I get it all over my body from the bottom of my feet to the top of my head. There is no place on my body that has not been broke out in hives at one time or another. Luckily I have not had a full body break out all at once.
Posted on 06/25/2008 9:33:33 PM PDT by stlnative
I was wondering if there are any other FReepers who suffer from chronic non-allergic Angioedema and Urticaria (Hives).
I have been through allergy tests (blood and scratch). I have had many autoimmune disease tests done. (Thyroid, Lupus, Lymphoma, etc)
Everything has come back negative so far. (I just had 15 different lab tests completed)
The only prescription med that would keep it at bay 90% of the time was Prednisone, but my specialist has taken me off the Prednisone due to the effects of long term usage of it. (I was on a low dose of 5mg to 10mg a day).
I am on 3 other types of prescription medicines but they are not working. (I have been on just about everything there is out there for Chronic Hives and none of them work to keep it at bay.)
I have been suffering from this since the very beginning of February 2008 and it is wearing me down both mentally and physically.
Please note again my Angioedema and Hives are not caused by allergies.
keep = kept
Shingles?
I am considering going to another specialist but I need the name of a good Allergy/Immunology Specialist is the St. Louis Metro area. (The doctor has to specialize in Immunology and be willing to do some medical investigation beyond just giving me meds and telling me to just live with it. I also have to make sure he is listed with my insurance company as a PPO.)
Any suggestions?
No it is not Shingles.
of course, when you don't have a reason for something its worse than having a known entity....I don't have any advice except keep trying differant doctors.....there is a wide discrepancy within the drs ranks as to knowledge in one area or another...
good luck and God Bless.....
In the beginning I was self-medicating with Benadryl also. I had to take it every 3.5 hours - 24 hours a day. I could not function with that much Benadryl in my system. It also started to give me severe heartburn. I finally went to my regular doctor and after many visits and numerous new meds with no results I was finally given Prednisone by her. Then I was told to find a specialist. The specialist ordered the lab tests, told me to get off the Prednisone and he gave me some new meds and some meds I had tried before but nothing is working at this point. All the tests came back negative. (but I know there are more that can be done). I am now entering my 6th month of dealing with this.
If you haven't seen a board certified dermatologist, try to find one in your area and make an appointment.
Also ask your doctor if your rash might be pityriasis rosea (pronounced pit-IH-rye-ah-sis row-SEE-ah) or "PR" for short.
Usually there is a "herald patch" which shows up before the all over rash, yet the herald patch is often missed. A herald patch is a roundish or oval slightly raised reddish patch. The herald patch is about the size of a quarter and can resemble a ringworm patch. They say that there is always a herald patch yet not everyone will notice the solitary herald patch.
The herald patch is followed a week or two later by the more extensive pityriasis rosea rash.
The age of people who get pityriasis rosea ranges from childhood to 35 but there are also reports of older people and infants as young as 3 months old getting it. It is generally not considered to be contagious and the cause of pityriasis rosea is still unknown.
Pityriasis rosea ranges in severity, it can itch, or not, and it eventually goes away with time.
Photos of pityriasis rosea
American Academy of Dermatology
Pityriasis Rosea
Pityriasis rosea is a rash that occurs most commonly in people between the ages of 10 and 35, but may occur at any age. The rash can last from several weeks to several months. Usually there are no permanent marks as a result of this condition, although some darker-skinned persons may develop long-lasting flat brown spots that eventually fade. It may occur at anytime of year, but pityriasis rosea is most common in the spring and fall...
Excerpted. Continues: American Acadmy of Dermatology
Pityriasis Rosea
DANIEL L. STULBERG, M.D., Utah Valley Regional Medical Center, Provo, Utah
JEFF WOLFREY, M.D., Good Samaritan Regional Medical Center, Phoenix, Arizona
Pityriasis rosea is a common, acute exanthem of uncertain etiology. Viral and bacterial causes have been sought, but convincing answers have not yet been found.
Pityriasis rosea typically affects children and young adults. It is characterized by an initial herald patch, followed by the development of a diffuse papulosquamous rash. The herald patch often is misdiagnosed as eczema. Pityriasis rosea is difficult to identify until the appearance of characteristic smaller secondary lesions that follow Langer's lines (cleavage lines).
Several medications can cause a rash similar to pityriasis rosea, and several diseases, including secondary syphilis, are included in the differential diagnosis.
