Jump to content

Chronic Hives - miracle cure needed


  • Please log in to reply
21 replies to this topic

#1 All-I-Need

Posted 10 September 2012 - 02:09 PM

Hi All,

I posted a thread on here back in April asking to hear from all hives sufferers hoping for a miricle cure.   One whole year on from when I first started getting hives and I still dont have an answer and I'm still covered in hives.

Yep, ONE WHOLE YEAR of itchiness and some days severe depression.   I've had skin prick tests, tried several different medications and have been taking 4 Zyrtec tablets daily.  Some days they work, some days they dont.  

I did notice the hives are more angry on certain days leading up to and after my period - I discussed this with my specialist and he said that it could well be a hormonal issue as they actually started after I finished breastfeeding my fourth child (8years of being pregnant or breastfeeding so hormones could well be stuffed up!  lol).  He put me back on the pill, the hives did calm a little, I dont 'welt' up as much anymore, just itchy 'spots' but they are still there EVERYDAY.

(I've also tried natropath, chinese medicine and accupunctor to no avail)

Can anyone provide me with a suggestion on what to do?  Im willing to try anything.  unsure.gif


#2 30bt

Posted 10 September 2012 - 10:24 PM

There are immunosuppressive drugs you can take for chronic urticaria that can be quite helpful but you can't be bfeeding
Talk to your immunologist!

#3 Weirdly Sane

Posted 10 September 2012 - 10:34 PM

I can only sympathise.  Mine haven't been that bad - yet.  I had them for the first time in June, had a round of oral and topical cortisone, they almost disappeared and then came back agin.  I've just finished a second round of cortisone - again, tablets and cream.  Zyrtec had no effect.  Double dose of Telfast ( the strongest one) did take the edge off the swelling and welts but didn't stop the itching.  I also bought some menthol and tar cream _ Hamilton I think the brand was - and kept it in the fridge and that worked to stop the burning.

Has your doctor/specialist talked to you much about the underlying cause?  In my case it's stress related which is scary because I'm not in a position to eliminate the stressors in my life.  I'm finding exercise helps.  But it's been a week since I finished the cortisone and already I can feel the itches returning a little.

#4 kay11

Posted 10 September 2012 - 10:40 PM

Not all hives are allergy based. Head to an immunologist and get a proper diagnosis. I had chronic hives for years (not very itchy, but sometimes burning) and it turned out to be an extraordinarily rare immune system condition. One genetic diagnosis later and on my own miracle treatment and I feel so much better.



#5 Flaxen

Posted 10 September 2012 - 10:47 PM

My skin issues are stress related, but its not like i have a stressful life.
Have you tried the products called Moo Goo?
I know when i eat better, sleep better and use hypoallergenic everything (toilet paper/washing powder/handsoap/moisturiser/everything!) it goes away 90%, but its hard keeping it up!
But none of that works if im stressed about something or during the week before AF.

#6 fizzy19

Posted 10 September 2012 - 10:50 PM

Hi is it possible that its a stress cycle. You said you somedays suffer from severe depression, but could it be possible that this depression could be in turn causing the hives?  I am on anti-depressants and I also suffer from bad eczema, but I do remember in times of great stress they come out really badly.

sorry if I've rambled, good luck

#7 kay11

Posted 10 September 2012 - 10:52 PM

Actually none of you guys are from SA are you?

If so, try googling "FCAS auto inflammatory" and see if it fits. It's very rare but I suspect that there is a large family group in SA that has this (a family subset is currently getting diagnosed) and need to start trying to get the word out.

#8 All-I-Need

Posted 11 September 2012 - 01:43 PM

Kay11 - Im from Victoria.  original.gif

Thank you all for your responses.  I'm back to my specialist in October so will be asking about all of the above.

Keep those suggestions coming tho.  The more info I get the better.

Thanks again original.gif

#9 All-I-Need

Posted 11 September 2012 - 01:45 PM

QUOTE (kay11 @ 10/09/2012, 10:40 PM) <{POST_SNAPBACK}>
Not all hives are allergy based. Head to an immunologist and get a proper diagnosis. I had chronic hives for years (not very itchy, but sometimes burning) and it turned out to be an extraordinarily rare immune system condition. One genetic diagnosis later and on my own miracle treatment and I feel so much better.


