Has anyone found a treatment to help chronic urticaria?

[CarolBrownsBus]

Hi everyone, has anyone found any treatment that helps with chronic urticaria? My mum has been suffering daily for over a year now, she has several diagnosed allergies so avoids all those triggers and is also eating a low histamine diet with no sugar (only one piece of fruit a day) and not much salt.

Temperature changes can also trigger the hives as can exercise. They have taken away all quality of life and she is in constant pain and discomfort.

She can't sleep and also suffers from them constantly weeping. She has had antibiotics incase of infection but it makes no difference.

We found out that acupuncture can help but she has a metal allergy so this wouldn't be recommended. She's absolutely desperate for some relief and the healthcare professionals don't seem to know anything about it (dermatologists).

If anyone has any advice I'd be really grateful. Thanks

Can you get a referral to an allergy/ immunology specialist? If dermatologists can't help, they might be able to.

My DH has chronic idiosyncratic urticaria. He went for the allergy test and the whole strip of skin with every test section flared up. They basically said that he was showing an allergy to everything they tested him for. Quite often skin/contact allergy tests can be useless for this as the process of the test itself can cause a flare up. So might be worth seeing someone to check and update her allergy list.

He’s on Telfast Fexofenadine tablets and gets a huge tub of emollient cream on prescription. The tablets help greatly and the cream just calms the uncomfortable areas. DH saw a specialist at the hospital for diagnosis and he recommended the tablets.

He’s had it for probably around 10 years, although the first 5 were the worst and nowhere near your mum’s severity. It was worst when we were younger. I think this was due to his job (retail that involved moving dusty boxes and handling fruit/veg daily which we think aggravated it) and also our old house which was a bit damp. Since moving and getting an office based job the instances of flare ups have dropped dramatically.

At his worst he tried to avoid having showers as the body wash/shampoo would leave him covered in hives and miserable. I really feel for your mum as there is very little information or guidance out there.

From our experience I would say try looking at environmental factors that might exacerbate it. Try switching brands of washing powder, tumble dryer sheets, shampoo etc anything you can think of that touches the skin or lingers on it. Even if these changes won’t cure it, they might make it more manageable.

It really impacted DH’s quality of life so I can’t imagine what your mum has gone through. The specialist did say that most people have really bad flare ups to start with but it lessens over time. We’ve found that to be the case, albeit at a much slower pace than we’d hoped.

I hope you’re mum finds some relief .

Thank you @Anotheronetwo I think an immunologist would probably help as it's like her body is just attacking everything. It's taken her so long to even get a dermatology appointment even though she saw them regularly with eczema but it might be worth seeing if there's a waiting list she could get on.

Thank you @MrsLeclerc that's such an informative message. I've never heard of Telfast Fexofenadine before so that might be something to look into.

She's had eczema all her life but the urticaria is a recent thing so already uses all low allergy washing products etc So unfortunately no changes like that will help.

It sounds like your husband really suffered too, it's such an awful condition as people think you're just a bit itchy but it impacts so much.

What kind of specialist did your husband see in the end? I'm so glad to hear his has improved a little, I bet dust was a massive trigger. I hope he continues to get better

Thanks @CarolBrownsBus. It really does impact so much of your life.

It’s interesting that you said it’s like her body is attacking everything. DH rarely gets common illnesses and if he dies they last 2-3 days max. His body seems to have a really heightened response to any and everything.

I’m not sure which type of specialist it was unfortunately. He got a referral for the allergy tests from the GP to the local hospital’s Immunology clinic.

The hospital contacted a DH a few months later and asked to interview him for a study they were carrying out on the condition. So rightly or wrongly we assumed that it was pretty rare and that they were a bit more aware of it at our hospital as they were already researching. This was 10 years ago now so not sure what the current system is like.

I really hope that she can see someone who has experience with this. The tablets worked wonders for DH. He only takes them now when he feels a flare up starting which is rare. Good luck to your mum.

fexofenadine in combination with Zirtec or another antihistamine. Along with montelukast, and for a while, ranitidine (an H2 receptor inhibitor - that one has been discontinued, and I've yet to find an alternative, but so far with the others I'm coping, now that it's settled down).

I take 180mg of Fexofenadine 2x a day and also have a cream to apply. Sometimes the urticaria goes further to anaphylaxis so I also have epi pens.

Was refused a referral for testing, they would prefer to treat rather than find out the cause!

Strange question but has she had her vitamin d levels checked? My immunologist thinks mine was related to very low vitamin d levels, after a loading dose I'm on a daily high level forever. Before I was on fexofenadine, loratadine, certrizine and steroids to keep it at bay

Yes - I get a bout chronic idiopathic urticaria every couple of years. It used to last months. I tried umpteen antihistamines, nothing touched it. Tried elimination diets, no luck. I finally saw a specialist who recommended taking ranitidine (aka Zantac, which is an indigestion tablet) alongside the antihistamine (Cetirizine). Within an hour of taking the first dose, the urticaria was gone! So now I start taking it as soon as I get the beginnings of urticaria and it heads it off.

I looked it up online and apparently there are other histamine receptors in the gut, and normal antihistamines often don't touch them, but it was discovered that ranitidine does (as an unintentional side-effect alongside what it's meant to do). Weird.

Wow thanks so much for all the information everyone.

It's interesting that you mention fexofenadine too @Thimbleberries and @penpotted. She's allergic to dairy and lots of tablets contain lactose so will check that out to see whether they're lactose free.

