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Singulair and Churg-strauss syndrome
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Singulair and Churg-strauss syndrome

I was diagnosed with allergy induced asthma (which I am still not certain I have).  The Doctor gave me Albuterol, (which helped, but I was using it too frequently), they tried other inhalers which seemed to cause worse effects than the asthma.  So my doc gave me Singulair which immediately helped me to breath.  Since children were given this I felt it's probably ok to take.  After only 3 days my feet started to tingle, my hands and then my legs.  By the 5th day I ended up in the hospital emergency room with the most severe, excruciating pain I have ever felt in my legs and hands I have ever felt in my life. My Eosinophil count was very high (28.8)   I felt it was a reaction to the Singulair.  The doctor said no, that's not possible.  I could no longer walk, I had parathesis of my lower legs, feet and right hand, and was in the hospital for almost 2 months.  I was confined to bed or a wheelchair and used a walker.  It was the doctor's theory that I had Churg-Strauss Syndrome.  When I left the hospital I was given 80 mg of Oxycodone 4x day for pain, Percocett 4x day, Gabapentin, Prednisone 80 mg, then Methotrexate (low dose), as well as Valium for fear and terror that was caused by the Prednisone.  What a mess.  My own doctor knows nothing about Churg-Strauss or Vasculitis, and the Rheumatologist I see seems confined
to her own limited knowledge of the disease and won't go beyond her own knowledge.  Since I believe this is an allergic reaction to a medication (and if it truly is, will I get better?)   Will these dead nerves come back?  Will exercise help or what else can I do to get better?   This is the most devastating thing that has ever happened in my life.  
For the record, (and against all advice), I quit  (tapered very slowly off) Prednisone, stopped the Methotrexate after taking for 7 weeks, stopped Gabapentin, Valium, Oxycodone and Percocett.  I am going to a Naturopathic Doctor, who is also an Orthomolecular Nutritionist, a Darkfield Microscopist and acupuncturist.  I am no longer on the meds (which caused more problems than the disease), and physically I feel so much better.  I know this is a lot to write, but I really want to warn others of the horrible side effects of Singulair, that can happen so fast!  When I tried to find answers as to what was happening, my doctor didn'rt know, nor did he try to find out, the company that makes Singulair had nothing about this side effect.  People beware of pharmaceuticals!
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17 Comments Post a Comment
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Avatar_n_tn
hi there i also have churg strauss syndrome and was diagnosed April 2003....would love to chat or email.....linda.***@**** am hoping that you are in Australia like i am...but it doesnt matter if your not...our syndrome is so rare and frustrating but we can live with it....hope to hear from you or anyone with our wonderful syndrome...
Thanks Linda
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Avatar_f_tn
It is incredible that you are telling this story.  my son has had pins nad needles for almost two years, and we have been to all kinds of doctors doing every kind of test to figure it out.  It has really effected his life.  He can barely sit (a problem for an eight year old in school)  Churg strauss has been mentioned because he has had many cases of pneumonia (he has asthma as well)  Anyway we have been finding no answers and we recently took him into a well check with his immunologist.  He was prescribed neurotin by his neurologist and my immunlogist told me to get him off of the singulair before we gave him the neruotin.  He said that the side effect was kind of rare, but possible.  Of course we took him off of the singulair, but it hasn't taken the pins and needles away.  I hope that he will have some relief at some point.  We are planning of giving him the neruontin before the beginning of the school year to take away some of the discomfort.  How are you doing now?  Have you had any changes?
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526874_tn?1240207685
Good evening Agirltech 2 and all other Churg Strauss Syndrome unwilling participants.  

My nick name is phat03 and I am sitting here in my hospital bed in Duncanville, TX with pneumonia in both of my lungs at least thats' what the x-ray and Cat Scan makes it appear to be.  

