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  • #76
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    Last edited by owldog; 10 December 2020, 07:35 PM.

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    • #77
      Originally posted by laser_cat View Post
      The drugs I was rx'ed by derm (in this order):

      gabapentin
      lyrica
      doxepin
      (already on cymbalta, but he would have rx'ed it)
      mexiletine
      plaquenil
      ranexa
      nadolol
      topical amitriptyine / ketamine
      encouraged lidocaine iv's
      encouraged IVIG
      marinol (marijuana THC)
      baclofen
      retry IVIG at higher dose / longer time frame (2 gm IVIG / kg body weight / mo for 6 mo)
      azathioprine

      by pain doc:

      lidocaine iv
      ketamine iv
      butrans
      keppra
      trileptal
      gamma core (tVNS) (This is good in theory but I think the vibration on neck made me worse)
      Aimovig
      topical diazepam
      topical baclofen
      stellate ganglion block
      trigeminal block
      zonisamide
      flecainide

      by another derm:

      midodrine
      low dose naltrexone
      indomethacin
      high dose antihistamine (2x zyrtec + 2x allegra)
      botox
      amlodipine
      propranolol ER
      aprepitant (could not get insurance coverage more than 2 days, very difficult to do so)
      tegretol
      offered butorphanol nasal spray
      topical amitriptyline
      topical bupivicaine / lidocaine / tetracaine
      memantine
      glycopyrrolate
      suggested topical capsaicin OTC 5x/day, until acclimation, if I wanted to give it a go (warned me he never had a patient use on face/ears)
      daily triptan (frovatriptan)
      oral metronidazole (just to get a handle on edema)
      offered tramadol
      Xeljanz
      Tanezumab (compassionate use)

      by neuro:

      IVIG (1 gm IVIG / kg body weight / mo for 3 mo)

      by other docs (PCP, psych,..):

      clonazepam
      mirtazapine
      cymbalta vs. paxil vs. effexor
      atarax
      clonidine
      topamax
      gastrocrom
      Hi laser_cat,

      First of all, thank you for this wealth of knowledge!

      I was wondering how effective each medicine was for you. Is it possible to tell more about how effective each medicine was, or make the list in order of effectiveness.

      Thanks!

      edit: i wasn't done reading the entire thread and now see you already commented on this.
      Last edited by joshuaweismann; 21 May 2020, 08:20 PM.

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      • #78
        Originally posted by owldog View Post
        Laser_cat sorry it's taken me so long to get back. Thanks for the detailed response.

        Yes they are their own micro environments which is a handful to manage when nose, cheeks and ears all flush and some medications work for some and exacerbate others.

        You mentioned low dose accutane for possible help with the nose flushing. Mine actually never flushed on accutane. I was on it very low dose for many years. It was only after I stopped when I noticed my nose started flushing and swelling up at the tip. I get the burning on the inside too now.

        I've been trialling hydroxychloroquine and so far so good. I haven't been on it for long so very early days but my ear flushing seems to have been vastly reduced. Now my ears only flush around once or twice a week as opposed to multiple times every night. The redness on my cheeks is more pink now rather than angry red and it calms down a lot faster after my shower and if I get hot. And I've seen some improvement on the itching on my cheeks.. There were a few red patches on my temples which have completely cleared up. They came about when I had a full body rash last October. The rheumatologist thinks it is auto immune related and I have something 'lupus like'.

        After starting the hydroxychloroquine the sleep flushing has stopped as well for the moment and I'm sleeping so much better and have more energy in the day. The only downside is the nose flushing seems a bit worse. Haha can't ever get it right. It's as if the blood just has to pool somewhere so my poor nose is getting it now.

        The tip of my nose gets ice cold then the minute my body temperature warms up the slightest it flares up and burns and tingles on the inside. I'm hoping this will calm down as I get used to the drug. If not I'm going to start duloxetine and possibly try mepacrine as well as continue with the hydroxychloroquine. Have you tried mepacrine yet?

        I am also finally doing a very slow taper down of the clonidine and hope this will help.
        That's great to hear! Really thrilled for you.

