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New treatment: Xolair
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Sleepless posted:
With hope of finding an alternative to "PREDISONE' I saw a new allegerist. After taking my history and testing, he stated that I would be a great candidate for Xolair. According to the doctor, what makes me a great candidate is my extremely high "IGE" levels (in the 1400+), and it has been in that range for a while. The only time it came down to 700 was when I was hospitalized for 7 days, in which my care consisted of 120 mg daily of steroids. I'm just scare of the unknown, the trade-offs. I have been trying to do my own research on this medicine to ensure that I am well informed on all the good and bad. Is there anyone out there who has been on Xolair for a while? Please share your experience. I've made a list of the damages "Prednisone" has done to my body and health and I cannot take anymore, no more. Swollen body, weight gain, constant stomach pain, irritable all time, border line diabetic, high blood pressure, now adrenal glands issues. I believe that if I do not make a stand now these issues will become permanent issues.
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cwille responded:
well, i tried xolair for 2 months when i found out that i might be allergic to it, what happened to me was that we had tried everything we could, and xolair was the next logical step, but my ige levels werent right , but because i was in hospital at least 20 times in a year both insurance and doc said "why not" can't hurt , and it didn't i just started to have an asthma attack both times i took it and the doc said no more, BUT that was just me, i have read wonders about it, people have really gotten better, so just keep doing research on it who knows. good luck

cwille
 
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amcate responded:
My allergist was considering Xolair due to the high amount of prednisone I take. He got my IgE, which was normal. So, there was nothing to treat and so he decided not to do it. I did do research on Xolair while waiting for the results.

The main thing that concerned me at the time was that there where no studies that looked at the long term effect of Xolair, so it was an unknown. It could be better or worse than prednisone in the long term. I would rather know my monster so would have refused it even if my IgE was high. But, there's no right or wrong answer....some would take the chance in hopes that it is better than prednisone in the long term.

I would look for studies of the long term effects of Xolair. My doctor brought this up several years ago, so I don't know if they exist now or not.

Since I never took it, I can't give you a report of my experiences with it. I have heard on this board some people who've had good results with it. Good luck...
 
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dawghi replied to amcate's response:
Aloha Sleepless, Born and raised in Hawaii (land of the vog - volcanic air pollution). I have had severe chronic asthma since I was 5 yrs old and am now about to turn 46 yrs old. I have spend a life time on and off high to low taper doses of prednisone with and without antibiotics to treat bronchitis type infections and flare up related to my asthma. I have been on so many asthma/allergy medications I can not even remember them all. Yuck! Over the period from around 2005 to 2009 I began seeing a major increase in my prednisone use for chronic sinus infections eventually dropping into my chest causing major infections with asthma flare ups. I was prescribed doses ranging from 80mg tapering off to 20mg over 5 to 10 periods most times accompanied by some sort of antibiotic. Usually the pred was ever other day to decrease the side effects???? They usually helped but many times I had to have a follow up session or relapsed back to being really sick. Anyway, you know the story.....I got to a point where my doctor did not know what to try anymore. My lab tests would be fairly good but I could sit in front of him wheezing away. I missed so much work that I was 'let go' from my last 2 part time jobs. No way I could hold on to a full time job. I was basically trying to work to keep my medical insurance, ending up on Cobra for while and TDI insurance. So...Xolair came up as an option. I had heard of it before but wasn't sure exactly what is was or how it would work. I was really at my wits end and gained 100lbs from all the pred use at this point. Very discouraged and depressed. I was not real keen on the fact that Xolair is a derivative of Chinese hamster ovary cells either and no long term test results. Of out sheer desperation, I went for it February 2009. I take 2 injections ever 4 weeks, occasionally gone up to 6 weeks because of scheduling problems. My first injections went well. I had to wait awhile at the doctor's office to see if I would have a reaction. With in an hour, I could literally feel my sinuses clear! No reactions. I have to carry an epi pen for the first 24 hrs after every injection administration. I am now into my 4th year and have to report that I am on 1/2 the amount of medications I was on 5 years ago. Today I take Advair 500/50 bid, flonase nasal spray sid (as a precaution - I had nasal polyps back in 2005), an occasional Zyrtec, Pro Air rescue inhaler as needed (maybe 1 to 2x monthly average) and my Xolair every 4 weeks. I saw a significant decrease in my dependency of pred around the 2nd year which decreased gradually. I was excited when I went 6 months without pred! After that jump, I have actually gone 20months as of this month with NO pred! I have a small amount of low grade wheezing which some time goes to nothing to the occasional fair up managed by my rescue inhaler. My body can now fight a chest cold all by it's self without even going to the doctor. I feel so much better! I have NEVER gone like this ever in my life without predinsone. I still fight with my weight - even with a lap band - but I am not 'puffy' anymore and can exercise on a regular basis. No more nebulizer treatments, hospital ER visits, extra asthma medications and multiple inhalers. The vog still irritates my lungs when it blow through Oahu from the Big Island and I still watch for irritants like BBQ smoke etc. I have not had any side effects from the Xolair besides small bruising at the injection sights. I do fight with my insurance about them covering it - serious nightmare. I do get extra help through the manufacture's program as well. I thank my lucky stars for this medication. I know it may not be for everyone, but it has given me my independence back. I am a realist and do understand there may come a day when I will have to possible have a prednisone dose if I get too sick but it will not be a chronic thing again in my life it I can help it. Hope this helps you a bit. Take care, Dani
 