However, I am on the same battle as you are.  I too have been diagnosed with Adult Onset Asthma - Complicated Asthma.  My journey started in May of 2006.  I returned from Miami with a slight cough and had a scheduled well woman on June 12, 2006.  By the time I made it to my well woman appt I was wheezing (which I didn't know what that was).  On that day I took all my annual test and labs and my lab report came back and the EOS field which now I have discovered meant (Eosinophil) was 24(H) and my EOS (Absolute) was 1.4(H).  Under the EOS field my Neutrophils and Lymphs showed allergies (abnormal or high I guess).  I was placed on Medrol Dose Pack for treatment of wheezing in my upper lobe bilateral. On June 20, 2006, I returned to my primary care physician (PCP) with a cough and wheezing but Albuterol was helping.  I was assessed with asthmatic bronchitis.  I was given a nebulizer treatment and placed on Nasonex, Levaquin, keeping with Albuterol and guess what SINGULAIR was introduced by my PCP on this visit.  On August 15, 2006, I underwent respiratory allergy test by Quest Diagnostic and my Immuoglobuin E (assuming Eosinophil) was out of range. In September of 2006, I had bronchitis, walking pneumonia and a viral rash that came while I was enjoying a walk in the sun at lunch.  It only showed up every place skin on skin or elastic touched from my clothing. On August 15, 2006, I was sent for a Respiratory Allergy Profile and it was found that my Immunoglobulin E (again that E word which probably means Eosinophil) was 630 H (out of range). By September of 2006, my doctor diagnosed me with Asthma for sure.  On September 20, 2006, I had an Aero-Allergen 64 ***** Skin Test which was negative for 63 allergen pricks but one which showed for antihistimanes for the medications I was taken.  On October 10, 2006, I underwent a Spirometry test and my Forced Expiratory Volume (FEV1) was 1.26 L/sec. This was considered a below baseline test.  I was told by the tech that this was very bad and they did not continue with the test.  The year in 2007, was my worst year ever with this Asthma (that I too do not believe I have now).  In late spring of 2007 I again got the viral rash all over my body (reddish itch rash) and purple nodules in the palm of my hands and between my fingers.  I constantly had SOB and wheezing with hardly no relief.  In November of 2007, I could not walk two or three feet without SOB on exertion. However, Prednisone cleared that right up.   In January of 2008, I had a lung biopsy at the recommendation of my Allergist and my Pulmonologist.  It was returned from the Mayo Clinic in Scottsdale, AZ  with the diagnosis of left lung, lower lobe, surgical wedge biopsy.  Chronic inflammatory small airways disease with cellular bronchilitis, variable mucus stasis, and mild to moderate peribronchiolar fibrosis.  These changes are compatible to "Complicated Asthma".  It was also stated that sections of the lung parenchyma show a moderate peribronchiolar chronic inflammation composed predominantly of lymphocytes plasma cells and Eosinophils and there are scattered neurtophils present but there were no changes suggestive of usual interstitial pneumonia or sarcoidoss or malignancy.  The findings were compatible with the clinical suspicion of a hypersensitivity pneumonitis.  However, a role of reflux disease cannot be entirely excluded as a contributing process.  Since that time, I have had good and bad days with this so called Asthma.  Now here comes the kicker........on a Saturday evening in May of 2008 I had low back pain and thought that was a sign of my menstruation.  However, by Sunday, I had excruciating pain from my back to my neck and by Monday I had extreme joint pain all over my body.  I went to my PCP and she gave me Skelaxin for pain and muscle relaxation.  I felt okay on Tuesday, the pain was bearable on Wednesday and I think on Thursday I went to the ER with unbearable excruciating muscle spasms, soreness and joint pain all over my entire body.  I had tingling and numbness mostly in my right leg and foot, purple nodules in my hands and between my fingers again.   At that time,  I was told that my Neutrophils was 7.1, absolute Eosinophil count was 22.8 and my Eosinophil percent was at 67. Finally I was discharged with the diagnosis of viral myocarditis, anemia, Leukocytosis and elevated liver function tests.  In June of 2008, I was admitted back to the hospital for chronic obstructive bowel syndrome (severe constipation).  I was having nausea, vomiting and abdomen pain.  I stayed in the hospital for about 5 days.  I was sent home and the next day I went back to the hospital with a spasmic abdomen.  I was given medication and released. Since that time, I have been having the usual "asthma" symptoms, i.e.:  SOB, wheezing, coughing, allergy like symptoms and I continue to have HBP (which started after I was diagnosed with Asthma).  Now here I am writing to you seating in my hospital bed with Pneumonia in both of my lungs or that is at least what the chest x-ray and Cat Scan says it appears to be (infiltrates in my lung consistent with pneumonia might I say) and per the doctor as well as pain in both of my upper shoulders, arms, HBP, high Eosinophils, and with high glucose sugar count.  I continue to this day have right and left lower extremity  pain, more so on my right than left.  My right heel is numb, I feel tingling in the bottom of my right foot. While sitting in the ER to be seen I had a purple nodule rise on my right hand but went away quickly.   Now I have an new onset of pain in my thighs when I sit for long periods of time.   Today, in my room, I was told by my doctor that he has a very strong possibility that I have Churg Strauss Syndrome and to stop taking Singulair immediately because some how another it exacerbates the disease.

