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Horrible asthma for 7 weeks now…

Haven't ever needed to post on here, but these past 7 weeks, going on 8 have been really rough. I'm a 33.5 year old female who was diagnosed when I was 7 or 8. My asthma has been well controlled for like 15-20 years. I live in Central PA and working in Harrisburg, PA (one of the asthma capitals). 

It started in the first week of August of this year, we have had one of the wettest summers/early fall seasons so far. It started with chest tightness, coughing and using my rescue inhaler (ventolin) almost every day. I then had my first attack in forever! I went to Patient First (could not get into to my asthma/allergist or my PCP). I was given a breathing treatment and prednisone (low dose 4mg) dose pack. I followed up with my PCP the following week and finally got my own nebulizer, I ended up needing to use it once a day for a while. I continued all meds as current, this includes singular 10mg (at night), Advair 250/50 twice a day, ventolin rescue as needed. I have been fine with this regimen for many years. 

I had another attack 2 weeks after the first one and finally got in with my asthma doc, who gave me samples of Symbicort to replace my Advair for the time being. I felt worse/not any better after a week on that. I also had to get FMLA from my PCP to cover me at work (I work in the OR at a busy hospital). I went back to the asthma doc a week later and he put me back on Advair and a new regimen to get me over this flare (is 6 weeks at this point, a flare??!). I also had another slight attack 2 weeks ago (this is 3 now in 7 weeks!)    : ( 

In the mean time, my work got their flu shots, I get one every year (plus we're required), but I am terrified to get one right now, I'm going to try and hold off until the end of the month and this new regimen takes hold. 

All the while, we have had continued rain. So, I am currently on week 2 of continuing Advair 250/50 twice a day, singulair 10mg (night), Spiriva (twice, once a day), qvar 40mcg (twice a day, 30 mins after Advair). So far, it seems to be helping. I had a good 5 days of clearing of the cough (which has been the worst part) and breathing 'normal'. However, late last night, the cough came back and I had a rough night/morning. 

I should also mention I have severe year-round nasal/eye/skin allergies. Mostly nasal, but the past year the eyes/skin have picked up too. I used to take Xyzal 5mg for about 10 years and LOVED it. Then it went OTC and got expensive and semi-stopped working. So earlier this year (Feb) I was put on a combo of Zyrtec (night) and Allegra (morning), had to get them in prescription form to get them covered by my FSA. Whew! I know this was lengthy, but it has truly been a rough ride. I'm also in school for nursing and took this semester off (pre-reqs) to get my mind right before clinicals happen and so far, I've been more stressed than ever. 

Anyone else having major issues all of a sudden after being well controlled? I'm also not looking forward to when the samples stop bc I'm sure these meds are expensive and I have nothing left on my FSA after 2 trips to urgent care, 2 to the asthma doc and soon to be 3 to my PCP in 7 weeks. : (

I will be getting an updated Asthma Action Plan in November.

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  • K8sMom2002

    Oh, my goodness! Big hugs, Megsmaroo! It sounds as though you have been through the wringer!

    But it ALSO sounds like you have done everything you possibly can. I'm hoping that you can get a good updated asthma action plan that will help.

    A few random thoughts …

    • the flu shot: my doc says it's super, super important to get the flu shot since I have asthma. She also insisted that I get the pneumonia shots — I have had one, and it really made a difference. Can you talk to your doc about your concerns? The shot itself is not a live virus, so it can't give you the flu. I know I'm probably preaching to the choir as you work in healthcare and are almost a nurse!. Last year's flu was particularly deadly – 80,000 deaths! 
    • affording your antihistamines: my daughter takes Zyrtec, and we have to watch our dollars, too. We have found a bulk bottle of generic Zyrtec (100 count) through our pharmacist that is much cheaper. Could you ask your pharmacist if they can order that for you? It doesn't require a prescription, but even if you do get a prescription for it, you may be able to ask your doc to write it for that particular brand. I believe the bulk bottle for us is about $10. 
    • affording the REST of your meds: You may be eligible for help through some of the  listed on AAFA's resource page.

