Announcement

Collapse
No announcement yet.

Nose pain?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    Originally posted by Momof View Post
    I can relate to the pressure either side of the nose too, that dripping water feeling, as well as my residual edema and tingling. I have them all going on.
    Duloxetine helps me the best with the tingling, pressure and dripping. I just can?t clear the edema.
    Could you let me know if you find a solution to the edema? I am struggling with that currently!

    Comment


    • #32
      Originally posted by hotanddangerous View Post
      Could you let me know if you find a solution to the edema? I am struggling with that currently!
      The duloxetine seems to be stopping any new edema from forming ( my edema is from neurological inflammation) but I still have residual edema that I can?t clear. It is like my lymph system has become blocked.

      Comment


      • #33
        Originally posted by Momof View Post
        I can relate to the pressure either side of the nose too, that dripping water feeling, as well as my residual edema and tingling. I have them all going on.
        Duloxetine helps me the best with the tingling, pressure and dripping. I just can?t clear the edema.
        keep in touch, momof. Yes i'm on 120 duloxetine and it helps. Weirdly it helps with the flushing and swelling not just pain for me.

        I'm layering antibiotics now, with ketotifen. Trying minocycline and flagyl - getting liquid formulations compounded to prevent GI side effects (I'm surprised it makes a big difference). We might add sirolimus - systemic form of topical elidel. In the future I might retry very low dose accutane (10 mg / wk or less) but I only think this can be beneficial for me if I reduce inflammation via other means first. I think the dripping water feels "good"/"on the right track" in a way i think the solid stuff is trying to move out and nerves don't feel as "stuck".... my experience.

        I'm sorry you're experiencing this too.

        Have you tried various antibiotics?


        Yeah, i htink my lymph system has become overloaded. I think i have solid edema even in my neck - it's just not noticeable to others.
        Last edited by laser_cat; 1 May 2021, 01:04 AM.

        Comment


        • #34
          You?re taking 120 mg? Do you get side effects with that? I take 30mg. It seems to work as well as higher doses for me.
          I have tried doxycycline 40mg on several occasions but I get really bad palpitations from it so I have given up on it. At a loss what to do with the ?fixed? edema.


          Originally posted by laser_cat View Post
          keep in touch, momof. Yes i'm on 120 duloxetine and it helps. Weirdly it helps with the flushing and swelling not just pain for me.

          I'm layering antibiotics now, with ketotifen. Trying minocycline and flagyl - getting liquid formulations compounded to prevent GI side effects (I'm surprised it makes a big difference). We might add sirolimus - systemic form of topical elidel. In the future I might retry very low dose accutane (10 mg / wk or less) but I only think this can be beneficial for me if I reduce inflammation via other means first. I think the dripping water feels "good"/"on the right track" in a way i think the solid stuff is trying to move out and nerves don't feel as "stuck".... my experience.

          I'm sorry you're experiencing this too.

          Have you tried various antibiotics?


          Yeah, i htink my lymph system has become overloaded. I think i have solid edema even in my neck - it's just not noticeable to others.

          Comment


          • #35
            Originally posted by Momof View Post
            You?re taking 120 mg? Do you get side effects with that? I take 30mg. It seems to work as well as higher doses for me.
            I have tried doxycycline 40mg on several occasions but I get really bad palpitations from it so I have given up on it. At a loss what to do with the ?fixed? edema.
            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.

            Comment


            • #36
              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.
              That's great news- I just got prescribed accutane for edema. I have to wait a month to start it due to iPledge, but I'll post updates on the forum about my experience once I start it. How long did it take your swelling to go down after starting accutane?

              Comment


              • #37
                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.
                No I haven?t. That?s next on my list. Did you start on a different dose or has it always been 5mg 3 times a week? How long did it take for the edema to go? Is it completely gone? Does accutane increase flushing?

                Comment


                • #38
                  Originally posted by Momof View Post
                  You?re taking 120 mg? Do you get side effects with that? I take 30mg. It seems to work as well as higher doses for me.
                  I have tried doxycycline 40mg on several occasions but I get really bad palpitations from it so I have given up on it. At a loss what to do with the ?fixed? edema.
                  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!
                  Last edited by laser_cat; 10 May 2021, 04:30 PM.

                  Comment


                  • #39
                    Originally posted by Momof View Post
                    No I haven?t. That?s next on my list. Did you start on a different dose or has it always been 5mg 3 times a week? How long did it take for the edema to go? Is it completely gone? Does accutane increase flushing?
                    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.

                    Comment


                    • #40
                      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!
                      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.

                      Comment


                      • #41
                        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; 10 May 2021, 06:46 PM.

                        Comment


                        • #42
                          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!

                          Comment


                          • #43
                            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; 10 May 2021, 09:26 PM.

                            Comment


                            • #44
                              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

                              Comment


                              • #45
                                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?

                                Comment

                                Working...
                                X