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My experience

Posted , 5 users are following.

Juno1234
Juno1234

Im am a 20 y/o male. I use to play college football I grew up very heathly stayed in a gym or outside playing when I was 19 I went off to college which was in california mind you that I came from Las Vegas Nevada I got Thru a whole season with nothing wrong I came back Las Vegas for a visit and when I came back I came down with the "heat allergy" I notice it coming but I didn't realise it until now.well the symptoms started on my back I thought maybe my body has to get use to the dry heat again so I used different moisturizing creams and I noticed it wouldn't work so by then the heat allergy aka "chronic urticaria " had worsen I still didn't know what was going on with me so I went to the hospital one day after "TRYING" to play basketball while I triedto play I also noticed I couldn't sweat and the more I ran and the hotter I got the worse the pain got so I just gave up and stopped ....when I went to the hospital they literally took me as a joke because I had no symptoms to show atm so they prescribed some meds I took them and noticed they were not working at all so I kept going back to the hospital every other week f and finally one sweet nurse named Jessica knew what I was talking about .she gave me advise to goto a dermatologist I made an appointment ASAP after she gave me the advise I went to the dermatologist before I went i did ALOT of research and notice I had a heat allergy aka chronic urticaria every symptom matched up perfect to what was going on with me I couldn't get excited I couldn't exercise I couldn't do anything that would raise my body temp a little.. I grew depressed so on my first appointment I told the doctor "look I have heat allergy aka chronic urticaria my life has been put on pause because this mysterious condition " and he look right into my eyes and said "imsorry let me refer you to an allergists so ill tell him you need the XOLAIR injections ASAP" my appointment is on the 16th of June in more then happy. Is there anybody that has taken the shot here...I've done ALOT of research. I'VE SEEN MORE GOOD and hardly anybad can you guys help me what should I expect and for people that has the same problem ill keep you updated on weather the shot works or not

0 likes, 4 replies

4 Replies

  • frankie116
    frankie116 Juno1234

    Posted

    Juno1234

    Thank goodness your insurance has approved the Xolair. Last November I had such a bad case of CIU  and after many antihismines, H blockers, and long term steroids I was prescribed Xolair.  I stared Shot in March and I have been hive free (knock on wood) since. I used to get the shot every 4 weeks and now I am going every 5 weeks.   Good luck on the 16th.  Xolair has changed my life.  I read posts from the UK and it saddens me to see that many of them have to live with these horrible hives as Xolair is not widely used.

  • hanneke54158
    hanneke54158 Juno1234

    Posted

    I've been suffering with chronic urticaria for 2 years now, waking daily with arms, hands, chest (not great being a female!) and when it all started, it made me allergic to any type of anti histamines ... So I've spent the last 14 months trying to prove to my consultant at the hospital that I can't take a/h. She finally did a biopsy before Christmas which proved this.

    And since March I have been on Xolair ... Get my fourth dose this week and I'm happy to report, since the first injection, I have been hive free and very happy indeed! No side effects. I am starting to worry what will happen when my course ends after injection six but i'm hopeful!

    Therefore I can only hope that they work as well for you as they are doing for me!

  • haley42039
    haley42039 Juno1234

    Posted

    I have had CIU for 1 year and 3 months. Took xolair for 7 months. First shot had severe aching and tiredness. Xolair never helped me unfortunately
  • adrian33667
    adrian33667 Juno1234

    Posted

    Frankie's right - the UK offers antihistmines like Zyrtec. They gave me Fexofandine 120mg. That didn't cut it. I cranked it up a bit and found this:-

    - Antihistamines work for many, for me to have any effect, I took 180mg each morning.

    - Beer got spanked them out of the park (no good if you have a wheat/barley allergy though)...but it comes back once the alchohol wears off and codeine levels get back to normal. But at least I got some sleep.

    - After about a month, I threw everything bar the kitchen sink at it. Its working...touch wood. I did this:

    1. Bought a huge tube of E45 and carried it everywhere. Any itch anywhere got a splat of the stuff. 

    2. Took the antihistamine as instructed each day...plus an extra 60mg.

    3. Slurped down 3/4 cups of green tea a day.

    4. Changed clothes twice a day.

    5. Drank about 2 litres of water a day.

    6. Washed bedding twice a week without powders or liquids

    7. Didnt drink any alcohol (even though it helps) for a week just to kick reboot the system. But still went out as normal.

    **Be careful with the green tea - some people get hives from caffeine. So possibly try caffeine free. Always non bleaced bags.

    For me, I reckon its anxiety. for others, it could be heat, allergies to shellfish, alcohol, caffeine, avocados believe it or not, or a host of other things. Apparently there's 90 or so types of urtecaria, which is why one fix doesn't fix all.

    Hope this helps

    Adrian, UK

     

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