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Chronic hives. Driving me mad.

(40 Posts)
hellymelly Sun 05-May-13 23:19:08

Had a reaction to antibiotics 6m ago, since then have had hives on and off, mainly on over the past 3m. Saw an allergy Doc who thinks I'm reacting to salicylate ( a chemical in fruit and vegetables) he has put me on a low salicylate diet which is really horrible and boring, and which doesn't agree with my system generally, as I feel rubbish on it. However I am still coming out in hives daily. (I've been on it nearly 2 months). The doc prescribed triple dose antihistmines but I tend to react badly to meds so am only doing the diet, am wondering now if there is in fact some other trigger. Has anyone had hives go on and on like this? If so did they go away? Last night I had weals all over my back and felt horrible, had to take piriton to calm it down. I'm eating far too much sugar and fat as I can't eat many types of fruit and not having any herbs or spices is hell. I am gluten intolerant and a veggie so the diet is very hard.

Sh1ney Mon 06-May-13 00:09:25

Yes , I get several attacks a day. I've either got pressure hives or dermographism...probably a mixture of the two!

I don't take anything, used to it now. It's caused by too much histamine in the skin. I sometimes take an anti histamine if it is really driving me mad but attacks last around half an hour and I just get on with it.

I find it more annoying when people point out that I have weals on me and say' God, you must have been scratching! ' when all I've done is lightly brushed my hand over myself or something. Mildly irritating as hear it all the time!

Sh1ney Mon 06-May-13 00:10:49

And I've had it for years now. Sometimes it goes away for a few months but always comes back.

whatwouldyoudoifyouwereme Mon 06-May-13 00:11:36

Dd gets this. Calamine cream seems to help. As well as antihistamines.

hellymelly Mon 06-May-13 15:23:08

shiney mine are worse under my bra strap or where there is pressure. I am hoping it has some other cause and not salicylate, was that ever suggested to you? I haven't had any tests, as there isn't one, he just asked what I ate, my diet was high in salicylate as any vaguely healthy diet would be, particularly if you are vegetarian. I am getting used to the hivesm but I also feel strange and slightly faint and tight chested if a bad attack of hives is erupting, and that frightens me. Doc said stress was an aggravating factor and I've lots of stress in the past 18 m. Dad died, Mum in hospital and now showing early signs of dementia, all hideously stressful.

Slipshodsibyl Mon 06-May-13 15:31:16

Go to a dermatologist. They cannot always help, but a combination of anti histamine and Zantqc sometimes stops chronic urticaria, though they dont reqlly seem to know why, and they might have other solutions. I use a specific anti histamine which has no side effects (Telfast) I think they are your best option really as the urticaria might go away but it might not and you need to learn to manage it. A bad attack makes me feel lousy too so I sympathise but you need to learn to manage living with it.

hellymelly Mon 06-May-13 15:58:15

ok, I will think about a dermatologist then. The consultant I saw at the allergy clinic has given me an anti histamine that can be taken at very high doses, I was supposed to take two to three times the normal dose, plus another drug that is normally used for asthma, to take at night, again at a higher than normal dose. I was on antihistamines when I had the initial reaction to the antibiotic, but the non-drowsy one I was taking made me faint, shaky, and terrified feeling, I ended up in A+E as I felt so awful. They gave me clorphenamine then, and I am ok on that if the hives are very bad, but the idea of the raised doses is to calm down the mast cells so they stop over reacting. I hate the idea of more drugs, the asthma one had lots of possible nasty side effects, so i have stuck to the diet. I would think by now the hives should have calmed down if it is salicylate, but I had some cardamom flavoured pudding (cardamom is high in salicylate) and had a reaction that I normally only get with gluten, very bad diarrhoea (sorry tmi) and gut pain, but not lots of hives, at least not more than normal. Am so fed up with it on top of all the other stresses of finding a care home place for my Mum and clearing her whole house as we've sold it. sad Am fed up. Do hormone changes play any part? I'm 49 and although I was on an even keel, since my Dad's death I am hormonally haywire.

Slipshodsibyl Mon 06-May-13 18:52:19

I think maybe they do. Mine came on in my 40s and I have no other allergies of any kind at all.

hellymelly Mon 06-May-13 20:59:48

I do have other allergies, to wasp stings, and am generally a "reactive" type. My brother has asthma. My face went redder and more rashy, probably rosacea, at about 45, and now this, I do feel it must be hormonal to a degree.

