Showing posts with label mastocytosis. Show all posts
Showing posts with label mastocytosis. Show all posts
Wednesday, August 6, 2014
Mastocytosis Awareness
Monday, August 4, 2014
Candice Mastocytosis Triggers and Reaction Information Sheet
Known Allergens and Triggers
NSAIDS (such as Advil, Aleve, etc)
Sulfa Drugs
Mosquito Bites
Dramatic changes in temperature- from hot to cold or cold to hot
Any Amount of Humidity
Emotional Changes
Acidic Foods and Drinks (lemons, limes, pineapple, tomatoes, and their juices, etc)
High Histamine Foods and Drinks (avocados, brussels sprouts, cabbage, etc)
Reactions
Candice can usually feel when a reaction is about to happen and will inform someone that she doesn't feel well and that it is starting. She will say she is having a masto reaction. The sooner she gets the proper medications to stop the reaction the sooner she will feel better and will increase the possibility that she will not progress to the serious category of anaphylaxis. In the event she complains of headache and/or bone pain please give Acetaminophen.
Mild Reaction- Minor skin changes such as her "spots" on her skin will appear to look like a mosquito bite. She may become irritable and mildly feverish and flushed. Her eyes and nose may become reddish to purple and swell (looks as though she is tired or was recently crying).
-if this happens please give Cetirizine (Zyrtec) and Ranitidine (Zantac) as well as use her cooling towel and any other cooling products that are available (cool mist fan, cool vest, cold water) to attempt to stop further progression of more severe symptoms and monitor for progression of more severe symptoms
Moderate Reaction- She may have some of the above plus...major skin changes such as the "spots" on her skin will raise and fill with fluid, be painful, itchy, etc. She could have flushing, this is where she turns red and it feels hot to the touch (like a fever). She may become lethargic, fatigue, not interested in doing things she normally would enjoy doing. She may have a headache. She may have bone pain (especially leg/feet). A temper tantrum that happens in a matter of seconds with no apparent reason could occur. She may have diarrhea or complain of GI (tummy issues), bladder control issues, or even begin vomiting.
-if any of the above happen she must be given her emergency mediation Benadryl to attempt to stop the progression of more severe symptoms
Severe Reaction- Anaphylaxis may occur. If this occurs immediately give EPI PEN and call 911 to transport to the nearest facility. Then call parents.
NSAIDS (such as Advil, Aleve, etc)
Sulfa Drugs
Mosquito Bites
Dramatic changes in temperature- from hot to cold or cold to hot
Any Amount of Humidity
Emotional Changes
Acidic Foods and Drinks (lemons, limes, pineapple, tomatoes, and their juices, etc)
High Histamine Foods and Drinks (avocados, brussels sprouts, cabbage, etc)
Reactions
Candice can usually feel when a reaction is about to happen and will inform someone that she doesn't feel well and that it is starting. She will say she is having a masto reaction. The sooner she gets the proper medications to stop the reaction the sooner she will feel better and will increase the possibility that she will not progress to the serious category of anaphylaxis. In the event she complains of headache and/or bone pain please give Acetaminophen.
Mild Reaction- Minor skin changes such as her "spots" on her skin will appear to look like a mosquito bite. She may become irritable and mildly feverish and flushed. Her eyes and nose may become reddish to purple and swell (looks as though she is tired or was recently crying).
-if this happens please give Cetirizine (Zyrtec) and Ranitidine (Zantac) as well as use her cooling towel and any other cooling products that are available (cool mist fan, cool vest, cold water) to attempt to stop further progression of more severe symptoms and monitor for progression of more severe symptoms
Moderate Reaction- She may have some of the above plus...major skin changes such as the "spots" on her skin will raise and fill with fluid, be painful, itchy, etc. She could have flushing, this is where she turns red and it feels hot to the touch (like a fever). She may become lethargic, fatigue, not interested in doing things she normally would enjoy doing. She may have a headache. She may have bone pain (especially leg/feet). A temper tantrum that happens in a matter of seconds with no apparent reason could occur. She may have diarrhea or complain of GI (tummy issues), bladder control issues, or even begin vomiting.
