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
Well hopefully you have better luck than I did when I saw a dermatologist after a 4 month wait!
I too suffer with hives daily ... I have done now for 7 months ... worse in the morning with hands and wrists covered in red itchy spots. If I walk my legs get covered ... anything tight, hives appear! Seems to be no rhyme or reason. What I eat doesn't seem to make a difference!
I took to the dermatologist a month notes on what times they arrived, what I was doing / eating ... photos etc ... but he didn't even look at them. Like you Fenofexadine made my rash even worse ... each time I took one, within an hour I would be covered!! I told the dermatologist this yet all he did was prescribe me another 3 month course of Fenofexadine and said come back in 3 months.
Took a table, wham, covered! Stopped taking them. Saw my doctor who just said that people don't usually react to anti-histimine. Nothing we can do, wait for your 3 month follow up with the dermatologist. GREAT! To top it all off, it wasn't even the dermatologist that I saw, the Doctor told me it was a junior and when I go back at the end of March to insist in seeing the Consultant.
So my advice to you would be call before your appointment and make sure you are actually seeing the dermatologist / consultant!
Good luck ... let me know how you get on!
Hang in there! I have similar symptoms for two years. Allergist and and Dermatologist agree it is a haywire Cholinergic Receptor causing histamine reactions. The receptor is responsible for pressure and temperature changes, and so is affected by a variety triggers. My biggest trigger is internal heat from emotions or exercise, though there are many other triggers. I was on 3 antihistamine a day for a year. Still had break through hives so was told to add pepcid ac to the antihistamines. At that point I went to chinese medicine and using "cooling teas" to replace the antihistamines. Down to one a day with the tea. Good luck! Let us know what the doc says.
Apple cider vinegar swabbed on the hives and skin is DIVINE! takes away itch and mellows hives almost immediately without any pharmaceutical ingredients.
Good Morning Tina
i have been suffering from Cronic Idiopathic Urticaria since the summer and two other times in my lifetime. In the past I was able to treat the hives with fexofenadine 180 mg twice a day. This time no over the counter antihistamine works. Needed to go on prednisone when severe only to come back in a vengeance !! No more of that. My Dr that is a Allergist Immunologist is wonderful. She is recommending a monthly shot called Xolair that has been very successful . The FDA has approved it. Before I try that I am taking Doxepin 50 mg at night and just started taking Dapsome 50mg or 100mg. My hives have been getting less each day so wanted to share this all who are suffering with CU. You will need a blood test to check levels first. I've heard drinking a lot of water and 2 tbs Organic Apple Cider Vinegar (with the mother on the bottle )in 8 ounces of water twice a day Also helps. Thank you all for sharing. I hope this might help you! Blessings to you all. We need to pray for a CURE,
Wendy
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.
Apple Cider vinegar works wonders on the skin, but my allergist said that it could worsen the hives if taken internally. I haven't tried.
Not sure about reaction to the apple cider vinegar internally. When I tried it I was already broken out in hives all over. The Doxepin and the Dapsone really seems to work. I've been on the Doxepin for several weeks....but the Dapsone for about a week and I'm really encouraged....very few hives today! I've also read many good things about it when I googled about it from many doctors....much success ! I hope this helps, do drink plenty of water.
Wendy
You'll have to excise my ignorance but are Doxepin and Dapsone anti histimines? So far the anti histimines that the doctor and the dermatologist prescribed seems to make the hives an awful lot worse.
Doxepin is actually an anti-depressant but has a antihistimine in it and the Dapsone is a form of antibiotic . Ask your doctor about these. The Doxepin alone did not help but adding the Dapsone sure has helped. Maybe the Dapsone alone will work! I'll keep you and all posted as to how I do this next week! Very encouraging!
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.
Thanks Wendy62425... Will give it a shot although my doctor hasn't been at all helpful so far apart from the usual 'if the antihistimines aren't helping then there's nothing we can do' line. I've just moved areas and due to sign on at a new surgery so fingers crossed!
My chronic hives are idiopathic .........my downfall is stress effecting my immune system. Each time in my life that I broke out in hives was due to stressful situations.....unfortunately. Ask your doctor about Xolair injections as well. They are very promising and appears to help urticaria go away!! If the antihistamines do not work...the insurance companies should pay for injections. Google Xolair - Dapsone - Doxepin - for helping with Urticaria.
Before I actually saw a Dermatologist, one of my GPs prescribed Hydroxyzine, which she referred to as an old fashioned type of antihistamine, which helped with urticaria because of its sedating effect. It did help a little and particularly with sleeping, which I hadn't been doing for a long time.
None of the other antihistamines helped me.
Yes...the same..... I used 50 mg of Hydroxyine at night and it helped. Another good day for me with very few hives due to the Dapsone. I'll keep you posted.
wendy
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
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.
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.
do you continue to take these medicines daily. Or did you wean off, after things were under control?