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Asthma diagnosed finally…onto QVAR

(I have a few questions at the end…)

Many thanks to the supporters on this site for me to keep advocating for myself and finding the right doctor. My asthma journey (flare) started June 26 and is finally calming down now (August 16)- that’s almost 7 weeks. After two ER visits, 2 urgent care visits, 1 primary care visit, 1 pulmonologist visit and 2 asthma/allergy doctor visits- we have found a medicine that seems to be helping and a doctor that is listening and actually doing tests. She did spirometry that showed 18% improvement with albuterol, exercise test that showed oxygen level went down, allergy tests that showed allergic response to mold, dust mites and ragweed (all news to me), and peak flow readings that went from high of 250 in early July to 330 2weeks ago to 400 now after 2 weeks of QVAR. She said I have Moderate Persistent asthma with possible vocal cord involvement. I am still using rescue inhaler a few times a day. Oh, and she had me start Xyzal. Having a diagnosis makes me feel less crazy about my symptoms. 

What is a normal peak flow reading? Will I stay at a “moderate persistent” asthma level, or does that change? Is 80 qvar 4 x day a lot, a little or middle? Any experiences with xyzal? Would love anyone’s feedback.  Will This be my new norm or will I go back to being symptomless without meds until the next flare, if I can ever be done with this one?

THANKS!

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  • LK

    Hi Shadowcat!    

    That is such a relief to finally have a diagnosis!  Good for you for keeping at it!  

    I know that peak flow readings vary depending on a person's age, health, physical fitness, etc. so don't know what a "normal" reading is for the general population.  My PF's (only started doing them after I had asthma so don't know what it was before that) was usually in the mid 400s.  

    Unfortunately or fortunately our asthma levels do change over time.  I don't know if anyone really knows why our asthma changes but it does.  Unfortunately if it becomes more severe and fortunately if it becomes less severe.

    As far as your QVAR dosage, I found this information on the Mayo Clinic website - 

     

    I do not know about xyzal.

    That is a hard question – Will this be my new norm?  

    I wonder about the same thing for myself.  Personally, I did have to become accustomed to a new norm with my asthma since I was diagnosed almost six years ago.  I hope that someday my new norm will be a lessening of my asthma symptoms but so far my new norms have always been a worsening of my asthma symptoms – that is until I started on Xolair last April.  Since then I have had a slight improvement.

    Hope you keep doing better!!  Good to hear from you!

  • K8sMom2002

    Hugs AND high fives, ShadowCat! The hugs are for the official DX and the long journey to get there. The high fives are that you found a doc who would do the testing and come to some definite conclusions.

    I think Lisa makes an excellent point … for most of us, there's no record of what our PF readings were before our asthma was diagnosed. And each person's asthma is unique, so that's why it's so important to have an tailored to fit you.

    Another thing … PF readings don't always go lock step with symptoms. I know I've heard members here talk about how their peak flow looked good, but their lungs weren't at all happy … and then their peak flow readings dropped soon after.

    As for asthma and new norms … here's what has to say:

    Will I Always Have to Take the Same Amount of Medicine?

    Not always. You will probably take more medicine when you begin treatment to get control of your asthma. After a while, you and your doctor will learn which medicine(s) control your asthma best and how much you need. Once your asthma is well controlled, it may be possible to reduce the amount of medicine you take. The goal of this step-down method is to gain control of your asthma as soon as possible and then control it with as little medicine as possible. Once long-term, anti-inflammatory therapy begins, your doctor will want to monitor you every 1 to 6 months.

    My mantra is: 

    This is for NOW and maybe not forEVER.

    I have learned to take things one day at a time. 

  • Pljohns

    Shadowcat-On a different thread I wondered if peak flows change over time.  Below is the answer from an allergist and thought you might like to read his explainateion of personal best peak flows:

    Does your personal best peak flow change?  My personal best was when I was active in karate and in the best shape of my life.  If your asthma can change over time (go from intermittent to persistent, etc.) then can personal best peak flow numbers change, too, or do you always take your personal best no matter what it was?

     

    Please see Dr. Johnston’s reply to your question below.

     

    Reply:

    Your lung function can change over time, and peak flows will change too. I typically recommend doing three peak flows every morning and night for two weeks to help find the personal best. 80% of the personal best or higher can be used as a rough guide of normal. It is important to mention that peak flow measurements may be more helpful in some and less so in others and should not replace a symptom-guided treatment approach. Discuss this with your doctor, who can help determine if your peak flows are helpful and match your other measurements of lung function.

