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Med adherence tips?

Do you all have any tips/suggestions tricks for keeping up with your medication and inhaler regimen? Today was my first day of feeling like I was back to normal (besides a little bit of fatigue and pred-somnia) but sadly once I feel better, the militant dedication to getting everything taken on time (bid pulmicort neb, tid atrovent neb) started slipping. Embarrassingly before I got sick, even sometimes remembering twice daily Flovent was a struggle. I have a pill box organizer and have been really forcing/focusing on working it into my AM routine. My doctor suggested iPhone reminders, keeping an extra inhaler at work (ha! Insurance would have kittens). 

Do you all have tricks/tips? I suppose too it’s part of my own growth and maturity of coming terms with a chronic illness and what it takes to stay healthy. “Keep it simple stupid! Take your meds!” A small daily investment to keep away the major decompensations and further lung damage & sensitization to more triggers? Maybe I’ll tape tootsie rolls to my inhalers and neb boxes as positive reinforcement? 

Ah! Cool! Just got an all time best peak flow 470! (Take that asthma! 8 years of woodwind playing including sax and flute paid off!) Holy cow. Those low 300s really were like breathing through a straw. 😁 thanks for your time! 

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  • Wheezy Me

    Hi Emelina! You're bringing a good topic!

    I take symbicort twice daily and a nasal spray 1-3 times daily (depends on the weather/season). I find using symbicort right before brushing my teeth is a useful habit, both because it cleans my mouth of the steroids as required and it easily becomes part of my routine. You can leave it in a handy dry place (bathroom cabinet, or just outside your bathroom).

    Pills: I used to take singulair in the past, and am taking another pill for another condition. A trick that helps me is to keep the whole packet on my desk.

    And generally speaking, what motivates me most is knowing how I'd feel if I skipped my med. And it's just there! We all deserve breathing better!

     

  • Emelina

    Ah perfect, I like the idea of using the inhaler before brushing your teeth and keeping it near the bathroom. Good idea to keep the pill set up somewhere close too! Yep, we all deserve breathing better! Thanks wheezy me!

  • Pljohns

    I keep my neb and inhaled steroids in a "makeup bag" that is more square than a typical "bag" on the counter in the bathroom.  it has a zip lid so it keeps it free of the hairspray etc but I see it every morning.  The bag is big enough i can keep my peak flow meter, extra neb filters and meter batteries.  With it being on the counter, I see it every time I walk in so I use it when I'm supposed to.  My pills are at night so they are right beside the toothbrush.

    When I'm on around the clock meds I have an app on my phone called pillminder.  You set up the meds ad times and it alerts you by saying "there is a medication to take" or whatever sound you pick from the list.  I like it because if I'm doing something it gets my attention.  I've used it for 3-4 years now every time I'm discharged from the hospital to help me keep track of the pred taper (mine is almost a 2 month taper that is REALLY weird) as well as all of the nebs.

  • Melissa G

    Great topic Emelina! I need things to be taken on a schedule so I remember them. If I take something in the morning, it is in the medicine cabinet in the kitchen. If it is taken at night, then in my bathroom. If it is something that is new, I will set an alarm on my phone to remind me. 

  • Emelina

    Lynn and Melissa, thanks for your tips. Love the idea of keeping the meds visible and in places that fit with the time that they need to be taken. Right now they are all in my kitchen cupboard which is woefully easy to run screaming past when late for work and getting the kids to school on time. It’s bizarre, even sometimes I’d have the Flovent in my purse and would have to work late, and still had trouble taking a brief break to take it. Life and work always snowballs unless you reign it in! Lesson learned … self care deserves the same love and attention as everyone else in my life. I’m not doing my best work on 60% lung capacity. 

    Love the idea of the pill minder app. I was trying to track the prednisone taper mentally (with fingers and counting back dates 🙄), this will be fantastic for taking the guess work out of it. Thanks guys for your wisdom. I’m just ultra worried that med adherence is going to get harder once I come off of fmla leave and want to try to make it as fool/life proof as possible. 

