Allergy to feclafenadine

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Well, I have been suffering really bad with my rashes for the past week, so much so my skin is scarred. Went to the docs and they said to increase my feclafenadine as there is nothing else I can have. I increased to two a day.

Last night i was rushed to hospital with chest pains and couldn't breathe. Found out I have a chest infection and had an allergic reaction to the antihistamines. I feel like im being fobbed off and back to square one! I am really not coping with these rashes as they are covering my whole body 😥🙇

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  • Posted

    Hello

    Are they hives or rashes?

    Best,

    Wendy

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    • Posted

      Hi Wendy

      I get both, starts of as a red rash then 10 mins later im covered in hives. I suffer 24/7 with them now.

      No sleep for 2 weeks now

      sad

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    • Posted

      Hi Sallyann

      im so sorry to hear you suffering with those hives...and more sorry that you are not getting the help you need.  I have Chronic Urticaria and suffered as you have.  The doctors tried me on MANY different medications including Xolair injections which helps many but unfortunately not me....so I was put on Cyclosporine slowly going up to 200mg (some do well with just 100mg) while going up in the cyclosporine the doctors added Prednisone with a very slow taper off (many months). Only going down 1 mg per week.  I am now down to 50 mg Cylcosporine (from 100mg that I was on for several weeks) and will stay on the 50 for Six weeks with the 4mg of prednisone.  This is done very slowly as to try to get me into remission.  I have been 

      hive free since August..I have had quality of life these past months....such a blessing!....hopefully I will continue to be hive free with the 50.  Where do you live?  I am in Virginia in the US.  I have a dear friend I have met on here she is in the UK and has a great doctor....or if you are near me I can share my doctor at Johns Hopkins.

      Always check on appointments for cancellations.....there are always cancels and you can get in earlier...I do that all the time.  You should try to see an immunologist doctor as many times like me my hives are due to an immune issue....probably caused by stress in my case as I stress too much in life unfortunately.

      There is hope.....hang in there.....we are here for each other to share.

      Best Regards,

      Wendy

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    • Posted

      Thank you so much for your reply Wendy, its good to know im not strange like people look at me.

      I am in the UK, so a few miles away from you.

      I have been on fexafenadine 180, had an allergy to that so switched to piriton, thats not strong enough. I have been on prednisone, that didn't help so im now going to take my first montelukast. Im currently sat with neat aquas cream on my legs to stop me itching as watered down soap does nothing.

      I think mine is temperature controlled urticaria, although not certain as my dermatologist appt is not until June xx

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  • Posted

    Hi Sallyann. The exact same thing happened to me. I had developed urticaria last August and was managing it with Piriton quite well. My GP recommended fexofenadine. I took a dose and had a huge adverse reaction, massive breakout of hives on my entire body. Lips swelling. Went to urgent gp and was advised to take the piriton again. It took 24 hours to settle.

    The point of this reply however is that I have finally identified the trigger to my hives/urticaria which turned out to be my contraception - the Mirena coil to be precise. I had it removed 9 days ago and am almost clear of urticaria. Not once in my trips to the gp and dermatologist did either question me on my contraception and I only made the link through my own internet research.

    Maybe its the same for you.

    Good luck.

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    • Posted

      Thank you for the reply, im not on contraception so it wouldn't be that for me. I think mine is down to temperature because the slightest movement brings me out in hives, from no heating to get one days rest, to putting a blanket over my legs I come out in hives.

      Im covered in rashes and hives as soon as I get out of a nice warm bed, I have just got back from another trip to the doctors to be told nothing they can do, I sobbed in his room .. My dermatologist appt is 3 months away

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  • Posted

    Hi Sally,

    To be honest, it doesn't sound like you are getting a good level of care from your doctor. You might be feeling fobbed off for good reason. What I would do is:

    Try Cetrizine at high doses, 2x, 3x upto 4x. In the survey's Cetrizine is one of the most effective, and only a bit drowsy.

    Then, get a more understanding and knowledgable doctor. You could probably go on a short-term Prednisone tapering dose to get you through to your appointment, starting moderate doses for a couple of weeks then tapering down toward your dermatologist appointment. Be careful of weight gain (watch your diet and weigh yourself weekly) and look into taking calcium supplements

    I'd get a pair of the soft gloves for night-time too, so that you don't claw your skin. You don't want scars or skin infections, the skin will itch even worse as they start to heal.

    If the Prednisone alone doesn't work, you could try the following (in order of strength), for relief:

    Hydroxyxine will help you sleep and reduce itching. If that isn't effective, try Doxepin at lowest dose which will MAKE you sleep without clawing your skin and actually made my itching go away, made me feel less anxious/hyper-aware of skin, but will make you very sleepy. You can't drive after that even till late morning. And don't drink alcohol with Hydroxyxine or Doxepin. Watch your weight if you take Doxepin.