  • LK

    I remember when I was first diagnosed and trying to use the peak flow meter.  It was so disheartening because just the effort of blowing so hard into the PF meter set me into a coughing fit!  So I am quite sure I didn't use it as much as I should have.  Back then I didn't realize that I needed to keep in more contact with my pulmo when I wasn't doing well.  Thanks to all here on these forums, I now know that I have to tell him when I am not doing well.

  • Shadowcat04

    Thank you for your responses Lisa, Cynthia and PLJohns. I am starting to understand more about peak flow readings, sounds like it’ll make even more sense over time. I looked at the link about QVAR, Lisa, and I think I’m taking a moderate dose of QVAR. I think the continued steroids are making me sensitive and still a little crazy. That should be fun with school starting. My job, at the start of the school year, is mostly dealing with teachers and parents and students with difficulties. I’ll be doing lots of smiling, even if I don’t feel like it- and my favorite, “think before I speak!” 

    I don’t exactly have an action plan, except to keep taking the QVAR at the same dose, continue with albuterol as needed and take xyzal. From your comments, I presume it is a good idea to call if I get worse.  I don’t plan on getting worse, so that shouldn’t be a problem, right? I see my new asthma doctor in 6 weeks. My first two appointments were 1 1/2 hours each. 

    Oh, one more question. I’ve been doing the PF reading in the am before taking QVAR, should I do a reading at night, too, or is that overkill?

    I hope you are all having a nice end of summer with less wildfire smoke than we are having here in the Pacific Northwest – thank goodness today is better!

    Thanks!

     

  • Pljohns

    Shadowcat-so glad the info helped some.  It takes a little time for things to sink in and make sense but I have no doubt that you will be a pro in no time.

    I have never done PF readings in the evenings but that's just me-can you send a portal message to your doctor and ask them?

    Hope your school year starts out well and good luck with what sounds like a crazy first few weeks

  • K8sMom2002
    Shadowcat04 posted:

    I don’t exactly have an action plan, except to keep taking the QVAR at the same dose, continue with albuterol as needed and take xyzal. From your comments, I presume it is a good idea to call if I get worse. !

     

    Shadowcat, before I joined KFA (AAFA's Kids With Food Allergy online support community for parents with kids with food allergies), I had no clue about an action plan. But it's been a very powerful tool for me since then!

    Here's a couple of resources that have helped:

    An asthma action plan — you can click on the image to take you to AAFA's store to get a free downloadable action plan to take to your doctor.

    And the Know Your Asthma Zones guide — this is a general help for what to do when. You can talk to your doctor about what puts YOU into a particular zone, since each person is individual. That would be your asthma action plan … and our plans can and do change as the years go by. Our DD's asthma used to be worse than it is now, while mine has taken the other direction.

    Hugs on the steroids loosening your tongue! Sometimes it helps me if I have an accountability partner — someone who can give me a coded message — a certain gesture, a code word, anything that will give me a signal that I'm going off the rails. 

    And if I'm taking a med that can make me a bit "off," I go ahead and let people know. I say something like, "Hey, just a fair warning, I'm not at my best today. It's been that kind of day, you know? So speak up if I say something that comes out wrong!"

    Or if I feel comfortable revealing the details, I've joked with something like, "My doc had to give me a shot of steroids, and you know that prednisone always lets loose the predator in me!"

  • Melissa G

    Shadowcat, so glad you finally have a diagnosis and are getting treated properly! Half the battle is knowing what you are up against! 

  • LK
    Shadowcat04 posted:

     From your comments, I presume it is a good idea to call if I get worse.  I don’t plan on getting worse, so that shouldn’t be a problem, right?

    Oh, one more question. I’ve been doing the PF reading in the am before taking QVAR, should I do a reading at night, too, or is that overkill? 

    Shadowcat,  Glad to see you still have a good sense of humor!      

    I am not good about doing my PF meter regularly.  I don't see how it could hurt doing it twice a day, but that would be a good question for your doctor.

  • Melissa G

    Shadowcat, I agree with Lisa, check with your dr to see when and how often you need to check your pf. When I was first dx'd, my dr had me doing it twice a day, and if I needed my albuterol, before and after it. Then I had to chart it all so he could see how I was doing. 