-if any of the above happen she must be given her emergency mediation Benadryl to attempt to stop the progression of more severe symptoms
Severe Reaction- Anaphylaxis may occur. If this occurs immediately give EPI PEN and call 911 to transport to the nearest facility. Then call parents.
Mastocytosis Flare Pictures
Knuckles turning red (flushing, burning, painful)
Facial flushing
Beginning of a flare up with facial flushing, overall feeling unwell, lethargic
Facial flushing
Hand flushing
Candice mastocytoma flare on wrist. Mastocytosis flare eyes, looks as though tired or has recently cried.
Mastocytosis "spot" flare on thigh
Mastocytosis "spot" flare on back of leg
Mastocytosis "spots" flare on back of leg
Mastocytosis "spot" flare and flushing on back of thigh
"spots" on back of leg
Mastocytoma "spot" flare on ear
Flushing face
Start of flushing face
Flare of "spot" on leg
Flare of "spot" on leg
Flare of "spot" on leg
Tummy (GI) issues from flare up and flushing face and left arm
Flaring "spot" on top of leg and hive
Mastocytosis flare up reaction "spot" on back of leg starting to fill with fluid
Mastocytoma flare on face
Mastocytoma flare on wrist and face
"spots" flare on back of leg
"spot" flare on thigh
Mastocytma flare on wrist and face
Mastocytoma flare on toe
Wednesday, September 26, 2012
Tryptase Test
Tryptase
How is it used?
The tryptase test is a useful indicator of mast cell activation. Mast cells are large tissue cells present in highest amounts in the skin, the lining of the intestine and air passages, and the bone marrow. They release tryptase and other substances as part of the body's normal response to injury but also may release them as part of an allergic response. The tryptase test may be used:
- To confirm a diagnosis of anaphylaxis. Anaphylaxis is primarily diagnosed clinically, but a total tryptase may be ordered, along with a histamine test, to help confirm anaphylaxis as the cause of someone's acute symptoms. This is especially true if the person has recurrent episodes and/or if the diagnosis is uncertain.
- To help diagnose mastocytosis (too many mast cells) or a mast cell activation disorder. Mastocytosis is a rare group of disorders associated with an abnormal increase in the number of mast cells, which may accumulate in the skin (cutaneous mastocytosis) or in organs throughout the body (systemic mastocytosis).
Other tests may be used to evaluate a person's health status and to help rule out other conditions that can cause similar symptoms. These may include:
- Allergen-specific IgE blood tests to help determine the cause of an allergic reaction
- Complete Blood Count (CBC) to evaluate red and white blood cells
- Comprehensive Metabolic Panel (CMP) to evaluate organ function
- 5-hydroxyindoleacetic acid (5-HIAA) urine test to rule out a carcinoid tumor that may cause similar symptoms, such as flushing, diarrhea, and/or wheezing
- Gastrin test to look for increased secretion of this hormone, which may cause stomach or intestinal ulcers
Occasionally, a tryptase test may be performed postmortem to help determine if anaphylaxis was the cause of a person's death.
Histamine Test
Histamine Test
Why Get Tested?
To help confirm a diagnosis of anaphylaxis, mastocytosis, or mast cell activation
When to Get Tested?
When you have symptoms such as flushing, nausea, throat swelling or low blood pressure that may be due to a life-threatening allergic reaction; sometimes when your doctor suspects that you have mastocytosis or mast cell activation
Sample Required?
A blood sample drawn from a vein in your arm or a 24-hour urine collection
Test Preparation Needed?
None for anaphylaxis, but timing of the sample very soon after the beginning of symptoms is important. If testing is done for other conditions, you may be instructed to refrain from taking antihistamine and other medications. This should be discussed with your doctor.
The Test Sample
What is being tested?
Histamine is a substance that is released from specialized cells called mast cells when they are activated, often as part of an allergic immune response. This test measures the amount of histamine in the blood or urine.