    Happy friday! Em

  • Pljohns

    Here's the bag I use for my neb.  It's a medium size vera bradley cosmetic bag that I found on clearance.  I love her stuff but no way am I paying the price for it-i think I gave $10 for this one and it's perfect.

    a word of warning on the trekS battery-if you are doing nebs every4 hours or so for days, go back to a table top one-it will kill the battery-as in-totally ruin it.  These aren't meant to replace heavy duty nebs.   Every 4 hours or so when you're at work should be OK but if you're home and still doing them that often, use the table top one at home.

    ]

  • Emelina

    Ah ok! Thanks for the tip about not killing my battery. Love the bag, cute colors! Man, I knew Pari Is small, but that’s cool to really see how compact it is. 

  • Emelina

    This is going to sound silly … but do any of you get anxious/nervous when medication changes are suggested? I was excited yesterday about the idea of trying a few new things to transition from acute flare neb intense regimen to a working life friendly regimen. Maybe it’s nerves, or just jitters/memories of struggling again but couldn’t bring myself to switch over to the spiriva this morning and didn’t start the singulair last night. I know I can always go back to what works … it’s just so hard! It feels good to finally feel good and breathe easy and not be sucking on my albuterol or coughing so hard to the point of incontinence (oh the joys of having 3 boys!) after months of feeling terrible. Maybe I’ll make Monday the change day (that’s also when the prednisone will step down). 😬 thanks for reading and happy Saturday! 

  • LK

    Emelina,  Believe me, it does NOT sound silly in the slightest!!  In answer to your great question, YEP!!  Everytime!!  Especially when you are just starting to be able to BREATHE again.  For me, it is definitely the memories of struggling again.  Maybe call your doctor on Monday and tell him just that.  You are breathing better and really like breathing     so see if the medicine changes can hold off for a bit.  As Cynthia has kindly reminded us several times, our doctors think we are on the meds they have prescribed unless we tell them otherwise, so if you are waiting or changing that set up, you may want to let him know.  

    A thought – If you wait to try the new meds at the same time as you step down the pred, you may not get a good feel for how the new meds are working/not working.  It could be the reduced pred causing any new problems.  Not that I think you will have any new problems!  

    My doctor told me that the singular can take up to 3-4 weeks to show any effect.  For me, the Spiriva Respimat that I am on helped almost immediately.  When I was on the Spiriva HandiHaler I did not see any change, but of course each med affects each of us differently.  

    Best of Luck!!  

  • Emelina

    Hi lisa, great thoughts, thank you! I like the idea of reaching out to my doc like Cynthia has suggested. Oh yes, I am a fan of breathing! Thanks too for the reminder of the step down and how it adds another factor. You’ve given me the courage to give the spiriva a try. Does it matter if spiriva is taken In the morning or night? Oh boy 3-4 weeks? Good thing we’re going to start soon. Spring flower and allergy season will be here soon. Hard to remember that when it was snowing sideways this morning! 

  • LK

    Don't know if it makes a difference whether you take the Spiriva in the morning or at night.  A pharmacist would know the answer.  The nice thing about them is they are open on weekends to answer questions!  

    As for the Singular, I read in the medicine information that came with mine that for asthma is should be taken in the evening.  Don't know the pharmacological reasoning behind it but I do take mine in the evening.

  • Emelina

    Thanks Lisa. I’ll give them a call. Regarding singulair, I found this. Looks like nighttime dosing is suggested due to singulair’s short half life, more Leukotriene synthesis + symptoms at night and that’s how they dosed the medication in the original trials. Pharmacology is so cool! Thank goodness for really smart people. 

  • LK

    Thank you, Emelina!  Love learning things!!    Amen to thank goodness for really smart people!!  

