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Finally been referred to a dermatologist...what should I expect?

Posted , 11 users are following.

tina053642
tina053642

Hi everyone, I've suffered with urticaria for almost two years now.  It's made worse by heat, cold, sunlight, pressure, stress and my feeble immune system.  

I've had the skin prick tests, and am allergic to no foodstuffs, but am allergic to house dust, tree pollen, grass pollen and mould spores.  

I was given fexofenadine and montelukast by the allergist I saw.  They made no difference at all, except to make the rash even worse than it was before.

There is hardly a day goes by that I am not covered in this unsightly and debilitating rash.  It itches and is burning hot at times.  Occasionally it blisters and weeps.  I get swelling, but not in the usual places everyone mentions (i.e. lips and eyes).  My hands occasionally itch and my entire hand will swell to the extent that I can't bend my fingers.

I had some blood tests for autoimmune disease over a year ago, after which I was told they were all normal.  At that time, the doctor i saw refused to refer me to a dermatologist, instead she prescribed me three bottles of crotamiton lotion per month to try to control the itching, told me to stay indoors, wear factor 50 sunlotion and keep my body covered up all the time - very helpful!

Anyway I now have a more caring doctor, and I have an appointment to see a dermatologist at my local hospital on 23rd February.  I'm just wondering what to take along which might help them to help me.  On the day I'm sure my rash will behave itself and will be extremely mild.  I have taken photographs of it when it is particularly bad and will be able to show them.

Any advice would be most welcomed.

Thank you for reading.

Tina

0 likes, 32 replies

32 Replies

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  • mrsmop
    mrsmop tina053642

    Posted

    Poor Tina,  I took photos too, they liked those!

    I started to itch at the end of the 90s and saw all sorts of doctors and discovered that I was allergic to various chemicals in 2003, that Dermatologist gave me a 'very potent' steroid cream, which helped tremendously.

    Everything went mad again in about 2009 [the point is coming!] and was given all sorts of diagnoses, all wrong, until I mentioned my itchy blisters to a locum Pharmacist, who normally worked in a hospital.  He told me that I had Bullous Pemphigoid.  My GP finally agreed to refer me to a Dermatologist but even then, it wasn't quick.  I finally saw one in 2012, well, I actually saw 3 different Consultants, the first discharged me with lotions and potions, the 2nd started me on oral steroids..........bliss!  I finally stopped itching.  The 3rd actually cares about me and has given me a more up to date diagnosis.  [Mucous Membrane Pemphigoid]

    Be wary of being given lotions and potions and sent on your way without a proper explanation.  I know their lists are long but make sure that they explain what they think is wrong and if they do send you off with lotions and potions, make sure you either have a follow up appt., or an SOS number.  [That you can ring to make an appt to see someone]

    Hope all goes well and let us know what happens.

     

  • desmond01416
    desmond01416 tina053642

    Posted

    They might help, but I think a dermatologist won't be able to help that much because the rash and itching skin are usually just symptoms where the cause is usually the immune system. So what you want is an immunologist. BUT, unless you get lucky immunologists are pretty limited in what they know about this stuff. Your allergies are the same as mine, one thing to bear in mind is that grass and tree pollen allergies can cause cross reactions to certain foods with similar proteins. I think even milk can cause grass allergic people to react allergically.
  • aj13692
    aj13692 tina053642

    Posted

    Hi Tina, sorry for your pain, I too am a sufferer.  I was lucky enough to have private health care and saw a dermatologist, however the rash was calm at the time and I was devastated. Eventually he got to see the full effect and prescribed what eventually cleared it up.

    fexofenadine 180mg twice a day and also 150mg of ranitidine hydrochloride twice a day which was a kind of bizarre drug to take as it is directly related to stomach acids and nothing in the notes to say it's related to urticaria but the dermatologist said he knew it helps! It did!  I also took 25mg of the old fashioned hydroxyzine at night.  I'm convinced the hydroxyzine played a huge part, it also helped me sleep through the itching

    • desmond01416
      desmond01416 aj13692

      Posted

      Hi AJ, ranitidine can help if histamine because there is more than one histamine pathway. Most antihistamines for allergies work with the H1 channel, but ranitidine works on the H2 pathway, which I think is more related to the stomach nervous system.

      And you make a good point, bringing some good clear photos is a good idea with a dermatologist because you never know how you'll be on the day.

