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Opinions on Xolair and overall Asthma

Hello good people.  First time contributor.  I'm 63 and a moderate/severe persistant member of the asthma club, of which I wish I would'nt qualify.  I take Advair/500, Spiriva, Singular and occasional Albuteral and Prednisone, so I'm well stocked.  My pulm. put me on Xolair 8 months ago and I can't really say I feel improvement.  Could it take even longer to kick in?  I've read that it can take months, but how many?  I'm so multi-triggered that it's very hard to tell what is effective.  A couple caveats – I live in Colorado at 7,600 feet which no one would suggest.  Also, I've had open heart surgery last Aug. for a valve.  My recovery appears to be excellent.  But could my asthma still be compromised by surgery?  Please don't ask me to ask my pulm.  I respect him but his opinions/guesswork is no more valid then what you veterans can give me.  Help.  Thank you.

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  • K8sMom2002

    Hi, Richard! And welcome!

    It sounds like you've been recovering from quite a bit, but that your valve replacement is coming along nicely. What sort of triggers does your asthma have? 

    Colorado does have a higher elevation, but a big thing it has going for it is that dust mites don't feel as welcome there. So the high elevation might be balanced out by the reduction in dust mites if dust mite allergy is one of your triggers.

    We have several folks who've tried or are on Xolair … I'm hoping they'll chime in and let you know how they're doing. Or you can check out other threads about Xolair or similar biologic drugs and read through them:

     (This is a link to a press release about a study.)

     

  • Shea

    Hi Richard! 

    I guess I would ask first, how do you monitor your asthma as it changes? I am guessing with xolair you are following eosinophils and IgE in bloodwork (because typucally that is what qualifies one for those meds). It really is hard to know when you have multiple triggers and meds– but those numbers at least help monitor inflammatory blood cells that are produced from ALLERGIC triggers. 

    That is what my asthma is mostly triggered by. I did try xolair for nearly a year and it did not significantly lower my eosinophils (which is in a CBC bloodwork) nor did I notice imprivement in symptoms. I do know another person who it did work for them after 4 months they noticed improvement. Then I tried Nucala and after 3 months of nucala my eosinophils started lowering, and I did that for a year. I still had symptoms and was nebulizing but some of that extra underlying inflammation was starting to resolve. I stopped after a year because the program I was in to help me cover the out of pocket costs for it ran out of funding and it was too pricey for me alone. But, ever since the eosinophils got into normal range I have been able to keep them stable in my bloodwork (I do take other meds as well– prednisone, flovent, and combivent for asthma). 

    As far as heart stuff– I have some of that as well, although no surgery or valve issues, I had a heart attack in the past that did some damage and have an ejection fraction of between 25 and 35 percent, so I have fatigue from that. I have to be careful heart and lung meds do not interact but its usually the heart meds that can make my asthma worse– a beta blocker did that in the past. My main thing with my heart is more fatigue and higher heart rate, and I have abnormal cardiac stress test but that is more related to my underlying autoimmune disease that to anything else. I do light exercises and pay attention to my breathing and any chest pains. 

    I can only think that your asthma would be better after a heart surgery– not less compromised– because the more efficiently it is pumping blood, the more oxygen circulating efficiently and each breath would be worth more. But itd be good to find out from the heart doctor what if any symptoms of complications might look like so you can be mindful of them. 

  • Richard

    Thanks very much for responding and I'll checkout the links.  My triggers are confounding, except for exercise induced.  Please indulge me as I relate this lunacy.  I've been a chef all my life which in of itself is a trigger.  Being on my feet, odd hours and the stress never helped.  But for better or worse I stuck with it.  Cursed by my talent, sort of.  Chefing brought me to Chicago (where I grew up), Santa Fe, South Florida, St. Simons Island, GA., Asheville NC. and now Pagosa Springs, Co.  And I had bad asthma everywhere, so triggers are impossible to pinpoint.  All I remember is when I was 14 I got those scratch tests for allergies and my mother said I lit up like a Christmas tree.  Now I am forceably retired due to health/medical ins.  I've always said my asthma is like a rollar coaster.  Worsening and improving as it see's fit.  Whenever, I detect a trigger, then it stops bothering me and comes back later at an undetermined time. So, I'll try anything except daily prednisone.  It helps to have communication.

