HealingWell
Search Close Search
☰

Chronic Urticaria

Support Forums
>
Allergies
✚ New Topic locked
1 2 34 5 6
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/12/2008 1:42 AM (GMT 0)
I was also diagnosed with chronic idiopathic urticaria--3 months so far. I'm interested in feedback on remedies along with experience with a cure I know worked for a friend.

Some background... I'm 47, have had allergies my whole life to grass, trees, weeds, dust, cats, dogs, moulds (basically air), no food or medicine allergies, but never had hives until about 4 months ago. Since the first day they showed up, I've had them every day. I wake up with new hives every morning, they stay all day, and are gone then next morning only to be replaced with the new hives for the day. Very itchy.

I'm currently taking Atarax (Hydroxyzine Hcl) 150 mg at bedtime, and Zantac (Ranitidine) 50 - 75 mg at bedtime. It helps with the itching and allows me to sleep but I still get new hives every day. Usually limited to a handful of pea to quarter size red swollen welts but sometimes up to a square foot or so of hives.

I heard from a friend yesterday that her 8 year old daughter has had hives for 2 years. Her daughter was not able to get rid of them with various antihistamines until a new antihistamine came along a few months ago. It's called Xyzcal (levocetirizine) and her daughter's hives clear up if she stays on this drug.

Xyzcal was approved in the US this year so is quite new and along with that comes quite pricey. :(

Anyone have any experience with Xycal or with other remedies that worked for them. It would be especially interesting to hear from those that had the condition that are now cured.

Thanks!

Rob
Posted 9/12/2008 12:14 PM (GMT 0)

I have a history of chronic hives, I am a 40 year old female and started getting them when I was 18 years old.  Each time I get them, they last anywhere from 1 month to 8 months.  And each time I get them they seem to get worse.  I currently have them and I've been to allergist and dermatologist, was tested for every known allergy and NOTHING came up positive.  All the doctors say most people with chronic hives will never find out why they get them.  I have tried every allergy medicine there is, no kidding!  I've had them so bad that my body is literally covered with huge welts.  I've had to go to the emergency room several times for steriod shots because we're pretty sure I am getting them inside my body as well.  When I get severe hives I also get what feels like severe heartburn and a thick neck.  I've had angioedema several times too, which are huge welts on the face, swelling my lips till they are touching my nose and swelling my eyes completely shut.  Prednisone and steriod shots are my only comfort medicine that will take them away completely for 24 hours. 

I have never posted anything on the internet until now because I feel I have finally found a drug that is helping me through long bouts of chronic hives.  And if I can help one person with hives, it's worth this message!  My doctor prescribed a new allergy pill called xycal and I was a bit negative about it working because I have tried every allergy pill and there is no improvement.  The medicine zycal is pretty new so therefore I had to pay $76 for 30 pills and I've been on them every day.  The medicine reduced my hives to little mosquito size "bumps" and no itching instead of huge "welts" and severe itching!  I wasn't sure that it was the pills that were actually working because I'm also trying vitamins every day high in B12 which people have also said has helped.  So I went one night without taking the xycal when my prescription ran out and the next morning I woke up with huge welts and very itchy on legs, arms, and butt.  I am running to the drugstore after this message to refill my xycal!  For $76 a month, it is every bit worth not having them so severe.  The medicine hasn't taken them away, but I can live with small mosquito size bumps, I cannot live in misery months at a time with welts covering my body and face!

Posted 9/12/2008 12:19 PM (GMT 0)
Correction to the spelling of the drug - it is xyzal

Posted 9/12/2008 7:21 PM (GMT 0)
bj83l, so sorry to hear about your condition but glad you have found relief!

Good news for me too. I hope! I'm not out of the woods completely yet but my hives have improved dramatically over the last week.

I'm quite sure the reason is because I discovered my house had a MOLD problem in the wall with elevated levels in the air. They also discovered I had toxic black mold (stachybotrys). Since the mold remediation company came in and contained the area, I've been almost hive free. I've had 3 days with no hives and the rest with just one or two barely noticeable hives. During the previous three months, I have a few hives every day. Last week, I also stopped the daily use of the prescription antihistamines I've been taking for 3 months and haven't had any problems sleeping. Previously I couldn't sleep due to the itching of the hives without the antihistamines. Without boring you with details, I also discovered the leak in the wall and resulting mold started right around the time my hives started. So, it certainly appears that the mold in my house was the cause of my hives. Note that I am allergic to mold as well.

