatly appreciated. On a somewhat unrelated note, does anyone know of any good derms in the Nashville area? Thanks

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    Thank you both for your responses. I have some questions for both of you if you have the time to answer.

    Brad - I am aware that everyone is different but if you don't mind me asking, what methods have you found besides medicine that help to keep your rosacea at bay? I think I am going to try the alkaline diet, but I am unsure of its efficacy. I would like to stop taking medicine if possible.

    Dave - I went to another derm last week who prescribed metrogel and 50 milligrams of doxy. I tried the 50mg doxy along with the metrogel for two days and flared very badly. A few questions: do you know how different 50mg of doxy and oracea are? does that 10mg difference coupled with the time release make a difference? I'm guessing it does. One more thing, do you do anything along with taking oracea to manage your rosacea (altered diet, etc.)?

    Do either of you have any experience with metrogel? Is flaring at the start of use normal? I think I might give it another go but its difficult knowing that it will probably induce a bad flare. Again, thanks for your time.

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    Senior Member dave75's Avatar
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    my pleasure, i am happy to help in any way I can...i know how difficult this disease can be. on the 50mg doxy..here's the deal. I have tried 100mg doxy, 50mg doxy and neither seemed to work for me. for whatever reason, the time-released effects of the oracea is what works...and unfortunately the drug cost more money if you have a good heath insurance, it shouldn't be more than 30-50 bucks for 30 pills. the metrogel was a total flop for me. I don't think i've heard of many people here getting any results from that stuff. If you decide to try oracea, i would give it at least 45 days. when i first tried it, the redness was nearly completely gone in around 2 weeks. Oh yes, altered diet is key for me...even though i'm on oracea...i don't want to go on a drinking binge or eat large bowls of pasta or rice...now the medication does allow me to have little splurges here and there....i had a hamburger the other day...i still eat ice cream..stuff like that..so diet does matter for me and many others here...although you'll probably never hear that from a derm. they are usually in "la-la" land when it comes to this stuff. cheers, dave

    Quote Originally Posted by helpmeplease View Post
    Thank you both for your responses. I have some questions for both of you if you have the time to answer.

    Dave - I went to another derm last week who prescribed metrogel and 50 milligrams of doxy. I tried the 50mg doxy along with the metrogel for two days and flared very badly. A few questions: do you know how different 50mg of doxy and oracea are? does that 10mg difference coupled with the time release make a difference? I'm guessing it does. One more thing, do you do anything along with taking oracea to manage your rosacea (altered diet, etc.)?

    Do either of you have any experience with metrogel? Is flaring at the start of use normal? I think I might give it another go but its difficult knowing that it will probably induce a bad flare. Again, thanks for your time.

  6. #6
    Senior Member Brady Barrows's Avatar
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    helpmeplease,

    You can send a private message through this forum and I will be happy to reply.
    Brady Barrows
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    just thought i would offer.....if you were wanting to give metrogel a go without spending a fortune I have a full tube i wont be using as Im trying other treatments and would be happy to send it to you free of charge.

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    Quote Originally Posted by Brady Barrows View Post
    I remember my dermatologist told me that I would have to take tetracycline for the rest of my life. I didn't think so then, nor do I think so now.

    Might want to read this post.
    Me too, Brady! Same thing. I did take Oracea for about a month and it did help w. Breakouts, but decided i did not want to be pharma- dependent. Still fighting the good fight.

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    Hi,

    My doc put me on 50mg a day for 2 months doxy and like you everything was sweet when I was on it and just a week after finishing my course things went from bad to worse .

    I'd say 100mg is quite a lot and wouldn't exceed 50mg. Doxy is not a very strong antibiotic when taken at 50mg or less IMO.

    I'm currently trying Finacea (Day 2) alongside MSM/Milk Thistle- fingers crossed will let you know if it helps. I have pustules and red cheeks/nose .

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    Does anyone know if rosacea treatment with antibiotics frequently causes rebound flares like this? I seem to be having the exact same problem and I'm wondering if I'm doing more harm than good by continuing them even at a low dose.

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