Treatment of Cholinergic Urticaria with ImmunoglobulinE Therapy Omalizumab
Post by: gazrang on October 30, 2008, 01:05:07 AM
Hi all.
I found this forum and blog about several months ago, and took great information about Cholinergic Urticaria.
I’ve had Cholinergic Urticaria since 2002, so it’s been 7 years. I live in Seoul, South Korea. There are also many people who have Cholinergic Urticaria here. First time I got attacked, thought that I’m alone made me sad. But Now I’m not alone. Luckily, itching is not too strong that I can walk in&out door.
Today, after some surfing the web I found some interesting article abstract.
Like HiveGuy (admin), I think the cause of Cholinergic Urticaria is maybe connected with immune system. That article is issued Feb.2008. So I think it’s the lastest article about Cholinergic Urticaria in the eye of immune system. Sadly I couldn’t read that yet because I dont have credit card 🙁
I think many doctors do research for conquear the Cholinergic Urticaria these days. Hope we could read that results(i.e articles) easily like this forum and blog…
thanks.
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Title: Re: Latest Article about Cholinergic Urticaria
Post by: steven on October 30, 2008, 08:23:35 AM
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Thanks for your article, gazrang.
It’s a great news to heard that there are successful treatment of Cholinergic Urticaria. 😀
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Title: Re: Latest Article about Cholinergic Urticaria
Post by: HivesGuy on October 30, 2008, 03:27:30 PM
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Hello gazrang! Thanks for the great post and welcome to the forum!
Like you I have also hit the 7 year mark, although I did have a short remission period of about a couple of years in between. So I am sorry to hear that you too also suffer with this terrible condition as well. Hopefully we will all one day be cured.
I really appreciate your taking the time to post the link to that article. The basic abstract seems interesting. Apparently they have tried using anti-immunoglobulin E treatment on a person with Cholinergic Urticaria. I did some quick research on the web and it seems this is an immune type therapy and anti-immunoglobulin therapy is used on things such as allergies, immune disorders, chronic infections, and more.
I agree that it seems the immune system is involved on some kind of level. I am not sure if this is a genetic immune thing, or if something triggered our immune system, or if it is something as simple as not enough sunlight which helps regulate our immune system. I really hope we can find more out about this condition as time passes.
The immunoglubulin thing could be something people are interested in trying with their doctors, but I hope to do more research on this soon. I will probably make a post on the blog about this within the next day or two. It would be great if this was safe and effective. But a few things I have read so far seems that there could be some risks involved. Again, it would be best to talk with a medical professional about it. But it is great that they still do some research and experiments on Cholinergic Urticaria.
Again, I just want to welcome you to the forum and thank you for the very interesting article and post.
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Title: Re: Latest Article about Cholinergic Urticaria
Post by: gazrang on October 31, 2008, 01:23:34 AM
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Thank you HivesGuy.
After reading your reply, I also searched some immunoglobin therapy, and found an interesting article again. It contains “antigen(s) in human sweat”. As we know really well, we get itch, and pruritus just before sweat comes out. Japanese Doctors got some idea on that process and do immunotherapy using “purified sweat antigen”.
The article says the symptoms got better after the therapy was done.
Those doctors who conducted these experiment again done some more further research on Cholinergic Urticaria in the eye of sweat sensitivity. Below is the article.
We should think of our Cholinergic Urticaria is more related with our hypersensitivity…as latest doctor’s work show it.
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Title: Re: Latest Article about Cholinergic Urticaria
Post by: HivesGuy on November 01, 2008, 03:03:15 PM
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Hello,
Thanks for your follow-up. Those were some interesting article excerpts, thanks again for all of the info. I agree that it seems something is wrong with antibodies or our immune system. I am not sure if we have developed just some kind of immune reaction to some chemical that mediates the release of sweat, or if we just have an overproduction of some antibody (such as IgE), or what.
Hopefully we can figure this out eventually, or at least a doctor or researcher can figure it out for us. That still leaves a lot of unanswered questions, such as: “why did we develop this sensitivity, why does it seem to go away in some people after a few years, is there a safe way to treat it, etc.”