    Just don't stick with Prednisilone as a long-term cure, it's a short-term patch until you can get onto Cyclosporine, Dapsone, Xolair or something else like that which will get to the root of the problem. If your dermatologist is one of the ones whose thinking doesn't extend past creams or steroids, then get a referral to one who specialises in Urticaria as soon as possible. It's more of an immune problem that a skin problem really and some dermatologists don't know anything about this. Equally some immunologists are useless too and can't see past allergy.

    By the way, if you are taking Aspirin, NSAIDS (ibuprofen), it's a good idea to stop, if possible. Also, take a good hard look at any other medications you are taking. If you do drink alcohol, try dropping it for a couple of weeks to see if that helps. I've found it's a major trigger/irritant for my hives, but it's tempting to have a few to get to sleep but that is a very bad strategy.

    If you think it is cold contact urticaria that is sensitive even to room temperature, you could try full length thermal underwear. Cryoheptadine (Periactin) used to be used for cold contact urticaria. It's an anti-histamine with anti-serotonin action too and I've find it pretty good for my cold hives, apart from increasing appetite. Ketotifen is an antihistamine and mast-cell stabiliser which looks potentially useful too.

    If you suspect food is an issue, you could try strict elimination diet for a month and see if you can pinpoint any food triggers.

    Do you have pets in your house? I notice cat dander brings on a few hives for me. It used to just send me into an Asthma attack before I got cold contact hives, but now it seems to trigger the hives too.

    I wouldn't be fobbed off until your dermatologist appointment, there's loads you can do. For a start, in an emergency Doxepin will definitely help you sleep and unlike Zopiclone it will actually help with the hives too. I know all too well the hell that is 2 weeks of no sleep with painful and lonely skin scratching all night long sad It's hell, I do feel sorry for you, but you just need to go armed with some into to a better more open-minded doctor.

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    • Posted

      Thank you so much for your informative response, has been helpful.

      I have been a sufferer for approx 4 years, but its only been 2/3 weeks where nothing eases the hives.

      I was taking prednisone, only had a weeks course, that didn't do anything for me in the slightest apart from help a lingering chest infection. When I went to the hospital with no breathing (peak flow 100) the nurse thought i had an allergy to the fexafenadine although I was taking it twice a day my body was immune to it so stopped working. .

      I am very mindful of anything that causes weight gain as to date I have lost 5 stone, but with the suffering im going through i will do anything. I am thinking of changing doctors because just piriton and soap is not a good enough answer and I can't wait the 3 months with nothing.

      Yt? Today I have been given montelukast to try but im very reluctant as my doc said he has never prescribed this before for urticatia, lost my confidence there.

      I think mine is heat reactive, so the slightest warmth gives me hives, sitting in a warm office with a fan on and tshirt, getting in bed to a blanket over my legs all affects me, so half the time my arms and legs are blue and shivering just to ease the hives and pain. Swings and roundabouts sad

      Are those meds you mentioned in the UK, silly question but have to ask and are they on prescription only?

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    • Posted

      Oh, I see, it's heat rather than cold, that's cholinergic Urticaria. Are the hives very well defined circular wheals scattered around your body?

      Cyclosporine and Dapsone are pretty heavy weight and need hospital tests / monitoring.

      Usually, steroids would work after a couple of days, so it sounds as though they didn't work.

      Hydroxyxine is often used for itching and hives, it's prescription only but shouldn't be too hard to get prescribed as it's not associated with any huge risks. 

      Doxepin is an old prescription only Tricyclic depressant that happens to be one of the most effective anti-histamines (H1 and H2) known to man as well as being incredibly effective at putting you to sleep and the serotonin effects really numb itching (and pain somewhat) for me. But you will feel like a zombie with drowsiness well into the next day and crave heavy food.

      Xolair is a new treatment for asthma. It's an injection and can work wonders for hives, but it's almost impossible to get treated with in the UK as the cost is huge (probably about £1 a month per injection). Cyclosporine is possible to get treated with, but your kidney function and blood levels need to be monitored. It's an immunosuppresant that you take at a dosage based on your weight. it's a pretty heavyweight treatment with some potentially troublesome side-effects but one that seems to work well for many people who don't get relief from anything else. It's considered safer than taking steroids long-term and for some people can even solve the hives longer-term.

      I wouldn't be afraid of taking Montelukast, it might well help your chest even, it's quite good for Asthma. I was on it and noticed absolutely no side effects, but it didn't help either for my Asthma or hives. It does help some people though so definitely worth a try. I know at least one person that it solves their skin AND asthma problems.

      Periactin (cryoheptadine) isn't prescription only and I found it reasonably effective, like a much more lightweight version of Doxepin in effect (and side effects), but has helped enough to get sleep during bad episodes. I won't take Doxepin any more, the extreme drowsiness and appetite gains are too heavy but that is partly because my hives are much improved and I don't need to take it any more. 

      I've never tried Ketotifen, it's prescription only and I don't know how well it works for people in general.

