Progress Update - more questions

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Hi all,

So I'm going into month 5 of CIU. The last time I posted I had visited an immunological who did allergy tests and confirmed no allergy.

He only wanted me to return if it was treatment resistant. On the whole the meds have helped most of the time, but it hasn't e Dr completely gone. I was given a salicylate free diet, noticed foods on there that have definitely been triggers for me. I have to admit unashamedly that I haven't followed any illumination diet religiously because just wanted normal life!

However, here I am again today off work because of bad hives and swelling! I have a few observations to put out there for comment by fellow sufferers.

Has anyone else tried or heard of Salicylate? Or has any success cutting it down? It's in so many foods & products! Also some foods low in Salicylate are high in histamine so once you've compared both lists you really are not left with much!!

A second thing I've realised is that my hives are really bad and treatment resistant in the lead up and during my period. I've only just put two and two together here and will be monitoring this now! My hives first came on after starting contraceptive pill, so I wonder if it's hormone related?! Anyone else found hormonal link?

So here I am again feel like I'm back to square one! I guess when all you want is relief it's easy to just take the antihistamine and carry on as normal! I haven't really been ready to acknowledge the fact that I need to make difficult and consistent changes to get answers!

Ps I'm going to go back to the gp to get referred back to immunogist given the fact that the tablets never completely resolve symptoms!

Thanks, Siobhan.

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16 Replies

  • Posted

    Hi Siobhan

    Estrogen changes can be a trigger for hives as my hives started about the time I came off HRT. I also had problems with my digestion system and particles of food were leaking out of my gut into my blood stream and triggering my immune system. I found this from a test my nutritionalist found for me at a private lab as GP aren't very tuned in to this problem. Your hives may not be triggered by food but I would suggest you keep away from processed foods, smoked foods such as fish and bacon and stick to very fresh meat and fist, fresh veg and fruit. If you live in the UK a specialist in urticaria called Dr Sabroe at the Sheffield Hallamshire is very good if you can get a referral.

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    • Posted

      Thanks Lorraine, I ended up being signed off work again and things have become out of control again and now hives don't seem to be responding to medication either. In light of this I rebooked to see the immunologist privately and have my appointment next week. Hoping they will be able to do something with me! I fell into a bit of a depression last few weeks but seemed to have turned a corner emotionally this past weekend. I know I have to find the strength to fight this! Xx
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  • Posted

    I agree with lorainne. I also have some gut issues with CU and no one was able to figure it out. Also many if not most people with CU or its broader category,CIU or AICU ( chronic idiopathic urticaria or autoimmune chronic urticaria) have no detectable antibodies. It is imperative that you find a doctor that takes your symptoms seriously, and takes measures to stop your hives in their tracks. This is because untreated, they get worse and you start developing cross allergies because your immune system is so out of control. In my case, I had CU for over 10 years but it never bothered me till 3 years ago. Even though those 3 yes I just pushed through the pain. I didn't start real definitive treatment until last month when my lactose intolerance went into overdrive and last week, I developed a shrimp allergy out of no where. I don't mean to frighten you but rather, I want to impress upon you how important it is that you sort this out and achieve remission asap. Bug your gp non stop about a referral to another immunologist or rheumatologist, research and bring your findings with you to your visit, break down doors if you have to but check this hives nonsense asap. I hope it all work out :-)
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    • Posted

      Thank you! My gps are t that understanding and here in Wales you can't be referred across health boards, so I am basically going private again to save waiting! I'll do another update in few weeks time! Let's see what immunologist has to say! It's been so so bad this last month! Xx
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    • Posted

      Hi Siobhan, get in touch with an organisation called PALS (Patient Advisory Liaison Service) hope you have a branch in Wales. They will help sort you out I am sure as I have used them to help people in my job. Your GP should be able to refer you to any Specialist in the UK but you may have to insist. A specialist I had in Hull referred me on to a CIU specialist in Sheffield with no problem. If you see a private clinition as you have indicated and you are paying! Ask them to refer you to a CIU specialist. If any of the above refuse get in touch with PALS or your local ombudsman. Our health service is in the spotlight at the moment so with some pressure you may get the referral you need.  Good luck.
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    • Posted