CoteDAzur Mon 06-May-13 21:58:28

OP - There are different types of antihistamines. One you will not react to should be easy enough for a dermatologist to find.

Sh1ney Mon 06-May-13 22:41:31

Helly - a lot of thhe time this is just 'one of those things'.... No, I saw a doctor once and it is to do with the level of histamine in my skin. Probably. Sometimes I can write my name on my arm. Sometimes I am so itchy it is unbearable. And i come up in massive weals.

I'm used to it. It isn't an illness and I pop a pill if its really bad. At most it lasts half an hour so it isnt like its ongoing for hours at a time < that would be a different matter! >

Yes try seeing someone but my advice would be to try and forget about it and you'll probably see that it comes and goes

hellymelly Mon 06-May-13 23:02:20

Mine tend to last for a few hours, sometimes a day, only to flare up again almost as soon as they've died down. I get the wheals where I have scratched the itch, I looked like I'd been whipped a few nights ago as I had scratched my back around the bra strap. The itchyness keeps me awake at times and can be maddening if it is legs/back/tummy all at once. Sometimes my eyes puff up, one eye more than the other strangely. I get palpitations anyway, but they can be bad when the hives are erupting. My whole system feels "wrong". Oh and my head itches like mad too.

Rulesgirl Mon 06-May-13 23:15:38

I got it when I had bad flu once and had to keep going to take the kids to school etc. Guess I took too many asprins cause I came out in huge welts all over my body. I do suffer from uticara though.

I used to suffer really badly from hives years ago, but they calmed down massively when I moved from the US to the UK (I have no idea why). I sometimes still get them during very stressful times (I also have rosacea, also mostly in remission).

I second seeing a dermatologist.

I had really good results from taking loratadine every day, as a preventive measure, when I was suffering badly from them. (that's the generic name, the US brand name is Claritin) It has very low risk of side effects, I think -- I didn't have any, at any rate. You can get it as a generic over the counter drug at Boots for very cheaply (get the Boots generic version).

When I was very good about taking it every day, it made a huge difference. It's a pretty mild drug so you could give it a try and see how it goes.

hellymelly Mon 06-May-13 23:34:04

I have loratadine, that is the one the doc gave me, but I was worried about taking it as it mentions nervousness and sleeplessness and that is what I had writ large with the other non-drowsy one I took after the initial antibiotic reaction. I was shaking and terrified, it was horrible. I think maybe tomorrow I should try taking the loratadine in the morning and see how I feel. My rosacea only started when I moved from London to the Back of Beyond, where I am now, and oddly my hives were a bit better last week when we were away. Still in the UK, but three hours away from home.

Ah, that's interesting -- maybe the pollution in London kills all the allergens, it was when I moved there that my hives and rosacea got better! It's all so odd.

I had absolutely no side effects from the loratadine but obviously everyone is different. Can you take half a pill to start with? I don't know what dosage I took but it was OTC so probably not too high.

I also found it helped when I started using cleansers without soap or parabens (stuff for really sensitive skin).

Lorelei353 Mon 06-May-13 23:57:50

My experience is a bit like Slipshodsibyl. A few years I developed chronic idiopathic urticaria. No-one knows how it started but it's kind of irrelevant anyway. Weirdly my dad got it about a year ahead of me (we live in different countries. The hives wold pop p and down all day and night. Some things made it worse -red wine, getting too hot etc- but nothing was triggering it as such. Also got horrendous wheals from the lightest touches on my skin.

I saw a dermatologist who put me on a dose of Telfast which helped manage it really well. I pass out completely even with non-drowsy anti-histimines but not with Telfast. I used to periodically cut back my dose to see if it was gone and after about 4 years it was. It can go after about 6 months but it does go eventually.

Dermatologist did say certain anti-depressants can also help but I didn't get that far.