        The plaquenil never really helped my face - mostly my neck. So that's really interesting it's helping you and some other people who have similar symptoms.

        Update on my end: I had a biopsy of my cheek which showed a significant amount of inflammation consistent with lupus or dermatomyositis. I have high creatine kinase which suggests dermatomyositis. In case that is helpful for you (or anyone). There are a lot of people with overlapping small fiber neuropathy and autoimmune conditions and my hunch is that there is a tangled neuro-immune web that got out of control. Two leading dermatologists each independently thought my cheek biopsy would show traditional rosacea in my face and it did not. One dermatologist thought it would show non-specific inflammation (most biopsies he's taken of people like me show non-specific inflammation).

        Unfortunately 9 weeks on Imuran didn't do much so I stopped. (It helped with some swelling, joint pain, similar details like that.) I am on keflex (antibiotic) which I know helps me with inner nose burning, nose flushing, itch, sensitivity to touch. I'm still on Xeljanz and I recently increased my cymbalta dose a bit. It would be impossible for me to tease everything out at this point lol but I know the keflex, Xeljanz, cymbalta are each positive. I am going without night flaring sometimes and tolerating heat much better.

        Nice to hear from you.

        Best,
        Last edited by laser_cat; 26 June 2020, 05:19 PM.

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        • #79
          -
          Last edited by owldog; 10 December 2020, 07:38 PM.

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          • #80
            Originally posted by owldog View Post
            TI did a myositis antibody screen recently which showed only some weak positive bands but the rheumatologist thought it was enough to include that in the diagnosis for autoimmune. He's been very helpful and actually thought the redness on my face was more a lupus rash rather than rosacea.
            That's really interesting to me - my understanding is the myositis antibodies are pretty specific (eg if you have them, you have dermatomyositis). (Mine were all negative.)

            I am on Cellcept now (swapped out Xeljanz) and going to retry IVIG at higher dose. Under the dermatomyositis diagnosis, my insurance easily approved IVIG for me. Stanford dermatology said that when they analyzed their patient records for dermatomyositis, they found Cellcept and IVIG to be the best for skin DM. My derm now said I needed an immunosuppressant / modulator like methotrexate, cellcept, Imuran - that my muscle enzymes were likely going to continue to climb otherwise. I will say that my body feels much better on one of these types of drugs - feels like I'm 10-15 yrs younger. My doc said this doesn't really happen when "normal" people are given an immunosuppressant - they typically feel terrible.

            The itch is more common in DM vs lupus - I think one of the differentiating clinical features. (I have severe itch on my scalp as well as face.) Yeah, I noticed Imuran, Xeljanz, and antibiotics each help with my itch. (I think my derm's goal is to find a non-antibiotic sol'n). (I'm guessing the Cellcept will too.) Sorry you wasted time with soolantra (so did I ..)

            BTW - my biopsy looks the same as this man's (from what I can tell with these nonsensical phrases, anyway! ... mucin in the dermis and vacuolar changes in the interface) The man got response with basic EM drugs although he had a connective tissue disease biopsy. Really wonder what the relationship is between the CTD biopsy and the more EM-type of clinical symptoms. (I'm getting a second pathologist analysis on my biopsy slides.)

            https://www.jaad.org/article/S0190-9...889-1/abstract

            Glad you have a helpful doc!

            PS - I'm still reading about vit D and the effect it can have in terms of the immune system / nerves, mostly when I can't sleep at night lol. I've asked all my doctors about counterproductive effects of vit D and they each don't know / haven't heard of that response before. It is pretty wild, how unrecognized that is by the medical community, yet how much of predictable "thing" it is here. I hope one day there is an answer!
            Last edited by laser_cat; 26 June 2020, 07:06 PM.

