Chronic urticaria

[Nsmum14]

I've been suffering from chronic idiopathic urticaria since giving birth to my DS nearly 8 months ago.
I've been to the gp three times, they are utterly useless. Prescribe antihistamines and cortisone cream, which make it worse.
I just wondered if anyone on here has had something similar, for stories of what did and didn't help, and how you got through it.
I'm resigned to the condition, but also fed up!
Thanks all in advance.

I have this.

Have you had your thyroid checked? It can be a symptom and pregnancy can often impact thyroid performance.

Experiment with different antihistamines - loratidine does nothing for me but cetrizine hydrochloride does.

Aloe Vera gel (after sun) works wonders at easing the itch.

Thanks TheOnlyPurpleLlama. I think my thyroid was checked as I kept getting enlarged red blood cell results postpartum, everything came back normal eventually including the red blood cells.
I'll have a go at different antihistamines.
Also the aloe vera.

Do you take any other medication, prescribed or over the counter?

I had six months of hives that drove me to the edge of insanity. Honestly, that's true, i had had breast and lung cancer prior to this, but that six months of hives that hit me worse.

After six months, I read the small print of a new inhaler id been prescribed nine months previously. Yep, hives was a " rare" side affect. Changed it, with GPs blessing and it started to improve almost right away. I cannot tell you how many PJs and bedding I through away by scratching in my sleep until I bled

I had it from 17 weeks pregnant with DC2. Triggered whenever there was a temperature change, eg getting out of bed in the morning. Piriton kept it under control after the first few weeks, so can’t have been as bad as yours. I knew about it if I was late with the tablet. It went gradually, gone by the time DC was about 18 months.

Sometimes now if I’m out in the cold I feel my lips tingle and start to swell but that’s it.

What anti histamines have they given you?

I had a random few years with urticaria and it was quite frankly, hell. Nobody ever found out what it was, normal otc anti histamines didn’t seem to touch it like piriton but fexofenadine hydrochloride (I think that’s what it was) annihilated it and I could forget I had it.

I'm on prescription Levocetirizine and normal ceterezine for urticaria. (Sorry about the spelling).

I previously tried fexofenadine but it didn't help. You need better antihistamines from the GP or a referral to an immunologist.

You have my sympathy, it's really horrible!

I had this. It’s hell. Still no idea what triggered it but it came with random swelling of my tongue/eyes and once throat which was absolutely terrifying! GP was useless - I had a few courses of steroids but it always came back when I stopped taking them. In the end I went for a private appointment at an allergy clinic that had a urticaria specialist (I did lots of research) If you are in or near to London then I would recommend him. It obviously wasn’t an allergy but that’s the route to go down. He diagnosed chronic urticaria and put me on a very high dose of antihistamine and ranitidine, and I was then transferred to the NHS clinic. It took a little tweaking but the combination of meds worked after a few weeks, and over lockdown it completely disappeared. Was so random and I had so many blood tests to look for a cause and they couldn’t find one. My next option was Xolair which is an immune suppressant injection - lots of people swear by it. But in the end I didn’t need it. Am always expecting it to reappear. It’s so horrible, poor you

Apparently women are more likely to have it than men, and hormonal changes can trigger it (which makes sense if it came on when you had a baby) but in lots of cases they never figure out what causes it. I was told to avoid ibuprofen based medication as it can make it worse.

I had this many many years ago, 8 or so. It lasted around a year, I could run my finger against my skin and it would rise up into a huge welt. Towelling off after a shower was not fun! I was diagnosed with chronic urticaria and took antihistamines daily. Eventually it went away as quickly as it came on, it’s thankfully never returned.

Oops sorry, it wasn’t just antihistamine and ranitidine - i was also on montelukast, which I think is usually an asthma medication. Anyway, that combination worked for me. There’s a good Facebook group as well which I found helpful, I think it’s just called Chronic Urticaria. Good luck!

Stay well clear of anti-inflammatories (eg aspirin, ibuprofen etc) as they can make it worse.

A low histamine diet got rid of my chronic urticaria. I now only get the odd hive here or there.

My daughter has this (along with a variety of other issues) I would strongly advise you request a referral to a specialist dermatologist. No offence to GPS but they know a little about a lot of things. If they have tried antihistamine and cortisone then that is pretty much the max of their ability in the community unfortunately. You need a specialist to take things further.

We are now on a former chemo drug to help control things but that is after 5 years of fighting and passive care.
.Good luck OP

My partner has this. It started suddenly last summer when we had a hot spell of weather

If was agony for him fir about 2 months

He still has it and takes antihistamines daily although its manageable

GP didn't seem able to help

I had this from about age of 15 to birth of my first child in my 30s. Never any answers found. I think it was hormone related. Neoclarityn was the only antihistamime that worked for me. I had hives, also welts that reacted to touch and change of temperature.

Thanks everyone for your comments, it is encouraging to read that for some it just went away one day, I had been hoping it would be the same with me.
The reason I have been reluctant so far to trying different antihistamines is I'm still breastfeeding my baby. If hormones are sometimes the cause it imagine it could even be the breastfeeding hormones that are causing it.
I'm not near London (in Scotland). Will see if I can get a dermatology referral.
Thanks again for your help, just knowing I'm not the only woman that has this is helpful in a way.

@user1471453601 I don't take any medication no. So glad to hear you found the cause of your hives and they went away. I'm also very glad to hear you survived both breast and lung cancer. You have been through more than most ever will. Wishing you smooth sailing from here on.

My dd has this. Cetirizine 10-20mgs a day has helped hugely. Didn’t work immediately but after a month the rash was noticeably less often and less of her body affected. She still gets rashes but much better than it was

I am on 180mg of fexofenadine which does help. Ive been on the list for immunology at the hospital since Jan 2020 after having to go to a&e and have steriods. The list is 93 weeks long though so like 5 more months to go 😬. Have read all the online/most private 'clinics' etc arent any use really

Hi, I really feel for you! I had PUPPPS in last week of pregnancy and for 3 weeks after, hives head to toe. The only thing which stopped it was a week of strong steroids. I was breastfeeding and it was fine. A good anti-itch cream and oat baths. It's horrendous so I hope you get sorted soon!

Take vitamin D but get the best tablets you can

@Saltyslug thanks, I'm taking Solgar vitamin D. I also take quercetin which I'd read can be helpful.

@Nsmum14 just to say that I was breastfeeding my daughter throughout - she was older; 18 months ish when it started, but breastfeeding loads still, especially overnight. There are safe antihistamines that you can take. I took loratadine. And the other medication I was on was also safe for breastfeeding. The breastfeeding network has really helpful drug fact sheets re what’s safe. People in the states take xolair when breastfeeding - they are more cautious over here with that, but my consultant wanted to put me forward for it. The only reaction my dd ever had was when paramedics gave me an antihistamine injection because my throat started to swell up - it made her sleep through the night for once!

@ohpleasesleepbabysleep thanks!
I plan to breastfeed for a long while yet so this is good to know.
When younger I also had two episodes of anaphylaxis with out of control hives and got jabbed at the hospital, it is so scary isn't it?