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Chronic Hives - miracle cure needed


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#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




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