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            • #81
              Want to quickly (maybe not so quickly..) update. After trying all these things, I believe it was a huge mistake not to try a full dose rosacea antibiotic, and maybe even another in a different class (eg doxy or minocycline then azithromycin) and then lastly flagyl (all have sort of different mechanisms). I was told I can be on 3 antibiotics full dose for life if needed. I'm on 100 mg minocycline about to double it - helps with flushing, pain, and edema, flagyl 500 mg BID (helps with edema). At that point I am going to either add in azithromycin, accutane, or Cosentyx. Cosentyx targeting the Th1/Th17 circuit that antibiotics don't directly target and has been shown to be prominent in many rosacea types. Accutane - I believe if you go too high it can create inflammation and rosacea - dunno how - maybe directly binding to thermoTRPs? But if you try to lower inflammation in your face prior as much as you can, you won't be as sensitive (thermoTRPs not as primed) and maybe you can tolerate it more. WHen I was trialing it once, i had a good run with flagyl in the background, but providers changed around, meds changed around, and I lost that foothold. After being on accutane, I can't imagine anything having the same effect on swelling and also restructuring the skin (?) so that I can tolerate temp changes / wind without pain. When I tried it without any anti-inflammatories in the background, and at a high-ish dose, (10 mg /day) it was a disaster - like someone put acid on my face and it directly activated the nerves (it didn't just ... dry out my skin. I highly doubt that's the main reason it can cause flushing.).

              So my diagnosis now is undiagnosed: likely neurogenic rosacea with solid edema. Unfortunately the go-to med for solid edema (accutane) can cause burning flushing and neurogenic rosacea, an interesting problem.

              I think it's possible that sitting on high dose 2-3 antibiotics for several months - 1 yr can slowly drain the solid edema. I know one person who said it took them a yr on 2 antibiotics, for the solid edema in her cheeks to resolve. I think it takes a long time for the inflammation to resolve but also for the lymph vessels to heal (?) - just my guess.

              Cosentyx - first clinical trial imo shows weak effect and it is sort of immunosuppressive but maybe an alternate way to tackle things. Il-17A shown to be high in rosacea skin. I haven't tried but I doubt it can be as powerful as minocycline and flagyl together, which I'm on now and need more help.

              If I were immediately put on full dose minocycline or whatever, then I think I could have prevented this from getting so much worse (we'll never know). I don't think the rosacea variants are all distinct, looks like a huge network of inflammation and neuro-inflammation with specific things being upregulated. I asked about the possibility of me progressing into rhinophyma, and my doc said likely not, because of my current antibiotics now. Which ... logically makes me think ... why wasn't I put on them right at the beginning, to generally limit progression.

              I later developed some pustules (I don't care much, mild) and burning eyes (noticeable only if i get off antibiotic) although for 4 yrs I was just a flusher.

              I think if you are a severe uncontrolled flusher - my 2 cents is to get on a tetracycline antibiotic asap. Even if it doesn't help, it might slow down progression. Eg swelling, blood vessel leaking, etc. I'm told they tend to lose efficacy though.

              The solid edema is starting to break up some. On ketotifen, minocycline, flagyl and cymbalta, klonopin. Honestly i think the thyroid antibodies in my neck caused neck inflammation (neck heat / swelling helped by cellcept- so something autoimmune) but clogged up the lymph nodes / lymph vessels in my neck, which coupled with rosacea pushed the inflammation and eventually solid edema up to my face and scalp. I can scrunch my nose a little easier but I have a long ways to go. Maybe the bottleneck is the facial inflammation / damage, or maybe the bottleneck is the dysfunctional lymph nodes. I don't know.

              Oh yeah - no other academic institution could confirm dermatomyositis or connective tissue disease based on my biopsy or anything else. ****ing Tulane, man. I even presented these second pathologist opinions to the doc who ... ignored them, continuing to treat my solid edema as dermatomyositis.

              I am thankful for this group and the info we share. One of my docs said he will present my case at some national rheum society grand rounds or something. Docs seem to defer to the patient often in difficult / refractory cases (well, not Tulane, and they made a big "oops"). I'm thankful my docs seem to recognize that I know my condition well - intuitively and just starting from the ground up, reading now (tens of) thousands of papers / derm textbook chapters. But I hate that they sort of come to rely on the patient. And I hate the pressure of having to do this, to try to prevent mistakes, and try to get my life back.