    You're not alone! We're definitely here for you, and definitely BTDT!

  • Pljohns

    Megsmaroo-you have really had a tough road!  I'm so sorry you have had to deal with this for so long.  On the medicine front-search the internet for coupons.  I know Spiriva has a savings card, qvar does too (I'm on it and it's $17 with the card), symbacort always has savings cards-I used to manage primary care so I remember which drugs always had the copay cards.  if you don't find them on line, ask your doc if they have any.  Most of the time, the reps will give them the med samples AND copay cards but the doc's offices are bad about forgetting the copay cards.  The phamacy may also have some.

    QVAR one:

    Symbacort one

    Spiriva one

    Advair one

     

    I hope these help and hope you feel better soon

  • Melissa G

    Hi and Welcome Megsmaroo! You have already gotten some great advice from Cynthia and PlJohns. Just want to say hi and send you some !

  • Brenda Silvia-Torma

    Hi Megsmaroo! I also experienced a lot of problems this summer after not having any for years…first diagnosed in 2013, but didn't really experience asthma symptoms until June of this year.

    Do you know what your triggers are? For me, it used to just be illness-related, but now it's ozone and particle pollution. So, I have to wear a mask outside if the air quality is anything but Green–which in DC is pretty much every day. But, it's helped me to reduce the number of flares I've had and allowed me to be out and about, which was great. Here are some resources on asthma triggers:

      Hope you're feeling better soon!!

      Brenda

    • Megsmaroo

      Hey, update, kind of just maintaining. Had another attack last Monday 10/15 and took me all week to recover. Now I'm just experiencing constant tightness, coughing and exhaustion. I'm no longer on symbicort. Back on my twice daily advair 250/50, rescue Ventolin, singulair, nebulizer as needed and my allergist/asthma doc added spiriva 1x a day x2 puffs and qvar 2x daily x2 puffs after my advair. I'm still having issues on all for this, not feeling very positive overall. Tried to get into a pulmonologist, but they can't see me until March. I need to get back to 'me' before I start nursing school in January. 

    • K8sMom2002

      Ugh on the delay, Megsmaroo! Could you ask if they have a waiting list or a cancellation list? Or could you talk to your primary care doc and see if they can't get you into see another pulmo or allergist?

      Gentle hugs and sending good easy-breathing your way …

    • Melissa G

      Oh my! I am so very sorry! I would definitely try to see your primary and see if they can help and to see if they can get you into your pulm dr earlier.  What does your  say to do when you are feeling like this?

    • Megsmaroo

      Well, that's the problem, I don't have an adult action plan. I'm scheduled to get one on November 8th. I just made an appointment for today at 245 to see my allergist/asthma doc .I've been on the new combo meds for almost 4 weeks and still feel like ****, daily. Didn't sleep at all last night, up wheezing until about 2am. And I have been really tight and coughing all day. I have FMLA through work, but I'm getting attitude for it .I'm so over it .

    • Megsmaroo

      Update: kept getting worse at work, so went to my allergist appointment at 245. He ordered another chest x-ray and blood work for d-dimer and BNP. While at this appointment, I got a voicemail from my PCPs office, they were able to get me in with the pulmonologist tomorrow at 10am. Whew! I'm exhausted, still feel about the same, hoping for better sleep tonight.

    • K8sMom2002

      Megsmaroo, SO glad you got into see your allergist and you will see your pulmo tomorrow! Sending easy-breathing your way for answers and a good plan forward!

    • Megsmaroo

      Honestly, he didn't really say anything other than wanting to rule out other things. I'm at my wit's end and don't know what else I'm supposed to do as a patient. Well see what the pulm says tomorrow, is it wrong that I'm just not even that excited? I feel so negative and I'm not myself, which I hate .

    • Brenda Silvia-Torma

      Oh Megsmaroo, I'm so sorry! I totally know what you mean when you say that your not excited to see the pulm. It's hard when expectations are low and your body is feeling so not right. As you know, not getting enough sleep is a huge problem and can cause difficulties in managing stress and completing tasks. Did the allergist address your difficulty in breathing/wheezing at night?