      If your ever caught off guard by this and have trouble sleeping with itching, I found Phenergan at a higher dose (an old school over the counter anti-histamine) almost a good as 25mg Hydroxyzine. But Doxepin is 4 or 5x better again that Hydroxyzine. It puts you to sleep, but it also dulls the sensation / irritation of itch AND somehow makes you not bothered by it. Problem is, you'll feel like a zombie in the morning and punch drunk until well after lunch, especially at the beginning. I think that if they approv the 7-10mg doses of Doxepin for insomnia, they'll start to use that more for Urticaria and things like that. It's super effective and the side effects are just about manageable at that dose. Splitting a 25mg capsule works but is not very precise.

    • thoris35
      thoris35 aj13692

      Posted

      do you continue to take these medicines daily. Or did you wean off, after things were under control?
    • aj13692
      aj13692 desmond01416

      Posted

      Hi Des thanks that is very clear, I will bare this in mind
  • tina053642
    tina053642

    Posted

    Thanks everyone for your replies.  I have a number of questions I need to ask them, as I have some very strange symptoms, and I don't know whether everything is linked or not.  

    My rash seems to flare up within 48 hours of my whole body aching, particularly my hips and knees and, most recently, my ribs.

    I get tingling and sometimes pain in my face.  The pain is usually down one side of my face, but the tingling is always at the end and left hand side of my nose.

    I had blood tests over a year ago to see if there were any markers to identify any inflammatory disorders, to be told that there were none.  I found a website/magazine based in New Zealand called the Allergist, which seemed to claim that inflammatory disorders can show up in blood tests any time up to 10 years before the inflammatory disorder takes hold.  Does anyone have any thoughts or information on this?

    It's very interesting reading everyones experiences and treatments.  Thanks for your support and for sharing.

  • mel.c
    mel.c tina053642

    Posted

    Hi guys.

    I to suffer from chronic urticaria and angioedema I have been with a dermatologist for two years now seeing her every 3 months trying to find the right tables for me I have been on steroids weeks on end over the years I don't no what triggers it but I find it gets worse with many things like stress and having my period exercise sometimes it gets so bad that I can't walk even my hands swell lips eyes its taken over my life wearing jeans bra's and high heels is a painful thing i can't even pluck Thread or wax my eyebrows because they will swell where I can't see its been hell the last 10 years living with this and I have even put on 4 and a half stone From not exercises over the pain hours later or even the next day and i have 4 kids to mind to thank god for my husband he helps a lots I wish it would just go its so Exhausting have hives in the Pam of your hand and on the end of your feet..

  • stephanie1968
    stephanie1968 tina053642

    Posted

    Hi I've had CSU and Angiodema since October 2015 just after I'd been diagnosed with hypothyroidism the Drs said it wasn't related.

    I think it is .

    Hypothyroidism is autoimmune by the way for me.

    Hives mainly on the front of trunk face arms knees.

    Angiodema backside back legs feet.

    Occasionally my hands blow up and find it hard to bend them without massaging them to death.

    Despite meds still there

    Dapsone 100 mg

    Fexofenadine 720 mg 4x180

    Ranitidine 600 mg. 2x300

    Levoceterizine as many as it takes

    Montelukast at night

    Levothyroxine too .....

    I feel like I'm at the end of my tether

    Regular blood screening to make sure kidneys are OK on the dapsone but my reticulocytes are on the up so will possibly have to be stopped .

    Xoliar next step ... Luckily I have the immunology appt next week and hopefully this will ease things as I'm so tired at the moment with everything.

    Hope you find some relief in your predicament too.

    • justine_23155
      justine_23155 stephanie1968

      Posted

      Sweetheart. I'm in the same place! How do we move forward ? I keep being told over and over that my condition is rare and there's no cure! I have learnt from this site that it's not rare. I'm eating organically, I don't leave the house- I've developed a fear of germs ( I know tragic but after 3 years of hurting you go into self preservation) it's ruining my life and I feel fobbed off. Is there any cure out there ?

  • justine_23155
    justine_23155 tina053642

    Posted

    A dermatologist is not the way forward- they treat the symptoms and not the cause. You need to see an immunologist. I've had the same condition as you for 3 years. I spent 2 years with s dermatologist who did nothing. My immunologist understands and i feel like he understands. The problem is that there's no immediate cure. It's frustrating. I'm on the equivalent of 96 piriton tablets a day and it's barely keeping my symptoms at bay. The most depressing thing is that I feel like a Guinea pig. But I see light at the end of the tunnel and you have to accept you have an autoimmune issue so a dermatologist won't help

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