      If your hives is heat-induced, menthol cream can be very effective for some relief. I've tried every cream and that is the only thing that works to give quick short-term relief. You can buy an over the counter 1% mentol cream/gel called Deep Freeze I think, though it's not that cheap. That will be you 30-60 minutes relief. You can actually buy the menthol crystals and carefully and thoroughly mix up your own with generic cheap Aqeous cream if you find yourself getting through loads. But don't use too much, a teaspoon or two crushed up and mixed into a large tub of cream is pretty strong. It's quite a good smell when your chest is congested too. Menthol will give you a lot of the relief that being cold gives you.

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  • Posted

    Sorry, I meant to say > £1000 per month for Xolair treatment, so they will only use it for severe, unresponsive asthma and people with very severe spontaneous hives that does not respond to anything else and is constantly active.
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    • Posted

      Ok thank you, yes my hives are very well defined it covers all of my arms, legs back and neck. Looks like I have sat in a nettle bush for a week. Once the hives disappear after approx an hour my skin feels burning to touch, its become so sensetive just the slightest touch and pain sears through.

      I have taken my first tablet, hopefully it will give me some relief, even one day respite but im currently loosing faith.

      I do have some menthol crystals here, never thought to try it. I will make some up thanks. I do also have aloe gel in the fridge, not that it works on me.

      I don't ask for much Just one day rash free, even one hour and I will be the happiest alive.

      Who needs to win the lottery when winning urticaria is lottery in itself x

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    • Posted

      From my experience with Montelukast, it's unlikely to be a silver bullet, it does seem to work for some people though. It's probably wise not to get your hopes up too much on that one, but it is worth a shot.

      You might find that meds are of more use controlling/reducing/eliminating the itching/burning rather than the initial breakout of hives. For me at least, I've never taken anything that seemed to stop the breakouts. Maybe Doxepin lessened how often and how severe in the early days. I'm hoping Cyclosporin works for me, but in my case diet seems to control the itching. The cold hives still happen but antihistamines and getting warm again make the hives go away. For me, it was the burning/itching that followed that really bothered me.

      In one way, cold urticaria are easier, because it's easier to stay covered/warm that stay cool, especially at work. But in another way, cold urticaria are bad because they are the one that tends to last the longest, 5, 6, 10 years these seem to go on for. Most other people's hives will be gone after 2 years, I'm going into my fourth year of this now. I suppose I can always move to a warmer country though.

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    • Posted

      Hiya, I made a 3rd trip to the doctors today and managed to get to see my own doctor who specialises in skin problems, he has given me Atarax 1 a night, cetririzine 2 x twice a day some cream, soap and to continue with the montelukast one a night, and hes fast tracking my hospital appointment heres hoping this works x
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    • Posted

      Hi, you know urticaria is not always an allergy and skin specialists are not always knowledgable about our condition. Look for a specialist to be referred to that has urticaria as their specialism.
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    • Posted

      Good Morning Sallyann

      If these new meds work for you that is great but if you still have breakouts with the hives....please consider Lorraine's recommendation.

      Sorry for repeating this to other past bloggers.

      I am 64 now and had two other breakouts of hives twice in my lifetime both lasting about two years and was able to control them to have quality of life just taking Claritin and Montelukast the first time and fexofinadine and Montelukast the second.  This time as meantioned the doctors tried so many medications and nothing was working.  They even tried me on Dapsone which worked for me but I had to stop as it was breaking down my red blood cells....but works for others. So they tried me on the Cyclosporine going up on mg every few weeks. The hives lessened but still had breakouts at 200 mg......so they decided to add the Prednisone to it and was so greatful that I then became hive free.  I believe they started me on 20 mg for a week or so then the following week I went down to 19mg for a week then 18mg for a week then 17mg and so on. (I had a lot of 1mg on hand)! When I got down to 5mg she kept me on that for several weeks while she was slowly having me go down on the cyclosporine. Very slowly...that seems to be the key.  So I am now on the 50 mg of Cyclosporine and 4 mg of prednisone for about 5 more weeks until I go back for my next appointment. And yes every month or so they check your blood to make sure all is okay......so far so good for me.  Others mentioned weight gain but I have not.  Our bodies are all different.  Lorraine was fortunate and did not have to take the additional prednisone.

      Please keep us posted to let us know how you are doing Sallyann.  Your doctors will try you on the lessor meds first.....hoping that will work for you as it did for me years ago. Eat healthy and no alcohol.  Try to eat grass fed only and a lot of organic veggies if you can...stay away from processed foods.

      Best Regards,

      Wendy

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    • Posted

      Yes, I think Dapsone will effect your bloods but for some people it won't be an overly big drop.

      From what I've been reading, that's a better way of taking steroids, using Cyclosporine along with a slowly tapering dose of Prednisone.

      Steroids are tricky for me, because they make me irritable, restless and increase insomnia as well as bringing on rapid weight gain for me. There's a history of mental illness in my family and I do notice steroids have peculiar effects on my mood so I stay away.

      Sulfasalasize and Hydrochloroquine (anti-rheumatoid drugs) are other ones you can try if Dapsone didn't go well.

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