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Posted 6/3/2007 2:45 AM (GMT 0)

Hello All...

New to the forum!  I was diagnosed with Chronic Urticaria 9 months ago.  The common antihitamines do not work at all...Benedryl, Zyrtec, Allegra, Claratin, etc.  even when coupled with Tagament.  Prednisone does, however, stop my hives in their tracks.  When I stop taking the Prednisone I break out in hives again, though, and the side effects are ghastly!!!  The allergist cannot find any allergies, cancer, or any other abnormalities in my bloodwork.  (Knock on wood;)  It is maddening!  Is there something else he should be testing for?  I have tried Doxepin, but seem to wake up with even more hives when I take it!  I take about 20mg per night.  Is that not enough?  Any other suggestions on what works other than Prednisone?  I have changed laundry soap, perfumes, soaps, and have been told by my doctor it is most likely not food allergies!  I know he will not give me Prednisone forever, and when I dont take it the hives are so bad my eyes and lips swell...I look like an ogre!  HELP!!!  Any advice you might have or experiences that will aid in this dilemna?  I have never had hives in my life until 9 months ago.  Why did I get them?  They occur all over my body and ESPECIALLY my scalp!  Pressure hives are a guarantee from wearing a belt or shoes that slip and slide on my feet.  I feel like I am getting nowhere with my doctor and am just hoping something useful might come out of this forum!  Please...if you have any words of wisdom send them my way!  There must be something I am missing or do not know about that will help!!!! (I will keep my fingers crossed!)

Thank you to those who answer!

Posted 6/3/2007 4:56 PM (GMT 0)
Hello Lunar Lady,
I assume you have been through all the tests and thus the diagonosis of Chronic Urticaria.
Chronic Urticaria recent findings suggest that in 25-45% of patients, CIU is not idiopathic but is an autoimmune disease.
Doxepin (Sinequan, Zonalon) -- Inhibits histamine and acetylcholine activity.
10-50 mg PO at bedtime is the recommended range.
This is a tough illness to suffer through, but I would certainly talk with your physician re your meds and the possibility of an underlying disease process that is causing your urticaria.
Prednisone works but it is not for long term use. Please remember I am not a professional, just giving you some info.
Keep working with your physician and posting here.
A warm welcome to Healing Well.
Posted 6/4/2007 4:57 AM (GMT 0)
Thank you for your input! I will be meeting with the allergist on Wednesday. The information you have given is helpful....just wish someone had a cure~all answer!
Posted 6/21/2007 4:46 AM (GMT 0)
Im with you on that. Medications aren't working well for me either. I am trying acyclovir which works for 1 out of 3 patients.
Posted 6/21/2007 12:46 PM (GMT 0)

I had hives and swelling of my lips. It was a food allergy.

I had a Mulberry tree in the yard and the fan sucked in the air from the tree. I also had been eating the Mulberries.

When I moved the fan to another window and stopped eating the Mulberries the hives stopped.Same thing happened to me with Sassafras tea.

I think you do have food allergies but I think there are other things !Have you moved in the last nine months?

Does your basement or house have mold in it? Have you bought new carpet for your house?Have you painted the walls recently?Have there been other construction projects in your home?

I would guess it's more than food allergies but you have to be the detective.What new food did you eat in the last months?

 Hugs Shirley

 

 

 

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Posted 6/21/2007 4:18 PM (GMT 0)
Hi lunarlady,

I have not posted other places but the Lupus forum. Several things have come to mind as I have had several months with hives and we have found the causes and how to control it but it does take many changes and alot of time and patience.

1. Firstkitt was right in saying autoimmune disease, because that helps induce hives in about 40-50% of patients with it. Also there is a disease called mastocytosis that can be run through a simple blood test. One thing, if the allergist is running the labwork and you are on steroids of course all will show negative.

2. You said you have changed perfumes but soap etc, but which ones are you on. A good allergist will know which products you should switch to and will also have you change your entire environment. When I say that, free and clear everything, stuff without artificial dyes, shampoo/conditioner and hair products, lotion, soap, no chemical cleaning products what so ever meaning to use the environmentally friendly ones (which i find work much better) complete cleaning of each room one by one with these to rid of dust mites etc, encasements on the bed, steam cleaning entire furniture and carpets, curtains rugs etc in the free and clear special soap. Also diet changed to organic, no processed food at all, no soda, nothing not in a box basically, certain breads etc. Also meds used with no artificial dyes, no mold antibiotics what so ever. And to avoid pork due to nitrates.

