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Thread: Mirvaso rebound

  1. #21
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    I also want to add @Brady my intention wasn't to come on here for an argument I wanted help and advice from people who had or are still going through this. How long their symptoms lasted what they went through so I could try and work a way out of this mess.
    I regret ever trying the cream and not looking into it enough that I do kick myself about every day but that's something I have to deal with and try and fix. I only wanted advice and answers that's all.

  2. #22
    Senior Member Brady Barrows's Avatar
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    I sure didn't mean to create an argument either. I find it very difficult to find reports of PERMANENT damage, but if I ever do get a list I will make one with more than Mistica's (and Darren1) so that if this ever comes up again I will be sure to mention Mirvaso causes permanent damage. I found over 242 posts that caused temporary damage, and going through each one to see if there is any claim of permanent damage would be a considerable effort.

    I did find in my investigation one post on what to do for Mirvaso damage, and will add more as I find them.

    Since many, if not most, of these ones who post what they did for their Mirvaso damage have left and are inactive members of RF, it takes a lot of time and effort to find these posts. Sure could use the help to find them. However, I pretty much am the Lone Ranger at the RRDi and I have one Tonto who helps some. We did have a board meeting last week with a Google Meet, one who lives in India, one in Texas and two of us in Alabama, the new home of the RRDi corporate office. We are still registered in Hawaii but I need to locate a rosacean who lives in Hawaii who would volunteer to be the local agent. Any takers?

    Brady

    Quote Originally Posted by natlaie1987 View Post
    I also want to add @Brady my intention wasn't to come on here for an argument I wanted help and advice from people who had or are still going through this. How long their symptoms lasted what they went through so I could try and work a way out of this mess.
    I regret ever trying the cream and not looking into it enough that I do kick myself about every day but that's something I have to deal with and try and fix. I only wanted advice and answers that's all.
    Last edited by Brady Barrows; 4th May 2020 at 03:48 PM.
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  3. #23
    Senior Member Mistica's Avatar
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    I appreciate all the time and effort you dedicate to the RRDI, Brady, and the long hours it takes to collect and assemble data. You do a great job.

    If I could make one small criticism, however, whilst it is important in some ways to acknowledge and point out official reviews of rosacea and the various medications, as we all know, much of it is twaddle, which is why we are all here in the first place.
    By that I mean, the official standpoint of rosacea and medications is so far removed from reality, it is ridiculous.

    Consider the following review found in the Cochrane Library of Rosacea treatments.

    https://www.cochrane.org/CD003262/SK...tments-rosacea


    Look what is considered a highly beneficial treatment. Brimonidine! The drug from hell.

    Authors' conclusions:
    There was high quality evidence to support the effectiveness of topical azelaic acid, topical ivermectin, brimonidine, doxycycline and isotretinoin for rosacea. Moderate quality evidence was available for topical metronidazole and oral tetracycline. There was low quality evidence for low dose minocycline, laser and intense pulsed light therapy and ciclosporin ophthalmic emulsion for ocular rosacea. Time needed to response and response duration should be addressed more completely, with more rigorous reporting of adverse events. Further studies on treatment of ocular rosacea are warranted.

    In addition, we have many isotretrinoin victims here on the forum.
    They consulted their dermatologists for treatment of acne, and ended up becoming severe flushers. All of them, (please correct me if I am in error), were told by their 'expert' experienced dermatologists, that any flushing which might occur would ALWAYS completely resolve after discontinuing the drug.
    Why aren't the dermatologists telling the truth? They MUST know what that drug can do, as I simply can't believe they have never had any other patients develop flushing. And even if they haven't seen them personally, I can't believe their peers haven't made mention of it.
    The same applies to Mirvaso.
    Something is very wrong with all this.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  4. #24
    Senior Member Brady Barrows's Avatar
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    Quote Originally Posted by natlaie1987 View Post
    On here there are so many people who have experienced serious side effects so its not just me looking to blame something as everyone or most people are also displaying these same symptoms. With Darren even having laser treatment and I've since watched his videos on youtube its horrendous. Im not aiming it at you but yeah Darren is right if you were also going through what we are and felt as rubbish as we do then you might understand.
    I have never taken Mirvaso or brimonidine ever for my rosacea. I totally empathize with you, Darren and Mistica for what you have all gone through and apologize for what you all have correctly chastised me for not recognizing permanent Mirvaso damage, but I have learned my lesson well, and from now on will correctly qualify my statements when discussing Mirvaso the distinction between temporary and permanent damage, that at least two cases are found of permanent damage. It is very sad that it is so difficult to follow thru on the 242 cases of negative reports to find how many of them had permanent damage. If anyone finds an anecdotal case of permanent Mirvaso damage please let me know so I can add it to the list. It would be pertinent to get a current update with the example to confirm this is how the patient still feels about Mirvaso, that it caused permanent damage as Mistica points out and Darren, who hopefully will point out as well.

