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Urticaria every day for a year!

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hanneke54158
hanneke54158

Allergic to anti-histamine tablets so what can I do?

When this first started my GP immediately gave me Fenofexadine... Yet the hives just got worse and worse! Eventually I realised it was the anti-histamine tablets making them worse. I used to wake daily with hands / knees / wrists covered in hives... When I started taking the anti-histamines I would then become covered head to toe for at least 36 hours. Luckily I took photographs as the GP initially disregarded my idea of being allergic! I eventually got my appointment at the hospital and saw a junior junior, who, despite my protests, prescribed me that same anti histamines.

I knew what would happen when taking them so I took one, took photographs or the reaction and waited for my three month follow up appointment - this turned in to a 6 month follow up - NHS! I saw the consultant this time and told him of my reaction to which he said he'd never seen this before and I'm going to refer you to our urticaria specialist. 8 weeks later I saw a consultant, not the uticaria consultant although he did pop in! Anyway, they basically said it isn't anything that we can cure but if you really want us to look in to finding a treatment to help ease you then we can!

Honestly! They were really hoping that I would say no, don't worry about it!

They prescribed me montleukast but this had no effect.:: I am now waiting for my follow up appointment - should have received it by now but as usual I am going to have to chase them up!

So what happens next??

I think I've noticed that drinking white wine makes them worse ...

I suffer terribly from hayfever and thankfully my GP was happy to give me the Kenalog steroid shot which has cleared my hayfever symptoms, and strangely, my hives have calmed down a lot too! Shame they can't keep giving me that shot through.

I just feel as though the specialists at Norwich aren't at all interested ...

1 like, 38 replies

38 Replies

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  • gracie8a
    gracie8a hanneke54158

    Posted

    Hi,

    I tried changing my diet to the low histamine type as well as paleo. I also started drinking alkaline drops in my water all day long and it's helped. I do realize that when I'm away from home they go away but the moment I go in my home they immediately come back. Push for the skin test...that's what my doctor is doing now. You can buy it only should you need to. True Test. All 5 doctors I saw said no to a skin test and insisted it was just the pollen. They all were not interested in helping...well, one of them said to try an internal medicine doctor. She at least seemed to care. Anyway, I went to Mexico to see a doctor there...he gave me Evastel Z, Calcort, and Atarax. The Evastel Z for 25 days once in the morning. The Atarax for 15 days once each night. The Calcort 1 pill every 12 hours for 3 days, then 1/2 pill every 12 hours for 3 days, then 1/4 pill every 12 hours for 3 days, then finally, 1/4 pill every 24 hours for 3 days. The reason for that is because of you stop taking it abruptly, the hives may ck e back and worse.

    I also found a rattlesnake oil body soap (Mexican product) to shower with and it soothed my skin.

    I hope you find some relief!

  • lorraine34338
    lorraine34338 hanneke54158

    Posted

    Hi, this is different to my CIU but there is a great Urticaria Specialist based in Sheffield called Dr Sabroe, she is very sympathetic and is, according to the dermatologist who referred me, the best in Britain, ask for a referral, she is really lovely and knows everything about our condition.  Also if you can see a Nutrionalist, I did and she helped sort my gut out.  You will need a combination of treatments to get it under control.  I found very salty water dabbed onto rash reduced the it and sometimes took it away.  Check for chaffing of clothes to avoid weals. 
  • marysa
    marysa hanneke54158

    Posted

    300 mg Raniditine, 10 mg Montelukast in the AM

    300 mg Randitidine PM

    this is the only thing that works for me, been suffering with Chronic Urcticaria for almost a year, since I was perscribed these medication in January, I've had only a few breakouts, and only on days I forgot to take my medication. smile

  • debolite
    debolite hanneke54158

    Posted

    Hi Hanneke,  I feel so bad for you.  I suffered for 8 months until I recently discovered that mine was actually an allergic reaction  to my down comforter which I purchased last December.  Anyway I did a lot of homework and this is what I found worked the best for me to get relief.  It also took an allergist to get me the combo of drugs.  My Derm doc only gave me topical ointments and creams which did nothing.  Twice a day I took..Doxepin, Singulair and Zantac.  Then Zyrtec every 6 hours.  When I was still having trouble I was given Prednisone also which did give me relief.  However as soon as the course of Predisone was over it came back requiring dtarting of the Predisone again.  The combination of the first 3 drugs blocks the H1 and H2 receptor sites.  Then the Predisone acts to lower your ammune system so you are not fighting yourself internally.  Hope some of this helps you and good luck in finding some relief from this awful conditon.
  • madeinholt
    madeinholt hanneke54158

    Posted

    To cut a long story short, a few days ago I had a very serious flare up (almost A & E) after a 4 year period of being Urticaria free. 4 years ago NNUH did not have much of an idea, so I see not a lot has changed there!

