What relief is available? I suffer from hives induced by heat, pressure, and cold - Heat is the worse - I feel like I am suffocating; develop heaviness and ache in my calves. The hives are all over and the swelling of my joints is quite uncomfortable. I am constantly itchy- all over. I have tried zyrtec and allegra, which have produced anaphylactic-type reactions - and yet the allergy tests show no allergy to these medications. It’s almost as though I overproduce histamines. Medications I have taken my whole life now produce anaphylaxis - thoughts are greatly appreciated?
Thank you for your e mail, however I will be out of the office at 11:00 am cst on Friday June 22nd returning Monday June 25th. Please e mail aphotline@graebel.com if you need immediate assistance, or I will respond when I return.
Thank you
Cheryl Melvin
Graebel Companies
Accounts Payable
Wausau, WI
Hi Lisa,
Thank you for your message. I have recently started to follow my
dermatologist’s recommendations in a bit more detail, and have found the
past couple of weeks that the hives and itching have considerably diminished
although at this time they are not gone.
My hives bother me most at night and largely go away during the daytime. At
night, they are better if I use less blankets – preferably only a sheet,
depending of course on the room temperature. As you have also noted, heat
aggravates the thing. I find that I can also relieve symptoms by taking a
hot shower. But I must warn you that all the doctors with whom I have
discussed this say that the itching will rebound and be made worse by the
hot water.
I am presently using:
-
Stuff I put right ont the hives (topically applied cremes): Sarna creme.
It contains camphor and menthol and seems to help a lot. The doctor
originally had presecribed Sarna compound (Sarna mixed with Lidex, a
steroid). I am reluctant to use steroids, especially if they are not
needed, and asked him if I could just take plain Sarna without the steroids.
He said OK and it seems to work fine. I might mention also that before he
had prescribed the Sarna compound mixture, I had been using another cream
composed of two steroids, Lidex and Pramosone, which had stopped helping me.
That’s what led me to believe that the Sarna, not the Lidex, was now helping
and that therefore I probably don’t need the Lidex. Seems to have turned
out correctly. One small disadvantage for me of using plain Sarna is that
it is not a prescription item like the compound, so it is not covered by
insurance. -
Pills: Atarax (25 mg) and Doxepin (none, 10 mg, or 25 mg) at night –
both Atarax and Doxepin make me sleepy and if I use the 25 mg Doxepin choice
I am a bit drowsy most of the next day. Zyrtec (10 mg) each in the morning
and afternoon. It may have a little effect - I’m not sure. Same for
Allegra (180 mg). I sometimes think the Allegra (which the Doctor didn’t
tell me to use) does a little more than Zyrtec, maybe it’s all those extra
milligrams (mg)!
That’s about all I can tell you right now. Let me know how you make out.
Felix Rosenthal.
----- Original Message -----
From: “Lisa Ward” hives-cpt4722@lists.careplace.com
To: sigsep@cox.net
Sent: Sunday, June 24, 2007 11:36 AM
Subject: [hives] Chronic Physical Urticaria
Hi Lisa,
Actually, you are over-producing histamines, as well as
other chemicals produced by mast cells and basophils.
Chronic urticaria is caused by something causing mast
cell and basophil activation. In approx. half of all cases,
the cause is an autoantibody - in other words, it is an
autoimmune disease.
Since you react badly to H1 antihistamines, has your doctor
tried H2 antihistamines e.g. Zantac), prednisone, a mast
cell stabilizer such as cromolyn or Ketotifen, or other
immunosuppression such as IVIG or cyclosporine? Since you
have experienced anaphylactic symptoms, I do hope you have
a couple of epi-pens. If not, ask your doctor for some
right away.
A low histamine diet may help, you can find it at the
www.chronichives.com website:
http://www.chronichives.com/pages/lowhistamine.htm
Just remember that it can take a good month or two to see
results from the diet. Hundreds of people in our ICUS
support group have been helped with this diet. If you are
allergic to aspirin, then a low salicylate diet may work
better for you.
(http://www.chronichives.com/pages/lowsalicylatediet.htm)
There’s also a lot more useful information on that website,
so be sure to check out all the pages.