    What still puzzles me is the fine distinction between what medical rebound is with an allergic reaction. I asked this question to the RRDi MAC members and got a few responses. A significant number of the negative reports discover rather quickly the erythema/flushing issues with Mirvaso use which indicates an allergic reaction over what medically constitutes ‘rebound.’ There are cases when after a considerable amount of time of using Mirvaso, one case was two years, that rebound occurs, which is the normal meaning of the term, but in this one case, the rebound is called 'a paradoxical erythema reaction.'

    I still feel that in some of the cases of what has been discussed as rebound could be an allergic reaction, but this is still a fuzzy subject with me.
    Last edited by Brady Barrows; 4th May 2020 at 03:53 PM.
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  5. #25
    Senior Member Mistica's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    I have never taken Mirvaso or brimonidine ever for my rosacea. I totally empathize with you, Darren and Mistica for what you have all gone through and apologize for what you all have correctly chastised me for not recognizing permanent Mirvaso damage, but I have learned my lesson well, and from now on will correctly qualify my statements when discussing Mirvaso the distinction between temporary and permanent damage, that at least two cases are found of permanent damage. It is very sad that it is so difficult to follow thru on the 242 cases of negative reports to find how many of them had permanent damage. If anyone finds an anecdotal case of permanent Mirvaso damage please let me know so I can add it to the list. It would be pertinent to get a current update with the example to confirm this is how the patient still feels about Mirvaso, that it caused permanent damage as Mistica points out and Darren, who hopefully will point out as well.

    What still puzzles me is the fine distinction between what medical rebound is with an allergic reaction. I asked this question to the RRDi MAC members and got a few responses. A significant number of the negative reports discover rather quickly the erythema/flushing issues with Mirvaso use which indicates an allergic reaction over what medically constitutes ‘rebound.’ There are cases when after a considerable amount of time of using Mirvaso, one case was two years, that rebound occurs when withdrawal or stopping the Mirvaso that rebound occurs, which is the normal meaning of the term. I still feel that in some of the cases of what has been discussed as rebound could be an allergic reaction, but this is still a fuzzy subject with me.
    Personally I feel the allergic reaction explanation is nonsense.

    Rosacea and flushing can present, in part, as a rash due to, - the action of flushing, inflammation, leaky capillaries and oxidative stress.
    Mirvaso, by the very nature of action causes the same symptoms, but in magnified form.
    There is nothing in that process which suggests an allergic reaction.

    This is not to say, that the odd person may be allergic to the active ingredient, and something in the vehicle, as it is possible to develop an allergy to anything, but 100's of people don't suddenly develop an allergic reaction to the same drug.

    And for what it is worth, during my rebound, I was sent to the head of departments of immunology, and dermatology at the major hospital, where I had numerous tests and no sign of allergy was detected.

    In addition, I am currently under the care of another immunologist, who has also run tests to rule out certain problems, so he could consider systemic mast cell involvement in my particular case, and the test of IgE mediated allergy was negative, as he expected it would be. I don't have 'traditional' allergies to anything as far as I know.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  6. #26
    Senior Member Brady Barrows's Avatar
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    Mistica,
    Thanks for your reply and one small criticism of my reporting 'twaddle', which is because more than not, a significant number of rosaceans trust the 'twaddle' their physician parrots to their patients, and it should be acknowledged by the RRDi with all their 'official' dogma 'twaddle' that is published in prestigious journals that are then also published at PubMed. I have tried to start our own publication, the Journal of the RRDi, which, by the way, if one publishes three journals and you have some sort of peer reviewed process, a publication can appear in PubMed, rosaceans could come together and publish their own papers to have an independent voice of rosaceans who are not part of all this 'twaddle' you refer to. However, getting rosaceans to come together rather than in independent private social media groups is a daunting task. Rosaceans prefer the NRS over the RRDi and to me this is much more 'twaddle' than the 'twaddle' you are concerned with. Very sad.

