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Thread: Nose pain?

  1. #41
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    Quote Originally Posted by laser_cat View Post

    It was suggested I try Cosentyx - clinical trial done at stanford. Doc told me it worked really well for some severe patients and not for others for pp rosacea but doc thinks it might help the redness in my face as I respond to antibiotics. Targets the Th1/Th17 pathway thought to be invovled in rosacea pathology.

    https://www.healio.com/news/dermatol...sacea-patients
    That's really interesting! Please keep us posted if you go ahead with the trial.

    It's encouraging to hear new drugs being made. Hopefully this can offer options for those of us that fit into 'difficult cases' (as my doc likes to call me lol )
    Last edited by owldog; 10th May 2021 at 06:46 PM.

  2. #42
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    Quote Originally Posted by Momof View Post
    Than you so much for all that info. I think I need to start very low and very slowly. Flushing was a problem for me but it?s ok now...I have taken Clonidine in the past but Duloxetine 30mg keeps the flushing and the pain pretty controlled. Would love to get rid of this edema as it is so uncomfortable and unsightly. Delighted to hear it helps with sensitivity!
    Sure good luck with it and keep us posted!

  3. #43
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    Quote Originally Posted by owldog View Post
    That's really interesting! Please keep us posted if you go ahead with the trial.

    It's encouraging to hear new drugs being made. Hopefully this can offer options for those of us that fit into 'difficult cases' (as my doc likes to call me lol )
    Yes I am also called a "difficult patient" (wait ... "difficult patient", "very assertive patient", or "difficult condition" ? ) Doc said it with a note of resentment in his voice, heh

    Last edited by laser_cat; 10th May 2021 at 09:26 PM.

  4. #44
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    Quote Originally Posted by owldog View Post
    Just wanted to chime in that yeh I would be careful with accutane. Especially if you're prone to flushing.

    It has made my redness worse. But conversely has helped so much with the pain, sensitivity and extreme itching that I was having, so on balance at the moment I'm okay with trading one for the other. The pain was by far the most debilitating symptom for me.

    I only had mild swelling on my cheekbones which has completely gone since being on accutane. I'm also on duloxetine 60mg a day which is really helping.

    I don't flush anymore now on my cheeks or ears. I do still on my nose sometimes after dinner but it clears up after 20 minutes and leaves no lasting redness.

    I also have managed to tolerate up to 15mg a week now of accutane. I take 5 mg three times a week. I couldn't tolerate this at the start (it increased flushing) but now it doesn't cause any increase in flushing or any pain. So worth bearing in mind that it is possible to slowly increase your dose. And I am a real severe flusher!

    With improvements in skin texture that seems to have plateaued. I think I need to be on higher doses to improve that (prob 5mg a day for a few weeks). Might build up to that carefully and see if I can tolerate it. My oily skin is still incredibly oily as well but not as bad as it was before.

    I also have this thing with my skin texture where I'll get goosebumps on the red areas of my cheeks when I'm cold and shivering. The skin suddenly looks really ravaged. Very weird and it's been there from the start of this disease. Accutane hasn't helped that at all. I'm guessing it's an issue with the underlying nerves. None of the docs can figure out what it is.

    So all in all it's okay for now until I find better treatments. Both my rheumatologist and dermatologist agree that it's probably mostly helping me due to its immuno-modulating properties. Weirdly my hay fever hasn't been as bad this year and I'm able to tolerate scented products. I would flush and my nose would run if I was near anything scented before accutane. I am also able to tolerate eating more foods without any increased flushing.

    I'm very aware that once I stop accutane all the symptoms will probably return so I will have to be on low dose for life and I'm not sure I'm entirely comfortable with that. It's already given me some muscle aches and pains side effects even on this very low dose so I'm not sure I want to be taking this for years.

    Plus I'm not sure if the redness on my face will ever improve or just get worse and worse. It was getting worse anyway before accutane so hard to know whether this was something that would've just happened or if the drug is exacerbating it.
    Thanks for the update. Yeah, i thought accutane helped with temp tolerance / pain for me as well. Was very pleasantly surprised. My mom later told me she thought it increased redness in the beginning and was unsure whether to tell me. But like you I could tell some positives so stuck with it. At the 3 week mark (all in reference to my first trial with accutane) my skin turned white. I never looked better. I was on 1000 mg flagyl which helps with redness / flushing by itself and also benadryl i think at the time.