Cold, wet cotton wool helps soothe and Sudocrem was also marvellous.

hellymelly Tue 07-May-13 11:03:09

Yes, the initial doctor I saw said that a certain anti-depressant helps, seemed to be mulling over putting me on it, and then mentiones patch testing, but got no further. That was in clinical pharmacology, as my initial reaction had probably been caused by one or both antibiotics I tried, I'd been referred to them. Then I saw a consultant immunologist and he put forward the salicylate theory, but I am hating this diet so much, and finding it so restrictive, that I'd almost rather have hives. (in a cafe last week with family, all eating lovely things while the only thing safe for me was a bowl of boiled white rice and a skinned potato. I had tears in my eyes!
Realise I am super whingey in this thread, its been a really gruelling year and I am generally so stressed now, the hives have tipped me over the edge!

hellymelly Tue 07-May-13 11:05:45

Interesting about London, I had thought about the pollution and wandered why it wasn't worse there. Here I am in remote West Wales, a mile from the beach, clean fresh air, and my whole system is reacting. In london I got tight chested if the pollution was very bad, super hot July days for instance, but otherwise fine unless I spent too long with the dog on Primrose Hill when the back field was very high with flowering grasses.

hellymelly Tue 07-May-13 11:06:31

Getting into the bath makes my hives come up badly. I guess its the heat?

moonbells Tue 07-May-13 12:06:48

I have had intermittent hives since last October. Wretched things! I was getting up this morning and the pre-rash appeared (I get itchy red marks first, which then are the focus for the subsequent swellings) and I ran for the Telfast. By 7am I'd puffed up everywhere and by 8am they were gone again. I hate them! You all have my sympathy, as mine are bad enough and I only have a mild case!

Slipshodsibyl Wed 08-May-13 09:15:40

I get the impression you are reluctant to endure the side effects of anti histamines, so I just want to say that I am affected by them, even when they are supposed to be non-drowsy. Telfast, however is different, and I have been told it is the only anti-allergy medicine which pilots are allowed to use, so get that to start with and you will feel much better immediately.

buildingmycorestrength Wed 08-May-13 09:23:24

My friend had this and switched to a low histamine diet, and takes a background antihistamine daily.

Lorelei353 Wed 08-May-13 09:24:46

I agree. Telfast really are great.

hellymelly Wed 08-May-13 13:29:13

ok I will ask my GP about Tefast, or can you get it over-the-counter?

Lorelei353 Wed 08-May-13 21:14:38

I needed a prescription for it. Don't think you can get it otc.

MrsRogerSterling Wed 08-May-13 21:42:56

I had chronic urticaria after taking anti-biotics. It lasted years, I tried every anti histamine going. Telfast and Ranitidine gave the best reflief.

After being covered in welts and hives 24 hours a day for years I broke down in GP surgery and he put me on steroids, Prednisone and after a short course all my hives cleared up and apart from one short burst have never returned.

hellymelly Wed 08-May-13 22:11:21

Blimey, MrsRogerSterling, years? How awful for you. My GP gave me a topical steroid last time it was really bad (I had hives under my bra, very raised and unbearably itchy) but I didn't use it as the side effects were too scary. I have a neighbour who also had hives after antibiotics for a kidney infection ,I know hers took a long time to go but I'm not sure how long exactly. I googled Telfast and the side effects worry me. With the old fashioned kind I am dopey and have a headache the next day (I mainly take them at night as the hives are worst in the evenings), and with the non-drowsy type I am like a crack addict, shaking, panicky and unable to sleep or rest. Both bad but the latter the most unpleasant, I suppose all i can do it try it but I was in such a bad state last time (on Benadryl) that I am scared to ever take a non-drowsy one again.

CoteDAzur Thu 09-May-13 15:50:40

I had hives after antibiotics. They started in my scalp (I actually thought it was nits!) had their fun all over my body for about a week, then went out from the soles of my feet. Very strange.

I am feeling very lucky now. I don't think I would have lasted years of that!

I went to the pharmacy and had an antihistamine injection when the first urticaria appeared (thanks to years of experience with various allergies) and the last two days of that week were spent in hospital being treated for this, so maybe that made the difference?

Lorelei353 Thu 09-May-13 16:03:02

I suffered with mine for about 4 years too, although I managed it with Telfast so it wasn't so bad after the first 8 months (took that long to find a way to manage it).

hellymelly I react really badly to anti-histamines too. Just pass out and drowsy for days, even with non-drowsy ones. I first went on a normal adult does of Telfast which is one 180mg tablet a day. It did make me a little sleepy for the first day or two but no-where near drowsy levels of other tablets. Problem I had was that the effect only lasted 12 hours and then I was itchy overnight again. My doctor prescribed me the children's tablets, which I then took twice a day (60mg twice a day). Overall I was taking less, so I wasn't sleepy at all but it was enough to keep the hives under control. Might be worth investigating something similar?