  • Pljohns

    Shadowcat-sounds like you’ve gotten lots of good info here and absolutely, check with your doctor.  I check my PF every morning and record the numbers in an app I use.  When I put the numbers in my excel sheet, I take the average of all of the blows and enter that number.  Mine run pretty true and I can tell when I have trouble coming on.  

    so glad you have a diagnosis now and are getting treatment.  It’s a process-but keep going and don’t quit.  Everyone here was AMAZING to give me support and help and that’s what we’re here for.

  • Shadowcat04

    My latest challenge has been air quality. We have forest fires all around us- to the north in BC and Central Washington, to the east in central Oregon and to the south in California and northern Oregon. Our worst AQI today was 175 (unhealthy for everyone). I’ve been coughing more, continuing to use rescue inhaler. I wonder how I'd be doing if I didn’t have QVAR already in my system for 3 weeks. Back to school for teachers in 6 days. That’s going to be an adjustment. I’ve been taking naps and feel like I’m still recovering from an almost 2 month long flare. I always have anxiety starting the school year- asthma or not. This year, I just have this added worry. I’ll be using lots of breathing strategies, keeping inhaler handy, use anti anxiety meds (they are very mild), and lean a little on some trusted colleagues. 

  • LK

    ShadowCat,  Oh, my goodness, that air quality!  Wow!  No wonder you have been coughing more.  It sounds like you have thought this through and have a good plan in place!  I used to tell our kids – It is best to have a plan.  You may have to change it along the way but at least you have a course of action.

    I don't remember, did you say that you have an air purifier at home and/or at school?  I use this one.

      It is 

    • Certified asthma and allergy friendly™ by the Asthma and Allergy Foundation of America
    • Proven to capture the airborne flu virus

    I have one in the bedroom and in the kitchen.  This one covers an area of 200-400 square feet of space.  Some cover a larger area.  

    I find that it really reduces the scents in the rooms.  Even DH notices the air smells fresher.

    Keep taking those naps as long as you can!  Hope you are breathing better soon!

  • Pljohns

    Shadowcat-a plan is a great thing-hopefully the air quality will improve and won't give you as much trouble.  Good luck getting back in school!

  • K8sMom2002

    Hugs on the air quality! That would make me very nervous! 

    Love Lisa's suggestion on improving your indoor air quality — that's really important when you have all the windows and doors shut because the air quality outside is terrible.

    I'm with Lynn, as well … a plan, for me, helps me feel a bit more in control.

  • Shadowcat04

    The AQI finally went back down to green. I’ve been driving kids around to all kinds of activities and appointments for me. I was hoping for a relaxing week. Asthma- wise, I’m continuing QVAR 2 puffs twice a day, albuterol 1-3 times a day and the xyzal. I cough when I go outside or up the stairs. When I cough, I can feel it in my lungs a little. I hope I don’t get sick because I go back to work on Monday. 

  • Pljohns

    Shadowcat-so glad you are doing better and fingers and toes crossed that you stay well and get better since you go back to work next week.

  • K8sMom2002

    Yay for the AQI going back to green — now if you can just get some rest!

    Has anyone around you been sick? What sorts of things do you do for yourself to help ward off colds and viruses? 

  • Shadowcat04

    Wow… freaking out a little. On my way driving to the store for Sunday grocery shopping before heading back to school/work. Thinking about my husband’s comment that I was a getting a little crazy about the “online coupon” issue (I sent in a major complaint because it’s driving me crazy). This led to other thoughts… now I’m thinking, is this QVAR steroids overreacting?? Am I being crazy and I don’t even know it? Then I realize I really am going back to school tomorrow? I don’t feel ready. I’m scared- what if I have an asthma attack? What if I act crazy from the meds? What if I get overwhelmed? At this point I think I’m starting to have a panic attack, which is making me cough and cry and cough. Then, I even had thoughts about maybe it’s all just too much. Then, I’m thinking What? – this is silly, I don’t want to die- I’m just scared and overwhelmed. Not much support at home right now. My daughter and husband have colds, so no sympathy there. My beloved therapist died suddenly about 6 months ago- she understood everything. Question for everyone here: does QVAR cause anxiety, depression or suicidal thoughts? I’m going to take an anti-anxiety med (very small dose because I’m out and about and also terrified of becoming dependent) and go shopping (distraction), I can also contact my mental health nurse/ new therapist if needed. Thanks for your help/ advice/ experiences. I feel a little better writing it out. 

     

  • Pljohns

    Shadwcat-I’ve been on QVAR for more than 5 years and have never had the issues you are describing.  Does your doctors office have an on call/after hours that you can call and ask them about it?  If not, at the very least, you can check with your pharmacist and see if those are possible side effects of the QVAR.  I’m so sorry you are having a hard time for you.  

