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Changing from Breo to Symbicort- insight? Experiences? Advice?

I've only found this site a short time ago, but everyone has been so helpful and supportive. I am sorry for repeating my story for those of you who have already read it (you could skim to the end about the latest change in meds). 

So, on about June 24th, I realized that I was probably starting to have an asthma reaction to a virus (chest cold?). This was 2 days before leaving for a road trip to Yellowstone, from Portland, Oregon. At Urgent Care before we left, the X-ray did not show pneumonia, so he gave me codeine/robitussin mix and said I could us my inhaler as well. Over the 12 day trip I ended up in one ER (asthma exacerbation)- prednisone and ventolin prescribed. The coughing, trouble breathing and sleeping continued through the whole 12 day trip. I had my meds increased by phone with my PCP- higher dose prednisone, singulair, ventolin. I went to Urgent Care in Yellowstone twice (they were very nice and there were elk grazing right outside the door)- I could hardly talk from my constant asthma cough. She added Flovent to everything else and gave me a Z-pack, just in case the previous two X-rays had missed an infection. We got back to Portland, I was advised to go to the ER and make sure it wasn't a PE or heart problem. I did that and had a breathing treatment, tests, another X-ray and unfortunately a panic attack (couldn't breathe and my hands started tingling)- meds for that. No heart or PE issues.

Then to the PCP who confirmed as others said that it was asthma, just way worse than I'd ever had before. My first time with mild asthma was at age 36, I am 47 now. The PCP talked with us for a long time and prescribed Prilosec, continue Flovent, ventolin, nebulizer usage. When he said he didn't know what it was and it could continue like this for awhile I started to cry, second panic attack. Through tears I asked, when will I be able to breathe again and do stuff?! He said he didn't know, but would put in an urgent referral for pulmonologist. Saw pulmonologist 1 week later. She came in and had heard me coughing from the hall. She said, yep asthma cough- that doesn't sound fun. We need to get that under control. She asked lots of questions, but didn't do any tests. She said to stop Flovent and start Breo and continue Prilosec and ventolin as needed every four hours. I haven't felt much improvement.

After 5 days I let them know I wasn't feeling improvement. I am still needing the albuterol every 4 hours- I actually need it at about 3 hours, but I wait until 4. I am still having sleeping problems. Cough a ton when I lay down. Yesterday, I woke myself up in the middle of the night coughing and choking (scared me), coughing/ short of breath with exertion and strong smells. They told me I had to wait the full 2 weeks. This morning is two weeks. I got a message saying to switch to Symbicort. They didn't even ask me if I had improved on the Breo. I don't think I have improved enough to say it's working, but weird they didn't even ask- if they had me wait 2 weeks. 

Now I'm on to Symbicort. I'm always nervous trying a new med. I would love to know people's experience's -good and bad- with it. Any advice on how to take it, side effects, problems, issues switching from Breo to Symbicort. I also take other meds for HRT and anxiety/depression. I will definitely talk to the pharmacist when I pick it up today, too. Thank you so much for your support and help with this, another med! Sorry for the long post and my anxiety and worry, it's hard to not really be getting better after 4 1/2 weeks.

Thanks!!!

 

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  • K8sMom2002

    Hugs on the continued struggles, Shadowcat!

    It sounds like you're concerned that they switched you off the Symbicort and onto the Breo too soon? Could you call back and ask your doc how long it would take for you to see improvements on both meds?

    I hear you on how it is to struggle after a bad exacerbation. It does take awhile, but it's always nice to know from your doctor when you SHOULD be getting better. Do you think you could arrange for a telephone conversation or an earlier appointment?

  • Shadowcat04

    Thanks, Cynthia. Yes, I was wondering if it was the right time to switch, but I really didn't see much improvement on the Breo anyway. 

    I just got back from an appointment with my gyn, who is probably the best doctor I have.  I was there on unrelated issues, but I was coughing and short of breath when he came in for the appointment, so the asthma flare was the topic of conversation. That asthma reaction was because it'd been 3 hours since albuterol, it was 96 degrees outside and I walked across the parking lot (no big deal 7 weeks ago). This gyn calls you at home to answer questions. When I had a complication after a hysterectomy last summer and called him on a Sunday, he worked around the time we needed to drop my daughter at camp and met us at the hospital to do the surgery himself.