I hope we will have some of these questions answered in the next few years, and hopefully we will all return to normal one day.
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Title: Treatment of Cholinergic Urticaria with ImmunoglobulinE Therapy Omalizumab
Post by: gazrang on December 29, 2008, 01:29:18 AM
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Hi, I’m Gazrang.
I’ve found this article abstract months ago but it didn’t show entire text. But today, I could finally find the entire content.(using Google tralslation service) It says igE antibody injection could completely cure the symptom.(Completely!!) Read it. I omitted some footnotes and references. I have the figure 1 of this article but I cannot attach any file on posting section. Hivesguy help me!
Metz, M.; Bergmann, P.; Zuberbier, T.; Maurer, M. *
* Department of Dermatology and Allergy Charité- Universitätsmedizin Berlin Charitéplatz 1 D-10117 Berlin, Germany
A possible new treatment alternative and new insight into the pathogenesis of cholinergic urticaria.
Accepted for publication 10 October 2007
Cholinergic urticaria is typically characterized by intense pruritus and pin-sized wheals surrounded by erythema.Symptoms are provoked by an increase in body core temperature induced by passive warming (eg hot bath), physical exercise and/or emotional stress.Although most patients with cholinergic urticaria present only mild to moderate reactions, the symptoms can be severe with massive pruritus and wheal and flare reactions covering the whole body, sometimes with concomitant systemic reactions ( 1 ).An additional problem in these severe cases of cholinergic urticaria is that conventional antihistamine treatment is often unsuccessful.
We present the case of a 25-year-old caucasian male with severe cholinergic urticaria who experienced unbearable pruritus and wheals, occasionally associated with dizziness and cardiac palpitations, induced by even mildly elevated outside temperatures, hot beverages, minimal physical exercise (eg by carrying grocery bags or walking stairs), and by emotional stress such as driving a car in heavy traffic or giving presentations in front of an audience.The patient was diagnosed with cholinergic urticaria 5 years ago and had been treated since then with various sedating and nonsedating antihistamines, disodium cromoglycate, ketotifen, leukotriene receptor antagonist, corticosteroids (up to 60 mg/day), dapsone, danazol, doxepin, beta-blocker, photochemotherapy (PUVA) as well as various diets, none of which resulted in a significant reduction in symptoms.At the time the patient presented himself in our department, his medication consisted of a combination of desloratadine (3 × 5 mg), levocetirizine (2 × 5 mg), hydroxyzine (1 × 25 mg), montelukast (1 × 10 mg), ketotifen (2 × 1 mg), and propranolol (2 × 40 mg).Even under this medication, the patient was severely impaired in his every day life and we were able to provoke cholinergic urticaria symptoms (pruritus, wheal, and flare) in the patient by moderate physical exercise at room temperature.The patient also suffers from seasonal allergic rhinoconjunctivitis but is otherwise healthy.
The pathogenesis of cholinergic urticaria is still poorly understood.It is generally assumed that an increase in body temperature in cholinergic urticaria patients results in the upregulation of one or more mast cell secretagogues and thereby mast cell degranulation in the skin, which subsequently induces vasodilation, extravasation, and erythema ( 2 ).Passive transfer experiments from human to monkey indicate that a serum factor may exist in some patients with cholinergic urticaria ( 3 ).Thus, as of yet, the mast cell activating mechanisms and signals remain largely unclear.