Hope this helps others out there. Maybe you've got mold in your house too. There are companies that can test for it. Anyone else found this link?
Posted 9/13/2008 3:26 PM (GMT 0)
I am just so desperate for help. I have had hives since December 8, 2007, and I feel like I am losing my mind. I itch and break out constantly. I have tried so many medications. I just don't know where to turn. I just had a miserable night. My upper lip is swollen and I have wheals all over my body. What is the answer?
Posted 9/13/2008 8:44 PM (GMT 0)

Hello. I am new to the site, but like so many other posts...whew,I'm not alone! I too had chronic hives...18 months before they were resolved. My allergist, who is also an immunologist, had my blood drawn and tested for what is basically the 7 year itch. The only lab to date that performs this particular test is in Kansas City, so it took 6 weeks plus to get the diagnosis. I am now about 3 years into the 7, once we got the hives unde control, I have been relatively free, although I still have a few bouts of hives and almost daily angiodema (swelling of my eyes). I would ask my MD if this testing is possible. It is an autoimmune condition.

Posted 9/15/2008 12:04 AM (GMT 0)
I know exactly what you are all going through!  I've had angiodema too, with severe swelling of my lips and eyes and huge itchy welts covering my body.  I've tried every antihistimine with no luck . . .until now, I'm having some relief with the new medicine xyzal, it's very new and expensive but like I said before, every penny is worth it if it keeps the hives from being welts and itchy.  I still get a few little "mosquito size" hives and some swelling of my eyes and face in the morning, but with taking these pills every night, I have improved alot.  The medicine is worth it!  If you're desperate, call your doctor and tell them to put you in zyzal - I've tried everything else and nothing worked. 
Posted 9/15/2008 2:59 AM (GMT 0)
I am currently taking a combination of Xyzal and Zyflo. I started last Tuesday. Unfortunately, I seem to be getting worse instead of better. I called my allergist and asked to start taking Zyflo along with the Xyzal because my best friend and my sister both cut an article out of the newspaper that said some hive sufferers were having luck with that combo. I've been miserable all weekend. I almost went to the urgent care center yesterday, but what would they have done for me? I decided that it would have been a waste of time and money. I've also been taking Atarax but I don't notice any relief from that. What doctor or medical researcher is going to step up and find a cure for this life debilitating condition? I have taken a year's leave from my teaching position so at least I don't have the added stress of getting up early every morning to look in the mirror to see if I'm going to school or not. This morning both of my eyes were swollen so I didn't even go to church. I feel like I can't make an plans in my life! My husband and I are leaving on a trip to Vermont and Maine on the 24th and I am so afraid that I am going to be miserable the entire time! I'm sorry that I'm rambling, but I am just so discouraged this evening!
Posted 9/15/2008 3:44 PM (GMT 0)
If you have the hives that bad, you should seriously go to the urgent care facility or emergency room.  They can give you a steriod shot in the upper thigh and within 1/2 to 1 hour the hives will be considerably going away.  I had to do this twice in 2005.  It is almost guaranteed to work and gives you so much relief!  Also, your doctor should be putting you on prednisone if you have them that bad.  I was on prednisone for a long period of time, about 3 weeks, and also taking the xyzal.  The prednisone keeps the hives from getting real bad and some days I didn't have any while I was on prednisone.  I think what helps is taking the steriod to get them better or almost gone and then staying on the xyzal every day after you are off the steriod.

Posted 9/15/2008 6:35 PM (GMT 0)
I am a 28 year old female and I have had CIU for 18 months now and I know exactly what you are all going through sad
It's awful and I wouldn't wish it on my worst enemy...
Anyway, after having tried so many doctors, I was referred to a dermatologist who is supposed to be one of the best.
He put me on a short course of cortisone along with allergex and loratadine.
Tmrw I am going for various test including auto-immunity tests - it might be that my immune system is fighting against itself (so I have been told)
Wish me luck guys, hopefully they find the answer...

What I can say, is that for the first time ever I have hope that the dermatologist will be able to help me

