Hives for a month now

Posted , 5 users are following.

Most of the comments I find are really old, so, I'm hoping someone will respond that is current.  Almost 4 weeks ago, I woke up with what I thought were huge mosquito bites, probably about 30 or so.  Within 2 days though, I knew it was much worse and my journey with hives began.  I have literally been head to toe many times...clear up pretty much by mid morning, then awaken about 2-3 am with a new break out.  I have tried steroids 3 times...several different antihistamines and xanax thinking it might be nerve related.  No one that I personally know has experienced this and they are all scaring me that it's cancer.....but I HAVE looked that up and hives do not look like the rash that I have read about that is typical of lymphoma.  Today I had blood work done and should know the results of that in a few days.  My doctor has now prescribed a regimen of Claritin, Zantac (prescription strength twice a day) and Atarax every night.  I've never taken Atarex before so tonight will be the first.  I am looking for reassurance I guess --- that sometimes we never truly know the cause for the hives but that they can and do last for weeks, even months.  One common denominator for me was that about the same time as I broke out, #1, I had microneedling done on my face and #2, I began helping a family member clean and remodel a house that was filthy AND had a CAT.  Thank you in advance for sharing your insight..... 

 

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  • Posted

    Hello Meemaw I had these hives over 4 years and now I finally got approved by my plan from work and I'm a retired man. So, they approve Xolair shot which in Canada cost 1500 dollars a shot so I started in May 2 shots, June 2 more shot and now will get 2 more in July the total for those shot by July will be 9000 dollars cause I get two shot at a time but now the red is not so bad now but still get a bit of rash mostly at bedtime but not so bad now and hope next month it will be all gone I hope. Don't forget I hear everybody is different cause some people didn't get rid of rash with Xolair but I hope I'm one of the lucky one. I wish you lots of luck with your rash cause it's so painful and ruins your life and so difficult to live with it, best of luck to you.

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    • Posted

      Omer

      Are you paying for Xolair out of pocket or covered with insurance?  If you are paying for it out of your own pocket you need to contact the makers of Xolair and ask how you can get it mostly covered. Your doctor should know...... Xolair did not work for me...fortunately I only paid $5.00 a shot.  After much suffering with Chronic Urticaria I finally found a wonderful doctor at Johns Hopkins here in the US that was able to treat me.  I have been hive free for well over a year...such a blessing. 

      Wendy

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    • Posted

      Hello Wendy, no my insurance plan will cover but i had to fight to get it and now i was accepted, thank god for that so expensive. I did contact Xolair to see what if I had to pay portion and they said my plan pays 80% and they will accept the balance great. Wow you only pay $5.00 that is so crazy what did the doctor at Johns Hopkins give you for your hives to be clear of hive so long, please let me know and thank you for answering me about this depressing pain
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    • Posted

      Thank you Omer and Wendy and all of you that took the time today to answer....I honestly was feeling so alone with it that I doubted this website would help at all!  I'm sorry all of you are suffering too, but thankful for your insight, advice and support. God bless you all!  

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    • Posted

      You are so welcome Meemaw and Wendy, if anyone gets good news or some miracles let us know. Wish you all the luck and thank you also for taking the time. God bless you all and I pray for all of us.
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    • Posted

      Hi Omer

      I have tried to send you detail information about my care but it gets deleted as an error.  I will be brief and send.  Doctor put me on Cyclosporine Modified  low mg to start then slowly upped to 200mg (took many weeks) .  Because my hives were so severe doctor added Prednisone I cannot remember the mg but that took away the hives with that combination.  Doctor kept me on both for quite some time months then very slowly came down on Cyclosporine and Prednisone. I stopped Cyclosporine first then slowly went down on the Prednisone very slowly......I'm still taking 1 mg every other day.  I have a friend on Patient UK that was hive free with slowly going up to 100 mg of Cyclosporine........she stayed on that for a few months then she slowly went off the Cyclosporine as she has been hive free.  We both take a supplement L-glutamine.  I need to send this before it gets deleted again..

      .

      many blessings

      Wendy

       

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    • Posted

      Thank you Wendy i have written your information down and will talk to my doctor to see what he says. Thank you so much for contacting me on this. Your very kind to take the time to help other like Meemaw and others, thanks again.
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    • Posted

      Wendy; I've never heard of the Cyclosporine but I'll look it up.  The L-Glutamine is a supplement I assume that you get at a health food store?  This morning I have only a few hives, but my lower lip is swollen and feels like I'm breakingout with a fever blister/cold sore....been fighting those a lot too.  

