Edema & Cold Urticaria

[juliegee]

Hi All-

I know we've recently had a few members with teen daughters who struggle with swelling & cold urticaria. I recently stumbled across an abstract that may point towards possible treatment that been proven VERY effective so far.

http://www.ncbi.nlm.nih.gov/pubmed/21077535

Clin Exp Obstet Gynecol. 2010;37(3):235-6.

Idiopathic edema, a condition associated with pelvic pain and other symptoms in women, as a remedial cause of chronic cold induced urticaria.

Check JH, Cohen R, Check D.

The University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School at Camden, Cooper Hospital/University Medical Center, Department of Obstetrics and Gynecology, Division of Reproductive Endocrinology & Infertility, Camden, NJ, USA. laurie@ccivf.com

Abstract

PURPOSE: To determine if the treatment of cold induced urticaria refractory to conventional antihistamine-type therapy would respond to treatment with sympathomimetic amines.

METHODS: Dextroamphetamine sulfate (15 mg) extended release capsules were prescribed to be taken daily in the morning.

RESULTS: The cold-induced urticaria completely disappeared and antihistamine therapy was discontinued.

CONCLUSIONS: Treatment of chronic refractory cold-induced urticaria effectively responds to treatment with sympathomimetic amines similar to other cases of chronic refractory urticaria that are not merely cold induced. Manifestation of idiopathic orthostatic edema, a condition predominantly of women, should always be considered in the differential diagnosis of baffling medical conditions.

PMID: 21077535 [PubMed - in process]

Very exciting to see specific research that address this constellation of symptoms. Hope it helps!!!

Julie

[janiedelite]

That is really interesting... my mom had severe cold induced edema and urticaria til she was a teen. She remembers walking to school in dresses and having her legs covered with red welts. She had to leave the house an hour early each morning and wait in the school restroom until the welts subsided. She was so embarrassed.

Now she's had known carcinoid syndrome since her 30's, but she actually remembers having symptoms of carcinoid in her youth as well. I'm sure her carcinoids secrete excess histamine, which contributed to her cold-induced edema and urticaria.

Too bad this info wasn't available 50 years ago! Taking this antihistamine would have given her much better quality of life.

[sue1234]

That's great information for those that have this. I actually have the opposite--if I get hot, my hands and feet swell, and then I start getting itchy all over. So, I can empathize. I wonder what the mechanism behind the issue? They said it happens almost exclusively in females, so must be female hormone or anatomy related.

That dextroampetamine sounds like something that would set my heart to racing!

[juliegee]

That is really interesting... my mom had severe cold induced edema and urticaria til she was a teen. She remembers walking to school in dresses and having her legs covered with red welts. She had to leave the house an hour early each morning and wait in the school restroom until the welts subsided. She was so embarrassed.

Now she's had known carcinoid syndrome since her 30's, but she actually remembers having symptoms of carcinoid in her youth as well. I'm sure her carcinoids secrete excess histamine, which contributed to her cold-induced edema and urticaria.

Too bad this info wasn't available 50 years ago! Taking this antihistamine would have given her much better quality of life.

That's what so interesting about this finding. They did NOT respond to antihistamines, but to a class of drugs called: sympathomimetic amines. Really fascinating stuff. It's kind of like they are being treated with low doses of epinepherine...sort of goes along with my theory of chronic low grade anaphylaxis.

http://en.wikipedia.org/wiki/Sympathomimetic_drug

Wonder how this relates to carcinoid syndrome as well. That's fascinating that your Mom had this early symptom. I can't believe that it wasn't related.

[janiedelite]

Hi Sue, thanks for clarifying this for me! Hmmm... epinephrine is contraindicated in carcinoid syndrome because it causes the carcinoid tumors to become more active, and can cause carcinoid crisis. Still I DO believe there is a connection...

[juliegee]

That's great information for those that have this. I actually have the opposite--if I get hot, my hands and feet swell, and then I start getting itchy all over. So, I can empathize. I wonder what the mechanism behind the issue? They said it happens almost exclusively in females, so must be female hormone or anatomy related.

That dextroampetamine sounds like something that would set my heart to racing!

I know. I feel the same way. I tend to be hot, sweaty & itchy myself with really cold hands & feet I have used an epi-pen during an attack & it DID stop symptoms. I also remember a member recently posting about how the use of stimulant drugs practically CURED her POTS- very paradoxical.

I think the mechanism is a defect in the sympathetic nervous system. I have to read the full article to really get it.

[sue1234]

Julie, yea, read the full article if you have access. It would be interesting to know all the details. You know how we like to all talk these things over! By the way, when you mention that it almost causes a paradoxical reaction, that seems to be a common thread amongst alot of us here. We seem to respond to alot of meds that way. So, who knows? A little epinephrine might just be the most calming thing for some of us!!

Thankful, it's odd that you mention carcinoid. Along with me continuously being tested for a pheo, I also get the 5-IAAA(?) to test for carcinoid. I seem to reek "endocrine problem", yet the labs don't show anything yet.

[janiedelite]

Just FYI Sue1234, 5HIAA only tests for carcinoid tumor activity during the 24 hrs of the actual urine collection. Chromogranin A (CgA) blood test can be run by both Arup and ISI labs. It can test for carcinoid tumor activity during the weeks prior to your blood test. It's the marker I have drawn to check for carcinoid in myself. And what's most telling is the trend of your numbers, even if you're in the normal range but the numbers are going upward with time.

Julie, I don't want to hijack this thread... back to cold-induced urticaria!

[sue1234]

Thankful, good to know about the CgA. I knew when I wrote 5-IAAA something wasn't right!! 5-HIAA, 5-HIAA....

I once took a 5-HTP to try to see if it would help me sleep, and besides NOT sleeping, I got HOT. I am normally hot, and it just got worse. I know that it is a precursor to serotonin. And I know serotonin is related to carcinoid somehow.

[juliegee]

kjd11 & TLC' Mom-

This abstract may be of help to your daughters specifically. Hope you see it!!!

Julie

[crowebirds]

Julie -

Thank you for keeping an eye out for me and letting me know this was out here. We will have to go to the doctor here soon anyhow, because the one drug that works for TLC is too strong. This will be perfect timing to bring this up.

When I looked more into detail about the class of the drug and the other drugs that fall in the same class is like a big WOW moment. TLC has always responded well to Albuterol during an attack even though she does not have asthma and has always responded well while taking Robitussin CF when she has cold symptoms. Both have impacted not only what they were to treat, but the "refractory" CICU as well.

Thank you,

Robin

[kjd111]

While my daughter doesn't get cold uticaria, she does have capillary leak, causing swelling/edema. She was started on dextroamphetamine last April. It has definitely helped a lot - in fact i would have said it was one of the better meds she is on. As i understand it, anything in this class of drugs, essentially stimulants, is good for those with low and/or non-responsive catecholamine levels as it makes more norepinephrine available at the peripheral nerve endings. My daughter has NMH with some rise in heartrate but not the classic POTS. Her catecholamines are low/normal lying down and don't change at all when she stands. So for those with this type of problem, this drug is definitely worth trying. I hear a lot of folks who have some concerns since its a stimulant but i was told that my daughter's dose is well below the potential "abuse" level. She takes 10mg of the regular, rather than extended version, twice a day and could probably have a little more. 7 months on, we have had no problems or weird reactions with it at all.

Anyone with high norepinephrine levels would probably not react well to this as it raises norepinephrine and also has some vasopressor type effects.

Kate