Chronic Itching failed all control meds

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Sara Anamarie
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Date Joined Feb 2016
Total Posts : 7
   Posted 3/15/2016 11:07 AM (GMT -6)   
I am 17 and a year ago I was diagnosed with chronic idiopathic urticaria, or that was what my doctor called it. I was on Zyrtec daily for allergies and Zantac for reflux. I was also on and off prednisone due to anaphylactic reactions. I was put on hydroxyzine initially and that helped for a few months, but it didn't work after a few months. Next we began Xolair injections once a month, but they really never did much to help. Along with the hydroxyzine zyrtec zantac and Xolair I was put on Doxepin high dose. Once again this initially helped, but in the long run the relief was short lived. Now we are back at square one. I am still getting hives despite 75mg of hydroxyzine(1-2 times a day), 20mg Zyrtec(twice a day), 150mg Zantac(twice a day), 100mg of Doxepin, and Benadryl every 4-6 hours. I see my dr on Thursday, and I think we are going to do prednisone which I am actually in favor of at this point. The physicians assistant I see when my dr is booked said they may want to do a 24 hour urine collection but I have to be off all allergy meds and steroids before we can do that. He also said they want to look into an atypical presentation of mast-cell activation or mastocytosis. I know that mast-call diseases are common in people with Ehlers Danlos Syndrom which I have. I just wanted to see if anyone went through things like this, because my doctors office has never had someone "fail" off all control meds like I have

Veteran Member

Date Joined Mar 2015
Total Posts : 1316
   Posted 3/15/2016 12:40 PM (GMT -6)   
I had that and went to a clinic in st. Louis called prevention and healing with a dr y
he found dental infection and parasites
he is an md-retired us army-go see him

Regular Member

Date Joined Jun 2013
Total Posts : 21
   Posted 5/1/2016 3:08 PM (GMT -6)   
I have nonclonal mast cell activation syndrome. Its up there with mastocytosis. Yes....i have a horrible time with meds. I actually react to the mexs themselves as well as other external triggers. I also mast cell dump and react to stress....sun....well water..heat...and exercise. Its not fun for sure. I am currently on ketotifen (not manufactured in the u.s. i have it compounded), montelukast and cromolyn. These are all mast cell stabilizers. Its been difficult but helpful. If at all possible get an appt. Witb xr marrianna castells in boston. She is one of 2 top mast cell docs in the u.s. if youre not from the u.s. i dont really have any suggestions as to whom to be seen by. But you absolutely need tested.
Nonclonal Mast Cell Activation Syndrom, CYP Genome Defficiency, Kounis Syndrome


Joan M
Veteran Member

Date Joined Jan 2006
Total Posts : 2052
   Posted 6/4/2016 8:08 AM (GMT -6)   
I am allergic and had a skin reaction. Must use only dove soap, must only take lukewarm showers, should use keri or keri like stuff on skin. Must use lotion on body (be careful for allergic reactions) Must use only no dyes and no preservatives no perfume washing detergent, same for dryer sheets.

Must take allegra short term and FOUND THE CHLORINE IN THE POOL helped. Must use selsum blue if scalp is itchy and it goes on and on.

best wishes - allergic asthma since 1983

Tan1a pl
New Member

Date Joined Jun 2016
Total Posts : 9
   Posted 6/29/2016 9:01 PM (GMT -6)   
I cannot use it too often topically without becoming reactive to it, but essential oil lavender applied topically has helped me with itching.

Also, if medication does not help, check for food allergies. They are hard to detect. I went non GMO and organic. With everything I avoided, migraines went away and allergies calmed down. Unfortunately, I also have to avoid wheat gluten as I am allergic to it. The symptoms were like pollen allergies, but there was not any pollen in January here in Wisconsin.

I hope it gets better.

New Member

Date Joined Jun 2016
Total Posts : 2
   Posted 6/29/2016 10:47 PM (GMT -6)   
I can't believe I found others like me, I have been fighting chronic ideopatic uticaria for almostv11 years. I have been to multiple Dr's had varying tests....allergy, skin, food and. TB, hepatitis, Hiv, and hodgkins lymphoma??? All negative, This first started in 2003, when My Dr. Gave me samples of Celebrex....I am allergic to sulfate drugs!! It was so horrible I ended up overdosing. By accident on Adavan...just to get some sleep!!! Ended up in psych ward for 2 weeks. The Dr. Saw my skin, and the spontaneous , burning hives...all over me...She said i didn't need the psych ward....the Dorm Ward is what I needed!!! Yay, someone with some common sense!!! I did creams, lotions pills, UVB light therapy......and anything else I was advised...this went on for about 3 yrs...some online got me hooked up with the Morgellons Dr. Never heard of this...I tried apple cider vinegar...parasite cleanses....coilldal silver. It went away for about 2 yrs...not totally, but manageable.In Jan 2014 I got the flu...very badly...took one week of Tamiflu.......broke out like I had the chicken wasback with a vengeance.....I had some relief with prednisone...for awhile, but as a diabetic, my blood sugar rose to. 850, ended up unconscious, and rushed to Dr said I had Wegners, and he was SORRY..... Another said Shrug strauss...another, hodgkins lymphoma..... Bottom line....I have considered SUICIDE... Even spoke to my pastor, my family, and the funeral home!!! MY IGE factors are high, my histamine levels are 70x normal. range...and my skin biopsy suggest I have been assaulted by arthropods.....!! Had my home professionally bed bugs....AT all, don't know what to do?????WHY DO YOU NEVER HEAR about THIS? ON ANY DR. SHOW?? I am a 54 or old College educated Mother of 2 and Grandmother of 2, I have a beautiful home, a great husband, I don't work...I have no known stressors, it has been. Suggested that this is self inflicted??????WHAT.... So, no Dr. Can find a reason, so I'm doing this to MYSELF?? by the way, I have a Masters degree in psychology, and am certainly NOT INFLICTING THIS ON MYSELF!! I have positive ANA tests?? I AM SORRY THIS IS SOOOO LONG, I AM AT THE END OF MY ROPE AND. AM SERIOUSLY CONSIDERING SUICIDE....ANY HELP WOULD BE APPRECIATED....Sincerely Tired and itchy..IN ROCHESTER

Post Edited (Tired&itchy) : 6/29/2016 9:54:26 PM (GMT-6)

Tan1a pl
New Member

Date Joined Jun 2016
Total Posts : 9
   Posted 6/29/2016 11:59 PM (GMT -6)   
Wild oregano oil has been known to help with skin allergies. I took it internally on daily basis for years. It does act as a blood thinner, but for me that seemed to help rather than harm.
Diagnoses: fibro, allergies, migraines, connective tissue disease, gluten allergic
Off all prescription medication and mostly symptom free, but not totally in control of allergies....
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