  • Richard

    Hi Shea!  I had bloodwork done and my eosinophils were normal but my Ige's were quite elevated so I qualified for Xolair.  My pulm. wants me to continue the Xolair.  I wonder if it might take longer to work based on my age (63), and lifelong asthma.  Like chipping through a brick wall.  I'm happy that the Nucala works for you.

    Here's a thought.  Could my moving to a severe winter climate and the triggers climate causes mask the improvement Xolair gives?  Thanks

  • LK

    Welcome Richard!       

    I started on Xolair almost a year ago.  I have cough-variant, moderate-to-severe persistent asthma and am allergic to dust mites.  After being on Xolair for about 10 months it just wasn't helping as much as my pulmo and I had hoped it would.  I was still needing to use my rescue inhaler or my nebulizer every day.  Sometimes multiple times a day when I has a flare as when one started last fall.  Since a flare that started last fall I have been using my nebulizer every 4 hours, until these past few weeks.  My rescue inhaler just wasn't helping.

    I have been on a low dose of pred since the first of November and just started Dupixent 4 weeks ago yesterday.  My pulmo thought the Dupixent would be worth a try and it has been amazing for me.  So I had my last Xolair injection the first of January and my first Dupixent injection the end of January.  I am no longer on the Xolair.  Two days after the first Dupixent injection I could all of a sudden breathe way down deep in my lungs.  Can't tell you the last time I can remember being able to do that!  As of today I haven't needed my neb or ProAir for two days.  That is a record for me since I was diagnosed with asthma just over six years ago.  

    I, too, have multiple triggers so it is quite a challenge to figure out what is setting off my asthma most of the time.  Like you, I had to change my lifestyle because of my asthma.  I taught therapeutic horseback riding, rode horses and showed hunters.  Many of my triggers – dust, diesel exhaust (tractors), strong smells (fly sprays, etc. ), windy weather, cold or chilly air, etc. -  are in horse barns and at horse shows so I while I loved doing all those things I was constantly struggling with triggers.  I was incorrectly under the assumption that I could just continue doing everything I loved even though so many of my triggers are in those environments.  I had to give up teaching therapeutic riding and also doing anything with our horses.  My DH has taken over all the barn chores. 

    Among the strong scents that get to me are even cooking smells.  I love cooking and am a good cook, or at least so my DH and family say!      But up until just recently even cooking and baking would set off a flare.  I love to sing old hymns but even doing that or laughing or talking very much at all would cause me to start coughing a lot and just generally wear me out.  It is quite a challenge when so many of the the things you love to do are causing coughing, a tight chest and shortness of breath.  

    I am currently on Pantoprazole and Pepcid AC for acid reflux which aggravates asthma.  Also on Claritin, Breo Ellipta 200/25, Spiriva Respimat 1.25, and Montelikast.  Oh, and am on 10 mg pred daily, too.  I hope to be able to reduce the pred by increments very soon if I continue to keep improving.  God's mercies are new every morning and I am grateful to be breathing better for now! 

    Hope this helps some!  These forums are such a source of support and encouragement.  I have learned so much from the others here.

    That is a good question about if any new triggers are countering any possible improvement from the Xolair.  It is possible that you could be doing worse if you weren't on the Xolair.  I asked my pulmo about if I should stop the Xolair when we were first starting to try to get the Dupixent approved.  He said to stay on the Xolair until I started the Dupixent because I could be getting some benefit from it and just not realize it. 

    Sorry for going on for so long!  One thought leads to another!

    Please let us know how you are doing!  

  • Richard

    Lisa, thanks so much for answering.  I can just imagine your love of horses but all that goes with it asthma wise.  I remember my grandmother taking me to the circus.  That was the end of that!

    Anytime you can put a new med and the word "amazing" together it's good times!  Good luck.  I've got to research Dupixent,

     

  • Shea

    Richard, I think it is good to keep an eye on how that IgE level is responding to the xolair. IgE is typically an allergic response (the only other time Ive read it can be high is high is for parasitic infections which probably have other signs too so its most likely allergy), so knowing your allergies might help with avoidance– I know no one likes another specialist BUT an allergist can be helpful for a skin prick test (that was more accurate for me than the blood test). Im not sure if you will have to wait until off xolair or not, but if after a year xolair isnt lowering those IgE then maybe a plan would be to test for allergies then. 