              Hopefully there's an ending, where I have more space in my mind to become more of myself again. As someone who spent more time with computers than people, I have learned a lot about communication and how to present your case efficiently. University hospitals have the best docs. Know that there are ground rounds, and referral tracks to docs who only take "difficult patients" (in the US) and they will think more outside the box (willing to bend the rules a bit on flagyl eg because you are so desperate for relief). But I've learned there are a lot of sad cases out there, with no answer. And this tends to be uncomfortable for other people to realize, who think their life depends on an answer. Tolerating the unknown is difficult. I greatly admire the people who have accepted their condition and any disability it brings.

              Personally this has been a nightmare that I don't think doctors will ever understand until there are more publications on severe cases. A part of what makes this interesting/ frustrating - gabapentin might help pain but can cause swelling and flushing as a rare side effect. Amitriptyline can help pain but can be vasodilatory. Laser can help but cause damage to a large amount of skin but can help flushing/redness. Beta blockers can increase cold pain and not be helpful in continuous flares. Accutane can help swelling but can trigger neurogenic rosacea. What helps one aspect, can make another aspect worse. What helps someone, may not help someone else. And maybe there are people so severe that no amount of medication can help.

              Take care and maybe I'll update after I trial these things. {maxing out antibiotics - ie possibly 3, cosentyx as a"probably safe" add-on, accutane if I ever feel my skin can handle it}
              Last edited by laser_cat; 20 May 2021, 06:20 PM.

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              • #82
                I just wanted to throw in a bit of information about Accutane and vitamin A, in case it has any relevance to you, or anyone else taking Accutane.

                Prof Chris Masterjohn has a youtube channel where he regular posts videos on various topics. He has a Phd in Nutritional Science.
                He also has a website. You can ask questions and he may do a youtube presentation on topics he finds interesting.

                Among these videos is the topic of Accutane and how it can actually cause vitamin A deficiency. I can't locate it, but I did locate a rebuttal he gave to a Naturopath who questioned his health.
                It is long winded and mostly has nothing to do with Accutane, so I have copied and pasted the relevant part here.

                I thought it was interesting and if it is accurate, it will effect every person who takes Accutane.
                Perhaps it explains some of the adverse reactions people experience from the drug.
                Perhaps, taking vitamin A would work better with far less side effects?
                Including in your situation?

                I can take a low dose vitamin A supplement in the form of cod liver oil. Very low dose. But any higher and I quickly run into problems. Facial pressure and extreme flushing and when I have taken high doses and discontinued them, the rebound flushing is further worsened for weeks. In particular it significantly lowers my tolerance to heat.

                Like Prof Masterjohn, I find that higher doses improve sleep and whilst I don't suffer a mood issue, I would go as far to say, I experienced a bit of a 'high', for want of a better word.
                Higher doses also shut down my flushing for a short few weeks, until the severe rebound set in. Along with headaches and joint pain. I was taking 10,000iu everyday for a couple of weeks and then, every second day.
                My threshold is clearly much lower than the dose that is 'proven' to be safe.

                I can't tolerate supplemental vitamin D at all, and I don't support the theory that if you take high doses of Vitamin A, you will be fine if you balance it with high doses of vitamin D. It is not natural to supplement with vitamin D. D should be made from exposure from sunlight.

                That aside, going back to the thought that Accutane is an antagonist of Vitamin A, perhaps if you took a very low dose of Accutane, plus regular vitamin A along with your Flagyl, you might reap rewards without significant side effects?
                Or better still I guess, omit the Accutane and just take the vitamin A at a dose which suits you?

                ***********************
                https://chrismasterjohnphd.com/blog/...t-smith-health

                Scroll down to the Title:
                Can we make inferences about vitamin A from Accutane?

                While some vitamin A is converted to 13-cis retinoic acid in the body, most of it is converted to all-trans retinoic acid. There are very good reasons to consider Accutane and vitamin A antagonists.

                13-cis-retinoic acid interacts with the genome in a completely different and far less regulated way than all-trans retinoic acid. In a mouse model of emphysema, vitamin A is protective while 13-cis-retinoic acid is not. 13-cis-retinoic acid accumulates in the eyes of rats and interferes with vitamin A recycling; in fact, rats taking it took fifty times longer to recover from exposure to intense light than rats that did not take it. This is a sign of functional vitamin A deficiency.

