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Recently diagnosed and trying to figure out treatment

Hello everyone!

I was recently diagnosed with asthma and the doctor immediately prescribed Advair (which I haven't taken yet). Earlier this year I had a bad reaction to prednisone that caused pain throughout my ribs and joints that has never gone away. I am still in the process of figuring out what that pain is attributable to. I am afraid to start taking another corticosteroid because I don't want to make whatever is happening with my body worse by compromising my immune system again.

So, I'm wondering what medications you all take to manage your asthma. Were there things you tried that didn't work for you or caused serious side effects? When I look at the side effects list for Advair I cry. I just need some help figuring out what my options are so when I see my doctor I can be proactive about my medications.

Thanks so much!

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  • Jen

    Hi librarygal,

    Welcome to the asthma forums.  Looking at medication side effects can definitely be scary.  I think it is really important to look at both the risks and benefits of the medication.  Have you had a chance to discuss your concerns with your doctor?  When do you see your doctor again?

  • K8sMom2002

    Hi, Librarygal4, and welcome!

    Hugs on the asthma diagnosis, especially as an adult. I was in your boat as well — diagnosed when I was 30, although my doc said that all those breathing problems I'd had when I was younger were probably undiagnosed asthma.

    I agree with Jen — circling back and talking over your concerns with your doctor — including taking the prescribing information with you – can really help you weigh the risks and the benefits. A question I ask is, "Is there a different medicine that could help me that would work for my situation? Would the risks and benefits be about the same?"

    Another question I try to ask is, "Can you explain to me how this medication works?" 

    AAFA has put together a resource page to help folks understand . Another thing that has helped me is to understand my .

     

  • librarygal4

    Thank you both so much for the replies.  I had the PFT done on Monday and my primary doctor's office left me a voicemail on Tuesday that I had asthma, they were sending a prescription for Advair to my pharmacy, and to schedule a follow up in one month.  I was like "Um, I know absolutely nothing about asthma so I'd like to talk to someone about my diagnosis" and they said it could be discussed at the one month appointment.  Then I got upset and insisted that I be able to see someone before then so I could get some more information about the diagnosis as they didn't even tell me how severe it is or anything (my doctor isn't the best and I will be switching soon).  After insisting, I will be seeing her next week to talk about the diagnosis and treatment options.  Since I have very little faith in my doctor, I am trying to be as thorough as possible beforehand, as you can imagine.  

    At this point, I don't know whether I am allergic to anything that could be triggering the asthma.  I am thinking of also insisting on an allergy test.  What do you think?

    Thank you for the advice on what questions to ask.  I am generally someone who really doesn't like taking medication if I don't have to so finding out that I was supposed to start taking a corticosteroid twice a day for an unknown period of time was, not to be overly dramatic but, quite devastating to me.  I've been dealing with these other pain issues (as mentioned above) and have been to multiple doctors over the past year and this asthma thing sort of came out of the blue.  I didn't even realize I had it!  I'm still adjusting mentally to the diagnosis

    Thanks so much again!  I'm glad to have found this group!

  • K8sMom2002

    I think you're wise to talk over your options and your diagnosis with your doctor before beginning with a new med that you don't quite understand and aren't comfortable with. I would be like you. 

    I'll see if I can flag others who have been on Advair or similar medications for their take. But I would want to know and explore my options and understand what's contributing to my asthma. An ounce of prevention and all that …

    I think it's a good idea to test for allergies (check with a board certified allergist to do that) and also to keep a — just a brief written journal of your asthma attacks, when they happened and what you were doing right before that.

    Did you get prescribed a rescue inhaler? That's important — that and understanding how to use it and having and understanding a good, solid , which you can print out and take with you to your doctor. 

  • librarygal4

    Thanks so much.  I did get a rescue inhaler and sort of know how to use it.  I will be taking both inhalers to my appointment to be sure I understand them.

    I did start a trigger diary and I already know that stress and cleaning the litter box trigger it.  I'm sure it is a long, slow process but well worth it

    Thanks again for all of your advice.  I was feeling very overwhelmed and didn't know who to turn to and I really appreciate it.

