Those who are just beginning their journey
Just wanted to offer some encouragement this morning to my fellow sufferers.
Especially those who are just beginning their journey. For me, the very beginning was the most frightening stage. I have been battling CIU for close to 13 years now. I am 35 years old.
I’ve experienced the very same thoughts, fears, emotions, symptoms, meds, and flares that I read about on here daily (and then some!) My heart hurts for you all because I know in some situations there simply is no relief.
In the early years my first attempts at having my CIU treated were surprising. It’s scary when multiple doctors explain to you they don’t really know what is wrong with you and the attempts to treat you are failing. That first phase is scary and defeating.
The bad news: it will take some time and some trial and error for yourself or your healthcare providers to find something that works for you. Try to be patient and practice some serious self-care in the mean time. Long durations of hives can really take their toll on your mind.
The good news: something is bound to work for you!! There are actually 1.5 million people in the United States alone living with CIU according to the drug manufacturers. And more than half of patients are not successfully treated with high dose antihistamines.
The trickiest part is we all share the same symptoms but don’t respond to the same treatment plan. There are also drug trials happening as we speak for new drugs to treat this. Or if you search LDA therapy in this group there are some promising alternative treatments that people have had success with in this very group.
My personal case is relentless. I survived and today am living a mostly hive-free life with a much improved quality of life.
You’ll get here one day too. Stay strong!! 💪🏻 This group offers a TON of wonderful management advice for this condition. Read, read, and read some more! Best wishes for good health to you all
Tammy Thomas Suire
I’m 65. It started at 28 yrs old
Tammy Thomas Suire You’re a warrior for sure! I really really hope not but I will probably be able to say the same one day.
Tammy Thomas Suire
Savannah Layne if you get spontaneous remissions like I did it’s survivable. No drugs because back then not one dr even offered antihistamines much less diagnosed it. But remissions happen without drugs I sometimes think the antihistamines complicate the issue. But now I’m not seeing any more remissions and it has been 9 yrs of daily hives. Yes I take antihistamines now As little as possible
Tammy Thomas Suire I’ve never had a remission period to speak of. They never. ever. stopped.
Bianca Aisa Ortiz
This was a breath of fresh air to read. I was crying to my mom last night that I’m so tired emotionally, physically, mentally! And more so I see it effecting my kids as well because I’ve become so irritable. The worst thing last night was that I went to see a doctor for steroid pills to “patch up” the problem. He just heard me out gave me the meds and walked on to the next patient 😒 Allergist and Dermatologist have all said it’s something I just have to live with and I highly doubt this is true! Thanks for giving me hope that I’m not crazy and no matter how long there is an upside to this❤️ So glad to hear you got relief!
Bianca Aisa Ortiz thank you 🙏🏻 It’s possible! And don’t beat yourself up too much over the steroid bandaid….I did that too when I felt desperate enough.
I stopped focusing on “getting rid of it” (makes me laugh to say that) and started focusing on managing. Which is what your doctors will recommend too. They know it’s not going anywhere.
Thank you for this post. I really needed to hear this. I’ve been so depressed because in my country doctors are just clueless about this condition. I will keep researching and I know I will eventually find something that will make it manageable. 😔
Nomzamo Ngcobo yes you will! I’m happy you are part of this group so you can get some insight if your doctors don’t know how to help.
How did u get to no hives ?
Jennifer Emrick Lots of drugs of course 🙂 which I still take daily but it’s the first time I’ve been on a boatload of drugs and actually had them suppress my hives! My magic cocktail includes 3 180mg Fexofenadine, 2 150mg Ranitidine, 1 10mg Singulair, and 300mg monthly Xolair injection. Like many others Xolair was my game changer. I feel lucky it worked for me.
Savannah Layne wow that’s is a lot I pray xolair is mine too
Wow..praying xolair will help us also..so hard watching a 14 year old boy going through this at such an important time of childhood..breaks my heart
Rhonda Clark yes, when I see the kids going through this it’s so heartbreaking. I hope he has success with Xolair…it’s been amazing for a lot of people.
Thank you this is amazing to read! I had another Drs appointment yesterday as swelling was making my skin split and Ive been covered scalp to soles of feet again. This time I was prepared to accept steroids and although it scares the be jeepers out of me what will happen when I stop them (10 day dose last five days tapering, first time Ive ever had them) they certainly are working it seems as have woken with no new hives and swelling has gone down a lot. AND BEST NEWS is I now have a referral to Immunologist at ChCh Hospital and he is supposed to be amazing. Will be a few months before I get to see him but still – the light. Also up’d my self care again. Thanks again for this post. ❤
Vivienne Sinclair-Phillips Immunology referral…awesome!! That is where I found the most knowledgeable help. Hang in there!!
Oh wow thank you, that is great to hear.
Julia Zuniga Mendez
Thank you for the reminder and the encouragement. 2019 was a horrible year, I was diagnosed with CIU and gastroparesis (paralyzed stomach). I almost gave up on the Xolair, but by 6 months, it finally started helping. I’m still getting hives when I shower but at least they clear up in 3 hours. I just had my shots yesterday and a few hours later I broke out and started to freak out. Then I internally reminded myself to calm down because anxiety worsens both of my conditions. I’m newly diagnosed with gastroparesis and it’s a whole other nightmare trying to figure out what I can and can’t eat-mostly baby food at this point. Now the rain has set in and my fibromyalgia pain is back. In other words, I’m a complete mess. So thank you for your words of encouragement.
Julia Zuniga Mendez I cant imagine trying to deal with other serious afflictions on top of CIU…bless your heart Julia!
The road to healing is not easy 😕. But at the end of the day I look back and am sort of proud of myself for SURVIVING all that.
I know you’ll eventually improve your situation and can feel the same pride in yourself. Chronic disease is NO JOKE and does not produce weak people!
Julia Zuniga Mendez
Savannah Layne You should be proud. I am proud of myself. I have other health conditions as well, I’ve been through the ringer. But nothing has been able to defeat me so far and I refuse to give in! I have my bad days but in those dark moments I always remind myself that it could be a whole lot worse and that I am thankful for having such a strong support system. Better days are ahead, I just need reminding sometimes 😊
Julia Zuniga Mendez wonderful to hear! Resilience is a very good thing to have