If you dont mind me asking Kay - what was the diagnosis and treatment?

#10 Pompol

Posted 11 September 2012 - 10:10 PM

Hi OP. oh how I feel for you. I broke out in what I thought was hives immediately after my daughters birth. They looked exact,y like the hives I get from penicillin so my GP, and then the next 6 doctors I saw (!!) just kept pumping me full of antihistamines. Or telling me to change soap, washing powder, diet, cleaning chemicals, shampoo, etc etc and so on and so forth Until I was pretty much living off rice in a chemical free bubble (i literally moved out of my house temporarily in case if was environmental) and it still had absolutely no effect.

It turned out to be a rare auto immune condition called pemphagoid gestational, it's pregnancy related but can appear after birth in some cases like mine. In most women the hives turn into large blisters but mine never did, they were just ordinary looking hives at first and eventually became hard, rough hives. Of all of the doctors I saw, none had ever seen a case. And it's not the rarest auto immune disorder by a long shot!

PG is not likely to be what you're suffering from (unless you has unexplained hives during one of your pregnancies, in which case it might be a fit?). But I also get flares before my period, stress mskes it worse, etc.

But my point is, once I found a doctor who didnt write it off as "unexplained hives"  I very quickly had the right tests, and even while we waited to confirm the diagnosis i was given a script for high dose prednisone and within a few days the agony was over. Until the prednisone agony started wink.gif but it was still better than the agony of unexplained severe itch!!!

As I understand it, prednisone (both oral and topical cream) is used to treat a range of auto immune type disorders, could you discuss that with your GP? Or could you request a biopsy of the hives (there's a test they run on a biopsy that confirms the presence of antibodies for PG, not sure if this applies to other auto immune skin disorders but worth asking)? I believe there are also blood tests that can be done. October is a long time away, maybe your GP can begin some tests in that direction at least to rule auto immune out?

Good luck OP, and i really hope you find relief soon!!!

Edited by Pompol, 11 September 2012 - 10:12 PM.


#11 Quack Quack

Posted 11 September 2012 - 10:21 PM

I have had the exact same thing.  Covered in over 300 spots at a time and have only been rash free for about 3 weeks total since Feb. this year. sad.gif

My doctor said it was Neuro-Dermatitis, the Dermatologist I saw on Saturday said, along with the other health issues I am experiencing he would lay  money on systemic Lupus.  I am now going to see a geneticist and a connective tissue specialist and undergoing yet another biopsy on Thursday.

I have started taking Endep 50mg about 6 weeks ago and while it hasn't helped the rash, it has helped me to sleep and helped the depression I was feeling.
The ONLY thing that has stopped the rash in its tracks was a 6 day course of Prednisone, I took that about 3 weeks ago and have only had a few small spots since. Still itchy as Hell but only a few instead of being covered.

Goodluck!

#12 Weirdly Sane

Posted 11 September 2012 - 10:24 PM

It was prednisone that I have taken.  It's cortisone, so really not great to take for any length of time.

#13 Weirdly Sane

Posted 06 December 2012 - 07:18 PM

Hi SassyGirl

as I understand it, if you don't have the lumps, it's not hives.  But I could be wrong.
I often had the itch,  and had to fight hard not to scratch.  If I scratched, up came the welts.

At the moment, hives free (touch wood).

#14 All-I-Need

Posted 06 December 2012 - 09:36 PM

I still get really itchy without the actual lumps/welts.   13mths on and I still dont have a direct answer.  Specialist yesterday told me that it could be a number of things (from food additives to the weather!) and there is no way of actually pinpointing the direct cause.

Dogged - how long have you been hive free?

#15 ~sunshine4~

Posted 10 December 2012 - 07:19 AM

Sassygirl.... Have you been tested for a mammalian meat allergy? I am being tested at the moment, should get my results this week hopefully. I had delayed anaphalxsis, it was about 4 hours after I had dinner (pork). If you google mammalian meat allergy it is a fairly recent discovery (last 3 years) and not well known. You need to have blood tests, the skin prick testing won't show it.

