Chronic urticaria for over 5 years now.

Did Xolair for a year and hives went away, stopped xolair under dr recommendation

Well I am back to this support page and at the end of my rope. I am thankful you are all still here though! Chronic urticaria for over 5 years now. Did Xolair for a year and hives went away, stopped xolair under dr recommendation. Continued to be hive free for 7 months.
They are back with a vengeance.I am covered from head to toe daily.
Angiodema on face , lips, eyes.Taking all the prescription antihistamines –
and vitamins including quercertin.Started back on Xolair have had two rounds so far.Currently on second round of prednisone ( the devil’s tic tacs) and still covered .Went on low histamine diet no change. I am still on the diet.Mine are autoimmune in nature they say but nothing working .
Missing way to much work and barely functioning.
Any words of encouragement or tips to try would be greatly appreciated.
Thank you .

Discussion

Sharon Kiser Gillespie
All my health issues began after that bout of Rocky Mountain Spotted fever before then was extremely healthy

Sharon Kiser Gillespie
I also had a diagnosed case of Rocky Mountain Spotted fever about 13 years ago . I was in icu for two weeks. I have been tested for Lyme disease they insist I do not have that .

Sharon Kiser Gillespie
Definitely the mold.
Have always been sensitive to mold since childhood.
Severely allergic to penicillin since childhood.

Jan Maher
Some things to rule out perhaps —
Do you have any root canals? Have you been exposed to mold? To tic- borne diseases? You may have some source of ongoing toxicity in your body that is overwhelming its ability to process via normal routes.

Connie Watts
The problem with stopping xolair is that when you have to go back on it it often times doesn’t work at all or not as good as the first time. I’ve been on it for over 3 years and I’m refusing to get off. I know I’m not in remission, im hive free but the generalized itching is still present, by far not as bad as before xolair but always there….

Susan Lynn
I’m on xolair tried vitamins too. Was on them for a month with no hives. Then like you they came back with a vengeance.
I’m back on xolair and thank god allegra and Zantac twice a day now down to once a day. Try 2 Allegra with one Zantac. Twice a day. Then when you’re hive free for a week go down to one twice a day .allegra is the best antihistamine for me. And yes I’m on xolair. My allergist says not to stop the antihistamines. It takes a while for your body to keep them in your system . When i told her the vitamins were helping she said try to go off those and see what happens. Instead I went off the allegra. Then all hell broke loose. Long story short I’m off the vitamins sticking with xolair and Allegra .

Sharon Kiser Gillespie
Susan Lynn I take Allegra in the morning with Zantac
Singular at night Flonase nasal spray Prescription xyzal 3 times a day
Currently on prednisone and xolair All this and still having to swig children’s Benadryl when they get on my mouth.
I do take vitamins double doses of vitamin C.
It’s terrible to not find a pattern or treatment
Thank you I learn so much from everyone ‘s personal journey .

Susan Lynn
Sharon Kiser Gillespie have to tried organic black seed oil and milk thistle vitamin d3 2000mg with vitamin C?
What are you taking now? Just xolair and prednisone?

Sharon Kiser Gillespie
Susan Lynn no all the ones listed above plus prednisone and have had two rounds of xolair shots .
All that am covered from head to toe in hives right now.

Sharon Kiser Gillespie
I do the milk thistle and vitamin D
Have not tried black seed oil. Thank you

Keith Dorman
Sharon Kiser Gillespie How many Xolair shots did it take for your hives to stop the first time?

Sharon Kiser Gillespie
Keith Dorman , initially I received my xolair shots through an oncologist/ hematologists because that is the only way my insurance would cover it.
They gave me 6 shots at a time.
My immunologist says I should have gotten 2 @ 300 mg.
I explain all that to say by my second round of xolair shots then I was 85% hive free.
By the time I had four rounds was completely hive free for the first time in 3 years.

Sharon Kiser Gillespie
Keith Dorman but again was getting way more than typical dosage.

Susan Lynn
Sharon Kiser Gillespie
Take a hot Epsom salt bath with colloidal oatmeal and then take 2 undyed benedryl. All the vitamins helped me. None of the antihistamines worked except Allegra +Zantac Can you try Allegra? Xyzal and Zyrtec did nothing for me at all. Suggestion : drink a ton a water, take zero sugar( fruits included) just eat greens and chicken. Clean yourself out.

Sharon Kiser Gillespie
That’s what I take at night. I think I have tried them all. The daily dose plan I take was created by the immunologist/ allergist.
Sometimes I feel like stopping all the antihistamines because nothing works Thank you !

Angelia Renee
Sharon Kiser Gillespie have you tried singular? It helped me so much

Susie Scala
Please google the AIP diet – Auto Immune Protocol – it is only for 30 days and it re-sets your immune system. It save me!!!!

Sharon Kiser Gillespie
Susie Scala I am currently on this.
I will continue as know the benefits but it has been 3 weeks and no changes at all. Thank you

Susie Scala
Please continue. Your gut will heal and as a consequence so will all your inflammation.

Susan Lynn
Susie Scala try a probiotic. I’m on synbio365. I ordered online. They’re foil sealed so they’re very good. Most probiotic die if they come in a bottle. Maybe that’s what’s helping me too. Who knows but I’m also eating anything i want without breaking out.

Jeanne Naser
So sorry. I’m still trying to figure it out myself. Mine comes and goes in waves. I mean I always have some. But a few are bearable. But when you’re covered with them. And the angioedema is the worst, and scary. I wish I had a cure for us all. Bad sadly I don’t. Hang in there.

Lisa Graham Soldati
Nothing worked for me but prednisone and Dapsone. Have you tried Dapsone?

Sharon Kiser Gillespie
No I have not . I tried doxepine and it did not work.
Prednisone typically at least gives me a few days of relief. This is my second back to back round and nothing .
Thank you

Lisa Graham Soldati
Sharon, there’s just nothing that gives me any relief. My immunologist said I’m a worst case scenario and she’s shocked that Xolair and cyclosporin and doxepin did nothing for me. Try Dapsone.

Sharon Kiser Gillespie
Lisa Graham Soldati sounds like me and what my immunologist says!
I will ask thank you so much !

Sharon Kiser Gillespie
Thank you!
You too. Hopefully the third time really is the charm!

Sandy Kromer Eggert
So sorry to hear you are having a recurrence. I’ve had two rounds of Xolair also and am waiting for the miracle clearing to arrive. I guess we just have to keep being patient but man that is easier said than done when the suffering is so real. Hang in there.