    Yesterday my GP prescribed:-

    30mg Prednisolone x once a day with breakfast for 5 days

    180mg Fexofenadine Hydrochloride x twice a day.

    I took my first dose of Prednisolone with dinner last night (to get the treatment rolling ahead of the normally breakfast dose time) and a Fexofenadine. I then popped a 150mg Ranitidine and 8mg Acrivastine 2 hours after dinner.

    During the course of the evening I went from looking like Hellboy, to something slightly less red and bumpy. After 48 hours of little sleep, I actually went to bed and when I woke up this morning I was totally clear - with just burst blood vessel blotches where the hives had been the worst.

    4 years ago nothing had worked that quickly when the symptoms were as severe. So for me it looks like the Prednisolone works more rapidly than Prednisone.

    In past couple of days I have also switched to only drinking mineral water and cutting out known high histamine foods.It will be interesting see what happens when my 5 day course of steroids ends.

    • lorraine34338
      lorraine34338 madeinholt

      Posted

      Do you know what triggered the flareup?  Had you been ill for instance.  My first bout started after a winter sickness bug and a bad cold and sinusitis.  The second again I had been ill but also I had come off HRT after being on for quite a long time, plus I had turned sixty and was depressed about that and the start of hot flushes.  I hope your medication clears it for you.
    • hanneke54158
      hanneke54158 lorraine34338

      Posted

      That's the thing ... I have absolutely no idea what triggered it! I just woke up one morning with them!

      We had just put our house on the market and trying to buy a new one, and i had just changed jobs so thought maybe stress but that was a year ago now and all sorted. Also now I am allergic to anti histamine tablets which I have always been able to take until the urticaria started! Baffling ...

    • lorraine34338
      lorraine34338 hanneke54158

      Posted

      You are going through alot of stress at the moment including not being able to control your urticaria which will make your hives worse maybe.  I cannot understand your allergy to anti-histamine.  Have you had comprehensive allergy tests? Probably not because you aren't seeing a specialist in urticaria.  See if you can bet a referral to see Dr Sabroe in Sheffield she is the top specialist for urticaria in Britain.  If she cannot sort you out I'd be surprised.  She works under NHS so the only cost to you would be getting to Sheffield.  Good Luck
    • hanneke54158
      hanneke54158 lorraine34338

      Posted

      Yes the anti histamine allergy is a new one on me too after years of taken them! Whether it was the high dosage I was given I don't know but now if I take even a 10mg tablet I'm covered head to toe!

      I was supposed to see Dr Grattan at the NNUH who is an urticaria specialist but when I went for my appointment I was seen by another consultant ... This has happened twice now. Despite having 6 month worth of notes and photos showing the anti histamine flare ups it really was a 'well if you really would like us to see if we can find something to help ease you but we can't find out what's causing it ... ' Promised a follow up appointment but that is yet to happen and that was 6 weeks ago now. I've only ever had the basic blood allergy test by my GP which didn't pick up anything.

      Strangely since having my hayfever steroid shot my hive have been rare... Coincidence or the steroid?!

      Thank you for your recommendation... I'll certainly try and get a referral. It sounds rare to find a consultant who is interested!

      Have you found relief now?

