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Chronic Urticaria

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Little_Flower
Little_Flower

Hi I hoping I might get some information on this condition as my GP knows very little on the subject.

I'm a 30 year old mother of 2, I live in Derry, N.Ireland. This is not my first time having chronic urticaria, 7 years ago i had it for 5 months and then it just went away. At the time i was told by dermatologists that it was more than likely the pollen, which i found very odd!!! I've never had hay fever or been allergic to any thing before in my life. I have now had chronic urticaria and angioedema for the last 11 months and it's showing no signs of improvement. I'm having very little luck with antihistamines and am put on steroids every 4/6 weeks, starting at 40mg and working down over a 3 week period. No allergy can be found, my bloods have all come back normal. My skin is covered there is not one piece of my body not affected and it is sever at all times day and night. I have had to go to A+E with sever swelling of the lips, eyes and mouth. I actually have hives on my eye balls!!!! My joints are now starting to swell and in the last week I have been unable to drive due to swelling of the back and neck. Stairs are becoming a real problem because my skin around my knee joints swell so bad i look like an elephant, the skin is very red, warm and painful. I desperately need help I'm finding this very difficult to cope with and family and friends are tired listening. Every time i go to my GP he shrugs and says \"it's awful but there's nothing i can do\". When i can appreciate that this is difficult for him to know what to do i feel like I've been put on the back burner. Dermatology in Derry refused to see me this time saying \" we don't deal with chronic urticaria\", with that my referral was sent back to my GP.

Any help or advise please.

6 likes, 133 replies

133 Replies

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  • wendy62425
    wendy62425 Little_Flower

    Posted

    hello

    I am hoping you could let us know how you are doing concerning your uticaria.  If you have found something that has worked could you please share it with us.  I look forward to hearing from you

    thank you

    wendy

  • Elkie_8340
    Elkie_8340 Little_Flower

    Posted

    Is this arthritis psoriasis I wonder?

    Also please try asking your GP for a 'scrip for Dermacool Plus 2.0% Menthol in aqueous cream.  It cools the skin well AND does not have anything steroidal in it.

    It does have Sodium Lauryl Sulphate which seems to be in most creams, washing up liquid etc., but you have to balance the good that it does with anything which MAY be detrimental.  Also try Fenofenadine hydrochloride (anti-histamine from GP only) for long term itchy skin.

  • ann09075
    ann09075 Little_Flower

    Posted

    Hi Little Flower,

    I have suffered from Chronic Urticaria for 15 years and was given antihistimes, steroids and eventually Xolair. However, Xolair stopped working for me which was very unusual.  I eventually sought out a rheumatologist/allergist specialist in Denver which determined my hives were autoimmune related.  I am now on methotrexate and just started plaquenil.  I highly recommend that you start with Xolair. This tends to help many people with chronic urticaria. However, if you see that Xolair does not work, go find a rheumatologist/allergist that has experience with chronic urticaria. My allergist for 15 years could never figure out what was wrong with me because I was never allergic to anything, I never had any negative blood results or any positive tests. Hives would come for months and then go. They were large and I would bleed from scratching, so I would have to eventually get on steroids.  They have been horrible and I am so glad I am off of them.  I wish you the best in your journey.  I hope you find a doctor near you that can help.  The doctor that helped me greatly was Dr. Tho Truong at National Jewish Hospital in Denver.  She referred me to Dr. Julie Patel in Houston's medical center, which I am now seeing.  Both of these doctors are rheumatologists/allergists.  Google them and you will see their specialty.  By the way, my mom has rheumatoid arthritis, which is also autoimmune.  Check your family history.  Autoimmune disease may be genetic, however they may not always be the same disease from one generation to another.  Good luck and please keep us posted!

  • gastricity
    gastricity Little_Flower

    Posted

    Hi Little Flower.

    I'm also 30 years of age and suffered with this condition for 8 years until seeing an allergy consultant at UCLH. He has recently put me on 180mg of fexofenadine x4 per day.

    For the first time in years I'm pain free and can finally have a shower without crying!

    I suffered for so long and it's such a relief to finally have a treatment plan that works! I would strongly recommend seeing an allergy consultant at UCLH RLHIM. I saw Dr S Berkovitz.

    Hope all works out for you and everyone else who has replied. smile good luck

    • wendy62425
      wendy62425 gastricity

      Posted

      Hello

      where is UCLH RLHIM? I am so happy for you  that the fexofenadine 4 x a day is working so well for you!  Do you take 2 in the am and 2 in pm or do you space them out during the day?

      thank you!

      Wendy

    • gastricity
      gastricity wendy62425

      Posted

      Hi Wendy

      Its the University College London Hospital Trust, appointments held at the Royal London Hospital for Integrated Medicine. 

      I take two in the morning and two in the evenings.

    • wendy62425
      wendy62425 gastricity

      Posted

      Hello

      Okay...that's why I was not familiar....I am in Virginia, USA.  It is so interesting to learn how other countries doctors treat CU. Enjoy your showers😄!! They are so nice when we are hive free!  I hope you will continue to do well and the hives will go away for good very soon.  I'll keep all posted after I'm totally off the prednisone.  I'm down to 10 mg...then will go to 5 then 2.5mg...nice and slow. Lord willing they won't come back!

      Have a good day!

      Wendy

  • Diotima
    Diotima Little_Flower

    Posted

    Hi there

    One more approach for the consideration of fellow sufferers.  It's a good idea to get your blood level of vitamin D checked.  If its very low, supplementation with vitamin D has been shown to lead to a diminution or disappearance of chronic hives (in 70% of cases, according to one scientific study).  Worth considering, I think....

    • wendy62425
      wendy62425 Diotima

      Posted

      Hello

      That is very interesting!  I know I am low on Vit D from a past blood check this year.  I have had to go on Prednisone again and am now slowly tapering off.......I have been taking Vit D3.......I pray that will help me with Gods help!

      Thank you for sharing!

      wendy

    • Diotima
      Diotima wendy62425

      Posted

      Good luck with it, Wendy!  You need substantial amounts of D3, or D2 by prescription.  But of course, you need to avoid taking too much.  Best to check with a specialist.  There were two studies--one with D3, which showed that supplementation led to a diminution of symptoms, and one with 50K of D2 for 8 weeks for those with very low D. That was the study that showed that the chronic hives (average duration--18 months) were cured in 70% of the participants with the low D.  Seems promising!  I'm hoping it will work for me (taking it now).
    • wendy62425
      wendy62425 Diotima

      Posted

      Hi!  Are you taking the D3 or D2 and how much?  I'll ask my doctor to retake my blood to check for Vitiman D as it's been awhile. In the meantime I'll continue to take the D3 vitamin.........This study is promising! And it does make sense !

      thank you Diotima!

      Wendy

    • Diotima
      Diotima wendy62425

      Posted

      I should have clarified that the D2 is 50,000 ONCE A WEEK for 8 weeks (more would be dangerous).  I'm also taking a multivitamin which has 1000 D3 per day plus a calcium/D combo which has 1000 D3 per day.  I will try to find a link to the studies and send them along.  D3 is now thought to be more effective, but the standard prescription over here is for D2.  Once I get my blood level up, which takes 2 months or so (sometimes longer), I'll just take the two supplements (2K per day max).  One of the studies was with D3 and the other with D2.  
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