  • LK

    Shadowcat,  I am so sorry you are having such a rough time right now!  I was on QVAR for a short time and did not have the issues you describe.  I would recommend, as Lynn suggests, asking the pharmacist.  I like your idea of calling your mental health nurse/ new therapist.    Sometimes just talking with someone helps so much!  I think of it kind of like when we take the preventative measures to nip an asthma flare in the but – talk with someone when you first start feeling like you may need to and then it doesn't grow into a bigger issue.  Please let us know how you are doing!!   

  • Melissa G

    Oh Shadowcat, I am so sorry! I agree with everyone else. Great idea about reaching out to your health care professional. Thinking of you!

  • green881
    Shadowcat04 posted:

    (I have a few questions at the end…)

    Is 80 qvar 4 x day a lot, a little or middle?

    THANKS!

    Qvar is pure Beclomethasone (generic).  The original brand name was Becotide back in the early 70s when it was introduced and I have been taking it since then (much more before I was 18 but still every 5-10 years it comes around.

    This pollen year I took Qvar 80 normal dose (it has a counter) 2 puffs twice a day (4 puffs total per today) for about 3 months then tapered down to half that for a month or so.  You should be taking the 2 puffs roughly 12 hours apart if you can.  I looked into the maximum FDA dose last year and I believe it was 320 - hard to find solid information if that is twice or four times the normal Qvar 80 dose mentioned above.  In my humble opinion the dose mentioned above is moderate to middling.

    I've never really experienced any side effects.  Back in the day when it was the only long term control short of oral steroids every malady under the sun was blamed on it but I knew plenty of kids who never had any problems with it and my conclusion was those things would have happened with or without Becotide.  In the US they don't do comparative studies but Australia and Canada health systems pay for those studies – I looked at the research 10 years ago and concluded Qvar/Beclomethasone is the best and went back to it.  

    Everyone's Asthma is personal though.  At some point you want to very gradually taper your usage down to the minimum dose needed (they call that titrating the dose) but don't do it until the asthma flair is completely stamped out in my opinion.  Also my experience in the US random internal medicine doctors don't have a clue about tapering and titrating, if they even know about Qvar or know the dosage.

    I'm really sorry you had such a rough time good to hear you are gradually on the mend.

  • Kathy P

    Hugs @Shadowcat04 - I hope you are feeling better now. Please do call your mental health nurse and/or your doctor who manages your asthma if you are still feeling overwhelmed. I know for myself, I can start feeling panicky when my asthma is flaring. Sometimes it's the first sign that I'm having problems. 

  • K8sMom2002

    Hugs, hugs, hugs, Shadowcat, and I'm hoping that things are better and brighter today.

    I'm also hoping you got in touch with your doc, your pharmacist AND your mental health nurse. 

    Different meds react differently with different people … sometimes it has to do with a person's unique biology. Sometimes it has to do with the rest of the meds they're on. Sometimes it's all about tipping points. 

    Same with asthma … and panic attacks. Hugs, hugs, hugs.

    What things have helped you in the past when you've been overwhelmed? Any way you can ease into your job with half days? 

    I'm so glad you felt better sharing! You can always share here!

  • Pljohns

    Shadowcat-How are you this morning?  I hope you are better and you were able to get in touch with your care team.  Please let us know how you are doing

  • Shadowcat04

    I’m okay. I took my anti anxiety med, which helped a little. I spent a little time breathing and using calming strategies learned from therapy. I also used my inhaler. 

    My son and daughter are only 13 and 15, not old enough for this kind of talk. They’ve been very helpful and understanding with the asthma, though. I will talk to my husband- I just have to think it through because he tends to jump to the end of the spectrum and go overboard. I will text my MHNP today and my sister- she has had severe asthma all her life and is my closest family member. 

    I am heading off to school today. Hoping it goes okay. Thank you so much everyone for your support and care. 

  • K8sMom2002
    Shadowcat04 posted:

    I’m okay. I took my anti anxiety med, which helped a little. I spent a little time breathing and using calming strategies learned from therapy. I also used my inhaler. 

    My son and daughter are only 13 and 15, not old enough for this kind of talk. . 

    I'm so glad you are better and that you could put those good strategies to use! It's really hard to remember them when I'm in the middle of an anxious moment, hour, day …

    As for your kiddos … could you talk with your mental health team and figure out what you could share with your teens? What's appropriate for them? What's comfortable for you?