    • lorraine34338
      lorraine34338 hanneke54158

      Posted

      Yes, I was given 6mths of ciclosporine (an immune suppressant) plus taking antihistamine and Doxepin for the depression I got when my urticaria was really bad around xmas time.  I noticed a difference straight away with this medication.  My urticaria is not gone because if I get chaffing anywhere I get a flare up BUT it doesn't last as it used too.  I keep up with the antihistamine and doxepin and probably will longterm.  Both specialists I have seen have been sympathetic and understanding, I know I've been lucky. I'm sorry you aren't getting the service you deserve.  Dr Sabroe is really great, just to let you know she has her clinics on Monday afternoons at Sheffield Hallamshire. If you can get a referral make sure its to see her if you can.  From what I've been told by the specialists steroids are a quick fix but may not last I'm afraid to say although it might be different for you, I hope so.  Dr Sabroe mentioned to me about extensive allergy tests that can be done, l didn't need them but if the ciclosporin had not worked she was going to do them, so they are out there for you.  Good Luck!
    • madeinholt
      madeinholt lorraine34338

      Posted

      Been feeling amazingly well recently, possibly a bit stressed looking after our 1 and 2.5 year old boys - but my partner (she teaches) is on holiday at the moment, so my stress is considerably less.

      Our 1 year old lad did have symptoms of measles about 3 or 4 weeks after his vaccinations - this was about a week or so ago (GP said it was a virus).

      I woke up Tuesday morning with this same measle like rash on my chest and stomach and started to feel a bit aching and lethargic, then by the evening I looked and felt like I had been attacked by a swarm of hornets.

      I have an appointment booked with my GP for 17:00 on Monday as he wants to see what happens when I suddenly stop the 30mg Prednisolone dose (my last is Sunday morning).

      At the moment I am still 100% clear, although I am  getting a bit of a rollercoaster ride off the steroids.

    • madeinholt
      madeinholt hanneke54158

      Posted

      According to my GP - steroids should work, so probably the steroids in your hayfever shot are doing the job. What was the name of the drug you were given?

      I had another chat with my GP this afternoon to make appointment for Monday. We discussed 'worse case scenario', which will be another referral to NNUH to discuss the viabilty of a longer term but smaller dosage of Prednisolone - we know it works well for me. I am hoping this will not be the case, however I would be prepared to suffer the side affects of longer term steroid use rather than having Urticaria.

    • hanneke54158
      hanneke54158 madeinholt

      Posted

      I'm still waiting for my follow appointment at the hospital after seeing the consultant. Again it hasn't come through in the time frame so I'll be calling this week.

      Dr Grattan is supposed to be the specialist at NNUH for urticaria but twice I've supposed to see him and twice I've seen somebody else in Dermatology.

      The hayfever steroid was called Kenalog. I've got a few little hives on my wrist this morning but had quite an active day yesterday with things rubbing that area...

    • lorraine34338
      lorraine34338 hanneke54158

      Posted

      When my hives were at their worst any rough seam, hem, watch, earrings, necklaces, cuffs, bra (I couldn't wear one as it caused weals under my breasts that lasted days) caused a rash and I was at my wits end. My partner suggested dabbing salt saturated water on my itchy rashes and this did ease the itching.  I learned not to scratch any itches and I had some salted water at work ready if I needed it.  I also started turning underwear inside out so seams were not rubbing against my skin.  I spent hours sewing soft tape/ribbon along the seams of my clothes, along the arms of dresses, t-shirfts, blouses etc and inside legs of trousers.  Every garment I want to buy I run my fingers along seams to see if its smooth.  My advice is to avoid wearing any garment that might have a scratchy feel to it.  Cuffs of clothes need to be wide not tight.  I also had a problem wearing shoes and socks.  My lovely bloke suggested applying silicon cream/silicon lubricant to the areas were my clothes chaffed and I renewed this before bed for when I slept as I had been waking up to itchy rashes in these places where my legs and arms had been next to each other, this worked well and I still am doing this even though the medication I was prescribed has worked and at present have no hives, I do it as a preventative.  Do try this I can guarantee you'll find ease.
    • madeinholt
      madeinholt hanneke54158

      Posted

      Kenalog is Triamcinolone acetonide (a long-acting synthetic corticosteroid) it is supposedly 8 x more potent than Prednisolone. I would put money on this being the reason your CSU is currently in check!

      Dr Grattan is the specialist I saw a couple of times, 4 years ago.

    • hanneke54158
      hanneke54158 madeinholt

      Posted

      gulp ... I haven't had steroid treatment for hives yet and I've seen so many reports saying that steroids cleared them for 24hrs but they come back a lot worse after!

      Worried now!! I had my shot about a month ago now ...

    • hanneke54158
      hanneke54158 lorraine34338

      Posted

      Ah that's a good idea as I too wake up with red patches where my knees have pressed together whilst sleeping! Likewise re the bra and skinny jeans are a no go if i want to walk far!