  • Emelina

    Lisa, Thanks again for your encouragement and thoughts regarding timing of new medicine start and upcoming pred step down. You gave me the courage (and a mental kick in the shorts 😉), so have switched to spiriva and restarted singulair …  and so far so good. Yesterday was a little bumpy but I think that’s from second hand smoke exposure (it wasn’t someone actively smoking, but the scent was there. The cranky lungs freaked!). 

    And the peak flows are holding in the green zone. Sooo exciting! 

  • LK

    Emelina,  Glad I could be of help!    That is wonderful that you are staying in the green zone!!     Good for you for making a decision!!  Sometimes that is the hardest part.  Hope today is better!

  • Pljohns

    Em-so glad the spiriva is helping and that you are doing much better!!!  It's so hard to decide to try a new med.  I have a list of 18 that I had allergic reactions to-a couple of them were anaphylactic ones.  My hard rule is I WILL NOT take a new med if DH isn't home and I WILL NOT take one and go to bed.  My new pulmo took one look at my list and shook his head.  He said there is no way he will EVER try a biologic on me.  I would LOVE to find something that I could use that wouldn't be a neb every day of my life multiple times a day but so far, no such luck.and breathing and being alive is more important.  

    I tend to monkey around with my meds and I'm lucky that pulmo gives me the leeway to do that within reason.  I'm supposed to take my maintenance med twice a day but I've been able to cut back to once and do OK.  Are my lungs more twitchy, yes, but i can make it and if that means the $1200/month med lasts me 2 months, then I can put up with doing not quite as well as twice a day.   I don't monkey around with the dose of inhaled steroids-my maintance med has a black box warning on it that it must be taken with an inhaled steroids or the chance of death increases-yep, not messing with THAT.

  • Emelina

    Lisa, today is a bit more of a struggle. Thank you for the encouragement and check in! I was naughty and tried dropping from 40 to 30mg to ease the upcoming preplanned 40 to 20 mg drop. Coughing a bit more and Things feel more twitchy but peak flow says things are still green. Fingers, toes and eyeballs crossed for the next few days to stay settled … I’m nervous for tomorrow’s return to work where the stress of everything will come back. 

     

    Lynn, gosh, that is so scary to have a history of drug allergies and most frighteningly anaphylaxis. Great thoughts about how you self manage need med starts (having dh around and not taking a new med before bed). Yup, I definitely hear ya about loving to trade in the neb forever, but what’s the alternative? Everyday is a gift; even those where you want to throw pillows and stuffed rotten fruit at the world. Sounds like you have a great team with your pulmo; awesome that he gives you some flexibility to tinker. Is your maintenance med one of the long acting beta agonists like arformoterol or salmeterol? The black box warnings freak me out, but I’d rather know then accidentally set myself up for failure (take a LABA with no steroid, etc). 

  • Deborah Bartlett

    I stay on my med schedule by making a list. Each afternoon, I write the name of each med I use, in the order I use them, for the next day. After using a med, I cross it out, so I know I used it! It can be confusing at times. It can be difficult if you're not feeling well. I use all of my meds at the same time each day. It helps me to stay balanced. 

  • LK

    I am curious, is it normal to drop from 40 mg to 20 mg pred?  Sure seems like a huge reduction in one day's time.  My pulmo only had me go down 5 mg – 10 mg at a time.

    Thoughts and experiences anyone??

  • Deborah Bartlett
    LK posted:

    I am curious, is it normal to drop from 40 mg to 20 mg pred?  Sure seems like a huge reduction in one day's time.  My pulmo only had me go down 5 mg – 10 mg at a time.

    Thoughts and experiences anyone??

    Whoa. That seems like walking down the steps and skipping 3 of those steps. Never heard of a step-down such as that. Any taper I have done has stepped down by 5 mg per day. If I am not doing very well, sometimes a 5 mg taper includes taking a number…say 20 mg for 3 days, then 15 mg for 3 days, then 10 mg for 3 days, then stepping down to doing this for 2 days, then for 1 day…until the 1 -5 mg tablet per day for 1 to 2 weeks, unless I need it for 1 more week in an extreme case. I usually begin a Prednisone taper at 40 mg per day. 4 -5 mg tablets, twice daily. 