Omalizumab is a recombinant humanized monoclonal antibody against immunoglobulin E (IgE).It acts by binding free IgE at the same site that IgE would bind to its high-affinity receptor (FcϵRI) on mast cells, thereby reducing free IgE in the serum ( 4 ).Moreover, as a result of depleting free IgE, omalizumab strongly downregulates the expression of FcϵRI on mast cells ( 5 ).Recently, successful treatment of a patient with cold urticaria ( 6 ) and three patients with chronic urticaria ( 7 ) with omalizumab has been reported.Because of these positive reports, and because none of the previous treatment strategies had resulted in an improvement of cholinergic urticaria in our patient, we began to treat our patient with omalizumab (with 300 mg every 2 weeks).To our surprise, our patient reported back to us after the second injection (ie, in week 3 after start of treatment), with a significant improvement of his symptoms ( Fig. 1 ).Also, he had reduced his concomitant medication to desloratadine 3 × daily and propranolol once daily.His condition continued to improve and in week 5 after the start of omalizumab our patient reported to not have experienced any symptoms for an entire week [(his) best week during the past 5 years].We performed physical exercise provocation tests in weeks 10 and 20 of treatment with omalizumab, which were completely negative, even under maximal physical strain.In week 11, the patient stopped all concomitant medication.Today, the patient has been free of any symptoms for 22 weeks and he is able to resume all activities, including hot baths and extensive workouts.
This is, to our knowledge, the first report of a successful treatment of cholinergic urticaria with omalizumab.The observed rapid improvement in the symptoms during anti-IgE therapy supports the hypothesis that cholinergic urticaria might be mediated by IgE and gives rise to the speculation that IgE might constitute the serum factor found by serum transfer studies in some patients with cholinergic urticaria ( 3 ).Further clinical trials should investigate whether anti-IgE treatment is in general beneficial for patients with cholinergic urticaria; these future investigations might also help to understand the pathogenetic mechanism of the disease.This case shows that cholinergic urticaria can be rapidly and successfully treated with omalizumab at the recommended dosage without side-effects.
We thank Nikki Rooks for excellent technical assistance and Jodie Urcioli for proofreading the manuscript.
Figure 1.Omalizumab treatment results in the rapid and marked reduction in symptoms of cholinergic urticaria.Black arrows indicate the time points of omalizumab shots.Blue arrows indicate physical provocation tests assessed by the physician, bars represent the clinician’s scoring of the severity of symptoms in the provocation test on a four-point quantitative scale (0-3+’s).Lines indicate the patient’s retrospective scoring of symptoms on a nine-point scale derived from adding individual scores for itch, wheals, and reddening (0, none; 1, mild; 2, moderate; and 3, severe).
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Title: Re: Successful Treatment of Cholinergic Urticaria – ImmunoglobulinE therapy article text
Post by: dice on December 29, 2008, 06:36:31 PM
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This does sound like a hopeful solution, there’s even a wikipedia article although some paragraphs do make me hesitent to go forward and make a request currently.
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Title: Re: Successful Treatment of Cholinergic Urticaria – ImmunoglobulinE therapy article text
Post by: HivesGuy on December 30, 2008, 05:36:37 PM
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Thanks for the great and informative post gazrang!
I apologize about not being able to upload the picture. There were spammers coming on here and placing pictures of naked people, so I had to completely disable the picture upload function, and I do apologize for that. Those mean and perverted spammers! lol
However, you can place a link to the picture online if you want, and people can copy and paste the image link to see the picture. Plus I have to watch out and cannot allow posting of potentially copyrighted images.
I like the fact that they are still doing research, and that this could be a new potential treatment for this. I get really excited about the idea of potentially getting a few shots and beating this thing for good. It is great that it successfully treated Cholinergic Urticaria. However, there have been few other cases where a person was also treated (for example: In one article I read online a person did chemo and it went away, another person did steroids and it went away, etc.). But again, this could be even more promising.
However, I agree with Dice, and the Wikipedia article makes me a little nervous about trying the treatment as well. It still seems like a new treatment, and the fact that there could be unknown risks (such as cancer), makes me very nervous. I feel they need to do way more research into this to see if it has any negative effects years down the line.
Before I personally did it, I would want to see how people did throughout their lives after doing it. Just to be safe and know if they had a normal life span. It would be terrible to do it and then die of cancer or something just a few years afterwards. Especially since there is always a chance that our Cholinergic Urticaria could go away forever at any time.
Thanks again so much for the great info Gazrang!
