Urticaria & Alkaline Drops - Help!!

Skin, nail and hair health
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Hi All,

I am hoping someone can help. I've been doing some research, and thankfully, I am quite glad I am not the only one with this condition! My family and friends don't understand the stress and pain that urticaria causes. I am 23 years old, living in Scotland. I was intially first diagnosed in April 2016. I have had facial swelling causing me to attend out of hours appt's and A&E. I have been on 7 prescriptions of prednisolone. I have visited dermatology (second follow up appt in Sept) and given fexofenadine which made no difference. I have tried every other antihistimene under the sun to no avail. I did notice Benadryll make a difference in the beginning however this soon stopped.

I was drinking around 5 pints of water a day, which started making a difference, however also now not helping any.

I am completely at my wits end. I feel down, ashamed and embarrased. I was diagnosed yesterday with an under active thyroid, and have been given 50mg of levothyroxine. I have to continue on this for 2 months before getting another blood test to possibly up my dose. With being on day 2, I guess I was hoping I would see a difference straight away but still have extremely itchy skin and still covered in red and painful hives.

After looking at forum after forum after forum, one thing that seems to be helping alot of people is alkaline drops. How many alkaline drops to you put in a glass of water? and how long does it take for this to have an effect? I am prepared to do this diet every day for the rest of my life if it means no longer having urticaria!!!

Any assistance is helpful.

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Dear Laura,

I wrote on this forum a while ago now to share my experience. I suffered for 5 years with chronic itching of the skin and angioedema under the eyes ! I could wake up in the morning and look and feel a 100 years old. Like you I scoured through the internet and tried different diets thinking that it could be allergies. Anti-histamines didn't work. It turned out to be my prolonged use of neat bleach. I was a total clean freak. It was entering my body through cuts in the skin and by breathing in the fumes. I don't use bleach now, well I do but I quickly run it around the toilet rims only, put the lid down and run out of the room. I always keeo the windows open. Bleach and other strong chemicls are lethal. I use essential oils to clean my house now and I haven't had an itch since. Maybe you should work out whether it is chemicals that are effecting you. My life was wretched for 5 years. Looking back what a dumb ass I was not to twig on to the cause of my problem a lot sooner. Chemicals have a lot to answer for. It can't harm you to try an elimination process. I hope you get well soon. All the best.

Love Page

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Hi Page,

Thank you so much for getting in touch with me. Funny you should say about the bleach/chemicals. We had got a new leather suite in March, and this had started in the April. After a few weeks it had dawned on me it could have been the suites causing it, as I kept complaining of a chemical like smell coming from them. Doctors and dermatology rubbished this claim and said it wouldn't be possible, despite every time I sat on it, the hives seemed to worsen. Since then, my mum and dad have taken the suites, and I have been 6 weeks without any sofa's as waiting on new ones, and still the problem isnt easing up any even though there is always windows and our patio door open. I was adament it was the sofa's, and still now I think they could have been the initial trigger.

Did you realise yourself it was the bleach or did you have any sort of testing? I will give this a try - I also like to do alot of cleaning, and clean with bleach chemicals, perhaps my other halfs turn to do the cleaning for a while now till I see if this helps any!

I am so glad you found your cause and are well again. Here's hoping I will have some luck too!

Take Care!

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This was my original post to Little Flower

Don't get too bogged down with reading lots of different stuff. You need to find your own cure, like I did. Good luck, Laura.

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PageRead1 Little Flower • 3 months agoDear Little Flower,

Do not use any chemicals to clean your home, especially bleach. Use diluted tee tree oil. I suffered for 5 years. Chronic all over body itching, even itching inside of body, eyeballs etc. Angioedema of the undereyes too. I stopped using chemicals and hey, all symptoms have vanished. My doctor never even asked me .... do you use bleach. I used to use it neat. Be careful peoples.

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That's great Page. At this point, anything is worth trying! I will certainly give this a go. I've tried cutting out certain foods that the websites say are triggers, cutting out perfumed products etc and nothing seems to make any difference.

Thanks alot x

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Hi Laura,

I did have testing initially for food allergies. The results were negative. Like you, you try to think of everything to find relief or the cure.  I decided to try a gluten free diet even though the allergies results were negative but my doctor told me to keep eating what I always ate. He told me, it is like trying to find a needle in a haystack. The trigger could be anything. Then one day, I was splashing the bleach around ... (I used to bleach the tea cups) ... it was quite a hobby. Bleach and I were best friends. I was telling my dad ... I can't cope anymore. I'm almost suicidal ...(not really but) ... . All of a sudden I said aloud, could it be the bleach and he said yes, it is really dangerous stuff and people have used it in the past during wars ... chemical warfare. I knew then. Also, I read somewhere that a man died bathing in Dettol. Dettol was another favourite of mine. I used to bathe in it also. I just loved cleaning products. I didn't use bleach from that day forward, only in small ammounts like I said earlier. I was completely cured. I also read that a couple died using bleach to clean their home. It took overpowered them and killed them. I don't know whether this is what has made you become ill, and it is an a miserable illness but I think it might be ... somewhere along the lines. Something is in your system and is getting in to your system from somewhere. My advice is, don't use any air fresheners and eliminate all chemicals from the home. My house doesn't smell. It is still clean. You don't need them. Keep me posted on how you get on.