Mast cells are large tissue cells found throughout the body. They are present mainly in the skin, the lining of the intestine and air passages, and the bone marrow. Mast cells are part of the body's normal response to injury as well as allergic (hypersensitivity) responses. They contain granules that store a number of chemicals, including histamine and tryptase, which are released when mast cells become activated. Histamine is responsible for many of the symptoms in persons with allergies.
Concentrations of histamine in the blood and urine are normally very low. Significant increases can be seen in people with a severe allergic reaction and in those with a disorder in which the number of mast cells increase (proliferate) and/or activate without apparent allergies.
The activation of many mast cells is associated with a severe form of acute allergic reaction termed anaphylaxis, which can cause hives (blisters on the skin), reddening of the skin (flushing), low blood pressure, severe narrowing of the air passages, and even death. With anaphylaxis, histamine concentrations in the blood increase rapidly, rising within 10 minutes of the start of symptoms and returning to normal within about 30 to 60 minutes. This increased production is also reflected a short time later in the urine as histamine and its primary metabolite, N-methylhistamine, are excreted.
Histamine and tryptase levels may be persistently increased in people with mastocytosis. This rare condition is associated with abnormal proliferation of mast cells and their infiltration and accumulation in the skin (cutaneous mastocytosis) and/or in organs throughout the body (systemic mastocytosis).
How is the sample collected for testing?
A blood sample is obtained by inserting a needle into a vein in the arm. For a 24-hour urine collection, all of the urine should be saved for a 24-hour period. It is best to keep the sample in a cool, dark place such as a refrigerator.
NOTE: If undergoing medical tests makes you or someone you care for anxious, embarrassed, or even difficult to manage, you might consider reading one or more of the following articles: Coping with Test Pain, Discomfort, and Anxiety, Tips on Blood Testing, Tips to Help Children through Their Medical Tests, and Tips to Help the Elderly through Their Medical Tests.
Another article, Follow That Sample, provides a glimpse at the collection and processing of a blood sample and throat culture.
Is any test preparation needed to ensure the quality of the sample?
If anaphylaxis is suspected, it is important to collect the sample very soon after the beginning of symptoms. If testing is done for other conditions, you may be instructed to refrain from taking antihistamine and other medications. This should be discussed with your doctor.
The Test
Mast cells, leaky gut, gluten, and IBS linked?
Mast cells, leaky gut, gluten, and IBS linked?
Digestive tract is the largest barrier to outside attack and only one cell thick.
Our digestive tract is the largest defensive barrier to outside attack. It is vulnerable to stress, foreign food proteins and bad bacteria. The lining of the digestive tract is protected by a single layer of epithelial cells. In the small intestine these are called enterocytes and in the colon they are called colonocytes. The small intestine is long enough to wrap around your waist about eight times whereas your colon is about as long as you are tall.
Irritable bowel syndrome (IBS), the most common digestive disorder, may be an inflammatory disease of the bowel caused by stress and leaky gut.
Irritable bowel syndrome is reported to be the most common gastrointestinal disorder. We need to start thinking of diarrhea predominant irritable bowel syndrome (D-IBS) as a disease caused by stress, food and or bad gut bacteria induced intestinal irritation resulting in leaky gut. In Gut, Guilarte et al. from Barcelona, Spain report finding mildly increased intra-epithelial lymphocytes (IELs) and marked increased mast cells in patients with diarrhea predominant IBS who also had higher levels of psychological stress than normal volunteers.
Allergy cell, the mast cell, may be the link to many causes of IBS but requires special intestinal stains.
A stress-mast cell axis has been proposed for possible cause of IBS. Mast cells release chemicals in response to triggers such as allergy and parasites typically in the body but have been linked to stress. Increased mast cells have been found in the large and small bowel of patients with IBS especially when a stain for tryptase, an enzyme specific for mast cells, is performed.
Mast cells can cause leaky gut resulting in increased pain and diarrhea in IBS.
