Chronic urticaria successs

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New Member

Date Joined Sep 2009
Total Posts : 6
   Posted 12/27/2009 12:23 PM (GMT -6)   
Hi all,
I have had CU since 1994. I spent 15 years on prednisone almost constantly, and unless I was on the prednisone I NEVER went into remission. Every time I would try to taper off the prednisone I would get to under 10mg and then the hives would come back with a vengance. As time went on, it would take higher and higher doses of steroids and antihistamines to get it back under control. In August of this year I made it down to 5mg of Prednisone and had me worst outbreak ever. In one week I was in the ER 4 times with my throat swelling shut, 2 visits were only 8 hours apart. I had hives covering just about every inch of my body. I was on 180mg daily of oral predisone with intermittent injections of 100mg or more of prednisone and kenalog, as well as benadryl 100mg every 6 hours and 50 mg of zyrtec. There were a few times that week that I honestly thought I was not going to make it. I went 4 days with no sleep between the massive doses of Prednisone and the constant itching, I began to wonder if it was possible for my heart to just explode from all the steroids.

After 6 days, I was finally seeing a little relief. The hives were not gone, but my eyes were at least open a small slit and I no longer had any in my mouth or throat. My family doctor had heard of a new allergist in my area that specialized in CU. My doctor called the allergist that afternoon and the allergist called me at home that night to ask some questions and told me to be at her office at 8 the next morning. She immediately did in office biopsies and blood work. She also informed me that I not only had CU, but delayed pressure urticaria, dermagraphism and angioedema all at once. I was breaking out in hives and then I would scratch them and the DPU and dermagraphism would kick in and just make things worse.

She promised to have me "cured" within 6 months. I laughed at her. she started me on doxepin, prilosec, atarax, and ativan, kept me on the steroids but cut the dose to 140 and took me off of everything else. She rescheduled me for 4 days later so she had time to get the test results back. When I came back, I was almost hive free. still on a massive dose of steroids, but at least I was not itching. just as she suspected, my CU index was though the roof and my problem was autoimmune, not an allergy. She started me on Dapsone (I had to test positive for a g6pd enzyme before I could take it) and told me to cut down on the steroids 10mg a day until I made it to 40mg. Everything went great, at one point we had to up the doxepin and dapsone, but I was able to get off the steroids COMPLETELY for the first time in 15 years.

I am now totally non reactive. I can scratch myself and my skin will not even swell or turn red. I have not had a hive at all in almost a month. I go back in mid January for a recheck, and if everything is going well then I will go off of everything but the dapsone. After the end of february I should be able to go aff the dapsone as well. Out of all of her CU patients, she has done the same treatment for the ones that are autoimmine, the dapsone has had a 100% success rate. She has had 3 patients (one of them herself) that had a slight relapse after 2 years, but another 3 months of the dapsone and antihistamines took care of it and there have been no further problems.

It feels funny to not have to base my life around breaking out anymore. I no longer watch what I am eating because I am worried about a reaction, and I actually knelt of the floor and played with my son for a while and my knees never swelled up like they used to.

Elite Member

Date Joined Jul 2009
Total Posts : 14355
   Posted 12/27/2009 5:58 PM (GMT -6)   
Wow! congratulations on finding a doctor to help you.

I wish you continued success!


New Member

Date Joined Jan 2010
Total Posts : 3
   Posted 1/4/2010 10:20 AM (GMT -6)   
thanks for sharing this... I am new here, and looking for resolve for my boyfriend. I do not know much about medical terms, medicines and such... but i see because of your history, you had no choice but to be extremely educated about what the cause and resolution for your CU was. We have just been assuming his problem was due to an allergy. Auto-immune.... this is helpful, and hopefully will be something that can link us to a better resolution. thanks, and congrats on getting some relief.

hives b gone!
Regular Member

Date Joined Jul 2009
Total Posts : 38
   Posted 1/10/2010 11:08 PM (GMT -6)   
Yay! I'm so happy for you that your hives are gone! What is dapsone? I can't believe you had hives for 15 did you cope? I've had hives for about 10 months now.

New Member

Date Joined Jan 2010
Total Posts : 4
   Posted 2/1/2010 1:18 AM (GMT -6)   
This looks promising. Where did you find this miracle doctor?

most of them here are completely clueless and even refused to do blood tests because "there are too many types of tests" and they don't know which ones to do. That's Canadian health care!

New Member

Date Joined Jun 2010
Total Posts : 1
   Posted 6/9/2010 5:16 PM (GMT -6)   
Please could you tell us where your allergist is. She sounds wonderful.

New Member

Date Joined Mar 2013
Total Posts : 1
   Posted 3/18/2013 3:44 AM (GMT -6)   
I have CU and DPU and angiodema now for two years. I have had other outbreaks of Uticaria for over ten years but nothing lasting this long. I've only ever gone to steroids once when I had hives all over me.

I'm mainly trying to control it with antihistamines. They tried the Ranatadine but that gave no effect so gave that up a while ago.

The DPU is the one that is the most painful and keeps me from sleeping. Just about to go to the doctors for Dapsone. So happy that maybe an end maybe in sight after reading the post.

Meant to be getting married this year, no way if I am covered in hives and not able to wear nice shoes for fear of not being able to walk a few hours later due to my DPU.

New Member

Date Joined Jun 2013
Total Posts : 1
   Posted 6/29/2013 6:10 PM (GMT -6)   
Hello... I have had what emmab178 and others describe since December 2004. It has been ok at times but my life has been changed forever by the debilitating effects. Now it is affecting my eyes as well. No doctors can figure it out. I have been to 21 different doctors in the northeastern us.
To prisoneroftime... At least in Canada you get inept doctors without having to pay them as well. I have had insurance all along but my bills have been in the thousands almost every year.

I just went to Mass general again and the allergist/immunologist there is now suggesting Dapsone. I have terrible liver functions already so that concerns me a bit but eiapet that started this seems to have had success. I worked on my closet the other day for about three hours and am still recovering from the resulting DPU and usb conjunctival hemorrhage as well as extreme exhaustion with a return of depression symptoms... Prednisone helps but I hate it.

Anyone else had success with Dapsone?

New Member

Date Joined Jan 2014
Total Posts : 1
   Posted 1/12/2014 5:57 PM (GMT -6)   
Did the dapasone work. I've had chronic urticarial for 3 years. $ zertec or allegra a day at my worse with a short course of predisone. This knocks it down enough so I can maintain at 4 or less. Have only gotten down to 1/2 of allegra for a month at most then the cycle starts again. They have recommended dapone or plaquinal.
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