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Dianne1220 responded:
You sound just like me! I had taken so much prednisone that I developed osteoporosis. Also prednisone made me have insomnia and made me hyper. Your IgE levels have to be in a certain range, not too high, not too low, and they also go by your body weight. The dr has a chart to decide if you are a candidate. My dr is head of the dept of allergy & immunology and USF in Tampa. He said they had amazing results with Xolair. I started on Xolair in April 2012 and have not had to take prednisone since. It's a miracle drug for me. I have had NO adverse side effects. I get 3 shots every two weeks. I would DEFINITELY recommend Xolair for you! It has changed my life! It's so nice to be able to breathe! Of course, you still have to take your regular asthma inhalers. But no prednisone! I take Symbicort, Qvar & Spiriva and I'm doing great!
 
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amcate replied to dawghi's response:
I've had a similar experience with health as you have. Lots of prednisone, being let go at work due to exacerbations or side effects, being on COBRA, only then the COBRA runs out and no one wants to cover me, but then if I'm always at the doctor, how can I work and get insurance, etc. The insurance situation is complicated by the fact no one else can carry me...although in my specific state they put me on a stop gap program.

I spent the first year on pred, then taper off, then back on, etc. I left all my friends and family behind to go to a new area hoping that would help, etc.

So, my history is similar to yours. In my case, though, since the IgE was too low, clinically Xolair wasn't even appropriate in my case.

I wasn't saying to not take it. I was expressing my own hesitancy that I have toward any new drug (it was new when my doctor brought it up). That's my comfort level, even if it were clinically appropriate for me to take. But some people would feel comfortable with taking it for reasons you say....there is an improvement in the asthma.

Please understand that I've seen situations where a treatment was initially thought to be good but later problems are discovered and the drug is pulled off the market. It normally doesn't happen that way, though. So, I prefer older drugs myself....but it doesn't mean that taking new drugs is necessarily wrong especially if the results are promising. It's just my own comfort level even though I've been through similar things that you describe and it gets depressing.

In any case, doesn't really matter for me since my IgE was too low.
 
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Sleepless replied to dawghi's response:

Hi Dawghi!

So, far I've had my 5th injection of Xolaire just this past Thursday (06/13). The Asthma is better, yet it still flares-up something awful. It seems as soon as I get down to 10mg of prednisone, I have to go back up to 40mg. Nonetheless, I have not hospitalized since I've started treatment. Usually around this time of year I would have been hospital at least 5 times already, so I believe that Xolaire is working. I just have to be patient. When the coughing starts I feel so bad because nothing stops it ...nothing. When I cough for 2 days or more none stop I get this awful pain in my ribs, both sides and stomach. I mean the pain knocks me to my knees and make me cry. The pain lasts about 30 min to an hour. On one occasion when this happen, I took a pain pill (hydrocodone) and believe it or not it stopped the coughing for exactly 3 hours. I was shocked and I told my doctor about it and he said that there was something in the medicine that suppresses the cough. I can't recall what it was. It really helped, but this is a drug that is highly addictive, so I cannot take on a regular basis. The coughing never really goes away, and the wheezing never goes away. Sometimes the wheezing is so loud it keeps me from going to sleep because I have to make sure that no one has entered the house because it actually sounds like someone is talking to you"026LOL Funny how your mind plays tricks on you when you are sleep deprived.


 
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cwille replied to Sleepless's response:
My doctor put me on tylenol 3 with codiene for my cough and it works,also, and morphine , but i don't use the morphine unless it is absolutly necessary, It has been close to a year since i used it , i got it at the hospital i was in, my pulminologist won't give it to me. which is good, i use other stuff , also i don't know if you ever used lidocaine , when i am going through my attacks i use lidocaine in my nebulizer it normally helps. well good luck

cwille
 
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Sleepless replied to cwille's response:

Yes, I was prescribed lidocaine for thrush (from taking the steroids), but I never heard of placing it in the nebulizer. As a matter of fact I still have some lidocaine, and I plan to try it to see if it helps. I do not know what it feels like to sleep through the night. I awake every 4 hours for my neb treatments, my body lets me know when it is time viciously. As a matter of fact, I am having a treatment while typing this. Nights are very bad. Everyone in the house is sleep but me. On to another subject. Today I had someone approach me to ask if she could pray for me...of course I said yes...I would never turn down prayer. I just thought it was kind of odd for a total stranger to walk up to me, place her hand on my shoulder, ask my name and begin praying asking the LORD take the cough away and make me well. I thanked her for her kindness.
 
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cwille replied to Sleepless's response:
usually use 1 cc of lidocaine mixed in with my pulmicort and iprotropium bromide, (can't remember the other name for it) on real bad days i use 2 cc, and yes never turn down a prayer especially from a stranger, you never known who that stranger can be, it might seem crazy but i do believe in the power of prayer. Oh and i never thought of lidocaine for thrush , i get it a lot too, if you don't use a spacer and don't rinse your mouth out after treatments etc. you will get it.Actually i was just doing a treatment also, lol well good luck


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