      Is your return to Advair helping at all? Hoping all goes well with the pulm doctor tomorrow!!

      Brenda

    • Megsmaroo

      Update: saw the pulmonologist this morning, it didn't go as expected, even though I really didn't have expectations. When they scheduled me yesterday, they were supposed to get me in for a pulmonary function test and bloodwork first. So the PA was a bit upset about this. I really likes her though, she was compassionate and listened to me. Of course, I broke down a bit because today felt like another wasted day. I was mad that I didn't advocate for myself ahead of time and should have asked for a PFT, but she insisted that falls on them, doctor's, that's what she's there for. She was surprised none of my other docs ordered one. My chest x-ray from yesterday came back normal, as usual.

      So, I'm scheduled for my PFT on 11/8 and more bloodwork (CBC, IgE, rast). She's going to check for eosinophilic asthma. She said it has been a really rough year for asthma sufferers, esp in our area with all the rain, it's brought out spores, molds, etc. She didn't change any meds as of now, which I'm fine with. I actually felt a bit more calm and at peace leaving there. She hopes I'll get more relief once the cold really kicks in (even though it's super windy right now) and I hate the cold. I'm trying to stay positive and just take it a day at a time. Been getting attitude about it at work though from one of the managers, even though I have FMLA and I work in healthcare, you would think she'd have some compassion. 

    • Brenda Silvia-Torma

      Hi Megsmaroo, I'm glad you liked the PA and that you received compassionate care. Did she mention anything about your problems with symptoms at night?

      Brenda

    • Megsmaroo

      Brenda, 

      Nothing was specifically said about nighttime sx. This evening is particularly rough, horrible tightness, cough and I feel some rattling in my chest. I pray I'm not getting sick, that is the last thing I need. 

    • K8sMom2002

      Megan, hugs on co-workers and managers not understanding! And hugs on having to go back for another test when it could have been scheduled all on the same day. 

      I'm so glad the PA was so understanding … that makes a huge difference, and I'll bet just being heard helped you find some of that peace you experienced. 

      Please don't kick yourself for not knowing/remembering what to ask for ahead of time. It took me many goof-ups and mix-ups to get an exhaustive list of stuff to ask ahead of a doctor's appointment … and still I don't always remember to go through my checklist. 

      Saying big prayers that you aren't getting sick! Have you been able to take your this year?

    • Melissa G

      Megan, how are you feeling? Was it just a rough night or did you come down with a cold?

    • Megsmaroo

      Hey. It was just a really bad night and today was pretty bad too. This evening however, besides being exhausted, has been decent.

    • Melissa G

      So sorry that it was such a bad night but glad that you didn't come down with a cold! I hope today is better and that you are able to get some rest this weekend. 

    • Megsmaroo

      Update: still feeling pretty awful every day. Had my rast/IgE/CBC done last week. Just got a call from my pulmonologist, she said my rast and IgE levels are "through the roof", so I qualify for Xolair. Just waiting to hear back from the person in the office who takes care of the insurance side of things to get me covered. My IgE is 718. The rast levels are hard to read on my app so I put a call in to her to have her decipher those. And I still have my PFT scheduled for next Thursday, 11/8. Feeling a bit relieved for some answers, but still doesn't help me breath right now. But we're getting somewhere. 

    • Brenda Silvia-Torma

      Hi Megsmaroo, so glad you are finally getting some answers and have a goal in sight. Do you know how long it will take to get approved by insurance?  Hopefully you will be able to start that sooner versus later and will be on your way to feeling better. 

    • Megsmaroo

      I have no idea, unfortunately, when I called back, the Dr was with another patient, and I haven't heard anything since. Hopefully I'll hear something tomorrow and can get it approved soon, because my insurance is changing in January. 