      Unfortunately it ruined a ski holiday for me in March also as the hives on my legs from where the ski boots had rubbed just became worse and worse to the point I gave up as it was simply too uncomfortable!

      Just be nice to know the cause ... Why did this thing just suddenly start and why aren't GPS and consultants interested in investigating it more?

    • lorraine34338
      lorraine34338 hanneke54158

      Posted

      GPs are only 'general practitioners' they should, if they not too full of themselves, refer people with difficult problems to specialists.  Specialists, if they are not too full of themselves, should refer to other specialists who have investigated the patients symptoms more fully and has the patients illness/disease as their main focus.  Alas this does not always happen!!
    • madeinholt
      madeinholt hanneke54158

      Posted

      Looks like your hayfever treatment has also tackled your hives : ) Might be an idea to discuss this with yor GP!

      How often do you have the hayfever injection?

    • hanneke54158
      hanneke54158 madeinholt

      Posted

      Maybe! I've started to get a few more hives on my hands / wrists this week but maybe that's the injection wearing off?

      I got the injection about a month ago but forgot to ask how long it would last re the hayfever. I haven't had the injection before so I don't know if they'd even give it to me again.

      When you've had steroids in the past, does it clear you out for a short period and then they return?

    • wendy62425
      wendy62425 lorraine34338

      Posted

      Hi Lorriane

      how many mg of Cyclosporine were you on during the 6 months you were taking it?  Did you start low then go to higher dosage?

      thank you

      Wendy

       

    • lorraine34338
      lorraine34338 wendy62425

      Posted

      Hi Wendy

      I was put straight onto 100mg.  As it worked almost straight away there was no reason to up the mgs.  After six months I was slowly weaned off them to make sure my urticaria didn't return. So far so good, but I am still taking antihistamines and doxepin and specialist is ok with that.

      Regards

      Lorraine

    • madeinholt
      madeinholt hanneke54158

      Posted

      Hands and wrists is where mine started again once the effects of the steroid dose wears off.  I know steroids are bad but at least you know there is a quick fix if things get really unbearable : )

      I am now clearing my post steroid mini-outbreaks (on just hands and wrists) with 180mg of Fexofenadine(twice a day), 150mg of Ranitidine (twice a day) and 4mg of Chlorphenamine (upto six times a day).

      Reacting to Fexofendaine tablets, as you do, has been documented before. I would have a chat with a nice GP and see if it is available in another form, perhaps it is something else in the tablet that causes you trouble.

      Here is a list of what else is in a typical Fexofenadine tablet:-

      SILICON DIOXIDE  

      CROSCARMELLOSE SODIUM  

      HYPROMELLOSE 2910 (6 MPA.S)  

      FERROSOFERRIC OXIDE  

      FERRIC OXIDE RED  

      FERRIC OXIDE YELLOW  

      LACTOSE MONOHYDRATE  

      MAGNESIUM STEARATE  

      CELLULOSE, MICROCRYSTALLINE  

      POLYETHYLENE GLYCOL 400  

      POVIDONE K30  

      TITANIUM DIOXIDE

    • hanneke54158
      hanneke54158 madeinholt

      Posted

      Thank you madeinholt... Yes I have some children's liquid antihistamine to try but due to the reaction that I've had to Feno, Piriton, citreteze ( spelt wrong!), I have been a little reluctant to give it a go until I know I have 2 days where I don't need to leave he house!

      My consultant mentioned giving me some steroids for emergency use so if I ever get my follow up appointment I will ask for these.

    • madeinholt
      madeinholt hanneke54158

      Posted

      Also.

      GP put me back on steroids as I had another outbreak even at four times 180mg daily dose of Fexofenadine and the others. Started on 10mg of Prednisolone for 5 days and now on first day of 5mg (with antihistamines still) and all is OK. Had some more blood tests done and have an appointment at NNUH on 15th.

    • hanneke54158
      hanneke54158 madeinholt

      Posted

      Hi. I haven't tried the liquid anti histamine as yet as I think the hayfever injection has kept them at bay. This week they've started to come back on my hands in the morning so I will see how it goes.

      Sorry to hear that you've had another breakout but glad the steroids are helping. If only they could find the source!!

      Glad to hear that you've got your appointment through ... I'm still waiting. Going to call them this week as it's been 8 weeks since my last appointment and the consultant promised I'd see her again within 6!