    I'm sending big prayers for a good, smooth-sailing day for you! 

  • Brenda Silvia-Torma

    Shadowcat04, thinking of you and your first day of school today–hope it all goes smoothly and that you are feeling/breathing well! 

  • Shadowcat04

    The day was very busy and stressful. My chest felt tight in the school and I started coughing. Not sure if I’m getting sick (my family is sick) or if my asthma is acting up. My chest feels like it did when I started this whole asthma flare in the first place.  Hopefully, that won’t be the case.

    Overall, though, the day was okay at school. Thank you for all the support. 

  • Shadowcat04

    The panic, anxiety and depression from the day before stayed away today. I have an appointment with my MHNP next week and I’ll be sure to discuss it. I’m on so many medications and now adding the asthma meds maybe something is out of whack – or maybe it’s me. I hope I’m not getting sick on top of it. If you get sick when you have asthma and are already on maintenance meds, do you call the asthma doctor?

  • LK

    Shadowcat,  That is good news that your day was better!  Glad you have an appointment next week.  In answer to your question about calling your asthma doctor if you get sick?  Definitely Yes.  Hope you have another good day today!

  • Melissa G

    Shadowcat, very happy to hear that you had a better day! I hope you are not getting sick! 

    Do you have an  If not, I would call and ask for one. And I would call and let your dr know how you are feeling. 

  • Shadowcat04

    Still feeling tight in the chest, coughing a lot. Using the inhaler every four hours. I finally reached the doctor, she prescribed a short dose of prednisone and to continue all current asthma meds and to go in for an appointment in the next 1-2 weeks. I could tell that my asthma was worse because other teachers were noticing and asking if I was okay. The albuterol has been helping for a few hours. Definitely stressful at school. 

  • K8sMom2002

    I'm so glad you got in touch with your doc — and that you have a follow up appointment. I also think it was a genius idea to check on your other meds and how they could be interacting — could you talk to your pharmacist about that?

    Hugs on the stressful days and your asthma being so much worse that other teachers were noticing it.

  • Melissa G

    I bet the stress at school is definitely not helping! How long does it typically take for prednisone to help you?

  • Shadowcat04

    I haven’t had enough experience with prednisone to know how long for sure, but I do seem to be a little better today after 2 days. 

  • Melissa G

    Very happy to hear you are doing a little better! I hope you are able to relax this weekend!

  • Shadowcat04

    Thank you everyone. I’m very glad I had your support and advice and that of my older sister (who has had severe asthma all her life). Contacting the doctor was the right thing to do. I am feeling much better. Day 3 of prednisone and continuing QVAR with albuterol as needed. Today I’m home and finally able to rest. I couldn’t sleep last night- I think from prednisone. 

    Been less than friendly, short on patience, nauseous with a little diarrhea and not sleeping much and a tad paranoid (at night) on the prednisone- which has happened to me before. But, it is working. If I can just stay home and people leave me alone (hard with a husband that feels a little sick and won’t give up the couch, and a talkative 15 year old and a clingy 13 year old), it’ll be fine.  I think I need a hotel room.

    Eyes on the goal- breathing better.

     

  • Pljohns

    Shadowcat-glad you are feeling better and I had to laugh at the needing a hotel room-I have told DH several times that the next time i get sick, I’m going to a hotel where I can order room service and just lay in bed and not have to take care of anyone.  I know that sounds selfish but when everyone else gets sick, they get to lay around and do nothing and I bring them whatever they want to eat but when I’m sick, heck no-still have to do everything and take care of everyone.

    The prednisone makes me cranky too and I don’t sleep either. Most of the time when I’m on my 80 mg taper, I’m up at 2AM for the day!  I hope you can rest and get feeling better.

  • Shadowcat04

    Thanks, pljohns, that makes me feel a little better. Looks like DH will be doing some stuff for the rest of the day- that’ll help. 

  • Pljohns

    I think pred gets to everyone.  I saw this shirt one time that said “prednisone-from angel to witch in one dose”. It used a different word than witch, but you get the idea.  DH died laughing and said that was the truth!

    Hpe you can rest some and glad your Dh is helping

  • Melissa G

    'Roid rage is real!! I had to take a high dose of steroids before my neck surgery and oh my goodness, I was a huge mess. I felt so bad for my dh and kids. They just never knew what kind of mood I was going to be in. 

    I hope the steroid effects are short lived are you are back to your old self in no time!