    He couldn't believe that I was coughing like this and having trouble sleeping and not improving and getting very little attention from my doctors. He asked me lots of questions, listened to my lungs, I was coughing like crazy and having a hard time talking and breathing. He asked me about allergies and allergy testing- nope, I've never had that. So, my gyn sits down with me with his laptop and we look at allergy doctors and find one nearby that I've heard of that takes my insurance and he hands me his laptop and has me sign up for an appointment on-line. He took over an hour with me and I left with a plan for doing something more to see what is going on with me. I wish all doctors were like my gyn. 

  • K8sMom2002

    Oh, yay! I am SO glad! I'm really hopeful that this new doc will help and will be more like your gyn!

  • Shadowcat04

    Yes, I am hopeful as well. The new doctor’s office even called this morning and offered to see me sooner after hearing my symptoms! That’s a change!

    I also went to my MHNP (my therapist and mental health medication prescriber) today and updated her on everything that is going on with this crazy new asthma flare. She was very understanding and we came up with a plan to address the increased anxiety that I’ve been having and has been making the asthma worse. 

    I am feeling more hopeful that this asthma flare might get figured out. As far as starting the Symbicort, my stomach is a little off and my head hurts some. No great improvement, but it’s only been one day. 

  • Shadowcat04

    I will see her next Wednesday morning. I could’ve gotten in Monday morning, but I made arrangements to take my kids to go visit my parents at the beach this weekend. Wednesday was the earliest I could do. 

  • K8sMom2002

    Shadowcat, can I just say how impressed I am with you using all the resources at your fingertips? I think it's great that you are making a point to integrate ALL your care and get all your providers on the same page!

  • Melissa G

    Shadowcat, I would have done the same thing! I hope you guys have an amazing time at the beach this weekend! You deserve some relaxation and fun! 

  • Shadowcat04

    Thank you everyone. Unfortunately, I think I am now experiencing side effects from the Symbicort. Headache, nausea, almost diarrhea. And, still coughing. New med and now I feel worse! No DH to buffer me from my mom. Feeling sorry for myself, sigh. Sorry. 

  • Kathy P

    Hugs – so sorry the new med seems to be a bust. Have you called the doc to ask about what to do? 

  • Shadowcat04

    I did leave the doctor a message. I don’t expect much help. I think she’ll tell me to wait it out for two weeks. The coughing almost seems worse with the Symbicort. My stomach is still off, too. And, I’m at my parents and not telling my mom about the asthma. She has memory issues and she worries a lot. I am needing my rescue inhaler about every 3 hours, so having to wait the last hour. 

  • K8sMom2002

    Oh, no … that sounds really tough. I'm glad you reached out to the doc. Do you think that it could be that you may be around a trigger that you don't have at home? 

    One other thing … sometimes initial side effects will fade. Don't mean to give you any false hope, but it's a consideration. Still, if you're having side effects PLUS it doesn't seem to be helping, then it's definitely time to reach out to your doc like you have. 

    I hope you've heard something encouraging today!

  • LK

    Shadowcat, Forgive me if you have already answered this but, have you called a pharmacist to ask about the side effects?  It is something to do while you are awaiting your doctor's reply.  Some doctor's offices have a triage nurse who will answer questions that are urgent if you need a reply sooner than your doctor can get back to you.  As Cynthia, K8SMOM2002, already said sometimes side effects fade but a registered pharmacist should be able to give you some peace of mind as to whether having this many side effects is a sign you should discontinue the new med or just ask your doctor again.  Hope you are feeling better!! 

    I understand not wanting to tell your mother.  My mother worries over everthing so I try my best to NOT tell her about even minor problems as she would just have more to fret over.

  • Shadowcat04

    I hadn’t thought of the pharmacist. The pharmacist I got this medicine from was not very helpful. I wish I had gotten it from Costco- that pharmacist is great. 

    I appreciate everyone’s encouragement- I think I’m starting to feel depressed and discouraged and tired. It feels like this is going on forever. I’m trying to be strong for everyone and I just want to go home and sleep and have someone wave a magic wand and make things better. Being a self-advocate is a lot of work and full of self-doubt, anxiety and fear. 