To all of you out there suffering with this condition, try and stay positive and don't give up hope (I know it's difficult) but just keep at it
Posted 9/15/2008 6:38 PM (GMT 0)
I've actually already been on prednisone...longer than my dermatologist wanted me to be. I've been on zyrtec and pepcid, doxepin, dapsone, claritin, benedryl, xyzal and pepcid, probiotics, Atarax, and now xyzal and zyflo. The prednisone worked the best by far, but even it seemed to be losing its effectiveness...especially as I was weaned down to a lesser dose. I had allergy testing about 3 weeks ago. The only thing I tested positively to was "vegetable gums" and that was only slightly. I have been to my family doctor, a dermatologist, and now an allergist. Has anyone gone to the Mayo Clinic to have his/her hives investigated?
Posted 9/17/2008 5:11 PM (GMT 0)
I am having a horrible itchy day! Someone please help me!
Posted 9/19/2008 1:22 PM (GMT 0)
Update: Went to the allergist yesterday, new mix of drugs: 5 mg Xyzal (am and pm), 10 mg Singulair (bedtime), 150 mg Zantac (am and pm, 10 mg Doxepin (10 mg for 3 to 4 days & then increasing 10 mg after every 3 to 4 days to a max of 40 mg), and 20 mg Prednisone for 5 days just to get the itching and misery under control. I am supposed to call in and report my progress to my allergist every 4 days or so. Here we go again! Keep your fingers crossed and say a prayer for me!
Posted 9/19/2008 6:49 PM (GMT 0)
That's quite the drug cocktail. I certainly feel for you and hope things improve.

Have you looked into your home to see if there are any elevated allergens in the air? As I mentioned earlier, I discovered I had elevated mold in my house along with toxic black mold and while the remediation isn't complete yet and my hives aren't completely gone, I have improved significantly and have been able to avoid taking my antihistamines for over a week. Mold was coming from leaky pipes behind the wall. Might be worth it to test your home. I also plan to put in hardwood floors which are much more hypoallergenic.

Best of luck to you.
Posted 9/20/2008 1:53 PM (GMT 0)
How do you have your house checked for mold? Does someone come in and do it? I was tested for mold when I had allergy testing done and it was negative. If it's a mold issue, wouldn't I have tested positive? I do have a bathroom in my house that I'm pretty certain has mold in it. We have remodeled a lot of our house but have not yet gotten to that room. Ironically, I have several rooms with hardwood floors that I want to re-carpet, but that wouldn't be a good idea, huh?

I felt so much better after I took my first mix of drugs Thursday night. I slept well that night. Yesterday I was almost euphoric because it was the best day that I have had in months. I was productive. I had hardly any hives, and best of all, I didn't feel itchy so I didn't have to scratch! Unfortunately, I itched a bit through last night and have been a bit itchy already this morning, but I'm still optimistic.

My husband and I are taking off for Vermont and Maine this next week, and I just want to feel good enough to really enjoy the trip!

(Do any of you ever sign into the chat rooms of this forum? I would really enjoy talking to some of you "live.")
Posted 9/20/2008 6:06 PM (GMT 0)
I had urticaria about 20 years ago.  It was pretty bad because the hives were all over my body.  I took Hismanal for a week (which has been discontinued) and the itching went away for about 10 years.  When the hives came back, I took Allegra for about a week which I thought will go away for good, but they came back as soon as I stopped taking Allegra.  I had to take Allegra for 3 months straight for the hives to go away.  With Allegra, the hives went away for 6 years.  I started getting the hives again for about 2 weeks now, which is getting worse each day.  This time, my dr. prescribed Xyzal.  I took it yesterday and no hives today!  I'm going to continue with Xyzal for 3 months.  I don't want to stop too early because the hives might come back.

Post Edited (Luvv) : 9/20/2008 1:53:36 PM (GMT-6)

Posted 9/21/2008 2:14 AM (GMT 0)
Not sure but I suspect toxic black mold might have an impact whether you're allergic or not to mold. Also there are hundreds of types of mold and they can't test for all of them. A mold hygienist can check your house or there are self test kits available too for less. Not sure how well they work since I've haven't tried them.
Posted 9/22/2008 2:02 PM (GMT 0)
HI folks

I'm new to the forum. On the one hand I'm so pleased to see that I'm not the only one with this horrible horrible condition. On the other - I feel awful that anyone else has it. I've had chronic urticaria for as long as I can remember. I've had every anti histimine known to mankind and although some do relieve it slightly - nothing gets rid. Its just one of those things we have to learn to live with. It seems when anything different is introduced either internally or externally through diet, clothing footwear etc - we suffer for weeks on end. I am so fed up wearing trainers. I would dearly love to wear elegant comfortable shoes, and look like a lady.

I would be thrilled to hear from anyone at all who has any personal remedies that I can try out. How many of us are there in this forum? I'm curious about the commonality of this condition.

Hope to hear from someone very soon.

HT.
Posted 9/22/2008 5:19 PM (GMT 0)

I Know, I too have had chronic hives for over 20 years now and I haven't found any medicine that takes them away.  I am currently on xyzal and that seems to be helping, at least keeping them bareable anyway!