                This antagonism is also supported in human case reports. Accutane caused night blindness in a child with cystic fibrosis, and vitamin A supplementation resolved it. Two patients developed depression on Accutane; going off the drug and supplementing with 10-12,000 IU of vitamin A for seven to ten days resolved it, and they were able to go back on the drug without it recurring.

                It is not an ?armchair ?Appeal to Nature? fallacy to distinguish between Accutane and vitamin A. It is simply a requirement of scientific precision and logic to make this distinction.
                Previous Numerous IPL.
                Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                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.

                Comment


                • #83
                  Also, regarding your thyroid antibodies, too much vitamin A can inhibit thyroid function.
                  I have done that too.
                  Previous Numerous IPL.
                  Supplements: High dose Niacinamide, Vit K2, low dose Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Mod- dose B's. Low dose zinc. Testing Quercetin.

                  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.

                  Comment


                  • #84
                    laser_cat hey I just read your postings and thank you so much, this was so helpful! I am diagnosed with neurogenic rosacea and suffer from severe flushing, nerve pain and facial edema for 2 years and my life was and is still like hell... unfortunately the dermatologist in germany have no idea how to treat it..
                    I have tried so many medications: doxy, all the typical topicals which makes my skin so much worse and aggressive, gabapentin, pregabalin, cymbalta, amitriptylin, notriptyiln, cannabis, clonidine, probanolol, tilidin, acupunture, light therapy, antihistamines, botox, doxepin.
                    I also had a biopsy made by a teaching clinic and the result showed the same as yours which I find really interesting. But they rule out lupus and dermatomyositis because of the symptoms. They also found some demotex mites, and I was wondering if they were found in yours as well? The derm wants to kill them by soolantra and doxy, but I didn't tolerate both of them.. He wants to put me on those again, but I really don't see the point because they made my symptoms so much worse. Can I ask you where you live and who are your very good derms? Maybe I can make any contact, this could be so helpful.
                    The biggest problem I have is that the doctors here have no clue and I am on my own to get through this and I am honestly completely overstrained. The struggle is that every medications that should help with the nerve pain worsens my flushing and especially the edema. My next trial is Mirtazapin and maybe the lidocaine infusions you were talking about.
                    How are you doing? Do you have an update?
                    And do you find any medications like super helpful? Maybe I would try them first. And do you have any advice for me? I really struggle to find a way out of this ****
                    I really still try to understand all the connections and roots and this is just so complicated. I also think that my mast cells are involved in any way but ketotifen isnt available here anymore for some reason. And anyway I am a little scared to mix all these medications by myself without supervision of a good derm. I also thought about trying MSM because of its anti-inflammatory benefits and its ability to stabilize the mast cells. But ahhh I don't know what to do and I would really love to hear from you. Maybe you can help me a little bit in this awful jungle. XX Michelle

                    Comment


                    • #85
                      Update from me:

                      I tried ketotifen 1 mg BID and benefits were too weak for me to continue with it.

                      I saw NYU Langone Dermatology (after Stanford, UCSF, Tulane, and Louisville) and am most impressed with them.

                      The best thing for flushing for me I think has been antibiotics/probiotics and I know abx are controversial here. When I told UCSF that flagyl helped, they suggested I bump up my dose but I didn't, and suggested adding in minocycline 50 mg - 100 mg BID which I did. I was on flagyl on/off for a yr and minocycline for 3-4 months and NYU is helping me ramp down (I'm 75% off of them). All along I was on 50 billion CFUs / day probiotic. Since the very slow ramp down, I have started a high dose probiotic, 500 billion CFU's, that I take daily. Note that I do not have any indigestion or even any food triggers (except alcohol). NYU gave me loprox shampoo to normalize the microbiome (it had gotten yeasty) which is an antifungal and has anti-inflammatory properties with it. So something in that, my face is not as red as baseline, and I can go through a day without flushing. NYU is going to try to compound anti-inflammatory topicals for me - saying the concentration of it locally to the skin are a lot higher than any pill - like ruxolitinib in Avene cream or others. He also wants me to maintain abx on low dose doxy or minocycline.