  • K8sMom2002

    Did your pharmacist provide you with a spacer to use with your inhaler? Or does your type of inhaler require a spacer? We adults tend to think we don't "need" a spacer, but actually little kids tend to do better than us. We need spacers, too, and for an expert to help coach us and train us so that the meds get where they need to get — down in the lungs!

    My pharmacist is the one who showed me how to use an inhaler and a spacer. There are inhalers that don't require spacers — I think Respiclick doesn't.

    And on the litter box — can you switch to the low dust litter? And perhaps wear a mask while you're changing it?

  • Jen

    I had the PFT done on Monday and my primary doctor's office left me a voicemail on Tuesday that I had asthma, they were sending a prescription for Advair to my pharmacy, and to schedule a follow up in one month.

    From what you wrote above, it sounds like your primary care doctor gave you a diagnosis and prescribed meds.  I am glad you are going in to see them next week.  One thing you may want to do is to ask for a referral (if you need one with your insurance) to see a pulmonologist.  Primary care doctors are great for lots of things, but they aren't specialists.  A specialist might be able to give you more direction in terms of treatment.

  • Shea

    Do you have cats or dogs? They can be a serious trigger for asthma if you are allergic to them… Also birds… So if you have pets at your residence, it wouldnt hurt to see an allergist and get tested. I have allergies, and they developed into a chronic allergic disease after to living with cats and dogs when I was allergic to them (now I just have reptiles for pets).

    For home remedies, I sleep better with a HEPA air purifier in my bedroom, it helps my asthma symptoms.

    I use proair inhaler, and I carry it everywhere with me, and use prednisone orally to control my asthma and my chronic  allergic disease. I am working with my doctors to get to the lowest prednisone dose possible to prevent damage to my lungs from chronic inflammation. I sometimes use medications with inhaled steroids in a nebulized breathing treatment to help me move to a lower dose of prednisone.. The one I use is called Budesonide. With my disease, asthma is one component, and being on a maintanence doise of prednisone is normal, but for only an asthma diagnosis, it is not as common to need daily long term prednisone.

    One thing you can talk to your doctor about is creating an asthma action plan, understanding what symptoms of an asthma attack are, and how to treat those symptoms, understanding how to get inflammation in the lungs and airways under control with medications or avoidance of triggers, then once infammation is under control, what meds to carry with you for as needed. 

  • librarygal4

     - I did not get a spacer with my quick relief inhaler, although the doctor told me I could use one, or just use a toilet paper roll and that would work just as well.  My Advair is the powder disk one.  I have not used either inhaler yet because I want to talk to my doctor first.

    We do already use the low dust litter (it still has dust) and I just ordered a mask to use when changing it so that should help.

    And thank you for checking in with me.  I am doing fine today.  Learning more and more about asthma and hoping to get answers next week when I see the doctor.  

     - Sorry that I wasn't clear about the diagnosis.  I did go to get a PFT done at a pulmonology office and it was diagnosed by a pulmonologist along with recommended prescription, it was just my primary doctor's office who told me the news and called in the prescription.  But that was another question I had – who do you see to manage your asthma?  Do you go to a specialist like an allergist or pulmonologist or is it managed by your primary care doctor?

     - We have three cats (and I have always had cats in the house) so I agree that it makes sense to get tested for allergies. I am looking at air filter options, both for our furnace/air conditioner and room specific ones.  Thank you for the tip about having one in the bedroom.  Also, thank you for the recommendations for things to discuss with the doctor.

     

  • K8sMom2002

    Librarygal4, glad you're doing well today!

    Did you have a follow up with the pulmonologist's office? Usually whenever I or a family member has had a test at a specialist's office, that specialist arranges for a follow-up appointment to go over the test results, but it may be different in your case.

    Hearing what your pulmonologist says and what your primary says and comparing the two may help you figure out whether you need to be under the care of a pulmonologist. Pulmonologists are more familiar with lung diseases and asthma, but a good primary care doctor that you're comfortable with is a valuable ally in managing asthma.

    Do you know  you've been diagnosed with? That can help you make that call as well.