Mast cells can increase intestinal permeability (cause leaky gut), increase visceral sensitivity (increased pain sensation and intensity) and increase motility (contractions of the intestine). This results in diarrhea and abdominal pain.
Increase in lymphocytes noted possibly explain the link to gluten noted in IBS.
The finding of increased lymphocytes or intraepithelial lymphocytosis in the patients of this most recent study was of particular interest to me. I am seeing this very commonly in my patients who do not meet criteria for celiac disease yet respond to a gluten-free diet who have previously been labeled IBS. Sometimes I find this in small intestine biopsies and sometimes in the colon of patients. Some have had a colonoscopy in the past but no biopsies were done because the colon "looked normal". In a recent post I discussed a study that noted IBS defining symptoms in over 50% of patients with microscopic colitis.
Is your digestive tract under attack and causing you ill health?
If you are not experiencing optimal health, consider the proposition that our digestive tract is now under constant attack and is frequently failing as a defensive barrier. Our enemies increasingly appear to be genetically modified or prepared foods and bad bacteria. The bad bacteria have taken over due to excess hygiene practices and liberal use of antibiotics. Our defense must include consideration of dietary changes such as reduction or elimination of gluten, eating organic foods, and the liberal use of probiotic supplements.
Copyright © 2007, The Food Doc, LLC, All Rights Reserved.
Reference:
Diarrhoea-predominant IBS patients show mast cell activation and hyperplasia in the jejunum. Guilarte, M et al. Gut February 2007; 56:203-209.
Mast cells, leaky gut, gluten, and IBS linked?
Digestive tract is the largest barrier to outside attack and only one cell thick.
Our digestive tract is the largest defensive barrier to outside attack. It is vulnerable to stress, foreign food proteins and bad bacteria. The lining of the digestive tract is protected by a single layer of epithelial cells. In the small intestine these are called enterocytes and in the colon they are called colonocytes. The small intestine is long enough to wrap around your waist about eight times whereas your colon is about as long as you are tall.
Irritable bowel syndrome (IBS), the most common digestive disorder, may be an inflammatory disease of the bowel caused by stress and leaky gut.
Irritable bowel syndrome is reported to be the most common gastrointestinal disorder. We need to start thinking of diarrhea predominant irritable bowel syndrome (D-IBS) as a disease caused by stress, food and or bad gut bacteria induced intestinal irritation resulting in leaky gut. In Gut, Guilarte et al. from Barcelona, Spain report finding mildly increased intra-epithelial lymphocytes (IELs) and marked increased mast cells in patients with diarrhea predominant IBS who also had higher levels of psychological stress than normal volunteers.
Allergy cell, the mast cell, may be the link to many causes of IBS but requires special intestinal stains.
A stress-mast cell axis has been proposed for possible cause of IBS. Mast cells release chemicals in response to triggers such as allergy and parasites typically in the body but have been linked to stress. Increased mast cells have been found in the large and small bowel of patients with IBS especially when a stain for tryptase, an enzyme specific for mast cells, is performed.
Mast cells can cause leaky gut resulting in increased pain and diarrhea in IBS.
Mast cells can increase intestinal permeability (cause leaky gut), increase visceral sensitivity (increased pain sensation and intensity) and increase motility (contractions of the intestine). This results in diarrhea and abdominal pain.
Increase in lymphocytes noted possibly explain the link to gluten noted in IBS.
The finding of increased lymphocytes or intraepithelial lymphocytosis in the patients of this most recent study was of particular interest to me. I am seeing this very commonly in my patients who do not meet criteria for celiac disease yet respond to a gluten-free diet who have previously been labeled IBS. Sometimes I find this in small intestine biopsies and sometimes in the colon of patients. Some have had a colonoscopy in the past but no biopsies were done because the colon "looked normal". In a recent post I discussed a study that noted IBS defining symptoms in over 50% of patients with microscopic colitis.
Is your digestive tract under attack and causing you ill health?
