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Urticaria and xolair

Posted , 9 users are following.

daniela_36294
daniela_36294

hi everybody!

I was diagnose with solar and heat urticaria four years ago. My life since then has change dramatically.

my dr just recommended for me to star with XOLAIR .has anybody taken this drug? Did it help?

1 like, 46 replies

46 Replies

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  • michaela99267
    michaela99267 daniela_36294

    Posted

    Hi I  finally got a dermatologist and on the 3rd visit I got a dr that actually listened ,who was interested in my urtucaria and to find a solution , i kept asking for the xolair injections and he is now sending me to a clinic just for urticaria and there i will get the injections. how lucky was i to have a dr that actually cared it has given me a big boost, just waiting for the appointment.....so I hope they work for me as I've read so many good things about it to treat this condition 
    • daniela_36294
      daniela_36294 michaela99267

      Posted

      Hi Michael

      I have had solar urticaria now for 4 years , this condition has limited the quality of my life. I love the beach, gardening and so many other things that I can not longer do. Even driving the car on a sunny day is a problem.

      My urticaria is to sun and heat only. So I was diagnosed immediately . I went to an allergiest in Italy that tested me for all inmonology

      deceases and I have none.

      Finally I went back to my Dr. because I just can accept that there is no cure for this urticaria and he just told me to take Xolair.

      I have been reading about this drug and I am concern with the side effects. Is it safe?

      I want to find somebody with urticaria that has actually taken the Xolair.

      When are you going to try it?

      Let me know

      Thanks

    • michaela99267
      michaela99267 daniela_36294

      Posted

      im waiting for an appointment, but read other peoples status who have tried xolair on here daniela ,also read up about it on the net
  • wendy62425
    wendy62425 daniela_36294

    Posted

    Hello Daniela

    How did your doctor diagnose you with solar and heat urticaria. Was it your GP doctor or specialty doctor dermatologist or Allergist?  My doctor was recommending the Xolair shots as it was working very well with her urticaria patient. Keep us informed!

    Wendy

    • daniela_36294
      daniela_36294 wendy62425

      Posted

      Hi Wendy

      The allergist diagnose me with solar and heat urticaria 4 years ago.

      I have taken many anthihistamins but no improvement at all

      I just found about Xolair a week ago.

      The allergist who told me to take it is in Ecuador. I live in Ecuador now

      Do you have solar urticaria ?

    • wendy62425
      wendy62425 daniela_36294

      Posted

      Hi Daniela

      How did your doctor diagnose you with solar and heat?  Did he do a test on you?  I thought my Chronic Urticaria was stress related as I would have an outbreak during stressful times or thereafter.  When we went away on Vacation I broke out in hives while sunning buy the pool. And my past outbreak was during the June July months during summer......hummmmm..  Maybe I have the same issues.  I look forward to hearing how your doctor tested you with the solar and heat. do you just break out in the sunlight.  Do you have hives when indoors? 

      Have a good day

      Wendy

    • daniela_36294
      daniela_36294 wendy62425

      Posted

      Hi Wendy

      Mine was easy to diagnose because I only have it when espouse to the son or heat, hot water, holding a cup of hot coffe.

      If I stay in the sun for more than 4 minutes I get all red and itchy.

      Mine is very specific

      I think I will try the drug Xolair in the next coplu of month

      You should try to espose yourself to hot elements and see what happens.

      Hope I helped you

      Let me know

      Bye

    • wendy62425
      wendy62425 daniela_36294

      Posted

      Hi Daniela

      i don't think mine is caused by heat as I can take hot showers and rinse dishes with hot water with no affect.  When I get the hives....unfortunately they stay with me all the time unless I'm on Prednisone which im coming off now and do pray the hives are gone this time!! Sometimes they last up to 2 years then goes away as fast as they came and then didn't get them back over a decade later......go figure!  I wish someone would come up with a cure!  I live in Virginia, USA.  Keep me posted!

      Best Regards

      Wendy

    • daniela_36294
      daniela_36294 wendy62425

      Posted

      Hi Wendy

      He did not test me. It was obvious to the dr and to me. I show him the pictures I had taken of myself.

      I can not stay under the sun for more than 3 minutes, can not take hot showers, no sauna, etc .

      I always get the same allergic reaction. Therefore, all the Dr I saw gave me the same answer. Heat and sun urticariasad

      Daniela

  • sam1427
    sam1427 daniela_36294

    Posted

    Have you tried Quercetin?? A must!!!!!!!!!!!!!!

    There are may be different names and types of utricaria and many  originate in Mast cell activation disorder.

     There is " Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options" available on web.

    Mine is contact,pressure(seat belt,bra straps,blankets,etc.),body heat (execises,even swimming) utricaria. Taking Quercetin helps with keeping symptoms under control.