    What instructions did your doctor give you for when to use the rescue inhaler? The active drug in a rescue inhaler is short acting and opens airways during an acute asthma attack. 

  • librarygal4

    I didn't have a follow up with the pulmonologist.  My instructions were to see my primary care doctor for a follow up visit in one month, which I found ridiculous since no one told me anything else about my diagnosis.  No one has told me what type of asthma I have yet or when to use the rescue inhaler.  Like I said above, I was pretty upset that I was expected to wait a month to get even this basic information from my doctor.  

    This treatment has been pretty typical of my experience with all of the doctors I've seen over the last year for my pain issues.  I've been prescribed medications that don't interact well with each other because one didn't read my chart (luckily I knew not to take them together), I've had to call and remind doctors of referrals and prescriptions they said they put through already and somehow always get "lost in the system" which delayed my care for weeks or months at a time, one doctor told me one thing and ordered tests and then turned around and told me the exact opposite when I asked for further clarification.  Sorry, just needed to vent.  I do not have much faith in the medical community at this point so I'm trying to be as knowledgeable about asthma as I can be so I know I am making the best decision for myself since it is my health on the line.  

    Thanks again for all of your help!

  • K8sMom2002

    Venting is perfectly fine here! It sounds as though you've really had a confusing time trying to negotiate the healthcare system — I hate that! Being sick and not feeling well is bad enough, but not being able to have full faith in your providers is frustrating and not helpful at all!

    You're already doing a helpful thing in learning about asthma and its treatments and figuring out what you're comfortable with and what you need to know. That's always a good tool to have when it comes to advocating for yourself.

    I'm really glad you were able to push up the appointment with your doctor! Fingers crossed that you can get some good, solid answers and a good solid plan!

    And we are here for you to vent away! We all have days where we just need to share our experiences with people who have been there and done that. We're here for you!

  • librarygal4

    Thank you so much for the support.  Just being here and finding people to talk to about it has been tremendously helpful!

  • K8sMom2002

    Yay! We're here, any time! Keep us posted on what the doctor says — I'm hopeful that your appointment will give you more information and help clear up some of your uncertainty.

  • Kathy P

    Getting a diagnosis and meds without much explanation sounds very frustrating. It's important to know how and when to use your medication. Something else to put on your list of questions for the doc would be asking for an asthma action plan. I'll be back with a link….

  • Kathy P

    That page has a sample asthma plan at the bottom that you can print out and ask the doc to fill out. It also has some good info about the different types of rescue and long acting medications. 

  • librarygal4

     - Thank you for the asthma plan link.  I will be sure to ask about this at my appointment.

     - Things are going fine, thank you for asking  I'm looking forward to my appointment on Wednesday to hopefully find out more so I know what I am dealing with and what I am doing. 

     

  • K8sMom2002

    Absolutely! I always find it helpful to write down my top three questions so that I don't forget them.

    Sometimes I even hand the paper to my doctor so that he (or she) can see what I have on my mind. 

    What sorts of questions will you be asking? Has any of the helped you? I hope so!

  • librarygal4

     - thanks for checking in on me.  I did get to speak with my doctor and she answered all of my questions and I do have a good plan in place now.  I've started the Advair and am having no side effects and feeling good about the benefits so far.

    Take care!

  • K8sMom2002

    Oh, I'm so glad! What were some of the concerns she addressed? And what kind of benefits have you seen from the Advair?

  • librarygal4

    A lot of my questions were around treatment options.  I had concerns about using an inhaled corticosteroid as I had a bad reaction to prednisone in March that has resulted in widespread body pain, recently diagnosed as fibromyalgia.  I did not have the pain prior to taking prednisone so I am very leery of corticosteroids.  She assured me that inhaled corticosteroids would have little effect on my immune system or increase pain in my body, and it's been my experience so far that that is true.  

    As far as benefits from Advair, I have found I no longer have any coughing throughout the day and don't feel the tightness in my throat that I felt before (that I never knew was related to asthma).  And I haven't experienced any side effects so far either. So all in all, I am happy with the Advair.  