    I get to go home tomorrow, I’m taking my anti- anxiety meds, I have my new allergy/asthma doctor appt. on Wednesday and it’s 2 hours- so I think it’ll be more comprehensive. I’m nervous about upsetting the other doctors. I hope the doctor can help smooth that over. 

    Thanks all. 

  • LK

    Shadowcat,  Please know that you can call any pharmacist with a question.  You don't have to only call the store where you got the prescription.  Please let us know how you are doing!

    I understand your being nervous that your other doctors may be peeved that you are seeing a new doctor but if you tell them that you are just trying to get better and feel that what you have been doing isn't helping enough then they should understand.

  • K8sMom2002

    Hugs, hugs, hugs … Lisa has some really great advice. The pharmacist can definitely help, and even if you got it at another pharmacy, your "home" pharmacy could help as well. I've had to do that — we got meds filled at another pharmacy on the way home from a hospital stay in another town, and then I had questions when I got home. 

    Hugs, too, on feeling so discouraged. I'm really hoping that your new allergist will help, and it's encouraging to know that it's going to be a more comprehensive visit. 

    We're here for you — cheesy, but true! 

  • Melissa G

    Shadowcat, thinking of you today as you travel home. I hope you have a better day today and an awesome doctor's appt tomorrow! 

  • Shadowcat04

    The doctor responded. She wants me to stop the Symbicort and increase Prilosec to 2 times a day. She sent referral to ENT to check out vocal chord dysfunction. She said the inhalers don’t seem to be working and the prednisone didn’t work, so maybe it’s vcd?! I looked that up- I have some of those symptoms, but some not. I feel like she gave up on me and sent me on. Is she saying she doesn’t think it’s asthma now? She never even did any tests. 

    So glad I have an appointment with a new doctor tomorrow. Trying to not fall into a hole of depression and just give up  

     

  • Melissa G

    Oh my Shadowcat, I am very glad you are seeing a new doctor tomorrow! Please let us know how the appt goes. 

  • LK

    Shadowcat,  Please don't give up!!  It is so very frustrating when the doctors are trying to diagnose our conditions.  Get through the new doctor appointment tomorrow and after that you will hopefully have a better understanding of everything that is going on with you.  One day at a time.  Sorry I don't remember what kind of doctor you are seeing tomorrow.  Allergist?  Pulmonary physician?  Or ??

  • Shadowcat04

    Thanks, LK and Melissa. Doc tomorrow is an allergy/ asthma doctor at an allergy/ asthma/ dermatology clinic. 

  • LK

    Shadowcat,  I will keep you in my prayers that your doctor will figure out the best way to help you!    Sending many hugs for you!  You will make it and it will get better!  Sometimes the road is rocky but there is a light at the end of the tunnel!

  • Kathy P

    I think it's good that the doc wants to rule out other conditions since the inhaler and pred are not working. I don't think that's a sign she's giving up. There are other conditions that can look like asthma and it's important to get that differential diagnosis. This site has some info –

  • K8sMom2002

    what others have said … So glad you had that appointment today — I hope it went well!

    Sometimes, when docs are looking at another diagnosis, it's not a question of either/or, but both/and. So it's really important to pick up rocks and look under them, just to make sure, you know? Because one can make the other harder to treat.

    Is the prednisone helping? :hugs:

  • Shadowcat04

    I had my appointment today with my new/latest doctor, an allergy/ asthma specialist. It was a 2 hour appt. – they took a detailed history, asked lots of questions. This doctor also brought up the vocal chord dysfunction idea. She wasn’t sure if it was simply asthma. But, after she said this, she said that now we would do some objective tests to see what they show. 

    I did a spirometry test without albuterol and then with albuterol- there was an 18-19% improvement with the albuterol, she said.  Then, I did an exercise test- 4 minutes on a treadmill of steady exercise- pulsox 99 at start, coughing started during, pulsox 97 at end. I guess that shows the asthma is not well- controlled. I was given oxygen after that for about 15 minutes, that stopped the coughing. Arm prick allergy testing for about 25-30 typical Oregon allergens- I wasn’t allergic to any of them. 

    She said that she thinks I do have asthma, given the test results and also that I have had reactions to high altitude in the past. She thinks I could still have VCD or something else going on, too, but we’ll worry about that later. 