Love Page x

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You are welcome, Laura.

That is why I am saving you the bother of going down the route of reading too much of what everybody else has to say as it can bog you down and it can become tiring, confusing and tedious. Just try to think about your own situation using logic. Anything in your house with a big fat X on it means ... DANGER. Keep me posted. I'm always here to talk if things don't improve. I was on my own. A problem shared is a problem halved. I'm here to help.

Love Page

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P.S

It could even be the washing up liquid you use. Get those rubber gloves on girl. Ha. I hope you find the solution.

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Hi Laura, I don't know about the alkaline drops but if you bath itchy areas in strong salty water you may get some relief. Look on line for low histamine foods and follow the guidance. Do not under any circumstances use anti-inflammatories (NSAIDS- non steroid anti-inflammatory drugs), these are aspirin, ibuprofen, diclofenac oral tablets. These trigger the hives. Unfortunately wine is a no no, along with beers and lagers, in fact go t-total until you are free from urticaria. From what you described you may have urticaria angioedema which is nasty and a referral to a specialist in urticaria would be a good idea. A lot of dermatologists are more familiar with eczema and psoriasis and have no experience of treating urticaria. The specialist dermatologist I had admitted he did not understand the condition and I was referred to a Dr Sabroe at Sheffield Hallamshire, she is a specialist dermatologist in our condition and appointments are made by referral from GP on the NHS. I was given cycloporine which is an immune suppressant which irked within two weeks. I was on it for six months and came off in a slow taper. You may have to be insistent about the referral as some doctors do not like to admit they don't know what it is or how to treat it!! Be firm with them, any problems google the Patient Liaison Advisry Service for your area of the country. Everyone who pays into the NHS has a right to be referred on, even to another area of the country. My specialist also prescribed Doxepin which is an antidepressant that has antihistamine and which calms your stress along with the hives, it really worked for me. I wish you luck and keep in touch on this blog.

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Hi Laura! I feel your pain! Mine developed in September 2015, and I am nearly at 12 months of suffering! I can totally empathise that most people have no idea how much this illness affects your life, relationships and mental health. Like you antihistamines initially worked but now don't seem to make a difference, I've also had a few short courses of steroids which gave me 1 weeks relief initially, then with each course decreased and always felt they came back with vengeance! I am currently on 4x fexofenadine (180mg), 2x mantelukaust (10mg) and tranexamic acid x3 (500mg) as and when needed for swelling. Despite all this, I have hives everyday and big flare ups around my period. These were prescribed by an immunologist I saw privately.

I started an elimination diet (RPAH) back in May after reading up about chemical sensitivity (initially Salicylate sensitivity after the immunologist have me a hand out about it saying it's common in people with chronic spontaneous urticaria). It is a mine field with a lot of reading to do and the elimination phase of the diet was very restrictive and tough! I also had to eliminate any household/beauty products that contained the known irritants- salycilates, glutamines, sorbates, sulphites and natural/synthetic colourings/flavourings. I was washing my hair with bicarbonate of soda! I looked rough! Haha!

Anyway it took 2 weeks for symptoms to die down, by the third week I was down to 5 hives a day which is the best I've ever been! I felt I was getting somewhere! I started the challenges where I reintroduced dairy, wheat and eggs with no issue. However I then turned 30 and was having a big celebration, my plan was to break the diet but be sensible then go straight back. I didn't do it though, unfortunately I was desperate to feel normal and totally overloaded on booze party food and carried on like this for a week! Just as it took time for hives to go down, it took a week for the flare up to build. And since then it's been out of control again. I'm gutted I didn't follow through with the diet as it's the closest I'd been to feeling great in ages!

I have started again and plan to do the whole thing properly which takes about 3 months. For me I feel it's worth it because I know it was arming, confirming for me that food chemicals and other chemicals in products were the main issue as well as stress.

You may want to look further into diet/chemicals as if you are sensitive they will all add up to tip you over the threshold. And unless you do an elimination it's virtually impossible to tell what's causing the reaction or if it is indeed food/chemicals.

I read a lot on the fed up au website and joined their Facebook page. I also have a link to the diet if you wanted me to share it with you.

I know nothing about alkaline drops and like so many people on here am baffled by what triggers this thing in the first place. Sorry much help there!

But the main thing is surviving through this without it getting the better of you and that can mean a lot of reading/research/testing, patience, self discipline and self care.