    • K8sMom2002

      MegsMaroo, heard anything more on the next steps for the Xolair? I'm hoping you can get it approved for this insurance … is there a way you can begin the pre-approval process for your insurance that you'll have in January?

    • Megsmaroo

      Yes, it was. I just had my 3rd round of injections today. The first 2 rounds we're rough, but I have had better days, so it's definitely working. 😁

    • Breatheeasy

      I have been having a rough time too. Pulmo after pulmo keep saying it’s only mild. Refuse to prescribe anything but the inhalers. Inhalers don’t work now or I might be having something else than asthma. I am thinking my GERD might be flaring up and causing a cycle. I had a few attacks and then two good months and then flares happening again. 

      I feel extremely tired and weak most days and am wondering if I have an autoimmune disorder of some kind. I got all my blood work back all clear. I am thinking of going to see an endocrinologist to see if she can find something. I was supposed to meet with my allergist today for the internal tremor to see if he can order tests but I got it rescheduled because I have to see my sister off at the airport as she’s relocating to another country. 

      Does singulair make you tired and weak? That’s the only thing I’m using until I get a full asthma action plan. 

       

    • Wheezy Me

      Just saw this thread for the first time.

      Megan, I'm sorry for the hard time asthma has been giving you, and happy that you are better now with Xolair. I heard about many who had success with it. It's frustrating to deal with worsening which wasn't there before… We understand. Just hold on!

      Breatheeasy, same goes for you! Being tired could be from uncontrolled asthma (do you have nighttime symptoms that disrupt your sleep?) but you're right in getting checked for other conditions as well. Ask to be tested for iron, vitamin levels, TSH etc if you haven't already.

      I never had any side effects from singulair… stopped it just because symbicort was more effective for my asthma symptoms.

    • K8sMom2002

      MegsMaroo, so glad the Xolair is working for you!

      Breatheasy, Wheezy Me has a good point about asthma and sleep  , and I think it's super smart of you to check out other possibilities as well. My doc says that I can think of my asthma as a rock on the edge of a ledge … if there's any way to roll that rock back, even a little, then there's less of a chance that I will have a severe exacerbation. 

    • Brenda Silvia-Torma

      Breatheeasy, I agree about getting tested for multiple conditions! I'm grateful that my gyn had me get my TSH checked because I shared with her that I woke up each morning more tired than when I went to bed. It was elevated and so I was prescribed Synthroid.  

      Have you asked your allergist about your tiredness? I wondered if he/she could have some idea of the cause–if it is a side effect of the medication?

      Meg, YAY on getting the Xolair shots and cheers to feeling better after you've taken it!  So glad it is helping!!

      Brenda 

    • Breatheeasy

       No wonder I have an excaberation of my symptoms when I don’t sleep well or wake up too often in the night.

       

      I usually sleep close to 9+ hours in the night if left to sleep. But with my daughter I’m getting 7 hours. Ie after I tuck her in I take an hour to go to bed and have to be up when she wakes up(sometimes she’ll wake up and take a while to go back to sleep). Some nights I have bad sleep nights ie wake up with internal tremor so bad that I don’t go back to bed. Some nights the breathing can be an issue until the stuffiness has gone down.

      but most nights I get enough sleep. 

      I did get my vitamin profile done, thyroid done multiple times- (was kinda sure I could be hyperthyroid) but everything came back normal. I did have raised anti bodies against TPO and the doc said not to worry esp as the TSH level was within the limit. Touch wood – I’m wishing nothings wrong but not knowing is worrying me more than anything else esp as worrisome symptoms like being tired and confusion show up  some days. I will make a few appointments. I want to feel better. 

      I also keep wondering if it’s just stress. Like most of my doctors say ‘you’re too young, it’s just stress’

       

    • K8sMom2002

      Breatheeasy, it is tough when your sleep gets interrupted. What's up with your daughter that she's having trouble sleeping? 

      Stress can be a trigger — but it's funny how people get told "it's just stress," like it's a simple thing that they can fix with no problem. Nobody WANTS to be stressed, and stress is a complicated thing.