Another thing which may be helpful is to keep a detailed
diary of your symptoms and everything you are exposed to
throughout the day. And I mean EVERYTHING - including all
the food and drink you take in, products you put on your
skin, perfumes and other odors you are exposed to (for
example, many mastocytosis patients are very sensitive to
petroleum products), and note the times you are exposed to
things. Also note your symptoms or changes in your symptoms
throughout the day, including times, severity of itch and
number of hives, any other symptoms (some CUers have
gastric involvement and/or chronic headaches). Sometimes a
pattern will emerge…
hugs,
Jackie
On Sun, 24 Jun 2007 11:36:14 -0400
Lisa Ward hives-cpt4722@lists.careplace.com wrote:
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below this line will be cut off in your replyWhat relief is available? I suffer from hives induced
by heat, pressure, and cold - Heat is the worse - I feel
like I am suffocating; develop heaviness and ache in my
calves. The hives are all over and the swelling of my
joints is quite uncomfortable. I am constantly itchy-
all over. I have tried zyrtec and allegra, which have
produced anaphylactic-type reactions - and yet the
allergy tests show no allergy to these medications. It’s
almost as though I overproduce histamines. Medications I
have taken my whole life now produce anaphylaxis -
thoughts are greatly appreciated?__
To control the emails you receive from CarePlace, go to
http://www.careplace.com/account-notifications
Heat causes mast cells to degranulate (release their load
of chemicals), so taking a hot shower or bath forces what
is known as a histamine dump - tons of mast cells
degranulate all at once, releasing a ton of histamine all
at once. This can not only worsen the hives, it can cause
anaphylaxis, so is not recommended.
On Sun, 24 Jun 2007 17:13:56 -0400
sigsep hives-cpt4722@lists.careplace.com wrote:
~-
-------------- sent via
careplace.com
~-~ sigsep posted the message below in the Urticaria
Community Forum.
~-~ The entire conversation can be found here:
http://www.careplace.com/forum/topic/4722
~-~ To respond to this message, reply to this email or
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~--------------- all text
below this line will be cut off in your replyHi Lisa,
Thank you for your message. I have recently started to
follow my
dermatologist’s recommendations in a bit more detail, and
have found the
past couple of weeks that the hives and itching have
considerably diminished
although at this time they are not gone.My hives bother me most at night and largely go away
during the daytime. At
night, they are better if I use less blankets –
preferably only a sheet,
depending of course on the room temperature. As you have
also noted, heat
aggravates the thing. I find that I can also relieve
symptoms by taking a
hot shower. But I must warn you that all the doctors
with whom I have
discussed this say that the itching will rebound and be
made worse by the
hot water.I am presently using:
Stuff I put right ont the hives (topically applied
cremes): Sarna creme.
It contains camphor and menthol and seems to help a lot.
The doctor
originally had presecribed Sarna compound (Sarna mixed
with Lidex, a
steroid). I am reluctant to use steroids, especially if
they are not
needed, and asked him if I could just take plain Sarna
without the steroids.
He said OK and it seems to work fine. I might mention
also that before he
had prescribed the Sarna compound mixture, I had been
using another cream
composed of two steroids, Lidex and Pramosone, which had
stopped helping me.
That’s what led me to believe that the Sarna, not the
Lidex, was now helping
and that therefore I probably don’t need the Lidex.
Seems to have turned
out correctly. One small disadvantage for me of using
plain Sarna is that
it is not a prescription item like the compound, so it is
not covered by
insurance.Pills: Atarax (25 mg) and Doxepin (none, 10 mg, or 25
mg) at night –
both Atarax and Doxepin make me sleepy and if I use the
25 mg Doxepin choice
I am a bit drowsy most of the next day. Zyrtec (10 mg)
each in the morning
and afternoon. It may have a little effect - I’m not
sure. Same for
Allegra (180 mg). I sometimes think the Allegra (which
the Doctor didn’t
tell me to use) does a little more than Zyrtec, maybe
it’s all those extra
milligrams (mg)!That’s about all I can tell you right now. Let me know
how you make out.Felix Rosenthal.
----- Original Message -----
From: "Lisa Ward"
To:
Sent: Sunday, June 24, 2007 11:36 AM
Subject: [hives] Chronic Physical Urticaria
One last thing, I have an appointment in four weeks with an urticaria specialist!
-----Original Message-----
From: vaughan1962 hives-cpt4722@lists.careplace.com
Sent: Jun 25, 2007 3:31 PM
To: lisaward12@earthlink.net
Subject: Re: [hives] Chronic Physical Urticaria
I’d be very careful using steroids such as prednisone, etc. Talk to a
competent doctor first.
Felix.
----- Original Message -----
From: “vaughan1962” hives-cpt4722@lists.careplace.com
To: sigsep@cox.net
Sent: Monday, June 25, 2007 3:21 PM
Subject: Re: [hives] Chronic Physical Urticaria
Best wishes, Lisa. Keep us informed. Thanks.
Felix.