Slipshodsibyl Thu 09-May-13 16:19:51

The histamine diet mentioned above sounds interesting but very restrictive. Hellymelly if you have googled and do not like the possible side effects and are unwilling to try, urticaria isn't life threatening - just put up with it. I assume you have also googled urticaria and are aware that there isn't any other treatment with fewer effects

worried90 Thu 09-May-13 16:23:57

I have cholinergic urticaria and dermographism. Saw a specialist in urticaria and trialled massive doses of antihistamine but no joy. I now take 4 x 10mg zirtek a day which helps about 10%. Had it for 17 years now but my only option is cyclosporine which I'm reluctant to take

hellymelly Thu 09-May-13 17:04:58

I hadn't thought of taking a lower dose, that is a good idea. Because I've been put on a mega-dose I assumed that it would take that to suppress the reaction. DH is cooking curry and I am starving... am not allowed any herbs or spices, not even pepper, and I'm pining for a decent curry. No tomatoes, no peppers, no aubergines, no cherries, plums, grapes, no most fruit in fact, or veg. Am allowed rice, and old peeled potatoes. Pears (must be ripe and peeled) and mango. Can't eat gluten and don't eat meat so its the most dreary and unhealthy feeling diet. Not sure if it is low in histamine but it is low in salicylate. Interesting that salicylates haven't been mentioned to any of you as a possible cause, the doc seemed certain that was the cause (+stress) in me. I am living on Marks and Spencer's gluten free chocolate muffins, omelettes, and vegetable soup with no pepper and v. boring veg.

hellymelly Sat 18-May-13 11:53:46

update- I went to my GP this week, he didn't really see the point of the low salicylate diet, but as I was told to do at least three months I will stick at it a bit longer and then start re-introducing things and see how I get on. GP gave me telfast, i haven't tried it yet as it can cause racing heart etc and I get loads of palpitations, so am a bit nervous of it, but i think i will try half a dose at first and see how it goes. I saw the GP as my chest has been very tight when the hives appear and I was worried it was asthma, my peak flow reading was 4. something, does that sound ok?

Waferthinmint Sun 19-May-13 08:15:45

I take fexofenadine daily.

MaryDownton Tue 16-Jul-13 10:11:39

Have husband with chronic urticaria. He's on double dose fexofenadine but doctors have just said to stay on antihistamines and it should go away but it's been more than 18 months! Now son, aged 10, has had hives for one week. Have heard that viruses can cause it but could it run in families? Don't know where to go for help?

JaponicaTroggs Tue 16-Jul-13 18:15:05

My chronic urticaria started in March, out the blue. I was on Fenofexadine, but found even with the higher dose of it, it would take at least two hours to kick in and I would have patches breaking through all the time. The combination that is working for me is Benadryl acrivastine (the one that works within 15min) and Zantac plus experimenting with and eliminating some high histamine foods from my diet such as strawberries, chickpeas, mushrooms, red wine and tomatoes, and avoiding ibuprofen.

I take a Benadryl at 8am, 4pm and 11.30 pm plus 150 mg of Zantac in the afternoon. It took a couple of weeks to kick in, but I am practically hive free at the moment and no drowsiness. I did experiment with dropping the bed time tablet and woke at 5 am with a lot of itching but oddly no hives, so I will keep to this as it's working for me.

MaryDownton Wed 17-Jul-13 10:02:18

Hi Japonica. Is chocolate another food that is high histamine and sets you back? Have you seen an allergist or dematologist for advice on diagnosis or medicines? Husband seems to have had lots of tests already which don't show anything and am wondering whether to try to see a specialist or not. Sorry to ask questions but only people with urticaria really understand what it is like to live with! Mary

JaponicaTroggs Wed 17-Jul-13 19:27:46

MaryDownton I had all the usual allergy/blood tests which all showed nothing. I saw the dermatologist last week, who told me there are no known reason for urticaria, it could go in six weeks or six years and told me to avoid high histamine trigger foods. She also prescribed some other antihistamines- levocetirizine and hydroxyzine but I have decided to stick with the benadryl/zantac as it is working so well at the moment.
Chocolate was a trigger food for me but it has been fine since being on this drug combination. I think it is just trial and error. Houmous is a definite trigger for me, and raspberries gave me the worst attack I'd ever had!

MaryDownton Thu 18-Jul-13 11:42:35

Hi JaponicaTroggs Thanks for replying. Will talk to husband about the different medicines and avoiding high histamine foods and see how things go. Let's hope someone out there is working on urticaria and will find out why one day! MaryDownton

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