      Good luck

    • hanneke54158
      hanneke54158

      Posted

      Actually I just checked and my last appointment was 9 weeks ago! They're just not interested and it's sad that we have to chase them to try and get help!

      My left hand is quite bad this morning... So assuming the hayfever injection is wearing off. I'm reluctant to take the liquid anti histamine until I have a few days where I can be based at home in case I have the same reaction as I do to the tablet form!

    • lorraine34338
      lorraine34338 madeinholt

      Posted

      Had to respond.  You need to see a specialist in urticaria, taking steroids constantly is going to mess your system up and when you stop the course you are probably getting rebound, ie coming back worse than before. GPs are what they are general practitioners, it needs a specialist in this area to prescribe properley. Try to get a referral to Dr Sabroe, Sheffield Hallanshire Hospital Dermatology Department. She is the foremost in UK on Chronic Urticaria.
    • hanneke54158
      hanneke54158 lorraine34338

      Posted

      I have been seeing a specialist at the hospital! But they're not interested.

      The hayfever injection from my GP wasn't for hive treatment. It was for very bad hayfever. Since my hives started I now react badly to anti histamine tablets hence the need for the injection to help my hayfever symptoms. Just so happened that it helped the hives.

      I am still waiting for my follow up appointment with the specialist 9 weeks since my last appointment.

    • lorraine34338
      lorraine34338 hanneke54158

      Posted

      The first specialist I saw when I got my first bout of urticaria was absolutely horrible, shrugged of my problem and didn't appear to care. When my second bout happened I asked to see a different specialist (I could do this because I paid to go privately). He was much better understood my condition and was not afraid to admit he specialised more in ezcema and psoriasis than urticaria and referred me to Dr Sabroe in Sheffield who DOES specialise in urticaria. He did help better than the first one by putting me on cyclosporine and doxepin which kick started my remission. Dr Sabroe only does NHS patients and there might be a waiting list but your GP shouldn't refuse a referral and if that happens get on to PALS an organise that advocates for patients if they are not happy with their GPs you can can info on them on-line. Good luck
    • madeinholt
      madeinholt lorraine34338

      Posted

      Now on 4mg of prednisolone for 5 days and stepping down 1 mg every five days until they stop working. I had a day break during the 5mg dose period and the hives came back on my hands and wrists. A 5mg dose cleared everything within a few hours. At such a low dose steroids are not quite as scary as you think. I am not having any of the side effects I got with the 30mg dose. According to research, the risk of side effects significantly decreases as the doseage is lowered.

      I have to wait to until 15th to see a specialist so until then I can only rely on my GP for prescriptions. I have had lengthy discussions with my GP and I have suggested a trial on Omalizumab but my GP says this has to be prescribed by the consultant. Until then both my GP and myself are happy for me to continue with a gradually decreasing prednisolone dose, as it is keeping me hive free : )

       

    • hanneke54158
      hanneke54158 madeinholt

      Posted

      That's good news! Finally got my hospital appointment date through ( this is the appointment that should've been within 6 weeks of my last appointment which was June 19) and the appointment is at the beginning of November!!! Maybe I should see my GP re some pred as the hives have been quite bad lately and I don't think that I can wait until November!
    • madeinholt
      madeinholt hanneke54158

      Posted

      You should definitely speak to your GP!

      I had my confirmation letter through from NNUH and my appointment on 15th is now with Dr. E. Tan and not with Dr.Grattan as requested. A quick check on google reveals Dr. Tan specialises in skin cancer!?

      Is your appointment with Dr.Grattan? More googling reveals Dr.Grattan has over the years (and very recently) worked very closely on Urticaria research with Dr.R.Sabroe (who Lorraine speaks very highly of).

    • hanneke54158
      hanneke54158 madeinholt

      Posted

      No my previous two appointments should have been wih him but weren't. First was with Dr Shah, second was with Dr Marrouche although on that appointment Dr Grattan did pop in but didn't really suggest anything. He did say they could give me some steroids for emergency use but now my appointment is so far away I don't know what to do. Hence now I might see if my GP can give me some steroids... Today is the worse day I've had for quite some time and has me in tears! Which frustrates me!!

      My next appointment is for a placebo test as I don't think they believe me that I now react to anti histamine tablets despite the photo evidence!

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