I know this was a lot to write and read also, but these are the issues flowing from my heart.  My prayer is that this will help someone else recognize that they too my have Churg Strauss Syndrome and not Asthma.  Although it can start from having asthma or allergies when younger but not when you are older, such in most of our cases.  

I will keep each and everyone of you in prayer today and thus forward.  Remember, God does not put more on us than we can bear.   Always keep Phillippians 4:13 at heart.....I can do all things through Christ which strengtheneth me and my other favorite is Psalms 121:1.....I will lift up mine eyes unto the hills, from whence cometh my help.  Have faith....the substance of thing not seen but the evidence of things hoped for. Remember it is impossible to please God without Faith and you must Believe.

Love each and everyone of you and God Bless,

Ndhelp33

PS: the symptoms for Churg Stauss Syndrome are as followed: Fatigue, cough, SOB, weight loss, chest pain, inflammation of the sinus nasal passage, numbness and weakness due to blood vessels of the extremities inflammed, viral rashes, purple patches and nodules, elevated white blood cells (Eosinophils), lungs inflammed, diarrhea, pain in the belly, hypertension, seizure and confusion.  I believe I have experienced every symptom except for possible diarrhea and a seizure.
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Avatar_n_tn
This is amazing, I think I won a million dollars to find out about this syndrome and am getting testing as I write... I developed asthma from a mold bloom, then found I couldn't take albuterol or advair because it gave me complicated migraines with paralysis, now more things cause the paralysis and I've developed a rash... just to know I'm not crazy would be amazing... Franie
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Avatar_n_tn
Folks,

My only suggestion is to find a doctor who is experienced with vaculitis.  Don't live with doctors who give you shrugs and confused looks.

Vasculitis is not common, but there are a few centers which specialize int he diagnosis and treatment.  See the link below.  

Find the one closest to your area and contact them.  They will probably be able to give you a reference to a local doctor who is qualified.  If not, you might need to take a road trip..but the peace of mind is worth it.

Best of luck!
-J

http://rarediseasesnetwork.epi.usf.edu/vcrc/centers/index.htm
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Avatar_f_tn
My Husband has been in hospital for 4 week he has Churg Strauss Syndrome he to was on the singulair tablets . He has so much pain in his hands feet top off his arms button off his feet .
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Avatar_f_tn
Hello,  That's about what happened to me too, but I lost the use of my lower legs and feet and developed foot drop as well.  The pain in my legs and feet were excruciating, that's the body attacking the nerves, vasculitis.  They will give him steroids to counteract it and hopefully can stop it before it does too much damage.  I took singulair too, there really should be a class action suit against Merck because of this product as many people have had the very same thing happen to them.  Please go to an experienced Naturopathic Doctor as medical doctors will treat one way and that is with prednisone, gabapentin and chemotherapy, such as Methotrexate, etc. I stopped all and went to a Naturopathic Doc. in 07 and I can walk now but still have numbness in my right hand and both feet but the foot drop is better.  I can drive now too. I hope your husband gets better, I will say a prayer for him.