I also went online to a website called www.Mitamins.com.  You can type in chronic hives and get a mix of vitamins that are suppose to help.  Specifically a vitamin high in B-12, I think it helps with the histamine in your body.  I've been taking these vitamins for alittle over a month and they too seem to be helping.  This weekend I forgot to take them and this morning I woke up with welt size hives all over my legs, butt, and arms.  So, maybe this vitamin is worth checking out!  I just have to remember to take them 4 times a day!  If anyone else has tried vitamins with any luck, let me know.

Posted 9/23/2008 10:57 AM (GMT 0)
That's a whole lot of vitamins - but if it works they are worth it. I've got a massive red lump over my eye just now - which as you can imagine is very flattering (ha ha). I've tried vitamin b12 in the past and it hasn't helped - but maybe mixed with others it might be a different result. Thanks very much for replying.
Posted 9/26/2008 3:18 AM (GMT 0)

I posted here last May about the progress I have made in my battle with hives.  I am happy to report that since I started taking Cellcept that I have not had any hives.  My condition is an autoimmune problem as I outlined in my previous post.  For some reason most allergists don't test for autoimmune factor as a cause of chronic urticaria.  None of the normal H1 H2 blockers did anything for me and I thought the only help was prednisone until I was prescribed Cellcept.  Cellcept is an antirejection drug normally given to transplant patients.  It is costly, in my case over $1000.00 per month but it has been worth it to have my life and sanity. 

Anyone suffering from long term chronic urticaria should be tested for the autoimmune factor which indicates urticaria.  See my previous post.

I completely weaned off of prednisone and all histamine blockers months ago and I am now weaning off of the Cellcept and have not yet had any problems.  In six months I should be completely off of Cellcept.  I will post again at that time to let everyone know if I remain free of angioedema and hives.

My allergist told me I was the toughest case he had ever encountered and now I am hive free.  There is hope for all of you keep putting the pressure on your Dr's to get to the root of the problem. 

Posted 9/26/2008 3:38 AM (GMT 0)

lov2cruise 

 I went to the Mayo Clinic in Rochester Mn some 20 years ago and they ran many tests but did not check for the autoimmune problem that turned out to be the clue to my treatment.  My allergist says that many advances have been made in the last 5 years in the diagnosing and treatment of urticaria.  If your doctor is an older doctor who has not kept up with the latest advances he may not be aware of all the testing and treatment possibilities.  My suggestion: get a recently graduated allergist. Have him do some research on the use of Cellcept for this condition. 

Certainly I would not have started out taking a serious antirejection drug if anything else had worked and I understand why Doctors do not try it as it does have some serious down sides, however when you reach the limit of your endurance it is time to try some off label approaches to solve the problem.  For me the side effects of the Cellcept have been less than the side effects of prednisone.

Posted 9/26/2008 11:06 AM (GMT 0)

Expensive Hives,

Thank you for the info!  I might just be at the breaking point to try anything!  My doctor's have told me that they suspect I have an autoimmune disorder but they have never tested me for it.  Does your insurance cover any expense of the cellcept?  That is a high cost for keeping these hives away!

Posted 9/27/2008 8:14 PM (GMT 0)

I am currently on Medicare with the Rx addon as well as supplemental Blue Shield.  I have run through the donut hole in the Rx and now am covered again.  My costs are around $100/mo until I hit the donut hole, then I pay the full 1000 for three months after which I am covered.  It takes special authorization the Dr. has to apply for, as this is an off label use of Cellcept.  Make sure you have the approval before starting the treatment.

One doctor has done a minor study of the use of Cellcept for urticaria.  I think he has something like 13 patients in the study and 13 out of 13 have had remission of their problem.  If I can find name of the Dr. doing the study I will post it here.

Posted 9/29/2008 8:22 PM (GMT 0)
Went to the dermatologist on fri to get my results - turns out my immune system is ok, the only thing they discovered was that my white blood cell count was quite high which indicates a bacterial infection...which is what some of the other docs diagnosed.

Anyway, he's put me on Ciprobay for 3 days (antibiotic), Atarax at night (half a 25mg tab to start with) just until I get used to it then I have to take a full one, and 2 Zyrtec tabs daily.

He told me to stop the Prednisone and only take if I get a really bad flare up...which I did over the weekend and was forced to take

Not sure if it's the antibiotics but I started getting the flu yesterday, though I seem better today.
Might be that my body is so confused with all the meds or perhaps it was cortisone withdrawal symptoms as I only took Prednisone this morning.

Have any of you ever had cortisone withdrawal symptoms?

Will see what the next few days bring...in the meantime just have to keep the faith and keep praying
✚ New Topic locked
123456