      Are there things that help you relax? Are there things that can help you sleep? You could consider it an experiment to see if it did help your asthma.

    • Breatheeasy

      Oh well my daughter is special needs. She is mostly mute. So I have to figure out what she needs when she’s up in the night. Sometimes she’ll just be up playing before she goes back to bed after 2 hours. It did mess my sleep patterns which I am trying to get back together again. 

    • Melissa G

      Breatheeasy, it is very difficult getting our sleep patterns back to normal once they have been messed with! My youngest has a lot of medical issues, and we will through times where I am up very late, and don't sleep a lot. Then all of a sudden she starts sleeping again. I always have a hard time getting back into a routine. 

    • Breatheeasy

      I use an antihistamine if it’s too tough to fall asleep. But it scares me that I won’t be able to wake up if I need to wake up when my Daughter wakes up. And it makes me so sleepy the next day. 

    • Mom2boys

      Megamaroo, There is a condition that if you have asthma and nasal polyps you are more likely to be allergic to aspirin (called Samter’s triad). Could you have been taking aspirin during your flare and that kept you flaring?  Just a little known combination that no one above mentioned so I wondered if you knew. It was the first thing I thought of when I saw in your profile that you have nasal polyps. SO glad the Xolair is helping. 

    • Melissa G

      Welcome to AAFA, Mom2Boys!  Thank you for sharing about "Samter's Triad". 

      How long have you been dealing with allergies/asthma?

    • K8sMom2002
      Breatheeasy posted:

      I use an antihistamine if it’s too tough to fall asleep. But it scares me that I won’t be able to wake up if I need to wake up when my Daughter wakes up. And it makes me so sleepy the next day. 

      Breatheeasy, do you use a baby monitor still? I sleep very soundly and once I get to sleep, it's super hard for me to wake up.

      I kid you not, when my DD would wake as a baby, my DH would have to shake me awake. So we got a baby monitor and put it near my side of the bed. That way, it was loud enough for me to hear her if she was awake and needed me. 

      I can understand not wanting to take medication that might make it hard to wake up. What things make it tough for you to fall asleep? 

    • K8sMom2002

      Megan, how often do you have a Xolair injection? Once a month or twice a month? Was this last one any easier?

    • Breatheeasy
      K8sMom2002 posted:
      Breatheeasy posted:

      I use an antihistamine if it’s too tough to fall asleep. But it scares me that I won’t be able to wake up if I need to wake up when my Daughter wakes up. And it makes me so sleepy the next day. 

      Breatheeasy, do you use a baby monitor still? I sleep very soundly and once I get to sleep, it's super hard for me to wake up.

      I kid you not, when my DD would wake as a baby, my DH would have to shake me awake. So we got a baby monitor and put it near my side of the bed. That way, it was loud enough for me to hear her if she was awake and needed me. 

      I can understand not wanting to take medication that might make it hard to wake up. What things make it tough for you to fall asleep? 

      Ugh a lot of things now. I am going thru a divorce and have been trying to relocate and find a new job along with all of what has been going on. It just one of those times when have so much going on and are so confused. 

    • Mom2boys
      Melissa G posted:

      Welcome to AAFA, Mom2Boys!  Thank you for sharing about "Samter's Triad". 

      How long have you been dealing with allergies/asthma?

      I have had allergies and asthma for many years. My 23 year old son has severe persistent asthma, many environmental allergies, and anaphylactic food allergies. I made a point to learn a lot about my son’s conditions and am now in the health care field and have learned lots more/different tidbits. 

      Thanks for the welcome. 

    • Melissa G

      Mom2boys, I have often thought when my youngest gets older about getting into the health care field. I have also learned so much from researching things for my dd. 

      Do you know about  It is a division of AAFA. 

    • Shea

      @Megsmaroo just curious if youve been allergy tested, especially for your chinchilla?– I developed some serious issues from being allergic to pets that caused high IgE and eosinophils. Is it kept outside– they're super cute I just looked them up.. If it werent for my allergies to everything furry Id want one!