If you are not experiencing optimal health, consider the proposition that our digestive tract is now under constant attack and is frequently failing as a defensive barrier. Our enemies increasingly appear to be genetically modified or prepared foods and bad bacteria. The bad bacteria have taken over due to excess hygiene practices and liberal use of antibiotics. Our defense must include consideration of dietary changes such as reduction or elimination of gluten, eating organic foods, and the liberal use of probiotic supplements.
Copyright © 2007, The Food Doc, LLC, All Rights Reserved.
Reference:
Diarrhoea-predominant IBS patients show mast cell activation and hyperplasia in the jejunum. Guilarte, M et al. Gut February 2007; 56:203-209.
Mastocytosis Awareness Video
Our youngest daughter, Candice, was born with Mastocytosis. It's a rare orphan disease. Her older sister, Zoë, created this awareness video in hope for a cure!
Mastocytosis - An Orphan Disease Awareness Video
A dear friend made this mastocytosis awareness video!
My daughter Candice is in this video because she has this rare orphan disease.
Be Safe from Anaphylaxis-Mayo Clinic Video
Not all anaphylactic reactions are severe, they can be mild with subtler symptoms. Most people don't know that if you've had a mild reaction in the past you are at risk of having a life threatening one in the future.
International Chronic Urticaria Society FAQ
International Chronic Urticaria Society FAQ
Frequently Asked Questions
- What is chronic urticaria? (CU or CIU)?
- How long does CU last?
- What produces hives?
- What causes CU?
- How can I figure out the cause of my CU?
- How do I find out if it's autoimmune?
- What if I am not autoimmune?
- How can CU be controlled?
- What are H1 and H2?
- What other treatments are there?
- Will I have to stay on these medications forever?
- What can I do for immediate relief of itching?
- Are there any natural remedies for CU?
- How can I help manage my own care?
- How can I live with this?
What is chronic urticaria (CU or CIU)?
Chronic urticaria (CU) is a type of hives, also called nettle rash, that lasts for more than six weeks. Shorter bouts of hives are considered acute urticaria, and are treated differently.
Urticaria can be a manifestation of many conditions and illnesses, rather than one illness.
CIU stands for chronic idiopathic urticaria. The term idiopathic simply means 'of unknown cause'. The diagnosis is often made by ruling out known causes, but some causes, like mastocytosis, cannot absolutely be ruled out. How much your physician rules out depends on his or her personal diagnostic talent, knowledge and willingness to test.
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How long does CU last?
There's no easy answer to this question. Some people have it for a year or so, after which it goes away, never to return. Some people have remissions of as much as thirty years between episodes. Some people suffer from it their whole lives. The answer also lies in finding out possible causes. Some people are lucky enough to discover and treat the underlying cause well enough to make the hives go away.
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What produces hives?
Mast cell degranulation is the mechanism behind hives. In simple terms, certain little white blood cells are going bonkers and firing histamine. Mast cells fire in response to antigens (invaders, real or perceived) that come into your body either by contact (skin), inhalation or digestion. Antigens are also produced within the body by other factors, such as inflammation or systemic illnesses such as cancer, thyroid disease or lupus.
Besides histamine, mast cells also fire heparin, chrondroitin sulfates, neutral proteases, acid hydrolases and other enzymes. On the surface of these mast cells are little receptors for IgE (immunoglobulin E antibody). Think Velcro®. When an antigen comes into the body it "sticks" to the IgE receptors. When the mast cell gets loaded it starts firing its weapons(degranulating) and it encourages other mast cells as well as other inflammatory cells (basophils and leukotrienes) to fire also.
As the mast cells fire, they release histamine. Histamine and other mast cell byproducts cause
vasodilation (where the capillaries increase in diameter), which in turn causes the blood vessels to leak fluid into surrounding tissues. The histamine infusion into the tissues produces hives.
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vasodilation (where the capillaries increase in diameter), which in turn causes the blood vessels to leak fluid into surrounding tissues. The histamine infusion into the tissues produces hives.
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What causes CU?