  • Pljohns

    Em-I totally agree-that sounds like a BIG jump on the pred!  I don't tolerate more than 10 and really no more than 5 at a time.

    Yes, my maintenance med is a LABA-it's a COPD drug used off label because of all of the reactions to the asthma meds.  Right now, there is literally not one single asthma  maintenance med that I can take. My maintenance med is Brovana inhalation solution.  It's a pain-has to be refrigerated and kept between 38-48 degrees and at $1200/month, I make darn sure it's there so I don't have to toss it out.  It really makes traveling a royal pain but I've figured it out and the only pain now is the 2 hours it takes me to clear TSA with all of my meds!

  • Wheezy Me
    LK posted:

    I am curious, is it normal to drop from 40 mg to 20 mg pred?  Sure seems like a huge reduction in one day's time.  My pulmo only had me go down 5 mg – 10 mg at a time.

    Thoughts and experiences anyone??

    Lisa, depends on how long you were on the 40 mg dose: up to 5 days- you may stop it altogether (medically. Of course it depends on how you feel and how active your asthma is).

    Over 5 days- no, I've never heard of such a rapid taper.

  • LK

    Thanks, everyone!    I am concerned with what Emelina said about her pred dosage - 

    Emelina posted:

    Lisa, today is a bit more of a struggle. Thank you for the encouragement and check in! I was naughty and tried dropping from 40 to 30mg to ease the upcoming preplanned 40 to 20 mg drop. Coughing a bit more and Things feel more twitchy but peak flow says things are still green. Fingers, toes and eyeballs crossed for the next few days to stay settled … I’m nervous for tomorrow’s return to work where the stress of everything will come back. 

    My pulmo did have me go from 40 mg to 30 mg when I had only been on the 40 mg -dose for three days last fall.  Then after three days on the 30 mg he had me go to 20 mg daily.

  • Emelina

    Thanks for your feedback guys. I have a call into the 2nd doctor that seemed real up on his asthma treatment knowledge to ask about adjusting this taper. My original post hospital taper was 60 x3 d, 40 x 3d, 20 x3d, 10mg then stop. The new extended taper that my usual doc wrote for after the 40 to 20 drop kicked my butt last week was 1 week 40, 1 week 20, 1 week 10 then stop. This taper came from the same doc who never checked peak flows or asked about asthma symptoms and suggested dropping from budesonide 0.5mg nebs + oral steroids to just Flovent 110 bid. 😤. I’m currently holding at 30mg and staying in the green (whew). Lungs are a bit twitchy and grumpy but at least not sliding backwards! Thanks for the feedback that this taper seemed insane (dunno why people hate it so much) and the reminder to reach out!

    prednisone tummy is better today with an anti acid. You guys weren’t kidding about the flu like fatigue with dose drops. I think a 🐌 could lap me.

    And I’m advocating for myself! I found out the allergy guy they sent me to isn’t even a board certified allergist (ent by training). So I cancelled that and got scheduled with a board certified asthma/allergy doc in April! No allergy meds for 1 week prior to the visit has me a bit nervous! The copays will be higher, but I’ll feel more comfortable talking to her about options like immunotherapy or if necessary other stuff (xolair). My previous allergist suggested immunotherapy given that I have lots of indoor outdoor allergies (instead of making wheals, my wheals turned into spiders!), but was too chicken to try.

    And 1st day back at work is going surprisingly well. Nice to be up and back and seeing people again. I was about to hulk smash outta my house! 

    Still waiting on pulmo referral. 🙄

    happy Tuesday all! And thanks again for the group wisdom.

  • Emelina

    I think I love this 2nd doc. We’re gonna do a slow 40, 30, 20, 10 and if any step is hard slow down, adjust the inhaled steroid (he mentioned ok to jump up to Flovent 440 bid if necessary once off budesonide nebs, and put a LABA back on). 