    She started me on 2 puffs twice a day of QVar, continue albuterol as needed, Prilosec before bfast and dinner and chart peak flow meter daily in the AM.  She wants to see me in 2 weeks. The pulmonologist didn’t want to see me back for 3 months! I’m feeling better about things.  Physically, I’m exhausted and want to sleep and get back to normal- emotionally, I feel more hopeful.

    Thank you for everyone’s support through this crazy ordeal!

     

     

  • Kathy P

    Hugs – sounds like it was a good appointment and some progress on figuring things out! I'm sorry that it IS asthma, but knowledge is power and means finding the best treatment.

  • K8sMom2002

    Hope you got some rest and that you are waking up to a brand new day today!

    Like Kathy said, knowledge is power. I love the fact that your allergist was so thorough with the testing. It sounds like she checked off all the boxes in a very systematic way. 

    Did she give you any guidance for pre-treatment before exercising? It sounds like the treadmill test definitely stirred things up … my doc has diagnosed me with exercise induced bronchoconstriction (exercise induced asthma) and has given me a pre-treatment plan. 

  • Brenda Silvia-Torma
    LK posted:

    Shadowcat,  Please know that you can call any pharmacist with a question.  You don't have to only call the store where you got the prescription.  Please let us know how you are doing!

    I understand your being nervous that your other doctors may be peeved that you are seeing a new doctor but if you tell them that you are just trying to get better and feel that what you have been doing isn't helping enough then they should understand.

    Shadowcat, I totally agree with LK on both topics. Calling the Costco pharmacist might give you peace of mind and the necessary knowledge from a person you trust (who will give you time for your questions).

    If you look at the situation solely from your healthcare team's perspective, I understand your nervousness with bringing another doc on board. However, you are the one that is living with your symptoms every day–you are the expert on yourself. 

    It sounds like you're doing what you need to do to keep everyone in the loop and to find answers. I know it's exhausting to be your own advocate, but you are doing great!!  

  • LK

    Shadowcat,  Sounds like you saw a good doctor today.  I am so grateful that your new doctor took the time with you, that in and of itself is such a help.

    Hope you are able to get some much-needed rest!

  • Melissa G

    Shadowcat, that sounds like a great appt! I hope you have been able to get some rest and that the new inhaler helps.

  • Shadowcat04

    Thanks. 

    I do think my breathing is better. Still some coughing, still using albuterol a few times a day. Two days of qvar. Not feeling well today- nausea, headache. Side effects? Exhaustion? I don’t know.

    I’m wondering if the Breo and Symbicort actually did help, it was just gradual. Maybe the flare is ending.?! I walked a short walk with my DH and did start coughing and coughed when I got up today and a couple times today- but better than a few days ago. 

  • Melissa G

    shadowcat, very glad to hear you are seeing signs of improvement. As for the exhaustion, since you have been having asthma issues, that in of it self will cause exhaustion. the more you body has to work to breathe, the more tired you will be. I hope you have a great weekend. 

  • LK

    Shadowcat,  So good to hear that you are breathing better!!  I know what you mean when you say it is hard to know if some of the meds are helping gradually.  For me, when I am on a new med rarely do I have an immediate improvement.  Usually it is gradual and sometimes hard for me to see a difference unless I look back several weeks or more and can then tell I am breathing better or coughing less.  Hope you continue feeling better!

  • Shadowcat04

    Yes and no. Thanks for asking, Melissa. The peak flow meter reading was 380 this morning. 330 before I started the Qvar and the highest I could get in the Park- 6 weeks ago was 250. I think all the steroids are finally helping or the Qvar is helping, with the breathing. Now I think I’m dealing with side effects- irritable, extremely tired, unmotivated, nausea and headaches. My DH, I think is growing weary of my lack of help and motivation. I feel near tears frequently. I’ve cried in all my doctors’ appointments I think. Can we say emotional mess?  Keep forgetting to take lorazepam, as my therapist prescribed. Oops.

    still some coughing,but using inhaler maybe 1-2 times a day instead of 4-5 times a day. So, all that to say, improvements yes. Thanks for listening. Not many to talk to in my family or among my friends.  This forum has really, really helped me. 