CU can be caused by a great many different things. Generally, chronic urticaria is either autoimmune (a primary autoimmune disease all its own) or a symptom of something, it is just a matter of finding what that something is. Approximately half of CU cases are autoimmune.
CU may be related to an autoimmune problem such as lupus, thyroid disease, or multiple sclerosis. It may be an allergic reaction to something (although if the hives are chronic this is unlikely). If you have had hives for longer than six weeks, you may not discover the cause. This doesn't mean you should stop looking for the cause, but knowing this can help you focus on managing your symptoms and living with the condition on a daily basis.
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How can I figure out the cause of my CU?
If you want to pursue finding the cause, keep in mind it may take a long time to pinpoint, and it probably won't be easy to do. And you may never find the underlying cause. You will have to be your own detective and advocate to find it. If it means changing doctors, so be it. Listen to your body and keep a detailed diary of what goes into your body, what you are exposed to, and what your symptoms are like each day. A pattern may emerge. Several people with mastocytosis/mast cell activation syndrome have also reported that their symptoms began with an 'event' or trauma, like that seen in autoimmunity.
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How do I find out if it's autoimmune?
One of the first tests you should have is something called the autologous serum skin test (ASST). This test is still not widely available, so it may take some hunting around to find a local clinic or hospital that offers the test. The ASST involves taking a sample of your blood, spinning it down in a centrifuge to separate the serum, and then injecting the serum back into your arm. A wheal/flare response to the injection is considered positive for autoimmune CU.
Some things many people with autoimmune disease have in common:
- For women, a worsening of symptoms during periods
- Remissions during pregnancy
- Development of other autoimmune diseases
- Family history of various autoimmune problems (one family member may have rheumatoid arthritis, another may have thyroid disease, still another may have endometriosis)
- Onset of symptoms with an event or trauma such as accident, illness, surgery, or infection within approximately 6 months—something that kicks the immune system into high gear.
If you've experienced any of these, you may indeed have autoimmune CU, and this warrants further investigation.
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What if I am not autoimmune?
Here are a few things to consider:
- Can you take aspirin or other NSAIDs (non-steroidal anti-inflammatory drugs)? If not, you may be salicylate sensitive. Salicylates are the active ingredient in aspirin, and are found in all plant matter to some extent (fruits, vegetables, herbal supplements, etc). If you find that taking aspirin makes your hives worse, you may have discovered your cause. This is also true if you cannot tolerate other NSAIDs such as Ibuprofen or Aleve, because they are cross-reactive with salicylates. A low salicylate diet may help.
- A few people have found that a yeast-elimination program (diet and medications) has helped reduce their flares.
- You may be sensitive to additives or dyes or preservatives. Again, you have to be your own detective. Pay attention to what is happening, and your body may give you clues.
- Have you had a complete thyroid workup? It seems to be quite common that people with several autoimmune diseases also have thyroid trouble. If you have a thyroid disorder, you may find that the CU improves with appropriate thyroid medications.
- Have you ever had a root canal done? Some people in our group have had CU go away after being treated for infected root canalled teeth.
- Do you have any other possible sources of infection? Potential culprits are kidney infections, sinus infections and gallbladder infection.
- Hepatitis B and C have also been implicated in CU.
- Have you been tested for other autoimmune conditions? While the majority of autoimmune CU is a primary illness, hives can also be a symptom of some other autoimmune diseases, such as lupus. The most common screening test is ANA, which looks for some specific autoimmune diseases, such as lupus. However, it is possible to have a negative ANA and still be autoimmune. A diagnosis is made based on a combination of symptoms and lab results. One excellent starting place to learn more about autoimmune diseases is the American Autoimmune Related Diseases Association website.
- Do you have any other symptoms besides hiving? Stomach problems, slow healing, sinus problems, headaches, normally low temperature (less than 98) or low blood pressure, anything at all, whether you think it is related or not? The more you know about your symptoms and the medications you are currently taking, the better able you will be to manage your CU.
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How can CU be controlled?