#16 lamarque

Posted 10 December 2012 - 01:03 PM

Reading with interest.  Have been suffering from hives on and off since about February.  

Mine have all been located on the torso and I thought it could be related to my Mirena nearing the end of its shelf life and having it removed.  I seem to come out in the hives before my period and after.  

GP has asked me to keep an eye on diet etc but I'm not eating anything I haven't tried in the last twenty or so years.  He's also mentioned Prednisone if they keep coming up.  I'm hearing a few stories about this drug though, what is so awful about it???

#17 ~sunshine4~

Posted 10 December 2012 - 02:35 PM

My allergy specialist said true allergies in adults develop suddenly even if you have always eaten a particular food. Prednisone isn't much fun, although I had quite a high dose (100mg per day following anaphalxsis) for 3 days - couldn't sleep, no appetite, heart races, pimples and lost 3kg (liked that bit!). You need to gradually reduce the dose when coming off it too, don't stop suddenly.

lamarque.... have you seen an allergy specialist for the hives? Loratadine is a great anti-histamine, no side effects at all and very effective.

#18 lamarque

Posted 10 December 2012 - 07:40 PM



This is what mine look like when they come up.  I usually get them in clusters either on the front of the body or the back.  This one was by itself on my back.  

QUOTE
My allergy specialist said true allergies in adults develop suddenly even if you have always eaten a particular food. Prednisone isn't much fun, although I had quite a high dose (100mg per day following anaphalxsis) for 3 days - couldn't sleep, no appetite, heart races, pimples and lost 3kg (liked that bit!). You need to gradually reduce the dose when coming off it too, don't stop suddenly.

lamarque.... have you seen an allergy specialist for the hives? Loratadine is a great anti-histamine, no side effects at all and very effective.


Oh, I didn't know that Sunshine4, I've been constantly racking my brain trying to think of the new things I've eaten, bought or used.  cool.gif

I haven't been back to my gp since my first consult with him.  I had a few months where only one or two came up but last month I had 4 in the armpit area which was annoying so I think I'll head back in the New Year.   He did say he would organise  further testing so I'm not sure if that means an allergy specialist or not.

I couldn't handle anymore pimples but the weight loss sounds ok.  Wouldn't be a fan of the fast heart rate and sleeplessness - I can't even take Sudafed for those reasons.   It sounds like your hives are a lot more serious than mine, so hopefully it won't be a high dose.

Thanks for info though.

ETA - Loratadine - is that over the counter or script??  My GP recommended in the meantime a combination of Zyrtec and Zantac (both are receptor blockers).  I haven't tried them together yet though.

Edited by lamarque, 10 December 2012 - 07:46 PM.


#19 Lagom

Posted 10 December 2012 - 07:53 PM

I get hives every now and then and the only thing that gets rid of it is prednisolone.  I don't like how jittery it makes me feel but my house sure gets clean!  And my joints are so smooth and I can breathe which also a bonus. I find if I then take antihistimines once it's cleared that is enough to keep it under control.
I can't imagine being like that for a year.  You poor thing. sad.gif

#20 ~sunshine4~

Posted 11 December 2012 - 06:19 AM

Loratadine is over the counter, the hospitals and allergy specialists seem to be using this one now - I had no side effects at all unlike phenergen etc. Hives are just awful, I would rather be bleeding and in pain than itching.

#21 KatakaGeoGirl

Posted 11 December 2012 - 07:29 AM

Can I ask what pill you are on?? I got two times very extreme burn (and itchy) rashes all over my body whilst I was taking 2 different pills, both were a progesterone based pill. As soon as I went of them both time (both occasions I had the rash about 3-4 months) the rashes went away.

QUOTE (All-I-Need @ 10/09/2012, 03:09 PM) <{POST_SNAPBACK}>
Hi All,

I posted a thread on here back in April asking to hear from all hives sufferers hoping for a miricle cure.   One whole year on from when I first started getting hives and I still dont have an answer and I'm still covered in hives.

Yep, ONE WHOLE YEAR of itchiness and some days severe depression.   I've had skin prick tests, tried several different medications and have been taking 4 Zyrtec tablets daily.  Some days they work, some days they dont.  