    By the way, you still haven't clearly explained what your permanent damage is from brimonidine. Is it permanent flushing/erythema or the 'facial nerve damage' ?

    Brady

    Quote Originally Posted by Mistica View Post
    I appreciate all the time and effort you dedicate to the RRDI, Brady, and the long hours it takes to collect and assemble data. You do a great job.
    If I could make one small criticism, however, whilst it is important in some ways to acknowledge and point out official reviews of rosacea and the various medications, as we all know, much of it is twaddle, which is why we are all here in the first place.
    By that I mean, the official standpoint of rosacea and medications is so far removed from reality, it is ridiculous.
    Consider the following review found in the Cochrane Library of Rosacea treatments.
    https://www.cochrane.org/CD003262/SK...tments-rosacea
    Look what is considered a highly beneficial treatment. Brimonidine! The drug from hell.
    In addition, we have many isotretrinoin victims here on the forum.
    They consulted their dermatologists for treatment of acne, and ended up becoming severe flushers. All of them, (please correct me if I am in error), were told by their 'expert' experienced dermatologists, that any flushing which might occur would ALWAYS completely resolve after discontinuing the drug.
    Why aren't the dermatologists telling the truth? They MUST know what that drug can do, as I simply can't believe they have never had any other patients develop flushing. And even if they haven't seen them personally, I can't believe their peers haven't made mention of it.
    The same applies to Mirvaso.
    Something is very wrong with all this.
    Last edited by Brady Barrows; 4th May 2020 at 04:22 PM.
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  7. #27
    Senior Member Brady Barrows's Avatar
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    Mistica,

    You maybe on the same wave length with Dr. Peat who wrote, "I don't think either allergy or rebound would be the best description for the direct promotion of the secretion of inflammatory cytokines by a vasoconstrictor drug or its excipients. Since nitric oxide, prostaglandins, and inflammatory cytokines probably contribute to the problem, non-toxic inhibitors of those, such as vitamins A, E, and K, aspirin, and caffeine might be helpful for the basic problem." Source

    Dr. Peat never explains what the word is to describe this. Do you use the word 'rebound' to describe what Mirvaso does to you? I guess it really doesn't matter. The correct word is 'damage', whether it is permanent or temporary.

    In the same thread, Husein El-Ahmed, MD posts that "Allergic reaction is a immune-mediated process which requires a previous contact of antigen presenting cells to the drug.' What Dr. Peat is describing above is an immune system response with "nitric oxide, prostaglandins, and inflammatory cytokines" and recommends antioxidants as 'helpful.' He didn't make it clear to me from what he wrote, which was a lot, and refers to a lot of papers on this subject, why he doesn't think 'rebound or allergy would be the best description' and offers no other word to describe it. But I really like Dr. Peat and his research and am so grateful I can ask him questions since he serves on the RRDi MAC. By the way, the RRDi MAC is the crown jewels of the RRDi in case you didn't know.

    Dr. Husein El-Ahmed also posts, "Rebound is a NON-immune-mediated process in which the symptoms are caused for the effect or the lack of effect (discontinuation) of a drug. This reaction is rather quickly, but no immune cells are implicated, in overall terms."

    Do you really think that these two different medical terms, 'rebound' and 'allergic reaction' are that ambiguous? I don't think so. I still think there is a difference between these two terms like Dr. Husein El-Ahmed points out.

    At least you Mistica stick around RF and post (and are engaging, not mincing words) keeping us updated on your progress. Thanks.

    Brady

    Quote Originally Posted by Mistica View Post
    Personally I feel the allergic reaction explanation is nonsense.
    Rosacea and flushing can present, in part, as a rash due to, - the action of flushing, inflammation, leaky capillaries and oxidative stress.
    Mirvaso, by the very nature of action causes the same symptoms, but in magnified form.
    There is nothing in that process which suggests an allergic reaction.
    This is not to say, that the odd person may be allergic to the active ingredient, and something in the vehicle, as it is possible to develop an allergy to anything, but 100's of people don't suddenly develop an allergic reaction to the same drug.
    And for what it is worth, during my rebound, I was sent to the head of departments of immunology, and dermatology at the major hospital, where I had numerous tests and no sign of allergy was detected.
    In addition, I am currently under the care of another immunologist, who has also run tests to rule out certain problems, so he could consider systemic mast cell involvement in my particular case, and the test of IgE mediated allergy was negative, as he expected it would be. I don't have 'traditional' allergies to anything as far as I know.
    Last edited by Brady Barrows; 4th May 2020 at 04:05 PM.
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  8. #28
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Brady Barrows View Post
    Mistica,