                      THe Cellcept I was on for one year and helped with my internal neck fevers that I believe were linked to thyroid antibodies but I'll never know. We are slowly ramping down, hoping benefits persist.

                      We might follow up on low dose accutane - no more than 20 mg / wk - but that is getting ahead of things. NYU is big on normalizing the skin microbiome (or even obliterating it), addressing internal inflammation (switching to oracea, anti-inflammatory compounded topicals). They did patch testing with 133 allergens (I had no rxn to anything), did their own autoimmune consult, did their own bloodwork to get a better idea of what's going on.

                      I am not suggesting this for anyone else, just saying my experience. I find a huge variance in doctors when it comes to quality. And, I had lots of devastating SE's with drugs (weight loss and insomnia...), that my internist didn't catch, and dermatologist / psychiatrist couldn't coordinate changes, it was a mess for a while (especially after I moved out of CA). And I think we are all different. Eg, there was a post that someone made of accutane helping his flushing at very low dose and I don't think there was anyway that could have been the entire answer for me, although it did help with my redness, pores, and pain. Plaquenil helping some people here but it didn't help me at all.

                      Other oral (non-rosacea) anti-inflammatories like trental (helped a little, but not enough to continue taking it), aspirin, Otezla, LDN ... did not help my face. It was the rosacea abx / accutane / probiotics / topical loprox that I only felt significant difference. Neuro meds or vascular meds did not help, in the end (either immediately worse, worse over time, or worse in the rebound). (Cymbalta helps some and I'm still on it but I believe it waned over time, or just didn't target the right thing strong enough.) At this point I believe I have tried all neurovascular meds.

                      I think the target was inflammation all along.

                      STanford after 5 years culminated in a "no diagnosis" - saying that I do not fit neatly into face erythromelalgia / neurgenic rosacea, or solid face edema. Despite Stanford previously saying I had all these all of these (huh? i thought solid edema was a clear binary for derms ...). NYU says emphatically that I do NOT have solid edema (lol way to go, Stanford). I am seeing someone there who published the best case series on Morbihan ... so he would know, I think.

                      I feel like my face, neck, and scalp all "need to drain", feels "stuck" - and NYU says this is secondary to inflammation. Maybe the deep inflammation I have in the biopsy? (mucin in the dermis, huge water attractant).

                      NYU has diagnosed me with : Facial Erythromelalgia, rosacea-like dermatitis, and seb derm v contact derm.

                      Last visit with NYU - who is seeing me monthly - he wrote down mild to moderate erythema - I've never gotten "mild" and "erythema" together in my life.

                      Will update down the line, but this is the path I'm finally narrowing in on.

                      This has been such a profoundly sad road for me, roller coaster for my whole family. Isolating, financially-sucking ... I cannot even put words to it, really. Like a part of me has died. And a simmering anger / mistrust for most doctors that wants to rear its head at every appt now that I just have to breathe through, lest it get the best of me (but if I get a whiff that a doctor is imprecise / wasting my time / not prepared, I'll admit it can get the best of me). It is so easy for a well-meaning, "good ish" doctor to make things worse imo for rare or complex things. If medical PTSD is a thing, I have it. I cry often before doc appts and have to intentionally try to orient myself to communicate the best I know how.

                      I sympathize with eanyone with life-limiting severe/misunderstood conditions in the dark looking for answers, i see you, you're not alone <3

                      Lizzy
                      Last edited by laser_cat; 2 August 2021, 05:39 PM.

                      Comment


                      • #86
                        last word from 5 yr treatment at Stanford.

                        (And no, their logic doesn't make sense....I think the details matter, especially with highly risky drugs like accutane and double antibiotics. I like the "rosacea-like dermatitis" diagnosis given to me by NYU while recognizing the extreme nerve sensitivity, facial erythromelalgia.)

                        The most irking (and most amusing) sentence in bold.
                        Anyway... moving forward .... hopefully.