One small controlled trial reported faster clearing of the exanthem with the use of erythromycin, but the mechanism of effect is unknown. Resolution of the rash may be hastened by ultraviolet light therapy but not without the risk of hyperpigmentation. Topical or systemic steroids and antihistamines often are used to relieve itching...
Excerpted. Continues: American Family Physician
I am a big beleiver in fish oil for unclear reasons except I've read that it is an good anti-inflammatory .....
Thank you but...
It is positively “hives”... They come up from the inside each and everytime. I can feel them before they turn red and then pop up. They may last a few hours to a few days, in the meantime it may pop up in another area on my body.
I positively have angioedema also... (deep swelling of the tissues just below the skin layers) (I carry a double EpiPen now in the event it ever hits me in the throat)
The angioedema cannot be “controlled” by prescription pills (well none that can be sold in the USA). Once it comes up you just have to wait it out.
The whole problem is my body is creating too much histamine which causes the angioedema and hives. But we don’t know why my body is over producing the histamine just yet, but we do know it is not an allergen causing it.
Cherry, it is not me who has the rash, it's stlnative.
It sounds as if you had some success then in getting diagnosed and treated. That's good to hear.
The important thing to remember is to seek diagnosis and treatment from a competent physician.
Fish oil is good unless you have an allergy to iodine.
They only know that it is not an allergen that they can pick up on a test. I get bouts of hives relatively regularly...I have figured out what usually causes them largely on my own.
For example, if I am exposed to poison ivy in any way, I get the characteristic rash...but then I have a systemic reaction that can last for weeks (the Docs have actually confirmed this reaction); it goes around and around my body to different areas...it looks nothing like the characteristic poison ivy rash but looks exactly like your arm, until it finally dies down.
It used to happen to me in the middle of winter as well, until I was keeping notes and found that it happened after I ate oysters or shrimp...that cleared up the year round breakouts.
In other news, I sometimes have bizarre reactions to small cuts or scratches. The area will become red and swollen, begin to weep from hives all around the original wound. For years, I was given antibiotics for a supposed "infection." Then, I happened to see a Doctor who was on call on the weekend...she took one look at it and said "Oh, I've seen this before...you have a hyperactive immune system...do you get hives a lot?" So, no antibiotics...but steroid cream does the trick for me if a wound starts looking a little odd.
I only told you this to get to the rest of the story: My co-worker had a case of hives that lasted for a year. Same story as yours: no allergies, no medication worked...it went on and on. They told her that they had no idea how long it would last, but that it would probably resolve.
Anyway, the hives appeared just after she moved into a new townhome. After months of frustration, she replaced the carpet and pad...the hives went away. Could have been a coincidence, or another type of environmental allergen that is not on the normal slate of tests. Just saying...in case you have changed anything of that nature in your life recently.
I use several things to help relieve the itching, but the problem is I cannot get them to stop coming up when they feel like coming up. How large of a patch of hives I have, how often they come up is out of my control.
The first picture I posted is when the hives are at their worse. The second picture is medium level hive outbreak. This week I have been having medium level outbreaks daily in different places on my body. It seems like once one area of hives goes away another area pops up with hives. So in one day, the first outbreak of the day many be on my back, then on my stomach, then on the tops of my legs, then on the inside of my arms. It is non-stop.
Perhaps I misunderstood your request asking us Freepers for input about your hives, urticaria and angioedema.
When you also provided photos of your rash (or maybe that's someone else's photos?) it was also understood that you were seeking ideas, experiences and/or more information.
That is the only reason I went to the trouble of posting information and links.
It sounds as if you have received a firm diagnosis and yet are frustrated by your continuing discomfort. That is understandable. Rashes are not fun.
If you remain uncomfortable or if you have doubts about your physician's diagnosis and treatment then it might be helpful for you to ask your physician to refer you to another medical doctor for a second opinion.
Hope you feel better soon.
This is the problem I have... the doctor says it will fizzle out also but he does not know how long it will take or what it will take. The problem is it is so hard to live like this day to day, outbreak after outbreak several times a day. It is having a major impact on my daily life.
Please know I appreciate your input.
Check the books on the Web site under "Resources", and also Theron Randolph's venerable book, An Alternative Approach to Allergies.
Are you under stress alot? I mean besides what the rash creates?
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