    You maybe on the same wave length with Dr. Peat who wrote, "I don't think either allergy or rebound would be the best description for the direct promotion of the secretion of inflammatory cytokines by a vasoconstrictor drug or its excipients. Since nitric oxide, prostaglandins, and inflammatory cytokines probably contribute to the problem, non-toxic inhibitors of those, such as vitamins A, E, and K, aspirin, and caffeine might be helpful for the basic problem." Source

    Dr. Peat never explains what the word is to describe this. Do you use the word 'rebound' to describe what Mirvaso does to you? I guess it really doesn't matter. The correct word is 'damage', whether it is permanent or temporary.

    In the same thread, Husein El-Ahmed, MD posts that "Allergic reaction is a immune-mediated process which requires a previous contact of antigen presenting cells to the drug.' What Dr. Peat is describing above is an immune system response with "nitric oxide, prostaglandins, and inflammatory cytokines" and recommends antioxidants as 'helpful.' Dr. Husein El-Ahmed also posts, "Rebound is a NON-immune-mediated process in which the symptoms are caused for the effect or the lack of effect (discontinuation) of a drug. This reaction is rather quickly, but no immune cells are implicated, in overall terms."

    Do you really think that these two different medical terms, 'rebound' and 'allergic reaction' are that ambiguous? I don't think so. I still think there is a difference between these two terms like Dr. Husein El-Ahmed points out.

    At least you Mistica stick around RF and post keeping us updated on your progress. Thanks.

    Brady
    That's interesting distinction - I haven't used Mirvaso but there were a couple things I've tried that I describe to doctors as "contributing to long term worsening of my condition". For example clonidine use which in a few days triggered inner nose burning + nose flushing, and got better but never completely resolved after discontinuation. Another example is a strong vasodilator which caused so much swelling in my face when I took it and that left me with what I describe as "pressure knots" (constant) underneath the skin. In both of these, flagyl (anti-inflammatory) helped bring me to "baseline". I stopped flagyl quickly due to side effects, the inner nose burning and "pressure knots" came back, am now on Xeljanz (immunsuppressant / anti-inflammatory) which has also helped get rid of these symptoms. I have been on plaquenil for a long time but it isn't strong enough for me - although I know it helps a few post-accutane flushers. I wonder in some cases of "rebound" - it is really extra inflammation (in skin or blood vessels or nerves) that spiraled things more out of control, in an area where the body can't appropriately heal things in the first place. There seems to be some disagreement as to what "rebound" really means - if it inherently implies that symptoms can automatically? potentially? go back to baseline, or not.

    An allergic reaction though is different from inflammation or an autoimmune response, or whatever the issue is here I think.
    In the neurogenic rosacea paper the authors compared it to CRPS - which is when your body cannot heal from something that it "should" heal from. Instead the inflammation and nerve sensitivity just spiral out of control. Usually to a limb.

    In this paper the patient used mirvaso and she had what the authors call "rebound" - she even got bumps whereas before she had none. She was rx'ed Accutane, Doxy, and laser to help her get back to baseline. I am glad that the accutane and laser worked out for her and didn't give her more issues. The downregulation of alpha receptors would make sense in a case of "rebound" but fails to capture the excessive inflammatory reaction she had, I think.
    http://www.ijdd.in/article.asp?issn=...aulast=Ambalal

