FAQ • churg-strauss syndrome

FAQ - churg-strauss syndrome
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Can you have gastric bypass when you have systemic vasculitis (Churg Strauss Syndrome)?

I am on prednisone @ 20mg bid and cytoxan @ 500 mg bid, but am otherwise stable. I have not had a flareup of the vasculitis within the last year (finally).

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I would think it would be fine as your looking at 2 completely different systems being effected. Regardless the best person to ask is a surgeon that specializes in bariatrics and since most provide free consultations it really shouldn't be hard to sit down with one and have all your questions answered you might even be able to do it all online if you have problems getting around. (+ info)

survival rate of Churg-Strauss syndrome?

What exactly does this mean?

Churg-Strauss syndrome:
1-year survival rate is 90% and the 5-year survival rate is 62

Does it mean 90% of people live for 1 year. and 62% have lived 5yrs - and then you die?

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Immniosuppressant options for Churg-Strauss Syndrome.?

My husband (67) has Churg-Strauss Syndrome. He is allergic to most of the immnio-suppressants that are normally used to help combat this illness (Cytoxin, Immuran and Rituxin). He is currently taking 100mg of prednisone daily. The last couple of days around here have been....challenging. He has a new episode beginning, not that he has completely healed from the last one. And our doctor has suggested raising his prednisone level again. Lord, I can't decide if this disease will kill him or me.

The maintenance dose of prednisone has already caused severe damage to his kidneys. His glucose levels are so irratic now, I can't imagine adding another 20 or 50 mgs to this. They have caused bilateral DVTs in his legs. He has chronic CHF.

Anyway....my question. Are there any other immniosuppressants available? Or should we try injectible steroids?

Additionally. He is spilling 400 times more protein than he should into urine. His blood pressure is still way too high, even though he is on three bp meds.

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His allergies make it all pretty tough huh. He doesnt sound too good at the moment but neither do you. I know this word gets thrown around a lot but 'stress' isnt helping either of you at the moment. Some will consider this bad advice but in your case I think this could help. You're not in a position to focus on any sort of meditation or real relaxation, so I wonder if your doctor would give the both of you a very low dose of valium, or something like that.

These things are addictive so low doses only and only when you're desperate. It would help you sleep too and Im sure you and hubby could both use a bit more than you're getting.

You both need to stay as calm as you can at the moment. You both need to rest. (+ info)

Has anyone heard of Churg Strauss syndrome or know anyone who has it?

Thanks very much for the info.
I really wanted any personal experiences of this disease. I'm on steroids long term and am only in my 30's..worried about long term effects.
Thanks very much for the info.
I really wanted any personal experiences of this disease. I'm on steroids long term and am only in my 30's..worried about long term effects.

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Churg Strauss Syndrome (also called Churg Strauss Vasculitis) is an extremely rare autoimmune disease of unknown cause, characterized by inflammation of the blood vessels in people who are asthmatic or have some type of allergic condition.

Although there is no "cure" for Churg Strauss, the symptoms have been shown to improve with regimens of corticosteroids and (although it is NOT a cancer) sometimes low dose chemotherapy.

See the link below for a more comprehensive description of this disease. Good luck. (+ info)

Help, travel insurance for Churg Strauss sufferer?

I am trying to get travel insurance for my 42 year old husband who has Churg Strauss syndrome. We want to visit my sister in USA but have been refused insurance by 2 different companies. Can any one help?

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Try the comparison site at Squaremouth.

You have a pre-existing condition to deal with so I would call them to discuss once you have checked the site out.

Worldwide Residents:
http://www.squaremouth.com/visitors-insurance

US Residents:
http://www.squaremouth.com

UK Residents:
http://www.squaremouth.co.uk (+ info)

I am desperately searching for another churg strauss sufferer to chat with [email protected]?

Hi my name is Linda..I live in Victoria..I was diagnosed with Chrug Strauss Syndrome in April 2005. I would really be interested in have contact with fellow sufferers for moral support...it is such a rare and pain in the butt of an autoimmune disease...i feel so isolated at times and am very desperate to communicate with other people whom are suffering from the same disease

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Here is a link to that at NORD for rare diseases...scroll down for links to support organizations..
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Churg%20Strauss%20Syndrome

Specifically here is a link to a foundation about that..
http://www.cssassociation.org/

And I believe you spelled it wrong...here is a link to clinical studies on that (in the U.S.)...hit the map button for local trials and don't forget to turn the pages.
http://www.clinicaltrials.gov/ct/search?term=Churg+Strauss+Syndrome&submit=Search&churg.ID=term&churg.badWord=chrug

I am having trouble finding a similar website to search for clinical trials in Australia, but here is an article I found.
http://rheumatology.oxfordjournals.org/cgi/content/full/42/2/390