       

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  • Posted

    Hi there Meemaw

    Sorry to hear that you have started to suffer with this horrible, curious, disease if you can call it that!

    I am in the U.K.

    Mine started like yours ... I woke one morning three years ago with a patch on my wrist then it developed on my leg. I had a good year of being given different antihistamines to try which all made it worse! Eventually my dermatologist at the hospital started to believe me when I said that I was clearly allergic to antihistamine and that they made the hives a lot worse!

    They do not know what causes mine ... all I know is that it isn't an allergy. It's my immune system thinking that it has something to attacks ... but apparently there aren't any tests that they can do on the immune system?!

    Because of this antihistamine allergy, and my high hive score sheet, I was approved to be given Xolair. I am now on my second 6 month course of Xolair which has been a god send and keeps me clear and itch free for the 6 months that I am on the treatment. Sadly I then have to have 6 months off it and it al starts again.

    I have asked if I can have the injections every other month so I am covered for the whole year but sadly due to the NICE guidelines that our NHS system have to follow in order to get funding for this treatment, the NHS have to stick to the monthly treatment that NICE stipulate.

    I dream for the day that this urticaria leaves me as rapidly as it arrived ... or just to be given a reason why but for now, Xolair is my comfort!

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    • Posted

      Hi Hanneke my name is Omer, I don't know if you saw the message I sent Meemaw but me to am taking Xolair 2 shot at a time but after reading your message you said you get later again so you mean it doesn't go away for good. Now i had two shot in May and 2 shot in June and will get 2 more in July but so expensive thank god my plan cover it but had to fight to get it but now I'm a bit worry cause I'm thinking to move to Europe and will I be able to get it there cause I'm from Canada and it cost $1500.00 per shot crazy and to suffer with this is depressing and really ruins your life but I'm older so maybe my life is done but feel so sorry for those who are young like one I sent message was only 19 but me I'm 70 so my life nearly at end so I hope a cure comes for others cause it's unbelievable to live with thank you  for answering people we need to talk about it and hope for a life, take care.

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    • Posted

      Hi Omer

      Thank you for your message.

      It doesn't matter what age you are, you shouldn't have to suffer with this!

      I have asked many times if I can be referred to an immuneologist only to be told that there isn't any point as they'll only do the same tests as the dermatologist?!

      I started with this at 37 years of age and it's so frustrating to be told ... there isn't anything we can do; we can't find the cause etc etc

      I too had a battle on my hands to get Xolair but once they finally recognised that I cannot take antihistamine then they were left with little choice as there is no other treatment. I don't know how long the UK NHS will fund this for but at the moment I know I get 6-8 very pleasant months now!

      Like you I have had days of tears, depression... people don't understand and say don't worry, people don't notice it but honestly! The thought of wearing anything that shows my legs or arms if i am not on the treatment is impossible!

      When I finished my first six month course last year the hives did return after about 8-10 weeks and not as bad as they were prior to Xolair. I don't know how you are reacting to Xolair but for me it works extremely well and from the first injection I was hive free.

      Continue with the course if you can ... my consultant has said that so many people have varying results so you never know!

      Don't give up hope x

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    • Posted

      Thank you Hanneke, well right now not to bad cause before I was going so crazy and the worse is i'm taking care of my mother she 89 and my handicap brother 52 and it feel like I'm being punish for some reason it's like being torture with this hives so I hope it will disappear cause it's depressing but now I'm worry cause you said it came back and i don't need that cause I'm thinking to move to Serbia at end of year once I place mother in long term home next week and looking for a disability place for my brother cause I'm getting older now, well i am already old but in Serbia I have people who will take care of me there cause here no one will so i have to plan ahead cause my father pass away with dementia and parkinson so I might have the same and in Serbia my friend sister work taking care of people with this and she said don't worry i would love to take care of you if it happens so I guess I am lucky in a way with good people. Thank you for your wish not to give up, it's nice to see some people care.

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    • Posted

      Hi Omer

      Many times Urticaria comes on with stress effecting your immune system causing the hives....that's what happened to me.  Sounds like you have a lot of stress going on.sounds like you will be taken care of in Serbia....that is go good.....it seems it's your turn to be taken care of.

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    • Posted

      Hello Wendy, thank you well I guess I do have lots of stress but I sure hope i can get rid of this rash before I go. Yeah, I have very good people down there that will take care of me cause here no one will for sure. Yeah, I agree that it's my turn especially at this age now, thank you, your so kind and wish you lot of happiness and luck thanks again

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