    Awesome when you find someone you click with and is both patient and detail oriented! Thanks again guys. Life and lung savers!

  • LK

    GOOD FOR YOU, Emelina for talking with the 2nd doctor and keeping at it!!   

  • Emelina

    Do you guys ever use masks rather than the mouth hand held nebs for long med treatments? I switched to levalbuterol/ipratropium nebs today and it takes forever and makes my jaw hurt (running the nebs off of my table top neb)! I tried the mask but seemed like more was going outta the top blow holes, lol. Never a dull day in nebulizer/lung land.

  • LK

    Em,  No, I have not used a mask for a neb treatment.  

    When I use the mouthpiece-style that came with my tabletop neb, I have that same feeling that a lot of the med is just going out into the air. 

    This is the one –

    But when I use either of these two mouthpieces –

     

     

    the mist stays in the large section of the mouthpiece when I exhale so it is available for my next inhaled breath and hardly any of it goes straight out into the air.  In other words, the vast majority of it gets breathed into my lungs where it needs to go.

    Hope this helps!

     

  • Pljohns

    I've never used a mask either-I have one but never used it.  I've gotten to be a pro at holding the mouthpiece to the Pari's in my teeth and just going for it.  I usually will put my make up on and/or dry my hair while I'm doing a neb.  I'm a multi tasker!

  • Emelina

    Sweet, thanks for the tips Lynn and Lisa! I’ll  unwrap my pari and give the sprint a try!

  • Shea

    I hadnt seen this thread before Em, but anytime someone mentions Singulair as a medication, I always give them the warning that I never got: Singulair is being correlated –although causation has not been proven–with Churg-Strauss Syndrome (CSS). I myself developed CSS a year after starting Singulair. The doctor in the hospital who recognized my disease after it gave me a heart attack from allergic eosinophils surrounding my heart is a well-respected pulmonologist and he told me he personally believes it is a bad medication. He told me studies are increasingly coming out tying the two together, and that CSS us becoming a less rare disease as a result. I looked online well and found this info although Singulairs defense is that people usually have the disease already but dont know it and are on steroids for symptoms of CSS and also take singulair for symptoms common in CSS, but when they stop or lower the prednisone and remain on singulair the CSS disease shows itself– and they say it is not caused by the singulair. Well I can say that definitely was NOT what occurred in my case and I DO place some blame on the singulair (although I doubt I could prove causation I believe it to be). Now, I know CSS is marked by high eosinophils (other diseases can be too) but my primary doctor who prescribed me the singulair originally did so as a solution to me asking if there was anything I could do about a cat allergy because my boyfriend at the time had cats who I was severely allergic to and I wanted to be at his house with him but couldnt. He prescribed me singulair. The singulair worked so well for me– I previously could only be around cats for even 10 minutes before wheezing so bad and itchy eyes sneezing mess. The singulair worked I had no visible symptoms– it was like I was not allergic anymore–but at a blood level it was not working, and after a year of takung it and living symptim free with my now-ex and his cats and dog, I think my tissues and organs became infiltrated with these allergic inflammatory blood cells to a point that I started having weird asthma symptoms (which I had previously never had any asthma just allergies). I wasnt on prednisone nor did I have symptoms of CSS prior to stsrting singulair so Singulairs excuse doesnt make sense in my case. But as I started having the asthma issues, I suspected the cat allergy coming back and the doctor never warned me I had high eosinophils nor refer me to a specialist and I did end up moving out of that home eith the cats and dog and learned how severe my allergies hsd become after the heart attack and CSS as then I had worse reactions to both cats and dogs than ever before. Anyways, I will never take singulair again– I think it doesnt treat a full allergic reaction and a person can get in a bad situation on it like I did and it messes with your system– but I dont know for certain and im not a doctor–recommend to others to discuss with doctor never just stop anything without talking to your doctor, and if you do take it to try to keep track of your eosinophil level (in cbcs) and to avoid known allergens while on it– even if symptoms might appear less or gone, AND just to know that it is correlated with CSS so that if you and your doctor know this you can keep your eye out for it. 