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Title: Re: Successful Treatment of Cholinergic Urticaria – ImmunoglobulinE therapy article text
Post by: ww2 on December 30, 2008, 08:37:03 PM
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That’s interesting. Maybe theres some kind of correlation between high IgE levels and Cholinergic Urticaria. I have high IgE levels. At the moment, I dont think any docter would authorise this therapy for a patient with Cholinergic Urticaria because its still experimental.
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Title: Re: recent research
Post by: HivesGuy on July 04, 2009, 02:19:23 PM
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Thanks for sharing those article links, rkn85.
I have read about the omalizumab before. It seems that it is very new and has not been thoroughly tested. Some research indicates that it may pose a cancer risk due to its affect on the immune system. So while that is great that it may be a treatment for Cholinergic Urticaria, it still seems a little new and potentially dangerous for me.
The other article talks about cetirizine, montelukast, and propanolol. I do know that some people with Cholinergic Urticaria also have experimented with 2 different types of antihistamines (such as Zantac and Zyrtec). Some people are able to reduce or eliminate symptoms by experimenting with different meds, but this should only be done under doctors supervision/instructions.
Thanks again for those links.
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Title: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: Darkhorse on April 05, 2011, 07:18:54 PM
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I know anti-IgE therapy has been mentioned before but I feel more light needs to be shed on the subject
I would like to point your particular attention at two particular studies
The first one involving a 12 year old female with idiopathic cold urticaria (which is a physical urticaria subtype) which has been successfully treated with anti-IgE therapy
(To download right-click and save target as)
(To view right-click open in new tab)
Successful treatment of cold-induced urticaria with anti-IgE therapy
J ALLERGY CLIN IMMUNOL
JUNE 2006
I would like to draw your particular attention to this 2008 study which I feel is of huge interest to our community
The Successful treatment of cholinergic urticaria with anti-immunoglobulin E therapy in a 25 year old male how had cholinergic
urticaria for 5 years
(To download right-click and save target as)
(To view right-click open in new tab)
Successful treatment of cholinergic urticaria with anti-immunoglobulin E therapy
Department of Dermatology and Allergy
Charité – Universitätsmedizin Berlin
This is a huge breakthrough!
I would now like to go into more detail on anti-IgE therapy and the details of the study
What is anti-IgE therapy?
Anti-IgE therapy involves the use of anti-IgE antibodies which directly targets IgE serum antibodies, thus inhibiting the central mechanism of immediate-type hypersensitivity reactions. Application of anti-IgE antibodies effectively reduces IgE serum levels regardless of allergen specificity. [1]
What is anti-IgE therapy generally used for in the medical community?
Anti-IgE therapy is approved for patients with moderate-to-severe or severe allergic asthma. But anti-IgE therapy has also been successfully tested in patients with allergic rhinitis, asthma, and food allergy, showing significant efficacy in reducing symptom scores and the use of rescue medications. [2]
How is anti-IgE therapy administered?
Anti-IgE therapy involves using a drug called ‘omalizumab’ which is humanized antibody drug, humanized refers to the process of development which involves developing the specific antibody generation in a non-human immune system (such as that in mice) [3]
It is administered via subcutaneous injection which involves injecting into the adipose tissue dermis layer. The injection is preformed with a very small needle normally a 29 gauge which is used by type two diabetics. The pain equivalent is that of a small pinch. This is to be carried out by a health care professional.
How much does anti-IgE therapy cost?
Omalizumab is a relatively new drug, due to the difficulty in replicating the drug the cost is currently high ($10,000 to $30,000 per year) depending on the dosage needed [1]
Right now your saying; no chance in hell will I ever have that much money to spend on this condition/ or no way I would ever shell out that much money for medication.
But don’t let the big figures throw you off, let me break it down for you
Physical urticaria is common and lasts for an average of 5 to 6 years. The population most affected is young adults age 18 to 25 years.
5-6 years of some of the prime years of your life can you put a price on that?
Say your on medication consisting of anti-histamines which you may pay $10-30 a month for, doesn’t seem like much does it?