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Avatar_f_tn
I just started using singulair, I think I will change to another long acting medication I have on hand. I wonder if those of you that have problems were using the pill ? Justwondering, and so sorry that so many have issues and now major problems.
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Avatar_f_tn
it was the pill.  Beware, that's all I can say.  If you can change your diet to heal, give up milk products, cheese, etc, and processed foods, you can get better.  There are other things that can help too.  Go to a Naturopath if you can(-:
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Avatar_n_tn
I have had a similar response to Singulair. After taking it for 3 yrs I realized that it was causing all my problems. In addition to symptoms similar to Churg Strauss, I also have enlarged lymph nodes and problems with my liver. I urge everyone to take the time to report their issues to the FDA so they realize that these side effects aren't as rare as they think. Here's the link: https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm. I have been off this drug for 3 wks and feel amazingly better.
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Avatar_n_tn
I started with costipados, bronchitis ... gave me many medicines and bronchodilators including SINGULAIR.
I had shortness of breath, severe cough, vomiting, dizziness, weight loss ... and I choked at Only 3 steps. And even had rhinitis and they had given me an hour to operate.
A few days I felt that I was leaving and would lose the knowledge of a sudden, the doctor called me from a distance and only alerted the ambulance.
The doctors took me right away because I was dying and did not understand was happening. He had a great tachycardia. They saved my life, I was in ICU 15 days and then plant another 15 days more. I was diagnosed with Churg Strauss Syndrome. My immune system had invaded my plmones and was in the heart.
It has been 4 years and I controlled immunosuppressive heart pills, bronchodilators. When I told the pneumologo what had happened to me, then I said that perhaps had been the singular, in the leaflet appears as a side effect.
I think it was a part of Singulair, the mixture of drugs and bronchodilators llgó to give me because I do not know stop bronchitis.
Now I have asthma and osteoporosis in the amount of cortisone I took (and that taking calcium to prevent it.) I have 38, I'm from Spain
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Avatar_m_tn
Just thought i should get a perspective from some of you.
I was born with chronic asthma and suffered severely with it as a kid constantly taking puffas, nebuliser and prednisone (I also had pneumonia before and bronchitis on a number of occasions). As a teenager i started getting symptoms of hayfever (and only had 1 major asthma attack during my teenage years but i have never gotten rid of my asthma). A few years ago i started with severe abdominal pain (always after eating) where i was originally told it was IBS. I started losing a lot of weight (12kg altogether now and unintentional). The doctor sent me to a gastrologist who has done numerous tests on me but they have all been inconclusive in relation to any diseases such as chrone’s and celiac. I then went to an allergy specialist who diagnosed me with allergies such as mold & grass on top of food allergies such as brewer’s yeast and i am also lactose intolerant. The allergy specialist told me i have raynaud’s and noticed i had high blood pressure on one side of my body and normal blood pressure on the other. I constantly have tingling in my hands and feet, i get pins and needles quite easily, i have had numerous rashes, bloating, fatigue, diarrhoea (when i have stomach pains) and nausea.
My gastrologist is getting me to do additional tests in a few months to see if there is any change but mentioned that he will test me for vasculitis. Does anyone think that this could be a possibility?
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Avatar_f_tn