Here is another article of sorts...go to number 13 or look at the side for the link to Churg Strauss syndrome
http://rheumatology.oxfordjournals.org/cgi/content/full/40/8/896#SEC8

Here is a notation in WHO web of a possible link to a drug side-effect causing this..Zafirlukast is also known by the name of Accolate ...
"Zafirlukast - possible association with Churg-Strauss syndrome: United States of America "
http://www.who.int/medicinedocs/library.fcgi?e=d-01dedmweb--000-1-0--010---4----0--0-10l--1en-5000-0--50-about-01en-5000-01131-0011xyI4uDve9ee80ca800000000459bc6c2-0utfZz-8-0-0---01001-001-110utfZz-8-0-0&a=d&c=edmweb&cl=CL3.1.39&d=Js2264e.1.28

Here is a notation about similar disorders (differential diagnosis) that should be tested for when you have blood work that comes out this way..
"Blood eosinophilia greater than 4% or 300-400/µL supports the diagnosis of asthma, but an absence of this finding is not exclusionary. Eosinophil counts greater than 8% may be observed in patients with concomitant atopic dermatitis. This finding should prompt an evaluation for allergic bronchopulmonary aspergillosis, Churg-Strauss syndrome, or eosinophilic pneumonia." (in the Lab section of the article)
http://www.emedicine.com/med/topic177.htm

Here is another reference to this drug causing this disorder.
"Adverse effects
Montelukast has been generally well tolerated in clinical trials. The adverse effects that have been reported more frequently than placebo in these clinical trials include abdominal pain and headache. Zafirlukast may cause drug interactions because it inhibits cytochrome P450, e.g. doses of warfarin may need to be reduced. Both erythromycin and theophylline reduce the plasma concentrations of zafirlukast by approximately 30-40%.

A rare disorder called Churg Strauss syndrome has occurred in 8 patients treated with zafirlukast.2 It is characterised by blood eosinophilia and eosinophilic infiltration of various organs, including skin and lung. The precise mechanism for this phenomenon is unclear, but it has been proposed that the patients had a primary eosinophilic disorder which was unmasked by the cessation (or reduction in one case) of corticosteroids when the patients began treatment with zafirlukast. Vigilance is necessary to determine if this syndrome occurs with other anti-leukotriene drugs. "
http://www.australianprescriber.com/magazine/22/3/58/60/

Here is a notation about a new drug for asthma.
“The newest asthma medication is omalizumab (Xolair), a recombinant DNA-derived humanized immunoglobulin G monoclonal antibody that binds selectively to human immunoglobulin E on the surface of mast cells and basophils. The drug reduces mediator release, which promotes an allergic response. Indicated for moderate-to-severe persistent asthma in patients who react to perennial allergens, in whom symptoms are not controlled by inhaled corticosteroids. The dose (adults and children >12 y) is 150-375 mg subcutaneously every 2-4 weeks (precise dose and frequency is established by serum immunoglobulin E levels). The estimated annual cost is $12,000-15,000.
Two 52-week pivotal phase 3 clinical trials with 1071 asthma subjects were designed to study a reduction in asthma exacerbations with omalizumab. Subjects were randomized to receive subcutaneous omalizumab or placebo every 2 or 4 weeks. Inhaled corticosteroid doses were kept stable over the initial 16 weeks of treatment (stable-steroid phase) and tapered during a further 12-week treatment period (steroid-reduction phase). When used as an add-on therapy to inhaled corticosteroids, in both pivotal clinical trials, omalizumab reduced mean asthma exacerbations (ie, asthma attacks) per subject by 33-75% during the stable-steroid phase and by 33-50% during the steroid-reduction phase.” (under medication section)
http://www.emedicine.com/med/topic177.htm (+ info)

does anybody else suffer from churg strauss , i have recentley been diagnosed as maybe having this !?

was wondering if anybody could tell me how they are coping , what symptoms they have , just somebody to talk to about it would be nice ! thanks in advance

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type in CSSISG and talk to others who have this (+ info)

Anyone taking methotrexate for Churg strauss?

I have been taking prednisolone for the last 3 years and recently had a relapse and am now considering taking Methotrexate.
Any one got any views?
I'm not thrilled at the idea of it. I'm 38 and worried about potential long term liver damage, fertility etc.

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I was looking at taking methotrexate for RA. My Rheumatolgist decided against it because of the possibility of a side effect lung problems that can be serious and irreversible. So I am on another Disease modifying anti- rheumatic drug Imuran. (+ info)

what are triggers for churg strauss?

Check links below for starters... (+ info)

medical condition called churg strauss syndrom?

its a type of vasculitis

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