----- Original Message -----
From: “Lisa Ward” hives-cpt4722@lists.careplace.com
To: sigsep@cox.net
Sent: Monday, June 25, 2007 7:47 PM
Subject: Re: [hives] Chronic Physical Urticaria
True, steroids have nasty side effects, but so do all those
chemicals released by mast cells and basophils. Considering
that this is a person who has a history of anaphylactic
reactions, and that she is not responding to traditional
H1/H2 therapy, steroids are often the next step.
More about mast cells and the chemicals released by them:
Mast cells are an important part of the immune system, and
are also very much involved in the hiving process. They
contain various by-product chemicals, which are released
when mast cells degranulate. Degranulation is when mast
cells release their chemicals. The chemicals they release,
and they effects those chemicals produce are:
Histamine: causes vasodilatation, erythema, edema,
pruritus, urticaria, bronchoconstriction, increased gastric
acid, intestinal cramping, further degranulation of mast
cells, leukocyte activation
Heparin: causes osteoporosis, inhibition of localized
clotting; rarely, prolonged partial thromboplastin time
Tryptase: causes inhibition of coagulation locally,
bronchoconstriction, osteoporosis
Chymase: causes inhibition of coagulation locally,
activation of mast cells, possibly causes blistering
Cathepsin G and carboxypeptidase: cause Kinin generation,
possibly cause hepatic fibrosis
Acid hydrolases: cause bone lesions, osteoporosis
Leukotrienes: cause bronchoconstriction, increased vascular
permeability and contractility
Prostaglandin 2 (PGD2): causes pruritus, pain, rhinorrhea,
hypotension, flushing, osteoporosis
Platelet-activating factor: causes wheal and flare, pain,
pruritus
Tumor necrosis factor: causes recruitment of inflammatory
cells
Interleukins: act as chemoattractant for neutrophils
More information about corticosteroids:
DOSING
Our adrenal glands produce approximately the equivalent of
4mg/day prednisone. A low dose is slightly higher, around
5-15mg/day. A moderate dose is 0.5mg prednisone per
kilogram of body weight per day. A high dose 1-3mg
prednisone/kilogram body weight per day. A massive dose is
15-30mg prednisone/kilogram body weight per day.
SIDE EFFECTS
The side effects of prednisone are dependent upon dose and
duration. Basically, prednisone speeds up the aging
process, so the long term side effects are those
typically associated with aging. The adrenal glands make
the equivalent of 4mg prednisone every day; pred use
suppresses that production, which is why tapering off pred
is so important. The adrenal glands need a chance to begin
working again. Alternate-day therapy is preferred over
daily, as it helps keep the side effects to a minimum and
also helps prevent adrenal failure.
Some of the possible effects of long term and/or high
dosage use of prednisone and other corticosteroids; some of
these can be permanent:
- bone density loss (osteoporosis - which can cause
compression and stress fractures) - weight gain (and it’s not easy to lose)
- cataracts
- glaucoma
- exophthalmos (eyeball prominence)
- thinning of the skin, fragile skin
- plethora (facial redness)
- violaceous striae (stretch marks)
- slow wound healing
- thinning of scalp hair
- increased body hair
- bruising
- worsening of existing diabetes, or causing
steroid-induced diabetes - increased blood fat (hyperlipoproteinemia)
- negative balance of calcium, nitrogen and magnesium
(catabolic state) - I should mention here that low blood
levels of calcium (hypocalcemia) can result in tetany,
which is extremely PAINFUL -been there, done that - salt retention
- suppression of adrenal glands (which is why you must
taper off, to give them a chance to start working again) - menstrual abnormalities
- impotence in guys
- suppression of growth in children
- weak muscles
- osteonecrosis of bone ends
- gastritis
- peptic ulcer
- thrush
- pancreatitis
- hypertension
- congestive heart failure in pre-disposed individuals
- alterations in mood
- psychosis (rare)
- convulsions (rare)
- increased susceptibility to infections
- suppression of immune responses (part of the reason why
it suppresses the hives) - change in white blood cell population, with increase in
neutrophils and decrease in in lymphocytes and monocytes
(source: ‘Coping with Prednisone’ by Eugenia Zukerman and
Julie R. Ingelfinger, MD, page 64-65)
The long term side effects of pred are also cumulative,
meaning that any future pred use will cause further
permanent damage. People coming off prednisone
often experience a rebound effect where their hives worsen,
which sometimes results in them going back on it - and
needing higher and higher doses to control their symptoms.
And following long term use and/or high doses, one can go
through withdrawals - mainly quite painful muscle cramps
and bone pain. It’s best to avoid corticosteroids if at all
possible, except in extreme cases of CU, symptoms that
cannot be controlled with other meds, or if you have life
threatening symptoms (anaphylaxis). It can also be a
problem in cases of mastocytosis, since masto destroys your
good bone marrow, leading to osteoporosis. Taking pred on
top of that may speed up the process.