I was reading this because to this day i have no relief, and everything you all have wrote about kinda make me wounder if i might have the same thing too. I wonder if i am too modest when i go to the doctor and if i forget to tell him all the details. I just get all sort of insecure and i feel like i complain too much because i am a frequent doctor visitor... and i am sure they dont believe me. I have gone through at least 4 doctors at the moment, and i dont have a specialist. Maybe someone can tell me if they relate to my symptoms because i will then go in and ask to get tested. I have suffered from chronic sinusitis, which then triggers my asthma. I have had asthma since i was about 10 years old. I mean it made sense my parents were both habitual smoker and i was always around them. My diagnosis did not stop my parents from smoking around me, so it did not make anything better for me. I saw and allergist because i loss my sense of smell which i thought was due to getting my wisdom teeth pulled. I had never got sinus problems till that point. So i had a scratch witch was inconclusive because i reacted to everything, she said ihad a lot of allergies in my skin, so then they gave me the needle ***** allergy test and i still reacted to just about everything, just not as sever. I mean, i never got sick but maybe once a year with upper respiratory and bronchitis. But by this point i have had a sinus infect almost every two weeks and i cant get my asthma under control. I have taken lots of antibiotics, singular, albuteral, advair, steriods, antihistomns, i have had at least 3 cortisone shots, and a series of allergy shots. None of which has helped clear up my symptoms or relieve my asthma problems. I have never been this uncontrolled, this is all very new for me and i don't know what to do. I have had two ct scans of my sinuses and about 3 or 4 x-rays of my lungs. they said nothing showed up on the x-rays, but i ended up having sinus surgery. Yet after that i am still getting frequent sinusitis, and my asthma is way more extreme, i now get winded, i can barely run anymore, i can barley walk down a street or climb a few steps with out getting winded. My albuteral doesn't even help, so now i have a breathing machine to give myself breathing treatments. But in between all of this i went to an urgent care because i started to have extreme pain in my arms and legs. I had an x-ray of my arms, but it showed nothing. The pain was so bad that i could barley open and close my hands, it was so uncomfortable i could not get relief, she told me it was just nerves. But i have gotten these pins and needle attacks in my extremities more times than i can count. I decided to stop taking all my medicine at some point this summer because i felt so annoyed with all the meds and all the money i was spending and i was still getting no relief, now i feel like i am back at square one with everything ( i am dumb for not taking my meds), but i had not had any extremity pains in a while. but i did start taking my meds again and now i have this pins and needle feeling in my back, it hurts every time i breathe. I just don't know what to do any more. my meds don't help and i can't breathe, i am exhausted and i just want to give up, i am sick of being sick. I don't sleep any more, and i started to develop chest pain. But i am an ekg tech and i take my own ekg's and it really hasn't change, the only thing i am noticing on my ekg is that i am developing a left bundle branch block... I never used to have chest pains or feel like my heart is racing. I guess i just want an answer for what is causing all this trouble. I am not sure if i left anything out but this whats going on now, i am on 25 and i feel like this is weird for someone my age to be taking so many pills and making soo many doctor visits. Any suggestions????
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Avatar_f_tn
I too have had a reaction to Singulair with predisone why do they keep saying it is rare. My Doctor told me they used to think Singulair caused churg strauss now they are using it to treat ir. Who are the guinea pigs here
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Avatar_m_tn
would going to this asthma center in North Carolina help?  I have terrible sleep breathing disorder and am crippled and fear I am mentally handicapped from it- I am exhausted every day and on ventilator and oxygen.  my FEV 1 and FVC have been stuck at 70 even on inhalers and I wheeze when I exhale and I'm getting diabetes
I've read prednisone can cause neuron death in the hippocampus and memory problems long term is it true?
also I would stay away from opiate pain killers since they can cause central apneas, terrible crippling disease
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Avatar_m_tn
does doing allergy shots help asthma and sleep apnea?  I read though it takes 3-5 years to go through the course
there is this injection called xolair for high IGE
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Avatar_m_tn
I also took Singular.  I was then diagnosed with Churg Straus Syndrome. They even asked if I ever took Singular.  I think the manufacturers of this drug are responsible for this sickness and should have to pull off the market.
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