    I'm sorry about your side effects I'm not thrilled with the side effects of antibiotics either. Arg! My doc said it's hard on anyone's body but usually people adjust. Some people are on high doses he said without any side effects but dry lips ("wait, they don't even flush??" heh).

    Sounds like you're making gains on QOL and happy to read it. Hope you find a sol'n too to your goosebumps issue.

    best

  5. #45
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    Quote Originally Posted by Johndlwdbm View Post
    Have your tried accutane for the edema. I am on 5mg three times a week and it's the only thing that has got rid of the swelling on my cheeks and nose.
    is/was your edema fixed? how long did it take to resolve if you don?t mind me asking?

  6. #46
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    Quote Originally Posted by laser_cat View Post
    I have tried accutane and it helps with the edema. If you flush you have to be super careful. I tried it too high of a dose due to an overzealous doctor I am kicking myself to listening to. And eventually it felt like it activated all the nerves in my face. I think flushing due to it "drying out the skin" is wrong - there is something else going on making it possible to flush/burn from it. Especially the cyclical / time of day burns.

    I want to try to get back on accutane but only with anti-inflammatories under my belt. I am on minocycline 100 mg and flaygl 1000 mg and these help the edema. I knew someone who was on flagyl 600 mg / day and it took a year for her solid edema to fade, but it did. These also help pain for me, but I say they help flushing the most for me. I'm on ketotifen now and I do not think it is strong enough to do anything on its own.

    It was suggested I try Cosentyx - clinical trial done at stanford. Doc told me it worked really well for some severe patients and not for others for pp rosacea but doc thinks it might help the redness in my face as I respond to antibiotics. Targets the Th1/Th17 pathway thought to be invovled in rosacea pathology.

    https://www.healio.com/news/dermatol...sacea-patients

    picture of the pathology of rosacea by steinhoff https://www.ncbi.nlm.nih.gov/pmc/art...ch-7-18074.pdf

    I would only probably take 2.5 mg twice a week of accutane to start. It doesn't work quite right for me but I possibly needed more time... not sure. Hard to explain. Look out for increased flushing while on it. If that happens, I would stop immediately. My nose got so small when I was on flagyl and accutane together after only 3 weeks, I couldn't believe it. I wonder if the double antibiotics would work just as well for edema (i would think low dose oracea would do nothing for severe cases, at least that is what one doc told me) - just might take longer than accutane? interesting to see what happens. I am intrigued but scared of accutane!

    Good luck! Sorry about the increased heart rate with oracea!

    low libido with cymbalta. I dont mind. I take a 90 mg AM and 30 mg early afternoon.

    Really sorry about your fixed edema. I'm right there with you. Mine improved some over the last half yr but I need more improvement and I sympathize. I do think if you can get it right, accutane is best for it. but big if. Your skin texture will improve though too if you can!
    How have you got the fixed edema to improve? struggling with this currently and need hope!
    Last edited by hotanddangerous; 4th June 2021 at 12:32 AM.

  7. #47
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    Quote Originally Posted by hotanddangerous View Post
    How have you got the fixed edema to improve? struggling with this currently and need hope!
    2 full dose rosacea abx. It isn't gone but much better than it was.

    To move lymph - it's massage (you can find a professional lymph massage at a hospital perhaps), accutane (low dose if you also flush), antibiotics, and full face fitted masks (physical therapy clinic at hospitals) overnight (which might be impossible with rosacea flushing). Sometimes accutane combined with antihistamines.I think massage for the bridge of the nose area could be interesting.

    A post here about protopic being "magical" for swelling if you search. I couldn't tolerate it (too much burning).
    My doc is looking into other topical anti-inflammatories (since Ican't tolerate protopic or elidel) coming out for dermatitis like ruxolitinib and trying to wean me down on the abx and eventually (re)start low dose accutane (no more than 20 mg / wk since I flush). I think low dose, slow titration accutane is most powerful but only if you can find a dose that doesn't trigger flushing and more inflammation.

    Another doc suggested systemic elidel since I can't tolerate the topical. The systemic (sirolimus) an immunosuppressant with some side effects but sometimes used for lymph issues by the lymph dept at this doc's hospital.

    Another post saying methotrexate helping his swelling if you search. (another immunosuppressant, but gentler than sirolimus ...).

    I think it would be best always to go to a reputable top doctor and have them evaluate your skin. And hopefully have a conversation about what you want and what they're willing to try and what they recommend. I've had derms see things in my skin that I couldnt see, eg. A doc said i had some dermatitis that needs to be treated before we start talking about accutane again, eg.