I did notice the hives are more angry on certain days leading up to and after my period - I discussed this with my specialist and he said that it could well be a hormonal issue as they actually started after I finished breastfeeding my fourth child (8years of being pregnant or breastfeeding so hormones could well be stuffed up!  lol).  He put me back on the pill, the hives did calm a little, I dont 'welt' up as much anymore, just itchy 'spots' but they are still there EVERYDAY.

(I've also tried natropath, chinese medicine and accupunctor to no avail)

Can anyone provide me with a suggestion on what to do?  Im willing to try anything.  unsure.gif



#22 indigogirl

Posted 11 December 2012 - 07:36 AM

Hi I have had problems with chronic hives and found that the only way to find out the cause was to do the whole ellimination diet thing. Turned out that the hives were related to all of the salicylates I was eating in healthy foods of fruit and vegies.

limiting my intake has really helped. I dont know if thats something you've already looked into or not but might be worth a try if you havent. I cant believe the difference its made

Hives really are awful so I'm sorry you are having to deal with that for so long




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

 

Help! My baby will only sleep in my arms

It's stressful to be the one who is holding your baby most of the day, but it's even more stressful to wonder, 'am I doing something wrong? Or am I creating bad habits?'

Five-year-old's photo captures beauty of motherhood

There is no make-up or special outfits and hairdos, but the five-year-old boy who took this picture captured the essence of motherhood as well as any professional photographer.

POLL: Which expert do you want to talk to?

Take our super quick poll to let us know what kind of expert you'd like to talk to.

Babies know whether you are naughty or nice

Studies have shown that infants in the first months of life try to avoid dealing with social wrongdoers - for example, sharing less with them and helping them less - and they expect others to, too.

What's your family's illness curse?

I'm a firm believer that every family has their 'curse' : the illness that plagues them but seems to bypass other families.

Bride shaves her head at wedding to pay tribute to ill husband

The idea of shaving your head at your wedding would sound terrifying to many brides - however this woman did it, and for the most heartbreaking reason.

When do you stop swearing around a baby?

You don't really want your baby's first word to be the f-word. So when do you stop talking freely around them?

Exclusive Black Friday Sale!

Get over 40% off selected products, including prams, baby carriers, cloth nappies, sleeping bags and much more! 24 hours only, on May 6 - register now for your special code.

Mum left fuming after being forced to dump 15 litres of breast milk at airport

Aviation officials at London's Heathrow Airport forced a nursing mother to dump nearly four gallons (nearly 15 litres) of breast milk.

Health authorities lost track of complaints about controversial midwife

New Zealand hospital bosses were warned about a childbirth educator's controversial and dangerous teachings 10 years ago, but it appears nothing was done.

Would you pay someone to name your baby?

"If you are getting somebody who really knows the evidence, then I'll say it's worth every penny, whether its $500 or $5000."

How much exercise is okay when you’re breastfeeding?

After having each of my babies, I was keen to get back into exercising. Following lots of back pain during pregnancy that restricted my movement, once those babies were out I couldn't wait to move properly again.

Pre-conception health tips for men

As it turns out, conceiving a baby isn't just about fertility and women's health.

Can you spot the 11 dangers to your baby?

Some are difficult to see at first glance, but they can be dangerous to our little loved ones.

Toddler survives near drowning, wakes up with ability to speak

It was moving day for the Holiday family from West Seattle. The family of four were moving just a few houses down the street, and both homes were a hive of activity.

Amniotic fluid embolism and blood clots in pregnancy

Two types of embolism that can occur include amniotic fluid embolism (AFE) and venous thromboembolism (VTE, or clots in the blood).

Little girl's dream comes true when she meets garbage man

She always wanted to meet her bin man, who drives by her house and honks at her each time.

What to expect when you go from two to four

Elyce and her husband had a four-year-old and a two-year-old - both boys - when they received the news they were expecting twin sons.

The latest news on treating and trying to prevent eczema

Eczema is a disease which affects up to one in four children under the age of two in Australia. (SPONSORED)

What's new so far: prams & strollers of 2016

It's time to round up the new prams of 2016; here's your guide to what's new and improved in the pram world.

Baby's death leads to warnings over portacot mattresses

The death of a baby whose head got stuck between a foam mattress and a cot side has prompted a public safety caution.

