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Prurigo Nodularis

Posted , 4 users are following.

jinny23
jinny23

Hi

I have had this skin condition for what seems like forever and, not only am I making no progress, I am having no support because the NHS appointment system has taken so long to find me an appointment with a consultant!

My skin is so sore, nothing I do alleviates my symptoms and I feel overwhelmed by the whole experience.

Is there really no way to move forward with this due to no etiology??

Please help,

Jinny

0 likes, 3 replies

3 Replies

  • thomas99726
    thomas99726 jinny23

    Posted

    Nice of you to have a name for your problem.I suddenly develped an itch round my waist belt area.The skin was raging hot and weeping, but horros when I exposed the site my skin was clear. So what I had was under the skin and not affecting my skin. My Doctor said that I was in for the long haul to clear this up. He gave me Hydrocortisone cream on repeat subscription. After 6 years applying the same my itch has gone to me both shins, both fore arms, both shoulders and now down my back. I have added E45 cream to these areas for a year- no change then I added moisturising creams. No change. Now I am using Aloe Vera Gel and my symtpoms are much less aggresive. Aloe Vera is not on the NHS. It would appear to me that Doctors on the NHS must abide with only NHS approved medicenes thus ignoring any new medical improvements. I thought thaat I would have given a name for my ailment and the knowledgement of effectiveness of their treatment offerred. No swabs taken just the 6 minutes consultation. 6 minutes consultation, they must be marvels at their work. Anyway, I am continuing to apply the Aloe Vera Gel as it is working. Time will tell if I have cured myself of this awful itch.

    • jinny23
      jinny23 thomas99726

      Posted

      Hi Thomas

      I thought I had replied to you but it seems that I have not !! ..very odd !

      I have had this awful skin condition for some time now and I feel I am on my own dealing with it. Either the NHS doctors and consultants you deal with are not straight with you or your notes get lost or sent back and no one really gets to the bottom of things so you are left high and dry and you end up self - medicating, researching online and repetitively looking for solutions that you know are only short term.

      I have been researching and experimenting with so many things to try to deal with my skin condition.

      My doctor doesn't seem experienced enough to be able to advise me so I tend to make suggestions to him in the hope that he will support my decisions.

      I have tried the usual treatments... hydrocortisone cream, plasters, bandages, E45 cream, Certraben, Ice packs, gloves.... and I am now trying Aveeno moisturising cream which is Oatmeal based and considering your current plan of action...Aloe Vera... something that is renowned for its healing properties. I always have a plant in the house and use it to heal sore cuts I get from time to time.

      I occasionally take a very strong anti histamine tablet when my itching becomes overwhelming but it makes me drowsy if I mismanage the timing of taking it. At around 7-9 pm is a good time but at bedtime it knocks me out the next day!!

      I cry a lot, not to the point of becoming distressed or depressed....but because I am so frustrated.

      The condition rules my life and the scars cause low self esteem; I love swimming and have swam all my life. Having just begun to deal with and overcome major CFS/ME I so want to go back to swimming but my body is covered in scars.; not sure I will ever get rid of them!!

      Anyway, enough of me... I hope you improve all the time and find peace.

      If I can help , please ask.

      I am here for you

      Best wishes

      Jinny

  • Shopaholic69
    Shopaholic69 jinny23

    Posted

    Hi,

    I have had prurigo nodularis for over 15 years now.

    I have been through every drug available, including methotrexate, Thalomid, cyclosporine all kinds of antibiotics , to name a few. Including injecting myself with enbrel.

    I have tried light therapy, accupuncture and herbal medicine .

    None of which helped at all.

    I can say I am 95% free of nodules and sores on my body at this time .

    What worked is a compound of triamcinolone cream and coal tar solution. The doctor had me slather it from neck to feet every night and put on a sweatshirt to sleep. I did this for about a year even through the summer.

    I also am on prednisone, but at a very low maintenence dose at this time (2.5mg every other day).

    This rx compound saved me and gave me my sanity back.

    I hope it helps someone else with this problem .

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