The principal approach is to control mast cells, by controlling either the IgE stimulation or the histamine being leaked. Granted, this treats the symptom and not the cause, but until a cause is determined, it is in your best interest to try to gain some control over the symptoms. It's a matter of working with your doctor to find the right combination of medications for you.
Because skin contains receptors for H1 and H2, treatment frequently involves taking both an H1 and H2 antihistamine.
What are H1 and H2?
Mast cells release 3 known types of histamine, H1, H2, H3. It is believed there are also H4 and H5 histamine. Skin has receptors at least for H1 and H2. Airways have receptors for H1, the gastrointestinal (GI) tract has receptors for H2, and the brain is believed to have H3
receptors.
receptors.
The H1 drugs are those commonly thought of as antihistamines, such as Zyrtec, Benadryl, Claritin, Allegra, and Atarax. The H2's are normally thought of as ulcer medications, but are actually histamine 2 blockers. Zantac, Pepcid, Axid and Tagamet are the most common.
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What other treatments are there?
Some people also benefit from the tricyclic antidepressant Doxepin. For CU, it is prescribed at a much lower dose than for depression, and works as both an H1 and H2 blocker.
Still others find that drugs like Gastrocrom, Zyflo and Accolate help. Gastrocrom can also be made into a cream that helps the itching for many people.
Ephedrine sulphate or inhaled epinephrine can help some symptoms, especially for those with mast cell disease. Inhaled epi (Primatene Mist) is also used by some shockers as a first line of defense during anaphylaxis.
Another drug some people respond to is Procardia (which is actually a heart medication).
If your hives are due to autoimmunity, immunosuppressant drugs such as colchicine or Imuran (Azathioprine) may help.
And if you have ever experienced symptoms of anaphylatic shock (especially drop in blood pressure, throat swelling/tightness, trouble breathing), an Epipen® (emergency shot of epinephrine)—best to have at least two—is a MUST.
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Will I have to stay on these medications forever?
You may find that over time, the drugs you are taking aren't as effective. Talk to your doctor about switching to something else, or changing the combinations you are taking.
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What can I do for immediate relief of itching?
Here is a list of a few things that may help you. Before you slather your whole body with any of these, test it on a small area of skin away from your face, preferably for about three days. Many people are more reactive to any new substance when they are in a flare, so be cautious!
- Cromolyn cream is something you can make yourself using any form of cromolyn (Gastrocrom, Nasalcrom, Intal or cromolyn eyedrops). The recipe for it was developed by a nurse and pharmacist who are both mastocytosis sufferers, and many people swear by it.
- In a pinch, you can spray some Nasalcrom directly on an especially itchy spot of skin for instant relief.
- MSM lotion or cream works very well for the itching for some people.
- Other lotions and creams that have helped many include Sarna™ Lotion, Aveeno™ Lotion in the green bottle, Aveeno™ Oatmeal Bath, tea tree gel, and several other lotions which contain menthol.
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Are there any natural remedies for CU?
A number of people with CU have experienced relief using a variety of natural treatments. the list of possible treatments and remedies is quite long and results have been variable. Remember that many people with CU are very sensitive to certain chemicals, such as salicylates, and some of these chemicals may be found in natural remedies. Always proceed with caution when trying any new treatment, and collaborate with your medical professional.
Note: This post to the Urticaria Yahoo group reviews several possibilities. (You must be a member of the group to open this link. )
How can I help manage my own care?
Every time you see your doctor, ask for a photocopy of every test and his notes. This is your right as a patient. If you have to change doctors, get a second opinion, or try to keep the facts straight, having your own file will help.
If you find a medical journal article about a kind of hiving you think might be the same as yours, copy it and take it to your doctor. He has to include it in your medical file at your request—another of your rights as a patient.
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How can I live with this?
Never give up. You are going to be either your best friend or your worst enemy in this thing. Sometimes that choice will be made daily, hourly or by the minute. And take a look at our Useful Informationpages for some practical help.
The ICUS email list is a wonderful support group where you will find many others who may be able to help and will certainly listen to your joys and sorrows.
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