1. Community
  2. Skin and nails
  3. Urticarial Rash

I've been dealing with CIU since 2011...

Posted , 5 users are following.

miyamontana
miyamontana

My first breakout was so massive & horrible that I was rushed to the hospital & pumped with liquid benadryl. It started after a dance my freshman year of college. I can barely remember what I ate, drank or did that night but it started from my head, moved down my neck to my back... next thing I know I was completely covered in hives!!! My lips swelled up & everything!!! I thought I had an allergic reaction to seafood or some type of food but it went on for years even after I avoided certain foods. This is something that no one could EVER understand how I felt or what I go through on the daily! Its so frustrating, sickening, mental & depressing at times. It feels so much better knowing im not alone & I can relate to someone without them throwing thousands of assumptions at me about what im breaking out from but we are all still suffering. Has anyone come up with their own remedies for treating the hives? Does anyone else also have swelling of the lips along with their hives?

0 likes, 11 replies

11 Replies

  • wendy62425
    wendy62425 miyamontana

    Posted

    Hello

    Like many others with CIU including myself yours could be due to your immune system.  I have had these hive breakouts 3 times in my life each time the hives lasted for about 2 years then just went away.  The first two times I was younger and was able to control them with Claritin or Allegra.  This past time was the worst..I am 64.. and was unable to control them..went to the ER couple of times..no help..tried many meds until I found a great doctor at Johns Hopkins that started me on Cyclosporine and would increase it slowly...it took weeks until she saw improvement then she added Prednisone which completely took the hives away!  I stayed on that dosage that worked for me for a couple of months then she had me go down VERY slow taper it has taken me a year to go down.  The prednisone I would go down 1 mg each time and stay on it for couple weeks then go down another 1 mg and so on. The Cyclosporine I would go down slowly 25mg at a time.  I have been hive free for over a year now.  I just stopped the cyclosporine and am down to low dose 3 mg of prednisone.  She wants me to stay on the low dose for a couple months then may try to go down to 2mg.  Such a blessing to have been hive free.  I pray I will be in remission...forever!

    there is hope!  I also take L-glutamine a good probiotic...drink lots of water. Eat fresh foods. Cut back on caffeine.

    hope this helps

    wendy

    • miyamontana
      miyamontana wendy62425

      Posted

      Wendy,

      Thanks ! This did help ! I like to hear about the different medications out there that could help me & that I could suggest to my doctor as well . I'll definitely take a look into the L-glutamine too ! Gives me hope !

    • wendy62425
      wendy62425 miyamontana

      Posted

      Hello again

      my hives were most likely brought on by stress in my life around those times effecting my immune system.  Good fiber to avoid constipation as well.  Our gut plays an important role in CIU.

      Wendy

    • miyamontana
      miyamontana wendy62425

      Posted

      Yea I notice when I'm stressed or uncomfortable the tend to come out . I have something that I take for constipation as well but I'll look into a colon cleanser .

  • rose00110
    rose00110 miyamontana

    Posted

    Wow poor you i really feel for you.  Mine are never in the face and not as serious as yours but i remember an experience i had in my 20s i am now 56 anyway my face gradually became so swollen after going to the rmergency twice and get sent home saying it was bugs. It got so swollen i couldnt even see i was rushed to the hospital and i was there 2 days on iv with high doses of antihistamine never figured out what it was but ill never forget and it never came back after that.  Now iv'e had severe itching which keeps me from sleeping and get breakout of hives for no reason.  I don't   

  • rose00110
    rose00110 miyamontana

    Posted

    I don't have my own remedy i only do the ones i found online.   How do you cope with work with what your going through ?  And didd you get a diagnosis.

    • miyamontana
      miyamontana rose00110

      Posted

      Well as far as work I tell every job I've had about it so that they're aware in case I have to call out or if it happens & I have to leave early . But I take antihistamines every night before bed & in the morning to keep me leveled . Benadryl usually works well but sometimes it just takes forever to kick in .

  • justine_23155
    justine_23155 miyamontana

    Posted

    I've had 3 years of immuno suppressant and still have to peel my bedsheets from my skin every morning where my blisters have crusted . I'm at a loss now. All my tests for causes come back negative. If it weren't for the fact that my skin is now a massive weeping sore the medical profession would say I'm perfectly healthy!! What's going on??? Are there any answers out there?

    • rose00110
      rose00110 justine_23155

      Posted

      Poor you maybe they will have to try something else doesnt sound like this is working for you sorry to hear that. 
    • wendy62425
      wendy62425 justine_23155

      Posted

      Hello

      have you tried the above medications that I mentioned if you have Chronic Urticaria?  Combination Cyclosporine and Prednisone.....my doctor had me do extremely slow taper.....it has taken me a year.....praise God I am still hive free ...no longer on cyclosporine and am down to 3mg Prednisone.

      wendy

    • rose00110
      rose00110 wendy62425

      Posted

      Wow your lucky I have to make sure that's what i have first and see what she recomends i heard about the zolair and it's kind of scarry the side effects.  Can you eat what you want now thats what i cant wait

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.