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I have had prurigo nodularis for 11 years. I have had ti...

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Guest
Guest

I have had prurigo nodularis for 11 years. I have had times when it has gone completely [when i was in intensive care for 5 weeks sedated so i had no need to scratch!] but as soon as i came home it started to return. Then 2 years ago i was back in hospital with an attack of crohns, PN just as bad, with all the drugs in me. It started to go again, but you guessed it, it came back but this time much worse.

Have tried all sorts of treatment: light, creams and thalidomide, but gave up on it all. But i am now thinking of going back to hospital to give it one last try, maybe this time it might work!

[i:5edb71396e]This message was automatically imported from the original Patient Experience[/i:5edb71396e]

2 likes, 76 replies

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  • Guest
    Guest

    Posted

    Please do not give up! I have had \"prurigo nodularis\" for 4 years and felt exactly the same. My nest step is to go to a infectious disease doctor. I DO NOT believe this is a skin disease. I believe that the nodules are a result of an \"internal disease\". Have you looked up Morgellons disease to see if it matches your symptoms???

    I also am drinking Mona Vie for 2 months now. It has a very high level of antioxidents and has improved my condition both phsically and mentally.

    • sheri75753
      sheri75753 Guest

      Posted

      If you have been messing around with this PN diagnosis for more than a year, what you have is probably T-cell disease or cutaneous lupus!  See an Immunologist for some real relief!  

       

  • cassandra
    cassandra

    Edited

    I have just been diagnosed with this skin problem after being told and treated for many skin problems over nearly 3 years the drs are going to try uv light but because i took so long to find out what it is i have scars all over me have you tried this treatment and will it help?Is there anything to lighten the scars?
    • StaceyMHeward
      StaceyMHeward cassandra

      Posted

      Hi Cassandra,

      I've also after many years just been diagnosed with prurigo & start UV light treatment tomorrow x3 each week for 6 weeks, which is difficult for me with my jobs.

      I've tried everything like bio oil etc but my dermatologist also gave me an ointment called Synalar which I've inly had for a month at the most & already myself & my husband can see a difference, using it every day after a shower it's not faded them completely but has definitely faded them to what it looked like before.

    • allison44359
      allison44359 cassandra

      Edited

      Hi Cassandra!

        I have had prurigo nodularis for 8 years. I just found out what it is this week because the Dermatologist wrote what it was in the file, but did not tell me! 

        I am into natural cures. I am using cayenne pepper in olive oil. It is doing a great job of cleaning my face up. It gets so bad sometimes... Cayenne kills bacterial infections and fixes your skin. The redness goes away. Be careful applying it near the eyes. I have gotten it into my eye three times and it hurts a lot, but the pain goes away. Cayenne will not damage your cells--just clean them.

         You can take aloe gel and it will also sooth your skin, but without the heat. Leaving it on overnight is especially helpful!

       

    • Owllisa
      Owllisa cassandra

      Posted

      I tried this for a 6 months at 100 a visit. No results. Ask about thalidomide. 
  • Guest
    Guest

    Posted

    Cassandra - if you're having light treatment, hopefully that will help to stop, or lessen, the itching and improve the 'feel' of your skin. In my case, it did so, but I'm sorry to say that once I stopped having sessions, the itching did return. Maybe you'll be more fortunate. Depending on your skin type (and possibly the type of UV - A or B) you may get a bit of a tan, in which case your skin will look better although the scars themselves will still be there. For the actual scarring, the best thing I have found is injections of Adcortyl directly into the nodules. May take two or more injections for really bad ones, but the bumps shrink and become bluish, and either flat or slightly indented. Certainly preferable to big lumps. If, and this is a big 'if', you can stop the scatching, they stay that way. If you do scratch again, they come back, but you can always have the injections done again. I'm fortunate in that I have a sympathetic GP who is prepared to do them (double appointment slot) but I've got so many at the moment I'm back at the hospital for more. The other thing that claims good results for scarring is Bio-oil. Give it a go, as it is also good for dry skin, which tends to itch (although the itching you get from this condition is obviously more than just a response to dry skin). On the subject of itching, I've tried lidocaine, to anaesthetise the area, but it hasn't really helped. Has anyone had any success with capsaicin? I have asked at the hospital, but, as usual, if it doesn't contain steroids, they are sceptical.

    Good luck!

    • allison44359
      allison44359 Guest

      Posted

      Hi Guest!

      Capsaicin in just cayenne pepper. You can put cayenne pepper in water and sip it during the day. I made my own extract by putting it in vodka for 6 weeks. I put a few drops in water--as much as I can stand. It will help clean your veins and improve your circulation, which should promote healing. Sometimes I put the extract on the nodule because the alcohol should kill any infection.

      Drinking halthi/curcumin in milk also decreases swelling as this is an auto-immune dis-ease.

    • sheri75753
      sheri75753 Guest

      Posted

      Get in with an Immunologist!  This is just a name dermatologists give to something they don't know how to treat when nothing works!  This is an IMMUNE SYSTEM problem!  I've had this for over 2 years now.  My family doctor referred me to an allergist/immunologist.  Within two weeks, he had the information he needed from blood work.  He is treating me right now with Methotrexate, Amytrytolyn, and Folic Acid.  You wouldn't believe how much difference it has already made for me!  Repeat!  This is an immune system problem where your immune system starts attacking your body!  SEE AN IMMUNOLOGIST!!!

    • sweetbim
      sweetbim sheri75753

      Posted

      Can you recommend  a good immunologist? I've been suffering with so called PN for 4years

    • shikha97508
      shikha97508 sheri75753

      Posted

      Hi sheri

      Can you please tell the name of immunologist u saw..which cit

    • Jinlover
      Jinlover sheri75753

      Posted

      Have u run test on your liver functions and kidneys after taking Methotrexate? 

      It's an immunosuppressant... does it have side effects on you so far? 

      How long have you been taking it for? 

    • sheri75753
      sheri75753 sweetbim

      Posted

      Not sure where you are located.  The Immunologist I go to is Keith Paull, MD, Paull Allergy and Asthma Clinic, Bryan/College Station, Texas
    • sheri75753
      sheri75753 Jinlover

      Posted

      I am tested regularly for liver and kidney functions.  About every 3 months.  I started with a low-dose of the methotrexate:  10  2.5 mg tablets once a week, 3 Folic Acid  1 mg tablets every day, Hydroxychloroquine  200 mg twice a day, Amitriptyln 2 10 mg tablets at night.  However, I had to drop back to one of the Amitriptyln tablets because it was drying me out too much.  Dr. has me on the one tablet plus 180 mg of Allegra twice a day.  

      Yes, methotrexate is an immno-suppressant.  The purpose is to suppress the immune system so that the t-cells aren't attacking your healthy skin!  

      Last test showed I'm anemic on white cells and red cells.  He says this is all normal and what he would expect to be seeing.  I have an appointment on Friday and will try to pin him down on this anemia as I'm not comfortable knowing the abnormal numbers!  

    • sheri75753
      sheri75753 shikha97508

      Posted

      Dr. Keith Paull, Paull Asthma and Allergy Clinic, Bryan/College Station, Texas
    • sheri75753
      sheri75753 Jinlover

      Posted

      Sorry, I didn't see your last question. I've been doing to Dr. Paull for a little over a year.  What he is trying to do is get me to a point where the outbreaks are not so severe and don't last long.  This is something I'll have to deal with the rest of my life, probably, as with any autoimmune disease.  

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