     

    • daniela_36294
      daniela_36294 sam1427

      Posted

      I have not tried. This is the first time I heard of it. I will do some research .

      thank you for all the info

      smile

  • always_somethin
    always_somethin daniela_36294

    Posted

    hi there. I have had solar urticaria for 5 years. I have seen nine doctors and all of them have told me there's nothing they can do for me. The last doctor I saw was an allergist, and he's the only one that has put effort into trying to find me some relief. He suggested xolair... My insurance should approve it in one week. I was wondering if you tried it, and how the results were. In trial the shot did so well, but what I'm reading online is that it's not doing so good for people with our issue. I'm interested to know your results.
    • wendy62425
      wendy62425 always_somethin

      Posted

      Hello Chaseo

      I have Chronic Idiopathic Urticaria and have had a breakout in hives three times in my life with decades in between with no hives.  Mine are probably due to stress affecting the immune system.  This last breakout started last summer and is by far the worst.  My Allergist/ Immuologist doctor tried prednisone as it was bad then antihistamines which stopped working.  It became so servere I had to go to the ER at hospital to try to get relief as I was so miserable and could not sleep because of it.  She recommended the Xolair and was able to get it approved thank goodness.  Within two days I was hive free!!.,  so relieved!! After the second week I started to breakout a little but was able to control them with an Allegra a day.  I had my second shot last week but still break out a little but not bad but today had to take two Allegra...as I write this the hives have gone.  My doctor said for some it could take a couple shots.....EVERYONE IS DIFFERENT!! And react differently.  The hives right now are controllable so far after the Xolair.........and they were not before the shots.  I highly recommend for you to try the shots.......it is so worth trying!  I am going to continue to take the shots and pray that in time I too will become hive free as others have experienced.  I wish you well...please keep us posted on how you are doing. I live in the U.S.

      Wendy

    • wendy62425
      wendy62425 always_somethin

      Posted

      Hi Chaseo

      please let us know how you are doing after you get your Xolair shots.  It's good for us all to share our experiences with the Xolair.

      Thank you

      Wendy

    • always_somethin
      always_somethin wendy62425

      Posted

      Hi Wendy. I will definitely fill you in after I get the shots. I had just been approved and the medication should be delivered to my doctor sometime this week. I'm nervous. But I hope it works. I'm not too optimistic, because everything I read points on the negative side. But I'm crossing my fingers. Maybe one day I can wear shorts :-)
    • wendy62425
      wendy62425 always_somethin

      Posted

      Hi chaseo

      I wish you well! What are the negative sides that you have read?  My third injection is coming up next week.

      Wendy

    • daniela_36294
      daniela_36294 wendy62425

      Posted

      Hi Wendy

      I took my third shot at the beginning of July. I no longer get hives when I am expose to sun, hot water....all kind of heat gave me terrible hives.

      I no longer get hives. However, I fell ran down and I have a very low blood pressure .

      I just came from Miami, went to the beach and no hives which is good . However, I was very tired, and I felt a pressure on my throat.

      The hives are gone but I get these other sintoms.

      I have not spoken to my doctor yet.

      And I extremely tired

      Any body has had side effects taking Xolair???

      Thank you

      Daniels

    • wendy62425
      wendy62425 daniela_36294

      Posted

      Hi Daniela

      Please call your doctor and tell him or her what is going on with you and with your blood pressure and any other symptoms you have.....very important.  You don't want to take any chances.........and need peace of mind as well.  

      So wonderful to hear that you are hive free.  I am going for my third shot next week...but I am still breaking out during the night with the hives.  I was hive free the first week of first injection.  Have to take 2 Allegra and a Zantac each day....hopefully the hives will go away.  Everyone's body is different and the Xolair works differently.....I'm not giving up though as others went through the same and eventually they went away.

      Please call your doctor this morning and keep us posted.

      Blessings

      Wendy

    • daniela_36294
      daniela_36294 wendy62425

      Posted

      Hi Wendy

      I will defenetly call today and let him know my symptoms .

      Hope you also get rid of this condition forever . We should all have a good quality of life.

      Take good care

      Thank you

    • wendy62425
      wendy62425 daniela_36294

      Posted

      Good Daniela!  So good to call your doctor! And YES we should all have a good quality of life.....FREE from HIVES!

      keep me posted

      wendy

    • always_somethin
      always_somethin wendy62425

      Posted

      Hi Wendy! As I mentioned before, I have solar urticaria. This morning I got my first two shots. And I was so nervous. People kept saying it hurts.... But the shots were absolutely painless. I have been reading that it takes about 3 months for people with my issue to see an improvement. I hope it happens sooner for me, but I'll be ecstatic if it happens at all no matter how long it takes. to be able to go outside without hiding, drive without draping towels over all the Windows.... I'm feeling excited right now. I'll keep you posted.
    • always_somethin
      always_somethin wendy62425

      Posted

      Just following up with you all. I received my second round of Xolair shots yesterday. I have seen no signs of improvement yet, but the doctor suggest i give it at least 4 rounds of treatment. It is painless, but it does cause me to be really tired the first few days. Also, i had a sore throat for 3 weeks... i dont know if that was a side effect or not. After receiving my second round of shots, i can tell you that i am very tired right now. I still remain hopeful, though i havent read anything from anyone that says they have gained control of their solar urticaria with ONLY xolair. Most people say the used both xolair and UV hardening.... but in my opinion, i think its just the UV hardening that they are benefitting from.
    • daniela_36294
      daniela_36294 always_somethin

      Posted

      Hi

      I can tell you that after 3 shots of xolair my heat urticaria went away. I was able to go to the beach, take hot showers, drive my car Etc. However, after the third shot I felt constantly very tired, my blood pressure was very low, had headaches and one week swollen eyes. I also had a constant pressure on my throat .My doctor said that it was not a side and effect of Xolair . And sent me to do some blood test and .....

      Yes, my urticaria went away but I did not feel well overall.

      A week ago my urticaria came back. Now I am thinking of changing doctor and see if I can get a lower dose of Xolair and not every month

      Let me know how you are doing

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