  • K8sMom2002

    Very gentle on the fibromyalgia — I was diagnosed with fibromyalgia many, many years ago, and it's no picnic. The good thing is that, with a doctor who understood it and a little luck, plus some good physical therapy, I was able to become the "poster child" for fibromyalgia. I'm like you, though, and I do see it flare up when I have immune stresses. 

    I'm glad that you are able to do the Advair — I'm thinking that if you feel better, you'll be able to move more, and movement has always been my best weapon against fibromyalgia flares. But oh, the days when you DON'T feel good and you don't want to move. 

    I can identify, too, with not realizing that a lot of the symptoms I'd struggled with kind of "under the radar" all my life were related to asthma. 

    Did the coughing get worse for you at night? If so, has the Advair helped with that? 

  • Kathy P

    So glad that the Advair is helping and not causing any side effects. I've also been assured by my doc that the dose of inhaled corticosteroids delivered directly into the lungs is better tolerated than oral steroids. And I've definitely found that to be true as I always have side effects from oral steroids.

  • K8sMom2002

    Kathy P and LibraryGal, how long does it take for the Advair to start kicking in? Because I'm wondering if it could be a compromise solution for the times that DD has severe asthma flares following an upper respiratory infection? 

    Right now her emergency plan says for her to start taking prednisone after a certain number of days and the increased inhaler use hasn't helped. But I really don't like prednisone … I'm just asking here so that I know whether it's something that would be worth my time and my D's doctor's time to talk about. 

  • librarygal4

     - Thanks for the reply!  Fibromyalgia is definitely no picnic, but I'm glad to finally have answers after so many months of testing.  I can finally move onto treatment, which makes me hopeful.

    As far as how soon the Advair kicks in, I would say pretty quickly for myself.  I have "moderate persistent" asthma as I had symptoms every day and a few nights a month.  I noticed a difference after the first dose of Advair and by the second day I noticed a big difference.  I never had much trouble breathing though, so I'm not sure if your daughter has trouble catching her breath it might not work for her quickly enough.  What I noticed was a difference in what I call "irritation" – I could often feel my throat was irritated, either by cold or whatever else and that it was causing me to cough.  I don't feel that very often anymore.

    I would definitely inquire about it.  Prednisone is the worst and wreaks all kinds of havoc on your body so any way to avoid that if there are better options is worth asking about in my opinion. Hope that helps!

    KathyP – Thank you for the reply as well.  I was very relieved that it wouldn't have the same effect as prednisone.

  • K8sMom2002

    Hmm … she complains often about that, but I've never connected it back to her asthma. Something to talk about with her doctor!

  • Gloria

    Hi Libertygal. I just found your thread. I developed Asthma last January at the age of 62 after a bout of bronchitis. At first they wanted to give me prednisone, but I hate prednisone because od the side effects I experience, so I declined to take it.

    i tried many inhalers, but find Advair 250 works the best for me. I also take prescription Flonase and Montelukast. I have a rescue inhaler, Proair. At first I thought it didn't work, but since I got a spacer it works much better. I also sometimes use nebulized Albuterol. 

    Recently I got a prescription of a cough suppressant pill called Benzonatate. This has really helped to reduce the coughing I experienced. This has been a long journey for me, through my PCP, two different Pulmonologists, an Allegist, an ENT, a Cardiologist, a Neurologist and a Rheumatologist.

    I started earnestly trying to get this taken care of about six months ago; and I feel that now it is pretty well managed.

    This group has been very helpful to me and has given me many great ideas to bring up with my doctors. At first it was overwhelming, but now things are pretty good!

  • K8sMom2002

    Gloria, you've done so well at advocating for yourself and pushing to get treatments that work for you! It's just marvelous to hear how much better you are doing now!

    Librarygal, how are things going now? Advair still helping out?

  • Gloria

    I am far from being an expert, but I think it is important to advocate for youself and try to be informed. I am very thankful that I found this group.

  • librarygal4

    The Advair has helped a lot.  I haven't really changed anything else yet.  Waiting to get my allergy testing done next week to see what that turns up.  But feeling much better with just the medication for now.