    Good luck. hope you find those threads, they are worth reading

  8. #48
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    Quote Originally Posted by laser_cat View Post
    2 full dose rosacea abx. It isn't gone but much better than it was.

    To move lymph - it's massage (you can find a professional lymph massage at a hospital perhaps), accutane (low dose if you also flush), antibiotics, and full face fitted masks (physical therapy clinic at hospitals) overnight (which might be impossible with rosacea flushing). Sometimes accutane combined with antihistamines.I think massage for the bridge of the nose area could be interesting.

    A post here about protopic being "magical" for swelling if you search. I couldn't tolerate it (too much burning).
    My doc is looking into other topical anti-inflammatories (since Ican't tolerate protopic or elidel) coming out for dermatitis like ruxolitinib and trying to wean me down on the abx and eventually (re)start low dose accutane (no more than 20 mg / wk since I flush). I think low dose, slow titration accutane is most powerful but only if you can find a dose that doesn't trigger flushing and more inflammation.

    Another doc suggested systemic elidel since I can't tolerate the topical. The systemic (sirolimus) an immunosuppressant with some side effects but sometimes used for lymph issues by the lymph dept at this doc's hospital.

    Another post saying methotrexate helping his swelling if you search. (another immunosuppressant, but gentler than sirolimus ...).

    I think it would be best always to go to a reputable top doctor and have them evaluate your skin. And hopefully have a conversation about what you want and what they're willing to try and what they recommend. I've had derms see things in my skin that I couldnt see, eg. A doc said i had some dermatitis that needs to be treated before we start talking about accutane again, eg.

    Good luck. hope you find those threads, they are worth reading
    thank you. which antibiotics are they and how long have you been on them for?

  9. #49
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    Quote Originally Posted by hotanddangerous View Post
    thank you. which antibiotics are they and how long have you been on them for?
    Honestly, I'm not sure if my specific abx will be helpful for anyone or just a wild goose chase bc we all seem to respond differently, including to abx. i will say you can't take tetracyclines (doxy, minocycline) with accutane due to increased intracranial pressure possibility (something like that).

    The main rosacea abx are: doxy 100 mg BID, azithromycin (not sure dose, some docs go higher than others), minocycline 50 mg BID or 100 mg BID, flagyl 500 mg BID. Sometimes dapsone.

    I'm on flagyl now which helped and added minocycline which helped more. One doc's plan was to titrate high on azithromycin and try low dose accutane which honestly made the most sense to me but he moved away (you can take az. and accutane together). Now my NYU doc wants me to try carefully compounded anti-inflammatory topicals (high dose metro compounded, new dermatitis topicals coming out like elidel), reduce abx, and add in low dose accutane.

    A previous doc said he got good results with a solid edema patient with professional lymph massage but I can't tolerate that on my sensitive skin. Seems like an easy thing to do for most people though.

  10. #50
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    Quote Originally Posted by laser_cat View Post
    Honestly, I'm not sure if my specific abx will be helpful for anyone or just a wild goose chase bc we all seem to respond differently, including to abx. i will say you can't take tetracyclines (doxy, minocycline) with accutane due to increased intracranial pressure possibility (something like that).

    The main rosacea abx are: doxy 100 mg BID, azithromycin (not sure dose, some docs go higher than others), minocycline 50 mg BID or 100 mg BID, flagyl 500 mg BID. Sometimes dapsone.

    I'm on flagyl now which helped and added minocycline which helped more (each noticable after 2 months). One doc's plan was to titrate high on azithromycin and try low dose accutane which honestly made the most sense to me but he moved away (you can take az. and accutane together). Now my NYU doc wants me to try carefully compounded anti-inflammatory topicals (high dose metro compounded, new dermatitis topicals coming out similar to elidel that are better tolerated), reduce abx, and add in low dose accutane.

    A previous doc said he got good results with a solid edema patient with professional lymph massage but I can't tolerate that on my sensitive skin. Seems like an easy thing to do for most people though.
    edit - I would definitely get confirmation from a good derm on your diagnosis though. In hindsight I sort of regret stacking antibiotics (esp. one of them incompatible with accutane) as I have different opinions from docs on whether double abx are sustainable for life. UCSF and Stanford each said yes, my NYU doc said no since over time he thinks it will change the microbiome including skin, and is reaching for other anti-inflammatories. The difference in swelling is significant, but it will come back as soon as I stop and I still deal with mildly indurated skin likely due to inflammation that is still there.

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