Let’s see;
12 months in a year $10 x 12= $120 – $ 3 – x 12 = $360 a year multiply by the average amount of time people experience physical urticaria for of 5-6 years [4] Which equals between $720 and $2160
You also have to take into consideration you have to but up with the side effects of those anti-histamine drugs over the years which may involve drowsiness and problems with waking in the the morning [5] dizziness, tinnitus, blurred vision, euphoria, uncoordination, anxiety, insomnia, tremor, nausea and vomiting, constipation, diarrhea, dry mouth, and dry cough. Infrequent adverse effects include urinary retention, palpitations, hypotension, headache, hallucination, and psychosis. [6]
What about the side effects of anti-IgE therapy (omalizumab)?
In clinical studies 0.5% of patients receiving XOLAIR developed cancer, compared to 0.2% of patients receiving placebo (an injection with no active medicine). Joint inflammation or pain, rash, fever, and swollen lymph nodes have been seen in patients taking XOLAIR. Talk to your doctor if you’ve experienced any of these signs and symptoms. In patients >12 years of age, the most commonly observed side effects in asthma studies that had a >1% difference between XOLAIR and placebo were joint pain (8%), pain (general) ( 7%), leg pain (4%), tiredness (fatigue) (3%), dizziness (3%), fracture (2%), arm pain (2%), itching (2%), inflammation of the skin (2%), and earache (2%). In asthma studies, the most common side effects in patients, who either needed to stop XOLAIR or needed medical attention, were injection site reaction (45%), viral infections (23%), upper respiratory tract infection (20%), sinusitis (16%), headache (15%), and sore throat (11%). These side effects were seen at the same rates in XOLAIR-treated patients as in patients in the control group who received placebo. [7]
Considering omalizumab is not used permanently the side effects are temporary.
Still with me?…
Let’s talk about this all important study
The patient which had used various sedating and nonsedating antihistamines, disodium cromoglycate, ketotifen, leukotriene receptor antagonist, corticosteroids (up to 60 mg/day), dapsone, danazol, doxepin, beta-blocker, photochemotherapy (PUVA) as well as various diets, none of which resulted in a significant reduction in symptoms.
The patient began with omalizumab of 300 mg every 2 weeks, after only his second injection the patient had experienced a significant
improvement of his symptoms and could cut down his concoction of medication down to only to desloratadine 3 x daily and propranolol once daily. His condition continued to improve and in week 5 after the start of omalizumab our patient reported to not have experienced any symptoms for an entire week “(his) best week during the past 5 years”
In weeks 10 and 20 of treatment with omalizumab they performed physical exercise provocation tests which were completely
negative, even under maximal physical strain.
In week 11, the patient stopped all concomitant medication. Today, the patient has been free of any symptoms for 22 weeks and he is able to resume all activities, including hot baths and extensive workouts.
This is, to our knowledge, the first report of a successful treatment of cholinergic urticaria with omalizumab.
During this treatment the patient used 1650 mg’s of omalizumab which equated to a cost of $8450 – €5,938 – £5,183 for treatment which resulted in a permanent cure for his 5 year long condition of cholinergic urticaria
References:
[1] The role of anti-IgE therapy in combination with allergen specific immunotherapy for seasonal allergic rhinitis. PMID: 18020623
[2] NEJM
I hope to update this and fix any errors in the weeks ahead
Thanks for reading
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Title: Re: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: AdamM on April 06, 2011, 07:03:11 PM
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The problem here is 10 – 30k is most peoples yearly incomes especially at the years 18 – 25 at 20k a year that’s 100 – 120k over 5 – 6 years. Compared to the anti-histamine treatment of $720 – $2160 over 5 – 6 years. Essentially a down payment on a vehicle.
We’re talking Porsche money here.
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Title: Re: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: Darkhorse on April 06, 2011, 07:42:22 PM
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Quote from: AdamM on April 06, 2011, 07:03:11 PM
The problem here is 10 – 30k is most peoples yearly incomes especially at the years 18 – 25 at 20k a year that’s 100 – 120k over 5 – 6 years. Compared to the anti-histamine treatment of $720 – $2160 over 5 – 6 years. Essentially a down payment on a vehicle.