    Lisa's results with the Dupuxent sound awesome too! So you could talk about thst option. 

    And once your asthma is flared up, I feel like the lungs are just more raw and open so any trigger– smoke, chemicals, infections, allergens, weather– all that stuff is going to be affecting you more (at least that is how it is for me). So stopping the allergic inflammation will help, and kind of being aware and avoiding those other triggers will help too. 

    Since you mentioned cold air, (I live in Florida so no cold air isnt much of a prob for me) but a lot of members on here talk about it as a trigger and use scarves, asthma masks, and trying to transition from the heated indoor to the cool outside slowly by heating the garage or warming tge car up. One member has an electric scarf that sounds cool.

  • LK
    Shea posted:

    Richard, I think it is good to keep an eye on how that IgE level is responding to the xolair. IgE is typically an allergic response (the only other time Ive read it can be high is high is for parasitic infections which probably have other signs too so its most likely allergy), so knowing your allergies might help with avoidance– I know no one likes another specialist BUT an allergist can be helpful for a skin prick test (that was more accurate for me than the blood test). Im not sure if you will have to wait until off xolair or not, but if after a year xolair isnt lowering those IgE then maybe a plan would be to test for allergies then. 

    Lisa's results with the Dupuxent sound awesome too! So you could talk about thst option. 

    And once your asthma is flared up, I feel like the lungs are just more raw and open so any trigger– smoke, chemicals, infections, allergens, weather– all that stuff is going to be affecting you more (at least that is how it is for me). So stopping the allergic inflammation will help, and kind of being aware and avoiding those other triggers will help too. 

    Since you mentioned cold air, (I live in Florida so no cold air isnt much of a prob for me) but a lot of members on here talk about it as a trigger and use scarves, asthma masks, and trying to transition from the heated indoor to the cool outside slowly by heating the garage or warming tge car up. One member has an electric scarf that sounds cool.

    When I asked my allergist how long I would have to be off Xolair before I could get any allergy testing, he said 4-6 months.  

    For me, too, when I am having a long flare my lungs react to everything as if it were a trigger.  I am especially sensitive to my triggers and also almost anything else that is even close to a trigger.

    Cold air is one for me.  If the temperature is anywhere below 70 my chest gets tight and I get short of breath.  I wear a mask when it is chilly and a mask with a heated scarf/neck warmer when it is cold out.  Also wear a scarf around my neck that covers my chest when it is cold.  If my chest gets cold even if the air I am breathing is warm then it triggers my asthma.

    Hope this helps!

  • K8sMom2002

    Richard, so glad you've gotten such good insight and advice … has this given you any ideas about what to discuss with your doctor?

  • Richard

    I'll pursue current IgE levels.  This Friday I get my next Xolair shots (8th or 9th).  I'll also ask about Duprixent.  Wow, a lot of money.

    You folks are helpful and great.

  • K8sMom2002

    So glad we could help! Figuring out where to go from here can be challenging, but it looks like you're considering every angle very carefully.

    Depending on your situation, there may be patient assistance programs for Dupixent. Have you checked out AAFA's resource on ?

  • LK

    This is the information on the Dupixent website about Patient Support with information about the copay card - 

      

  • Richard

    Got my Xolair shots today and also spoke with my pulmo's assistant.  She passed on to the pulmo all the above info concerning my last number of months and Xolair's effectiveness.  I was lucky to immediately get blood drawn for IgE'e and Eosinophils.  I should find out results next week.  I'm waiting on a cancelation to see the pulmo.  You know, it's like getting an audience with the Pope.  But I'm happy getting as much done as I did.

    I hope all of you ar doing well today.

  • Shea

    Richard that is great that you got those blood tests drawn — then you can compare the results to past bloodwork and have a number to see. Ugh on the difficulty getting in with the pulmo! Hopefully it will all come together soon!

    I have appointments galore this March (cannot believe it is March)! I have GI, cardiology, AND immunology/allergy appointments this month…. All to do with different symptoms/complications from a chronic allergic disease (Churg-Strauss Syndrome). Hopefully I will get a clearer picture of what treatment to try next. 

  • Melissa G

    Richard, I hope the lab work helps your dr get a better plan of care for you. 

    Yikes, Shea! You are going to be one busy woman this month!