The grandmother offering a safe haven for babies in need

Like most people, Catherine Lucre is left heartbroken when she hears news that a baby has been abandoned or killed.

 
Advertisement
 

Top 5 Articles

Advertisement
 
 
 

What's hot on EB

The babies who are one in 70 million

Bethani Webb was excited to find out she was pregnant, but the first time mum did not realise she was carrying four babies not one.

Exclusive Black Friday Sale!

Get over 40% off selected products, including prams, baby carriers, cloth nappies, sleeping bags and much more! 24 hours only, on May 6 - register now for your special code.

Cafe offers breastfeeding mums a free cup of tea

A Sydney cafe is offering breastfeeding mums free cups of tea in a bid to show support for the right of women to nurse their babies wherever they choose.

To snip or not to snip? When the decision is not clear cut

Jamie Oliver, who considered a vasectomy, is to be a father again. A fellow dad reflects on his own decision 11 years ago

Doctors stunned by rare twins born almost six weeks apart

To everyone's surprise, Kristen Miller "kept doing better each day", keeping her second baby safe.

Baby book ideas for modern parents

Before my son was born I was given a lovely baby book full of blank pages waiting to be filled with weights and heights and first words.

The adorable smile of a baby seeing his mum clearly for the first time

There is no doubt seeing their child smile for the first time is an unforgettable moment for parents everywhere.

Mum tells how toddler 'nearly hung himself' in cot mishap

When Alison Johnson put her 18-month-old Caleb down for a nap, she had no reason to believe her son was in any danger.

Babies are still switched at birth? Yes, it can happen

All my panic and tears aside, my biggest question looking back is about the kind of security measures used in the maternity ward.

Doctors slammed for taking selfie with newborn

Everyone who visits a mum in hospital in the days following childbirth wants to get a photo with the new baby.

ergoPouch Twosie Sleepsuit for winter breastfeeding

Finally, there's a way to keep warm while breastfeeding through winter.

Health check: How long does sex 'normally' last?

What to do with this information? My advice would be to try not to think about it during the throes of passion.

When breastfeeding sucks: fixing common problems

From niplash to tight boobs, biting to milk supply issues, Pinky McKay looks at common breastfeeding issues and how to solve them.

10 things I've learnt in my first six months with twins

Six months on we're all still alive, and the more we get to know each other the easier the days become.

Mum's loving kiss leaves baby fighting for life

Kirsty Carrington thought nothing of giving her newborn son a kiss, little did she know it would leave the baby fighting for life.

When doing chores is your new 'me time'

After children, 'me time' looks a little different.

Get going: 14 travel strollers for families on the move

A stroller can make or break travelling with a baby or toddler. Here are 15 great single travel stroller options.

10 ways toddlers are terrific

It always pays to remind yourself of how terrific toddlers can be - they're little like this for such a short time

 

ENTER NOW

Do your kids love bananas?

This is the comp for you! We have $800 worth of Myer gift cards and boxes of Australian Bananas to be won. Entry is simple: just post a pic of your little one enjoying a banana in the comments of the FB post to enter.

 
Advertisement
 
 
Essential Baby and Essential Kids is the place to find parenting information and parenting support relating to conception, pregnancy, birth, babies, toddlers, kids, maternity, family budgeting, family travel, nutrition and wellbeing, family entertainment, kids entertainment, tips for the family home, child-friendly recipes and parenting. Try our pregnancy due date calculator to determine your due date, or our ovulation calculator to predict ovulation and your fertile period. Our pregnancy week by week guide shows your baby's stages of development. Access our very active mum's discussion groups in the Essential Baby forums or the Essential Kids forums to talk to mums about conception, pregnancy, birth, babies, toddlers, kids and parenting lifestyle. Essential Baby also offers a baby names database of more than 22,000 baby names, popular baby names, boys' names, girls' names and baby names advice in our baby names forum. Essential Kids features a range of free printable worksheets for kids from preschool years through to primary school years. For the latest baby clothes, maternity clothes, maternity accessories, toddler products, kids toys and kids clothing, breastfeeding and other parenting resources, check out Essential Baby and Essential Kids.