      Thank you, I am definitely going to put pressure on them and have a look to see if we have sane service or equivalent! It's crazy, here in Wales, Cardiff is a different health board to Swansea so they said no they won't do it. They wanted to refer me to a local dermatologist not an immunologist (that I had already seen privately), frustrating! But chances are with waiting lists I wouldn't be seen for a while so £ to jump que! Think should be reimbursed by nhs lol! Xxx
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  • Posted

    Hi Siobhan, my CSU and angiodaema started when I came off the pill last October. First bout of hives started 5/11/15 but after gp blood test they said I had very low oestrogen and peri menopause so put me on hrt, know it wasnt that which started the CSU as the hives had already started. Saw immunologist who increased my fexofenadine to 4 x 180mg each day. It didn't work and I refused to accept to try to get on with it so got second opinion from another immunologist. He added 2 x 10mg montelukast and pit me on low salicylate diet and did more bloods. Was free of horrible intense hives immediately I changed my meds and had no swelling fir 6 weeks. Tests showed I was vitamin d deficient and borderline autoimmune disease. Did more bloods which I await results and put me on prescribed dasunin 1600 units a day for a year for the vit d deficiency. I too have deviated lately from low sal diet and drank wine and I've had few hives. Have not been that good last 2 weeks as thought I was pretty much ok to eat and drink what I wanted but know now I can't. Last night the hives were worse and there were more of them and woke me up with hot itch etc. So today strict diet again and no alcohol. Just hope they go away again and don't keep getting worse.

    Before I got the second opinion I did low histamine diet and had to come off meds fir tests. It was the worst 5 days of my life. I had horrific hives and swelling and no sleep, anaphylaxis but refused to go to hospital as I knew the would if steroids and antihistamine so tests would have been pointless. The low histamine things made me worse - for example broccoli is low histamine but high salicylate. Olive oil is very high salicylate I had read was good for urticaria, I even rubbed it on my skin during the 5 days off meds which was very stupid - you would be shocked if you saw the photos! 2nd immunologist was and had nurse on stand by as I was breaking out, swelling up and tongue lips Tec wheezing while getting the prick tests done though all were clear as expected.

    Read up on vit d deficiency and get tested. Strongly believe it's hormonal too. It's only my 4th day on the vit d tabs so need to wait a few months to see what happens but will update on progress.

    Worried about the summer and going to Spain. Hope to not have hives tonight.

    What meds are you on?

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    • Posted

      Wow thanks Nadia! I am on 4x180 fexofenadine daily and 1 mautakaust at night, now it seems like they've stopped working though. I have tracked my period and symptoms at the time and I have realised I only ever get adegioma when I am on my period! How weird!

      Thankfully I am going back to immunologist next week, he is going todo further blood work and testing. I hope they can give me some kind of answer!

      With the salicylate, have you been told that you will ever be able to eat that food again? I like you thought yet after a while you could reintroduce them with some success if lucky!?

      I will update in few weeks! The hardest thing I am finding is the guilt I feel for being off work! I mormally have 1 sick day a year! But with everything added up I must have had about 2 months off!

      You've confirmed I fed need to stick to low sal diet! I know some food are triggers! Do you have to avoid any products, have you found a good body wash/shampoo that is low sal?

      Thanks for your reply! Xx

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    • Posted

      Hi Siobhan,  I am in Wales too!  Cardiff. 

      I also went privately (Dr El Shanawanny at the Spire) though I was referred to NHS but waiting list is SO long. 

      Dr S was very good  - re: low sal diet, he explained that it works for some and if there was no improvement after 3 weeks to forget it but I know now it worked for me.

      Yesterday I only had food and drink intake from list of allowed foods and had a warm bath (hot bath aggravates).  Slept the whole night through and had no hives or itch this morning.  I'm going to keep it up and reward myself on the weekend as he did also say that its OK now and again to deviate but to be careful.  Its a level thing so when you reach your intolerance level you will break out.  Also its not just one thing (I spent months trying to find out what the thing was but its lots of things which accumulate and cause the level to overflow).

      Re: products - when I first got CSU and angiodaema I went through all my things and threw out most personal care stuff and household products (though there are toxins in almost everything so its very hard to avoid them completely) so I use Carex Mild and Sensititive body wash (lilac colour) which is paraben free and ensure you don't use lots and rinse off really wlel.  Shampoo & conditioner was harder as they all have SLS and nasties but I have been using Liz Earle for the past week and so far so good - no itching but I think the tablets really help.  Just try to get parabnd free things and avoid the isothalines, sulphates, benzoates and SLS, heavily perfumed items as far as possible.  Ecover for washing clothes is good too.