Sorry to hear yours can develop into anaphylaxis penpotted, that's so frightening. And how frustrating that they refused you a referral.

@imnotalpharius it's interesting that you've mentioned vitamin D as she's just got some as this has cropped up a lot in the things we've been reading. She's going to start that so fingers crossed it might make a difference.

@MrsLeclerc it's really funny that you mentioned about your husband rarely getting common illnesses as things like colds seem to pass my mum by too, the immune system is obviously always heightened. I think you're right that it's really rare, there doesn't seem to be much knowledge.

@lazylinguist That's amazing! What a result. Thanks so much for sharing, fingers crossed it's lactose free as she'd definitely want to give that a go. So glad you've found something that works for you, what a convenient side effect!

@CarolBrownsBus if you google NICE guidelines for urticaria it lists all the possible treatments

This is my list

Have tried

Ceterizine up to 40mg
Propranolol worked for 2 weeks then stopped
Piriton
Ranitidine as h2 inhibitor
Montelukast
Ketotifen
Loratidine
Fexofenadine
Chinese medicine
Homeopathy

I've just started on Xolair injections as I now can't even go for a walk and I've had this 24 years

I've just (as in collecting tomorrow) been prescribed montelukast- I currently take 720mg of fexofenadine but the rash, burning and itching is coming back with vengeance. I've seen a dermatologist and was referred to immunology- fingers crossed something helps.

This is what I get

I'd suggest she checks what she's wearing, if she hasn't already. I can't wear synthetics, not even viscose.

Thank you @Blushingm that looks so sore and uncomfortable for you. I hope the new medication is helping. Are you in the UK? Neither of those have ever been mentioned to my mum.

@PickAChew thanks, she can barely tolerate cotton :/ sorry to hear you're suffering too.

Yes I'm in the uk. So far still flaring

Hope your mum finds something

Immunology referral.

It is rarely due to specific allergies but a general overdrive of the histamine cells. I never found out what if anything had caused mine, I never avoided anything, had it for several years and then it disappeared as mysteriously as it arrived.

I sometimes get it back for a while even now 20 yrs on.

At the time I had 4x fexofenadine + 2x loratidine but I don't think combining them is current treatment, instead you add montelukast or H2 antagonist - more usually used for indigestion. For severe cases there are even fancy immunological therapies.

Actually I found this v helpful treatment pathway for GPs to use before referral which shows there are lots of options, and what to expect in a specialist clinic:

www.lambethccg.nhs.uk/news-and-publications/meeting-papers/south-east-london-area-prescribing-committee/Documents/Clinical%20guidelines%20and%20pathways/Urticaria%20Treatment%20Pathway%20FINAL%20Dec%202018.pdf

I used to turn up to work covered head to toe in it and scare off all my patients. It does typically happen with ezcema so being obsessional about skincare is really helpful - I remember thinking I'd have a nice bubble bath and leaping out wanting to rip my skin off

Many patients have asked I'm ok too!

I've had an urgent immunology referral made so just waiting now

Here is my before and after Xolair so far

That's amazing! I'm really hoping to try it because the montelukast doesn't seem to have made a difference so far

Sorry, I've only just seen your replies, @AnnaMagnani thank you so much for all the detailed information, the pathway is particularly useful. She's finally been referred for hormone tests, there doesn't seem to be an immunology department at the hospital she has been referred to which seems to be what would be key to starting to get to the bottom of everything. I hope your flare ups don't come back too frequently.

@QueenPawPaws that's incredible!!! How long did it take to have an effect? Have you experienced any side effects?

@Blushingm I hope your referral has come through. It's so awful to live with.

I'm still waiting - on prednisolone now too but it can't be long term - it's driving me crazy

It’s interesting that PPs have said ranitidine - I had chronic urticaria, and in the end my lovely GP took pity on me and agreed to try something we read about online; h pylori treatment. I believe it was a combination of antibiotics, and a proton pump inhibitor. It was only a short treatment (maybe a week or two), but in my case it seemed to do the trick.

I still get the occasional small flare up, but it goes quickly and is nothing compared to the years of hot, itchy discomfort.

I just came on looking for information about this. Dd (18) has been suffering for several months including waking up with a swollen face alongside hives. It's awful. We haven't found a cause (she's had allergy and blood tests) except that she is under a lot of stress in her final school year. The last doctor she saw suggested Xolair (we're not in the UK so different health system). @QueenPawPaws how are you getting on with it? Dd would have to have a monthly injection for six months. I'm a bit concerned about side effects, short- and long-term.

This thread has given me some other ideas. Maybe the immunologist should be our next option. I would rather she tried a different antihistamine regime first before the injections. At the moment she takes a cortisone if she has a particularly bad episode, which isn't ideal.

Has she considered a trial of a DAOFood supplement for DAO deficiency? Lots of histamine intolerance people find them helpful. Might be tricky to find one she can tolerate. The low histamine diet is not a good idea long term if too strict because it compounds the nutritional deficiencies (and tends to give people food anxieties). Some people have the gene for these disorders, some have an undiagnosed underlying issue like a mast cell disorder or deficiency. Personally I have had it during adolescence and menopause so seems to be hormone related. Thankfully its eased a bit now.
www.imd-berlin.de/en/special-areas-of-competence/food-intolerances/histamine-intolerance.html?fbclid=IwAR34zp3LTC6kbybixKWIFLhjBdIujvfgx3IsyqfhHpb3S9vQ_49Omhz9ZDk