I hope you know you're not alone and that everyone here knows what a nightmare this is, I'm hoping you find the strength and support you need to get your resolution.

Best Wishes X

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Hi Lorraine,

You advised me back a while ago about the NHS referral, good advice as my GP has been reluctant to refer for ages and I am keen to be able to access the immunosuppressant injections. I have been battling for ages and quoting the nice guidelines! You've just reminded me about the patient liaison service (I'm in Wales so not sure if it's exactly the same) so I'll be back in that! Glad you posted as I completely forgot about this route and making a complaint!

It's good to know they work for some people! Do you know the side effects of the drug? Are there infertility risks?

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Hi Lorraine,

Thank you for getting in touch. It has been horrendous as you will know. I am really hoping that when my levothyroxine kicks in, it will all clear and that will be the end of it, but it takes 6 weeks for that to come into your system properly. My next dermatology appt is in September. This was a follow up appt after being given fexofenadine back in June - which I had my GP given me Artarax instead as this seems to work better. Hopefully he will be able to try give me something else should this not ease with my thyroid medication. Is the cycloporin harmful?

And of course, I will keep the blog updated with my new adventure of finding a cause

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Hi Siobhan,

Thank you for getting in touch with me. 12 months of having this?! dear, I'm at 5 months and losing the plot already haha! I do feel your pain with it all, I have cut down all food and drink in hope to see if that reduced it any.

With what your currently on, 4x fexofenadine (180mg), 2x mantelukaust (10mg) and tranexamic acid x3 (500mg), I have read in some forums with others on a group of medications like this. Does this relieve the itching but you still have the hives?

I am honestly prepared to do whatever it takes to find a source. If you don't mind, could you message me the link with the diet you are doing? I will keep you all updated with how it goes. Surely between us all trying different things, we should all hopefully find something that works?! (fingers crossed!)

Laura x

 

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Hi again, there are side affects that affect some people and you should check with your specialist if there is any contra-indications with other drugs you may be on. If you go on cycloporine you will have regular blood tests to see how your body is affected by it. I and another lady on the blog Wendy was ok on it but this differs from person to person

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Hi Laura,

I know I remember at the beginning being told don't worry it doesn't usually last more than a few months! I'm like HELLO! Lol!

At first the medication helped a bit, but now I still am completely covered head to toe and it does nothing for the itching which is what I find the worst part of it. I have no idea what I would be like without it so don't really know if it's doing anything anymore.

I've started washing of the coloured coatings of the tablets because of the elimination diet and will be interesting to see if this helps.

What I would say with food a drink is until you've read up on it all you'd be surprised how much healthy stuff you have to avoid! And I didn't notice a reduction of hives until 2 weeks into it which is why they say the elimination period should be at least 3 weeks. If you do react to food like I think I do then it builds up gradually and you can't expect to see results overnight which is often what we want naturally and what's lead me to give up before. But I am totally on this now and hopefully in 3 months time I'll be reporting big improvements. They also say you can have a flare up when you first begin diet so may get worse before it improves which is a signal you do have food/chemical sensitivities so you have to persevere.

I will private message you the details! I have learnt so much over the ladst 12 months!

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G

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Hi Laura

Ive been suffering with Chronic Urticaria now for a few years. Initially it was limited to my hands but over the past few months my arms and legs have been covered in hives.

The anguish it causes (mental and physical) is highly underrated. Moreover, it ravishes your skin leaving marks, which in my case, take months and months to even heal a bit.

I was on Fexo and steroids (pills and injection) and nothing was helping. I had a 150mg injection of Xolair (biological drug) and havent had a hive yet. Plus have been eating normally.

I am still on 4 x Fexo a day and weaning slowly off the Prednisone but the Xolair seems to be helping.

You need an injection every 4 weeks and its expensive but maybe worth investigating.

Good luck!

Vera

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Hi everyone!

Just want to give you all an update! So, I was diagnosed with under active thyroid, and was put on 50mg of Levothyroxine. This reduced symptoms slightly however it soon flared up again. I have since had a follow up blood test to see if my dose needs increased.

I also had my second dermatology appt. The doctor gave me cetirizine to take 3 times daily, and also Ranitidine to take 2 times daily (one in the morning and one at night alongside cetirizine) and I am finally free of urticaria!!! I started the medication on Saturday 24th, and so far so good (touch wood!). My skin still feels a bit itchy from time to time, however the hives have disappeared! I have a follow up dermatology appt in another 2 months so will see how it goes from there, however so far I am pleased with the results after a long time of suffering!

I would suggest anyone who hasn't been put on this yet, to ask your gp about trying it. There is no harm!

Laura x

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Its such a coincidence that you say you were diagnosed with under active thyroid because I was recently diagnosed with hypothyroidism. I also swell up in the face as well smh. Do you think maybe there's a lin between the two?