      I have continued using my usual make-up but when I was really bad and had swellings I couldnt leave the house so didnt bother - in fact I couldnt really get dressed other than a light dressing gown as it was so itchy and burning.

      How long have you been on your medication?  Maybe an extra montelukast either at night or in the morning (I take 2 x fex and 1 x mont each morning and each evening).  How long did they work for and did it knock it straight away (it did for me but then I started getting one or two last week).

      Lady called lorraine recommened doxepin - on another thread ( see Kelly) which I will keep in mind if my tablets stop working and I need to go back to immunologist.  However hopefully if I stay on the allowed food and drink the dreaded CSU will go back to sleep.

      I get my results for the auto-immune tests he did last week at some point this week so will update then.

      Don't worry about sick leave!  Its not like you're at home having a great time!  I sent my boss photos and went into work one day because I felt guilty and promptly got sent home. 

      Hope all goes well at your appointment, stay in touch and let me know how you get on xxx


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    • Posted

      No way! That's who I'm seeing too! I saw him once already and he was great (I'm from Seansea!!) and will be seeing him again next week for further tests so I guess will be similar to you. My gp point blank refused to refer me as its across a health board but I'm going to be taking Lorraine's advice and put pressure on them, having said that the waiting list is very long so I'm not Orestes to wait!

      Thanks for the info on products! And I fed know that sals are a problem for me, but he told me not huge amount of point trying the low sal diet whilst in medication, but I think that's if it wasn't treatment resistant. The medication worked 90% of the time for about a month basically until my period showed up and everything went crazy again, and It hasn't been under control since then. Realising though that I must test the low sal diet even while I tablets, they don't seem to be working anyway so I should be able to notice improvements!

      Did you go back for further test because you weren't happy to take tablets and carry on, or did you have further tests because you wanted to get to bottom of it?

      I wish this site allowed photos!! Lol!

      I think some ppl without experience of it just think it's a rash, get on with it! But they have no idea how much it ruins your life!! Xx

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    • Posted

      Ha! My sister lives in Newton!

      I saw Dr Williams at Spire first and wasnt happy as I had got up to 4 X fex daily and there was no improvement at all, just got steadily worse,had the worst Christmas you can imagine and totally had enough of crying about it and looking so awful, even my mother and sister cried at the sight of me.  Lost loads of weight too so went for 2nd opinion. 

      I felt like i was poisoning myself with something but hardly eating, kept food diary etc.Dr S did more pin-pricks for food & common allergies and said pointless having the patch tests as wont show anything.  Only one that came up huge in seconds was the histamine.

      Dr S  said it was definately CSU and angiod BUT... I had gone there armed with things I had downloaded from websites and I argued my case and said that the only way he can diagnose that is if any possible underlying cause ruled out.  I had researched various tests and took those along too and basically gave him a list.  I had insurance so they covered costs.

      He agreed to them all and more and I got the results last thursday. He said he would ring me with results this week.

      I know what you mean about some people not understanding though - I had no idea so many peopled suffered and what you go through with it - takes over your life but you cant let it do that forever!  I refuse and if it means I have to take tablets to control it and be mostly OK then I will.  It is scarey the amount I pop every day though.

      You're in good hands with him though, he understands and really knows his stuff,  the nurses who did my bloods all said he was an amazing doctor, he made me feel more positive too.  xx


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    • Posted

      Newton! Beautiful! Haha! I know it sounds silly but I actually feel better knowing someone close by is going through the sane thing and seeing the same dr as I feel like I'm on the right track!! Sadly though I'm self funding and don't have cover, but the list you had or an idea of where to look would be really beneficial because I can cross reference it with the test he proposes next week. Did you get bloods done at the same time as your appointment? Did you have to fast at all?

      I'm happy for you to search me on Facebook (if you use it?!) and add me, or msg me, I'm Siobhan Parry, my cover pic is A wedding photo with me and my bridesmaids and profile pic is a selfie!

      You've def motivated me to stick to low sal, coffee and sweets are my big problems!