                        ----------------------
                        Yeah, I don't think anyone is 100% sure what to call your diagnosis. Unless [your doc at NYU] has said otherwise. I know that is lame. You don't really fit the classic neurogenic rosacea, solid facial edema, or facial erythromelalgia (a controversial term). Your case seems unique in the constellation of features. I was honestly hoping the CUD/UDN or the exome sequencing was going to identify a novel mutation in your case. You seem to have symptoms that are similar to neurogenic rosacea and solid facial edema, but certainly these diagnoses fall short in explaining your case.

                        You don't have the classic solid facial edema where the skin is constantly indurated (thickened) and red. Those patients have very few symptoms typically.

                        But your skin does resemble solid facial edema in terms of the deep dermal swelling/inflammation that causes the pores to be prominent and have that stuck sensation like fluid can't drain from your face. So I think in trying to place you into a diagnostic category and therefore try to draw some treatment ideas from that, solid facial edema is helpful. But I agree you are not the typical patient with that and so I understand [Dr. C at NYU] not wanting to call it that. The potential for your skin to wax and wane as far as retaining fluid and then not retaining as much is also a property that would be abnormal for solid facial edema as these patients have just fixed indurated basically with little to no oscillation across weeks/months. Accutane + flagyl are typical treatments for solid facial edema (not neurogenic rosacea), and those seemed to help you, so in that way thinking about other treatments for solid facial edema may be helpful as a guide but not a rule.

                        Hope that makes sense.
                        Last edited by laser_cat; 28 July 2021, 11:27 PM.

                        Comment


                        • #87
                          RE vitamin D + flushing, and noticing I respond somewhat to abx / accutane :

                          From a Steinhoff paper about rosacea pathology: "The upstream signal or signals of enhanced PAR 2, TLR-2, and KLK-5 proteins in rosacea have not been identified yet. However, vitamin D can increase TLR-2 and KLK-5 expression in keratinocytes and is found in excess in some patients with rosacea and might be a candidate"
                          from UCSF:
                          Your comment about Vitamin D is interesting. Rosacea appears to be a "selected" trait that allows those who have it to make vitamin D more easliy with low sun intensity. As people moved north out of Europe into Scandanavia and Ireland Rosacea protected women against Vit D deficiency which led to maternal and fetal complications.

                          Comment


                          • #88
                            From UCSD: (I've already tried oral and topical ivermectin)
                            -------------------------------------------------------------------------------
                            First, let me say how sorry I am that you have been afflicted by this disorder. I know all too well how difficult it is to live with and to manage.

                            ....We are happy to have made progress to understand how the disease occurs, but there is much to learn. The lack of adequate response you describe to antibiotics, retinoids and vascular agents suggests that the pathway that drives your disease is not typical. I know [..] is a good clinical dermatologist that is likely to give you top notch care, so you should continue as you are. One general comment is that we know Rosacea can have many external and internal triggers, and it is often just a case of trial and error to find the right combination. Over the last few years many people have benefited from topical ivermectin which decreases Demodex. This could be worth a shot along with tetracyclines or other oral antibiotics. Since the topical ivermectin is very safe, there is nothing to lose.

                            Comment


                            • #89
                              I'm shocked. Thanks for sharing.

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                              • #90
                                A "PS" to what I said above, to clarify earlier posts (sorry if repetitive):

                                Tulane diagnosed me with dermatomyositis and aggressively treated me for it. I flew to see one of the best docs in the nation for dermatomyositis and connective tissue disease generally (who writes the textbook chapters on it) - who did a physical exam, his own bloodwork and had his own path look at the biopsy slides - and said it was very unlikely that I would have dermatomyositis. My case also eventually went through rheum derm society grand rounds - 3 doctors I've seen in person were present to discuss my case - and there was consensus that I did NOT have any CTD (dermato).

                                I think some people with rosacea, sun sensitivity, or facial erythromelalgia, etc have these biopsies that are like dermato / lupus and even very good doctors can make a misdiagnosis. I thought I was seeing the best doctor in the South at the time, making the best medical decisions I could, but I am still kicking myself why I didn't switch out sooner. At least I got out when I did.

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