3. If you do have an autoimmune disease or food allergies, I found out tagamet can make things worst. I used pepcid ac and claritin twice a day. After a few months things started to clear up. It takes time and patience and I know how frustrating it is. I found an allergist who specializes in chronic rashes and hives. If you are not seeing one I would keep looking for a new one and stay with this person. You are not required to tell them you are getting a 2nd opinion.

4. Do you notice it worst after the sun, cleaning, eating, sweating etc. I kept an entire thing to find out I get it during that time of month, sweating, sun exposure (auto-immune), or flare and pain.

Hope this helps you some.
Leta
Posted 6/24/2007 7:30 AM (GMT 0)
Hi,

I just wanted to mention my experience hoping you would be able to find a cause for your hives if possible. I want to share my experience because hives are just horrible and I would pray your hives gets cured permanently.

My dermatologist prescribed me minocyclin and I was on 1 pill a day for about 2 weeks. Around 2 weeks, I caught common cold/cough which I thought was not a big deal. I also went on a 7 hour highly strenous hike with about 2-3 hours in direct summer sun. I was also taking airborne to help my immune system against the cold.

I am highly athletic individual, I play soccer, I run, workout, eat healthy, drink water, juices, eat veggies fruits, no stress anxiety in life,  etc....So basically I was very healthy and happy. This is important to know because hives is basically caused by immune system freaking out. My immune system I believe was very strong.

But I think I over strained my personal health by hiking hard when I was sick with cold. I also exposed myself to direct sun (@8000ft so more UV!!!) with minocyclin in my system. It is not recommended to expose to direct sun when intaking any penicillin.

I got hives and before I know it, my body was basically 1 big hive. My dermatologist asked me to stop minocyclin and I got on a 7 day tapered prednisone dose. I also took benedryl to sleep. I drank plenty of water, peeeed plenty, took icy cold showers, plenty of rest, light food (no meat, no fish, no oils - salads, rice, pasta, cheerios + milk, fruits etc...).

After 3 days, my hives went down significantly, but I had swollen lips, ,my throat hurt, my peeing hurt, I gained water weight and there were still some reoccurences of smaller hives on specific parts like scalp, knee, butt, back, armpits, shoulders). They would appear after about 20 hours after I took my prednisone dose.

I think I will be fine in a few days after I complete my dose.

Through my research, I would recommend some things.

Do icy cold showers. That helps the itching for some time.

A hypnotist, or accupuncturist might help.

Start exercising if you are not already. Cut down on fatty foods, oils, junk foods if possible.

Take a vacation to a cooler place and buy a set of new clothes. Stop prednisone for a day or two and see if hives returns. If it does, then its something in your system.

Drink lots of water.

I also took hydrothiamide (I think thats the name) that helped me pee a lot of water out and loose some weight and swelling in lips.

You may want to try ayurvedic medicine. it may help perhaps.

Hope you get better. I know how traumatic this is.

Good luck.

 

Posted 1/6/2013 12:11 PM (GMT 0)
this is great information...thanks to you all...I'm just wondering is it possible that it's just stress...I'm so sick if hives!!!!
Posted 1/6/2013 12:52 PM (GMT 0)
If you have a lot of stress it can make hives worse.
Posted 1/12/2013 4:06 PM (GMT 0)
I'm glad to find this. Suffering from hives and swellings is amazingly draining and trying to explain to others just seems to make me sound a bit mad. My body decided to start randomly swelling up in response to pressure about 18 months ago, which was quickly followed by full coverings of hives, which sometimes appear as blisters. They seem to have eased off a bit, but I can't kneel or sit on a hard stool as I'll end up with swollen knees/seat (literally a swollen line following where contact was with the chair). I had a bath the other night and forgot my bath pillow so ended up with the back of my head hugely enlarged, hot and itchy. What I'd really like to know though, as I have nearly continuous hives on my head, is whether it is best to continue washing hair frequently or will that upset things even more? I keep trying to change habits but there is little change in the condition. I've moved to baby shampoo and hypoallergenic things - can anyone recommend anything to stop me wanting to scalp myself? Please?!
Posted 1/12/2013 6:01 PM (GMT 0)
Have you been to an allergist? Are you taking any medications at this point?
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