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  • Posted

    For me I always think it's telling that all of us with CIU relate it back to diet. For me a low-histamine diet works best and it took me longer than it should have to realise that alcohol (beer in my case) was a big trigger even though it temporarily numbed the itching. I had known wine was out for over a decade. Yeast is high-histamine too which might explain why some bread was ok for me and not others.

    In my case I've justed tested positive for the gut parasite Blastocystis Hominis and am being treated for that with Metrinizadole. It's been 7 days now and it's early to say, but I've had no problems with severe hives /itching since starting the antibiotics. There are a good few research papers showing links between Urticaria and that and also D. Fragilis and H. Pylori (the one that causes ulcers / IBS). From what I've been reading, it's worth gettting a full test for things like that and ruling that out, especially if you have IBS as well. I got my GP to do a H. Pylori test last year and it was negative. But then I got desperate after two solid weeks of hives, itching and insomnia on holidays and the following depression and bombing out of my job that I paid for a full parisitology test. I read one report that antibiotic treatment helps in a significant minority of Urticaria cases, so I wonder if stomach bugs like the above can sometimes be an issue. The science is a bit tentative yet though, but there was a survey in Allergy last year that showed 17 of 21 patients with one strain of Blastocystis Hominis (the most common European one) also had Urticaria. The finger has been pointed at H. Pylori quite a few times too, but the jury is out.

    I also got a test result back with high thyroid hormones so maybe there is some growing hypothyroidism problems there. If I was female and especially older I would definitely be getting tested for thyroidisms if I had urticaria, especially if you suffer fatigue, coldness, weight-gain despite diet.  I'm waiting for a test for thyroid antibodies to come back but a related antibody test was negative for me.

    Doxepin got me out of the worst suffering when it was awful, but do NOT use that long-term, it will only mask the problem and side-effects are awful. I'm only just returning to normal weight a year later. Going on SSRIs (Paroxetin, Sertraline, Fluoxetine) helped with the itching but irritated the stomach problems, made me hyper with Paroxetine and gave me migraines with Fluoxetine.

    Now, I find if the itching/insomnia flares, taking an extra Fexofenadine AND Propranolol at night (20-40mg) stops the itch-scratch cycle from going into the usual cascade of horror. I tried Propranolol after I read Dr. Chen's research on the itch-scratch cycle and the beta blocker does seem to stop that cycle for me. Won't stop the rash though, I'm not sure anything has ever stopped that. At best Doxepin and Fexofenadine might have reduced the rash. I tried Periactin once recently instead of Doxepin and it seemed to work similarly well to get rid of itching for me but wasn't as sedating or long lasting as Doxepin.

    I'm due to start Ciclosporin if the Metrinizodole doesn't work. I'll let ye know how that goes.

    If that doesn't work I'll look to Xolair, even if I have to pay to try it to see for a few months. I'm three years into this now and while it's much better than at the beginning, I'd pay anything to be rid of the itching / insomnia which plagues about 3 nights out of 7 for me.

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    • Posted

      Gosh, thank you for this info on your progress! It scares the life out of me that it can continue for years! I'm 6minths in, I was advised by go to take antidepressants because I was just so low with the impact of how much it's impacted on quality of life! But I seemed to snap out of it one weekend and decided not to. I'm currently off meds as I have appointment this evening for further test with immunologist. I am going to ask about thyroid and parasites. It's been unbearable last few days and has made me realise that the medication was doing something, even if it hasn't been completely controlling it. I've had major swelling of hands feet, throat and face as well as being covered head to toe in nasty hives and I've lost my voice?!! Can't wait to take my tablets later!!

      It helps to hear what other people are doing and the tests being done. It's just so shocking the impact this has and that there's no go to cause!

      Take care and good luck with results!

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    • Posted

      If you do go on antidepressants they aren't the worst, for one thing they actually dull the sensation of itch quite a bit, especially Paroxetin and to a lesser extent Sertraline and Fluoxetine. Sertaline helped a little in getting to sleep for me, Paroxetin made me hungry and woke me up early though. Prozac seemed gentlest.

      Earlier today, I read that Ciclosporin works for about 75-80% of people who don't respond to anti-histamines (that's me). It's similar but not necessarily the same people for Xolair. After that a low-dose course of of corticosteroids for a couple of months starting at 10mg down tapering down 1mg a week seems to work for most people. I suppose that is a pretty lowish dose and not too long and the side-effects could be managed. 

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