  • K8sMom2002

    Oooh, maybe the testing will help you identify your triggers, which may help you avoid some of the things that trigger attacks in the first place!

    What day do you go for testing? I'll be sending good  and crossing fingers, toes and eyelashes for you!

  • K8sMom2002

    LibraryGal, hoping you're still doing well and that your testing will help shed some light onto your triggers.

    Check in when you can!

  • jujutsumaster

    Hi LibraryGal, just seen this thread.

    Can only echo everyone else re testing. So important if you can identify triggers.

    Hope the testing goes well and wishing you all at AAFA a Happy New Year from England.

  • librarygal4

    Hello all!  I had my allergy testing done on Wednesday and I'm all clear there so at least that is good.  Things are going well and I'm still having minimal side effects from the Advair, including an infrequent dry throat and my voice changing, which has been strange.  But, the asthma is under control and I'm doing well.  Thank you all for your responses and support!  I hope everyone is doing well!

  • Gloria

    Hi Librarygal. I'm glad you got good results on your allergy testing. I too have no allergies. What seems to really bother me is perfume and cigarette smoke. Yesterday I has a pretty bad perfume assault, but I was able to quickly use me rescue inhaler.

    It's good to hear that things are under control. I was diagnosed with asthma a year ago and I use Advair too. On a recent visit to my dentist I was told that Advair can cause some retraction of the gums which is reversible. My dentist advised me to get a water pick, which I have done. It will be interesting to see if they have improved when I have my next visit.

  • librarygal4

    Gloria – The only thing I've noticed so far that sets it off is car exhaust and cat litter dust.  I now use a face mask to clean the litter boxes but haven't found a solution for the car exhaust

    That is interesting about the retracted gums.  I will keep an eye out for that too, thanks.

  • Gloria

    I have cats, too. I switched my litter to Feline Pine. It has much less dust and no nasty smell. You can also flush the solid waste down the toilet. My veterinarian had suggested it to me. A bag also lasts much longer than the clay litter. I'm really glad I found it!

  • librarygal4

    We tried Feline Pine a couple of years ago but we have one very picky kitty who refused to use it and ended up peeing outside of the box rather than use something new.  So we switched back.

  • K8sMom2002

    LibraryGal, great news on no allergies! Yay! 

    Ugh on picky kitties! I've had that happen! Could you lengthen the transition period? Or maybe begin by offering two litter boxes so that he could get used to it?

    I hear you on the car exhaust … it sets me off, too. Are there certain times or situations that you deal with car exhaust? Maybe we can brainstorm together about ways to reduce your exposure. 

    I know that I don't back into my garage, and I try to avoid closed in parking decks if possible. If I do have to use a parking garage, I'll go to the top deck or if it's raining, I'll try to find a park near an elevator so that I don't have to walk so far. I'll also avoid parking near an entrance to a parking deck, because there seems to be a higher concentration of fumes there. I guess it's because people are in a mini traffic jam waiting to get in and out.

    When I'm driving, I will make sure my windows are rolled up and that I don't have my AC set to the "fresh air" setting.

  • Gloria

    Feline Pine now makes a clumping litter as well as the pelletts. Also, I have seen ads for Cat Spot litter which is made out of corn husks. These might be good alternatives.

  • K8sMom2002

    Gloria, do you know if the Feline Pine clumping is JUST pine? If it doesn't contain corn, we might be able to try it. 

  • Gloria

    I don't know. I have seen it when I go to buy the pellets, but since my cats are okay with the pellets I haven't looked into the clumping litter.

  • Kathy P

    I have issues with car exhaust too, but only from older vehicles (pre-catalytic converter and older deisels). My dh used to have a '66 Pontiac and the exhaust was a huge trigger for me! Both ds and I had issues riding IN that car – part of it was the old dusty/must upholstery. And I used to hate having to follow him to the shop or something driving behind! I have a similar issue in dh's VW (old and has mold/musty issues, but not the same exhaust issue), but ds does not. I wonder if he was having more issues w/ the exhaust and that's why he's OK w/ the VW. Hmmm….I hadn't thought about the exhaust separately.