  • Emelina

    Holy cow Shea, thanks for the heads up. I have never had anyone point that out … not from the person who first prescribed it! I will definitely add that to my list for when I get into pulmo and talk to my pcp about it. I was going to ask about my eosinophils and if they want to check an IgE level. Last time I was at urgent care with bronchitis they said my basophils were high? Weird. These medicines are also new and sophisticated but also not without their risks. And css is such a difficult, rare disorder that any correlation better make people sit up and take notice rather than have decades go by. Thank you!

  • Emelina

    I may have already asked this (sorry! Pred brain), have you guys noticed that nebs just seem to work better? At work, I’d been told to tell patients “based on the data, metered dose inhalers have the same effectiveness as nebulizer.” For the longest time I parroted this advice too, and even got into arguments with my dad (has copd) when he swore nebs were better. 

    Maybe it’s the longer duration and the extra humidity down in the lungs that helps deliver the medicine more completely? I know the doses tend to be higher too (90 mcg puff vs 1.25mg in 3 ml). I have a love hate relationship with albuterol (makes me super shaky, tremulous), but nebulized levalbuterol is amazing. After a treatment it’s like whoa, i suddenly have more lungs and it’s like I can breathe down to my toes. My little ventolin never quite does the same. 

    So interesting the difference between the “data” and “studies” and our experiences. 

  • LK

    Emelina, 

    Emelina posted:

    I may have already asked this (sorry! Pred brain), have you guys noticed that nebs just seem to work better? At work, I’d been told to tell patients “based on the data, metered dose inhalers have the same effectiveness as nebulizer.” For the longest time I parroted this advice too, and even got into arguments with my dad (has copd) when he swore nebs were better. 

    Maybe it’s the longer duration and the extra humidity down in the lungs that helps deliver the medicine more completely? I know the doses tend to be higher too (90 mcg puff vs 1.25mg in 3 ml). I have a love hate relationship with albuterol (makes me super shaky, tremulous), but nebulized levalbuterol is amazing. After a treatment it’s like whoa, i suddenly have more lungs and it’s like I can breathe down to my toes. My little ventolin never quite does the same. 

    So interesting the difference between the “data” and “studies” and our experiences. 

    I absolutely get a better opening of my lungs with the nebulizer than with my ProAir MDI.  Absolutely!   Same love/hate relation ship with albuterol nebs here, but it sure does help me take a deep breath. 

    So, perhaps they need to do a few new studies!    

  • Melissa G

    The only time I used a mask with the nebulizer is when I had pneumonia. I just couldn't take a deep enough breath with the mouthpiece. But other than that, I use a mouthpiece when I need to use the nebulizer. 

  • Emelina

    Oh my gosh! Thank you guys for the pari sprint suggestion. These guys are awesome! Finally it doesn’t feel like I’m just atomozing atrovent and budesonide all over my bedroom linens and floor! Whoever designed this thing is brilliant. I don’t think I can ever go back. Thank you for the tips!

  • LK

    Em,  So glad it is working well for you!!    It made a HUGE difference for me as well.

  • Emelina

    Thanks Lisa! The only downside, I think I’m actually getting more medicine because budesonide tastes terrible! Wouldn’t that be nice if they had flavored nebs …. hmmm chocolate! Super excited too, hit a 490 and went out to dinner with friends with barely a wimper of a cough! Eeeee! Thank you prednisone & nebs & to this group. Each day is better! And I’ve been working on my job hunt! So exciting, better days are coming.

  • Pljohns

    Em-LOVE my LC sprint too when I'm sick-I can only use a neb and yes, it absolutely gets deeper in your lungs.  DH was sick recently and went to the doc-he was told he could either use an inhaler for 6-8 weeks or a neb for 1-that should tell you something right there.

    So glad the neb is helping-I have been REALLY impressed with Pari products=-won't buy anything other than that now.