Chronic Spontaneous Urticaria and desperate

Posted , 5 users are following.

Hi, I'm new here and desperate. My CU started at the end of January, I was made redundant from my job, went down with a mild cold and a few days later the urticaria started. A few weeks later my beloved cat was put to sleep and then a month or so later my elderly father fell down stairs and was hospitalised, so emotional stress has been high.

My current medication is 10mg Cetirizine and 150mg Rantidine four times a day and Montelukast at night only. Initially it responded and I would have a couple of free days a week but over the last 3 weeks it's getting worse again to the point I thought I might go mad with the itching last night. I tried a topical steroid cream which was useless so I'm persevering with calamine cream. I'm seeing a dermatologist but he's reluctant to refer me for the Xolair injections because my whole body isn't covered. Plus there's a 6 month waiting list because he'd have to refer me to the urticaria clinic in London, I live in north Hampshire and can't believe no one can do these locally! Dapsone isn't an option for me because my first blood test showed my white blood cell count and infection markers were up and it's too risky for me to take it. My second set of blood tests were normal. At the moment it's all over my legs, I can't bear anything touching my legs but have a new job in a very corporate environment so have to wear trousers or tights.

I'm so desperate I've just booked to see an acupuncturist, I just don't know what else to do. My next dermatology appointment isn't until the end of June, he said an immunologist won't do anything more than he is doing.

I have tried Fexofenadine but it wasn't as effective as the Cetirizine, I can't tolerate steroids either as they have me doubled over with the worst indigestion I've ever had.

Does anyone have any other suggestions I could ask for I feel like I'm running out of options.

0 likes, 8 replies

Report / Delete

8 Replies

  • Posted

    Hi

    I found fexafenadine took a while to work but I had it along with Benadryl (acrivastine) and also initially needed ranitidine which I don't now. I started with this 7 years ago and am still taking fexafenadine and at least one Benadryl a day as I find if I stop the fex I start to get hives again albeit a lot milder than before.

    How long did you try the fexafenadine for?

    Also reduction in stress helped me. You can't help circumstances but you can learn methods of coping.

    Take care

    Caroline

    Report / Delete Reply
  • Posted

    I'm sorry you're having such a rough time at the moment.  Stress exacerbates this, as you are probably aware.

    When I started to itch,  [I now have a diagnosis] I tried everything that you have tried and nothing helped.  I then saw a GP I had never seen before and she prescribed Hydroxyzine, she referred to it as an 'old fashioned' sedating antihistamine.  I took 25mg at night and found that if I didn't take it at 7pm,  I didn't want to wake up the following morning!  That helped me to sleep through the itching.  I also had a 'very potent' steroid cream - Dermovate, which does stop the itching  But, it really only stopped completely, when I went onto oral steroids.

    When you took the steroids orally, did you eat a meal first, or at least a sandwich?  You have to eat first, otherwise the steroids damage the lining of the stomach, hence the indigestion.

    I am now taking steroid sparing drugs but have been itching again lately, my GP gave me a Depo Medrone 80mg  injection.  It is supposed to last for 2 weeks.

    Perhaps you could have an injection if you can't tolerate the oral route.

    Try the Hydroxyzine until you see your Dermatologist again and ask for Dermovate or, the next strength down, 'potent' Betamethasone Valerate.  OTC products are of no use.

    And, incidentally, you haven't changed your washing powder or anything else [shampoo etc] have you?  That can trigger urticaria.

    Is a uniform provided for you at work, or can you buy your own loose fitting cotton trousers, or could you get something appropriate that is similar to the uniform?

    Don't despair!

     

    Report / Delete Reply
    • Posted

      I agree I found dermovate really good but not to use long term. Steroids definitely with food and best all in he morning so it doesn't affect your sleep. I got a racing feeling but it did subside after I got used to it. I have only ever had short courses of steroids though.

      Definitely a good thing to focus on the stress relief.

      Hope you get some relief soon.

      Report / Delete Reply
  • Posted

    Thank you for your replies, I tried the steroids at all different times of the day and with and without food but nothing made a difference, it would have me doubled over it was awful. I tried the Fexofenadine for about 2 months while I was still under my GP, I use it every year as I also get allergic asthma and it works well for that. I'm waiting for the out of hours GP to call me to see if they can suggest anything. I actually took Piriton last night as I was desperate at bed time and I did sleep ok but it does zonk me out and I can't take it during the week as I can't get going in the morning!  Loose Colton trousers aren't smart enough for the office unfortunately.
    Report / Delete Reply
  • Posted

    Just a little update, I saw the out of hours GP and have 4 days of steroids but she's also given me Omaprazole which I need to take an hour before the Prednisalone and eat during this time too. I did have slight indigestion but nothing like before so hopefully that will do the trick. I've got to go back and see my GP once I've finished the tablets. The GP said she'd never seen anything like me legs yesterday. It's so much better this morning, no itching at all and raised hives have gone down leaving red marks and bruises which I can cope with. I'm off to the shops later to see if I can find looser works clothes made of cotton. I hate taking steroids, I battle with my weight enough to as it is sad

     

    Report / Delete Reply
    • Posted

      Well, that sounds positive and you will feel so much better without the itching.

      As for the steroids and weight, they make you hungry, so you eat, so try to find something that you can eat that won't add weight.  And, you might not be on steroids long enough to put on weight, or a high enough dose.

      I hope you can find something suitable for work.  Good luck.

       

      Report / Delete Reply
  • Posted

    Hello JCH187

    I have CU since before Christmas. Tried various antihistamines - fexofenadine was effective last time I had CU 8 years ago, but does not seem to do much now. In fact, nothing really does a lot.  Also taking 10mg cetirizine, and 50mg phenergan at night. (Actually, am cutting down to 25mg as  - although it doesn't do much at the time - I can't wake up next morning). The best thing I have found for itching is Emu Oil Plus, from Emu Oil Well.  Strong smelling, but helps with the burning/itching especially at night.

    It won't cure your urticaria, but it will make it easier to bear.

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up