For a long time I felt as if I was the only one that had hives, just recent diagnosed as CIU. The first time I got hives was in 97 or 98. I can’t remember how long they lasted..I’m guessing a few months. I was given prednisone packs and otc antihistamines. Then my next outbreak was in 99. After a few months of dosing up on more prednisone, otc antihistamines, allergy tests, derm visits, more prednisone pills/shots. It then stopped..again I don’t remember how long the outbreak was but definitely a few months.
Then my next outbreak stated in 2008. Granted at that time I was going through some life changing events and stressed beyond stressed. But hey..8 years without an outbreak was awesome!! I went for more allergy testing and it was determined that I was allergic to a med I was taking (only took that need twice). Well the coating on the med. I stopped the med and never took it again and my hives went away with continued otc zyrtec twice daily.
Well it’s been another 8 years and I haven’t had an inkling of a stupid hive until March 13, 2016. Ugh!!!!! It’s been on and off since. I’ve been to the Urgent Care to get shots and the hives would get better only to get pissed off and come back full force in a few days. Then the Urgent Care Dr decided to get ‘aggressive’ and give me a high dosage shot plus the prednisone pills. That helped but again I think the hives felt disrespected and came back.
After multiple visits to my Physician, crying because my hives itched and were starting to hurt, they finally get me a same day to a dermatologist. She just gave me creams.
The next day I see an allergist who told me to stop the creams immediately. She listened to me, read my history I typed up and for the first time I didn’t feel like I was going crazy or alone. And that’s where the diagnosis of CIU came in.
After a month of cutting out this food or that food, going to an acupuncture (which helped some, but not enough) we decided on xolair.
During my first shot I felt fine. A day later is when I felt sore. About 7 days later I got hives again and the Dr had to call me in some prednisone (20 mg pills). Before my next xolair injection I was hive free.
During my second injection I got 2 shots instead of the one. I experienced the side effect of an all day headache the next day and body aches. 3-4 days after my injection I noticed the hives are appearing. They’re a little more manageable with all the OTCs I’m taking but not completely gone.
Since March I literally felt like a walking pharmacy. I’ve been taking zyrtec, singulair, benedryl, zantac, allegra, and claritan. I live in TX so it sucks wearing long sleeves in the summer. I’ve noticed that during an outbreak, a shower subbing my skin with a loofah helps to calm it down. Oh, and yes I’ve changed soaps, detergents, EVERYTHING!!!!
I really hope this xolair shot starts to help!!!
Here are some pics of what it’s been looking like since March 🙁
I’m sure I forgot to add something to this novel. Lol
Dorothy Stephens And I’ll add that since March I’ve gained 15 lbs due to that stupid prednisone 🙁 I’m really trying to stay active with my crossfit workouts and eating. It does get hard when benedryl takes over. Does anyone have any tips?
Andelka Michie READ READ and did I say read in this group have found similarities but what stands out it is a very personal journey, there is no right or wrong start reading the earlier posts and some very good info the admin have provided as well, as for the weight there is more of you to love x
Kriste Colon Well said
Dorothy Stephens Thanks! I’ve read some of the old posts but didn’t have time to read them all. It is nice to see that I’m not the only one suffering from this.
Kriste Colon Your not alone, but definitely everyone’s journey is different and what works for one may not work for another. You will definitely find idea of things to try. For me it’s my daughter of 2 years old that has been dealing with this debilitating condition for over a year. Thanks to everyone here I better understand how she feels, what meds and natural alternatives to try. We have managed to get her down to about 10 hives a day. However she is sick right now and has a major flare up. She can’t just be a kid because if she is she gets sick and has a major flare up. It’s terrible. Hang in there
Dorothy Stephens Awww I’m so sorry to hear that! I can’t imagine what you’re going thru with your little one!
Maggie Maye I hope the Xolair continues to work for you it has given me my life back! Hang in there, we are on the same ride as you are ask if you have questions, let us know how your doing..
Dorothy Stephens Thank you!!! How long have u been on xolair?
Ann Morgan i got cataracts due to prednisolone went after while after i came off , it took them 19 years to take this serious and im on fexafenadine for good and cicropsorine now for 5 years to try and reverse my immune system ive had this for 20 years now since i was 18, i spray this on my hives helps me get though the day when i have a flare up cools this skin , stops the itch and lasts , was told it was very common to have flare ups around the time of period and don’t i know it every month on the dot back on high dose fexafenadine and sometimes prednisolone if needed xx
El Fraser Aww there are huge numbers of us suffering with this – it’s endemic IMHO. And I wonder if the glyphosate chemical that is now in all our bloodstreams (from Monsanto’s weed killers used on nearly all crops) – along with GMO produce and raised feed animals – and then I believe – a genetic component, and you have where we all are! I now know I have had a mast cell disorder from birth – just no one knew what was at the heart of all the problems (GI, gyn and more). And p.s. I diagnosed myself in 2010 much to the chagrin of the Internal Med doctor I was seeing at that time.