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Spreading

Posted , 7 users are following.

tony09890
tony09890

My uticaria started spreading about a week ago, I now have it on my entire torso - front and back, back of legs and under arms, groin and neck.   If you have used a saline solution with some success don't think a dip in the ocean will have the same effect.   I went for a dip two days ago and the uticaria got very, very angry, I now resemble a cooked lobster and absolutely nothing relieves the itch.   I saw the Dermotologist yesterday and have been slotted in for a skin biopsy next Tuesday so the Dermotologist wouldn't give me anything for the itch/rash.   After the biopsy I have to wait another week for the findings and then hoepfully start some sort of treatment..    

0 likes, 24 replies

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  • marcus_Jackson
    marcus_Jackson tony09890

    Posted

    Tony - urticaria has nothing to do with dermatology!! It is completely autoimmune....go see an immunologist/allergist ASAP! They'll point you in the right direction. Urticaria is about layers underneath the skin becoming filled with histamine which releases leaked blood into the top layer of skin...Once your immune system has been affected then it's a process of repairing it and building it back up to full strength again.
  • wendy62425
    wendy62425 tony09890

    Posted

    Hi Tony

    I have had this breakout of Chronic Urticaria since June 2014.  This is the third time in my life that I have had this.  The other two times lasted about two years each and just went away with a decade or more in between with no hives...nice remission!!  I was able to control the hives during those two times with antihistamine and Singulair.  However this time the hives have been severe and unable to control them with antihistamine.  I have tried many medications including Xolair injections that works for many but unfortunately not for me. I was also on Dapsone which worked well but then gad to stop as it was affecting my red blood cells.  Everyone reacts differently to all meds.  I am currently on 200 mg of Cyclosporine and on a very slow taper of Prednisone and have had relief from the hives during these past weeks which has been a blessing!!  It is good that you are getting a skin biopsy...they are probably checking for Urticaria  Vasculitis. I too had a biopsy but at the time I was on cyclosporine so biopsy couldn't be accurate for checking for that. I was seeing an Allergist /immunologist doctor and now seeing a Rheumatologist.

    My heart goes out to you as you need relief from the suffering.......hang in there Tony.  Do cool showers help or cool oatmeal baths.  After the biopsy on Tuesday ask doctor for some relief medication....something that will help your suffering until they get the results from biopsy!! You shouldn't have to be suffering as you have been while waiting for results!

    Are you in the UK?  I am in the US.

    Take care Tony....hang in there!!

    Wendy

     

    • marcus_Jackson
      marcus_Jackson wendy62425

      Posted

      Wendy,

      Cyclosporine is a drug that reduces the body's ability to fight illness/disease (an immunosuppressant), leaving patients vulnerable to infection or other problems (including cancers such as lymphoma) - has your doctor actively told you to take this?

      Prednisolone is also really bad for you and should only be limited to a course of few days as it destroys your immune system as well.

      How has ur situation been recently?

      Marcus

    • wendy62425
      wendy62425 marcus_Jackson

      Posted

      Hello Marcus

      Yes.......I am aware of what both drugs do to the body and hope and pray I will be okay!!  They are slowly weening me off the prednisone first then hopefully will do the same with the cyclosporine...I pray for remission!!  I am so upset being on these meds......and so afraid of what they are doing to me!  The hives were so SEVERE nothing else was working.  I am now seeing a vasculitis specialist , rheumatologist.  She is the doctor that is slowly taking me off the prednisone.  I am on 9 mg this week then 8 next week. I pray for remission!

      Wendy

    • wendy62425
      wendy62425 marcus_Jackson

      Posted

      P.S.  I have been hive free for the past several weeks. The doctors are checking my blood every couple of weeks.

      Wendy

  • jillyjo
    jillyjo tony09890

    Posted

    Hi Tony

    So sorry to hear of your suffering.

    After doing more research at 2.00am this morning I ended up soaking in a vinegar bath for 30mins. I can't say it was instant relief but it may have helped some. I've also been rubbing lemons all over in the hope that I will get some relief and I do think it helps a little.

    If anyone else has any suggestions for relieving this terrible itching they would be gratefully received.

    Good luck Tony I hope you get some relief soon.

    Jill

  • tony09890
    tony09890

    Posted

    I use a strong saline solution as suggested by another member on this forum, it helps greatly with the itch but doesn't appear to stop it's spread.   I woke up this morning with weals on my forehead and cheeks. Night time I've been using animine and sorbolene; however it doesn't appear to be working anymore so I might try the saline solution.   I've been keeping a log of what's going on in terms of PMR and Uticara, dates, meds, other treatments, tapering, effects, etc,  hopefully it will be of help to the Rheumatologist I see at Xmas.   I'd love to see a immunologist/allergist but the three month wait is the killer, for now my GP and the Rheumatologist I see in a few weeks are my only hope. 
    • wendy62425
      wendy62425 tony09890

      Posted

      Your Rheumatologist appointment will be very good...they will be able to help you Tony!  Call and ask if they can out you on a cancellation list so you can get in sooner.  That is what I did and I was able to get a much sooner appointment.  Tell them you are suffering and would appreciate any help.

      Please keep us posted. 

      Wendy

    • jillyjo
      jillyjo tony09890

      Posted

      I have tried the saline solution but didn't find it helped with the itching, maybe I need to make it stronger.

      My doctor has finally referred me but to a dermatologist, well it's actually the specialist nurses who deal with it, I would have to wait 12-18 weeks to see a specialist. It's a six week wait for the nurses. I have asked if I could see a immunologist/allergist but I've been told today that the route they take for this condition is dermatology first! My doctor really doesn't seem to have a clue so how do you get help. I'm just constantly researching and researching to try and help myself.

  • tony09890
    tony09890

    Posted

    I have read that soaking in an epsom salts bath assists with the itch but haven't ried it yet.   I did try an oatmeal wash but that did nothing except perhaps make me taste good - perhaps.

    You'd think the itch wouldn't worry me as much as is does, I've suffered from itchy skin for all of my 64 years, scratching until I bleed is normal to me.   My folks told me that as a baby I was bandaged head to foot to stop me from hurting myself.

    • jillyjo
      jillyjo tony09890

      Posted

      I also tried an oatmeal bath but no luck with that one. I will try epsom salts. Thanks for the tip.
  • tony09890
    tony09890

    Posted

    I tried the epsom salts bath yesterday - didn't work for me.   Saw the Dermatologist this morning, he took a couple of biopsies and gave me a script for steroid cream, despite me telling him it makes it worse.   He also said that he didn't think any topical treatments would work for my brand of uticaria, treatment would have to come from the inside.   Another week to wait for results, I'd love some sleep, so dam tired!
    • wendy62425
      wendy62425 tony09890

      Posted

      My heart goes out to you Tony!!  I am surprised the doctor is not giving you something for the inside to help you get some relief like low dose of Prednisone until they get results of biopsy.  I know Prednisone is not good to be on long term...but short term for quality of life until the doctors figure out what your treatment will be is better than suffering and with little or no sleep.  I have had to be on it off and on for over a year now.....and has been such a relief......

      take good care....I hope you feel better soon...please keep us posted!

  • tony09890
    tony09890

    Posted

    I've been on prednisone for PMR for the last four months or so, I suspect the prednisone has something to do with the uticaria.  
    • tony09890
      tony09890 wendy62425

      Posted

      Polymyalgis Rheumatica (PMR) is an auto immune disease affecting muscles and joints and every bit as enjoyable as Uticaria, although if you have it in your arms, as I do, more so. There is an area devoted to it on this forum.   Uticaria and PMR, am I lucky or what?
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