On Mon, 25 Jun 2007 20:50:40 -0400
sigsep hives-cpt4722@lists.careplace.com wrote:
~-
-------------- sent via
careplace.com
~-~ sigsep posted the message below in the Urticaria
Community Forum.
~-~ The entire conversation can be found here:
http://www.careplace.com/forum/topic/4722
~-~ To respond to this message, reply to this email or
sign in to CarePlace.com
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~--------------- all text
below this line will be cut off in your replyI’d be very careful using steroids such as prednisone,
etc. Talk to a
competent doctor first.Felix.
Dear Vaughan 1962,
Thank you for the information on hot showers etc. I must tell you however
that they seem to do me more good than harm. Say I get up in the morning,
feeling kind of itchy all over. A hot shower directed at an itchy area will
cause an intense feeling, sort of like a counter-irritant like the feeling
induced by scratching an itchy site. Then after that I won’t have any
itching, perhaps as long as the rest of the day. Is that really so bad? How
does this response relate to the responses that you have described?
Thanks, Felix.
----- Original Message -----
From: “vaughan1962” hives-cpt4722@lists.careplace.com
To: sigsep@cox.net
Sent: Monday, June 25, 2007 3:31 PM
Subject: Re: [hives] Chronic Physical Urticaria
The shot I rec’d today was cortisone - I am well aware of the risks, however, I have had this for years and it has overtaken my life. We’ll see if this provides some relief, if any. (I can’t even cry without my face swelling and being in pain from the burn of the tears!)
-----Original Message-----
From: sigsep hives-cpt4722@lists.careplace.com
Sent: Jun 25, 2007 8:50 PM
To: lisaward12@earthlink.net
Subject: Re: [hives] Chronic Physical Urticaria
Thank you for your message - I have rec’d a lot of support from folks on this site! Today I saw a new doctor and we both agreed to a cortisone shot - I am terribly anxious about taking any form of medication, but my quality of life is pretty much non-existant with not being able to take walks most summer days, excercise, and anything that involves outdoors. We will see how this works. I know all the terrible side-effects of steroids, but I have a really bad case. The H1s and H2s do not work. I looked at the diet yesterday, briefly, and will look again tonight. Many thanks.
-----Original Message-----
From: vaughan1962 hives-cpt4722@lists.careplace.com
Sent: Jun 25, 2007 3:21 PM
To: lisaward12@earthlink.net
Subject: Re: [hives] Chronic Physical Urticaria
Have you looked into the possibility that you have a yeast overgrowth or Candida? Have a furious battle with these bad boys, I finally figured out that I had yeast overgrowth. You can do research on Candida and you might be surprised by how many of the symptoms you have. It is estimated that about 75% of the population have an overgrowth of yeast. It’s hard to test for so some people suffer differnent illnesses for a long time before someone finally figures it out.
Since I started treating the Candida/yeast overgrowth I have see a ton of improvement in my hives. In fact, they are almost gone. For most people, they have to follow a treatment plan for 6-8 months to insure that they won’t relapse after the treatment stops, but that doesn’t mean you’ll have to wait 6-8 months for improvement in hives. I say improvement in a week. You’re probably wondering why, if 75% of the population has an overgrowth, then why aren’t more people walking around with hives? It’s because we all suffer from it in different degrees and some manifest symptoms differently. For some women it means that they are constantly battling yeast infections. For others, they experience a lot of digestive problems. The treatment is fairly simple and it will not hurt you to try and see if it helps. I was going to go and get tested for it until I read the most doctors just give the patient the treatment and if their symptoms improve then they’ll say that yeast was the problem afterall.
If left untreated, Candida overgrowth can lead to other more serious problems. In fact they are constantly linking a lot of chronic diseases back to this yeast problem.
Let me know if you are interested and I will share with you what I have done for myself. Email me at annadurfee@yahoo.com. I hate to see others suffer so please email me and we’ll talk. I would also discourage you from taking too many steriod treatments as it will most likely make the problem worst. I think that steriod treatments are only helpful to people who are having a severe reaction or from someone who definitely knows what they were allergic to and who knows that the hives will go away in a few days.
I still use some anti-histamines, but I’m finding I don’t have to take as much and soon I will trying weening myself off all anti-histamines.
Most conventional doctors only treat symptoms and your hives are a symptom of something else. You need to treat the cause if you are going to get any relief and if you are going to get cured. Hives are not supposed to be something that we all have to learn to deal with.
-Anna