We’re talking Porsche money here.
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Title: Re: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: mody on April 08, 2011, 01:24:07 PM
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thank you for valuable infromation, you encourage me to try this drug , msy be in the next few month, just i need to save some 1st 😉
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Title: Re: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: nowash on August 22, 2011, 01:03:03 AM
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I just reread this with the intention of approaching my doctor with this article to see if we could try omalizumab.
Bad news folks, the guy with ChU was not permanently cured. If you read the article carefully it says he stopped all concomitant medication, that is, all the medication he had to take prior (which was a ****load). It shows in a chart that he took injections up to 6 months, 300mg every two weeks. I read in a 2006 article that the price of omalizumab is (or was) $470 per 150mg. So this guy spent about $470 x 6 x 2 = $5640, which I guess is okay if you have the money. I’m kind of disappointed that it wasn’t a cure. Kind of extremely disappointed.
I’ve had some weird results with subcutaneous sweat injections though. Most times it doesn’t do much, but some times it works completely. Let me explain to you that by completely I mean that I have realized symptoms I have that I wasn’t aware were abnormal. To make a list:
– I have a chronic headache that is always there, and gets worse with my hives/allergic response.
– I have chronic vision problems (blurry vision, like focusing in and out with a camera) and no depth perception due to what I guess is ciliary spasm or spasm of accomodation.
– I have to what my best guess is Frey’s syndrome. Smelling savory food makes the right side of my face itch, eating savory food can give me a rash and acne on that same side. I had a salivary gland infection (thanks to cetirizine) approx. 2 years ago and had very little acne or food problems before then. Fast forward to today and I can barely eat anything.
– I have chronic muscle pain that goes away when the sweat injections work.
– I have chronic stomach pain and nausea and urgency.
– Water makes me itch.
– Touching things makes me itch, walking on carpet makes my feet itch.
– Dirt makes me itch.
– Moving makes me itch. My movement is rigid because of this.
– Thinking hard makes me itch, and so on.
I am so elated to know what the hell has been wrong with me all my life and am so close to the finding some kind of cure. Thing is I am going crazy with the fact that the treatment is not consistent and could be years before this things goes away. I talked to my allergist about the sweat injections and he said allergy shots can’t work that fast, which I am not sure I believe so readily. I highly doubt my vision change could be due to placebo. If this is not working the same way allergy shots work there’s only one other explanation I can think of. In some migraine patients there have been experiments using subcutaneous histamine which abort their headaches, and I guess that’s what these injections could be doing. Doubt it though.
Now that I have realized omalizumab didn’t actually cure someone’s ChU I guess I’m not going to go through with it. Thing is I don’t know what else to do. So we have to wait til someone finds a cure for allergies and autoimmune disease? They’ll cure aging before they do that!
There is one thing I haven’t tried: helminthic therapy. Jesus, how pathetic is our healthcare system that we have to do the research ourselves and find the treatments ourselves. If we did find a cure, who would believe us?
This disease is making me go insane.
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Title: Re: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: Struikgewas on February 16, 2012, 08:57:36 AM
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Here two studies which suggest it is effective:
Has anyone on this forum tried it?
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Title: Re: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: willdev on April 02, 2012, 07:24:00 PM
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Hi guys,
Just thought I would chip in and say I have tried Omalizumab. Bad news is it didn’t work on me. I have now exhausted all treatments out there for cholinergic urticaria. The only thing that cures it temporarily is drinking a lot of alcohol.
I believe that I have been misdiagnosed and have something else wrong with my body. I am seeing a dermatologist next month where hopefully I will get more tests run on me.
Best Regards
Will
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Title: Re: Cholinergic urticaria permanently cured with anti-IgE therapy
Post by: HivesGuy on April 05, 2012, 11:27:22 AM
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Hey Willdev,
So sorry the treatment didn’t help at all. I really hope you can get this under control soon. I know you must feel bummed out a lot. Just hang on to that thread of hope. I think you will beat this thing. Don’t give up.