  9. #29
    Senior Member Brady Barrows's Avatar
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    Welcome laser_cat to this discussion. Reminds me of days of long ago when RF was THE rosacea forum to discuss topics like this and plenty of active members. Actually, in the paper you sent the link to it is called "brimonidine rebound/contact dermatitis" which is why I posted this as a question to the RRDi MAC members and made a post on this subject here. I don't think that 'there seems to be some disagreement as to what "rebound" really means' since I think that there is a medical definition of what it refers to and I cleared this up in the post I created on this subject, what I think happens is that there is confusion on when to call it 'rebound' and when to call it an 'allergic reaction.' It is clear in the product insert that comes with Mirvaso that in the clinical trials and in post marketing that an allergic reaction ocurrs in some cases. In post marketing, Galderma has acknowledge the 'rebound' issue that occurs, which is different from an allergic reaction. In most cases of 'rebound' the patient returns to baseline but in some the situation is worse than baseline when the patient stops using the brimonidine. If after a reasonable amount of time the patient still isn't at baseline, and is worse than before the Mirvaso, there may be other issues, i.e., other rosacea treatments, environment, stress, other underlying condition that needs to be ruled out, etc. And of course, the damage could be temporary or even permanent as we have discovered in this thread.

    You certainly have been through a plethora of rosacea treatments. Personally I think the less is more treatment plan is mo'betta, but I practice the more is better in actuality.

    It is interesting you are on Plaquenil for your rosacea. How long have you been on it and how often and what dosage?

    Plaquenil has made the headlines lately as you are probably very much aware with regard to treatment for coronavirus. Are you still able to obtain a prescription?

    Brady

    Quote Originally Posted by laser_cat View Post
    That's interesting distinction - I haven't used Mirvaso but there were a couple things I've tried that I describe to doctors as "contributing to long term worsening of my condition". For example clonidine use which in a few days triggered inner nose burning + nose flushing, and got better but never completely resolved after discontinuation. Another example is a strong vasodilator which caused so much swelling in my face when I took it and that left me with what I describe as "pressure knots" (constant) underneath the skin. In both of these, flagyl (anti-inflammatory) helped bring me to "baseline". I stopped flagyl quickly due to side effects, the inner nose burning and "pressure knots" came back, am now on Xeljanz (immunsuppressant / anti-inflammatory) which has also helped get rid of these symptoms. I have been on plaquenil for a long time but it isn't strong enough for me - although I know it helps a few post-accutane flushers. I wonder in some cases of "rebound" - it is really extra inflammation (in skin or blood vessels or nerves) that spiraled things more out of control, in an area where the body can't appropriately heal things in the first place. There seems to be some disagreement as to what "rebound" really means - if it inherently implies that symptoms can automatically? potentially? go back to baseline, or not.

    An allergic reaction though is different from inflammation or an autoimmune response, or whatever the issue is here I think.
    In the neurogenic rosacea paper the authors compared it to CRPS - which is when your body cannot heal from something that it "should" heal from. Instead the inflammation and nerve sensitivity just spiral out of control. Usually to a limb.

    In this paper the patient used mirvaso and she had what the authors call "rebound" - she even got bumps whereas before she had none. She was rx'ed Accutane, Doxy, and laser to help her get back to baseline. I am glad that the accutane and laser worked out for her and didn't give her more issues. The downregulation of alpha receptors would make sense in a case of "rebound" but fails to capture the excessive inflammatory reaction she had, I think.
    http://www.ijdd.in/article.asp?issn=...aulast=Ambalal
    Last edited by Brady Barrows; 4th May 2020 at 09:55 PM.
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  10. #30
    Senior Member Brady Barrows's Avatar
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    Default This is interesting find...

    "Topical application causes vasoconstriction of superficial vessels at the site of application, allowing for the reduction of erythema. We hypothesize that the reaction seen in our patient represents a compensatory vasodilation of vessels in the surrounding skin due to chronic vasoconstriction at the site of long-term brimonidine use. Findings from history, physical examination, laboratory testing, and histopathologic examination ruled out several other etiologies, including photosensitivity and autoimmune conditions. We therefore conclude that this is a probable adverse drug reaction to brimonidine."

    The authors of this paper avoid the term rebound and refer to a patient who "after 7 months of brimonidine treatment, showing compensatory vasodilatation and flushing in untreated areas of right lateral cheek, neck, and chest." "Physical examination revealed marked bright erythema diffusely covering areas of the lateral cheeks, neck, and upper chest (Figure, A). Interestingly, there was clear sparing of the sites of brimonidine application on the central face." The authors describe this event as "a probable adverse drug reaction to brimonidine."

    I have found other papers on the difference between rebound and a 'drug reaction' with brimonidine and added the above quotes to this post.

    I am still looking for treatment protocols for brimonidine rebound which are few to be found.
    Last edited by Brady Barrows; 5th May 2020 at 01:31 PM.
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