  • Melissa G

    Aaww, Shadowcat, I am sorry you have had other struggles. How are you sleeping? I know when I am exhausted I am more "emotional", and I do not mean that in a derogatory way. I will be more on edge and like you, in tears more often. The lorazepam may help you relax and take the edge off too. My daughter takes diazepam for muscle spasms and when she is having a rough day it helps her to relax and be able to relax more. 

  • LK

    Hi Shadowcat!    

    It sounds like you are improving a little bit!  When I am on pred I don't sleep and that in itself makes me on the verge of tears at the drop of a hat.  I also will bite off anyone's head at the least provocation.    For all the good some meds do, it is still hard to handle the side effects.  Just know that you are not alone!  

    That is very good news that you are needing your inhaler less frequently and your PF numbers are better!!  Little steps in the right direction will get you there! 

  • K8sMom2002

    Hugs … for many of us, pred is a two-edged sword. You need it to get over the worst of flares, but the side effects …

    I'm really hopeful that as you work with this great doctor you've found, you'll be able to taper down from the prednisone and in the future more often be able to prevent really bad flares like this.

    It's not always possible — people here can tell you that they try their mightiest and they still have flare ups. But I love AAFA's focus on how knowledge equals power … and sometimes it's a lot of little things that can help: flu shots, pneumonia shots, strict avoidance of triggers — and diligence because it took me a WHILE to figure out many of my triggers.

    Until then, just let your DH know that you're gonna need some extra TLC. You can explain that we all can identify with this little guy …

  • Shadowcat04

    That’s great, Cynthia! I see the new doctor next week again- it’ll be good to see what she thinks about my improvements. 

    We are going up to my family’s cabin for the weekend and my kids are each bringing a friend. If all goes well, that’s a very relaxing, calm place. No TV, no cell reception. I’ll be sure to bring my inhalers and nebulizer. There have been wildfires, but they are pretty far away and the wind has been blowing the smoke in the opposite direction. My main fear is my energy- but, I have a few more days to rest up. 

    Thanks for all the great advice!

  • Melissa G

    Cynthia, that was my day yesterday…. my poor dh had no idea what he was coming home too

  • Kathy P

    I've had to explain prednisone-rage to my dh as well. There was one time I bit his head off and he was like "whoa!" Yeah, fair warning!

    Shadowcat for a relaxing time at the cabin.

    Do you have a mask  you can wear if the smoke is bad? I'm in the Silicon Valley and sometimes the smoke is settled into the valley and sometimes the offshore winds blow it out. We were up in the hills on Saturday and could see the layer of smoke just hanging through the valley. But within a couple of hours, most had blown out. But I was still feeling the effects – coughing, mucus in my lungs.

  • Shadowcat04

    I’m sorry to hear that Melissa. I, also, feel like I am an emotional time bomb. It’s also getting close to the start of school which is a huge stressor for me, even when I’m feeling healthy, and this year I have a new principal and teaching partner. Maybe we aren’t as bad as we think?

  • K8sMom2002

    Shadowcat, he start of a new school year with a new principal AND a new teaching partner would be stressful even without adding in feeling bad and the prednisone. I'm so glad you've got a relaxing unplugged break! 

    I think self-forgiveness goes a long way, and also letting people know ahead of time that things are kind of tough. It's not an excuse or a license to treat people badly, but could you approach it with, "Hey, can you help me recognize when I'm beginning to go off the rails? A code word? A signal?"

    And then there's my rule of thumb — each of us has an adaptability tank, where our "fuel" for negotiating our way through changes and stressors is stored. If we use it up at a faster clip because we're also battling asthma or exhaustion or poor sleep, it makes it so much easier for us to lose it with folks.

    So I've tried to learn myself and recognize when my adaptability tank is on fumes (preferably long before then, but any self awareness is good!). When I know I'm tired or sick or stressed, I try to make it a point to say:

    So can you put some things in place ahead of time? Make sure you have a good, easy plan for meals those first few days and weeks? Maybe send out your clothes to be washed at the dry cleaners (most dry cleaners also offer regular laundry service)? Ask your family for some help ahead of time? And make sure you get extra rest?

  • Melissa G

    I normally try to tell my family that I am "struggling" or "having a rough day", my kids typically will help out more or just stay out of my way where as my dh tends to "pick" on me more. Not sure why…

  • LK

    Cynthia,  As usual you have such great ideas!

    Oh, Melissa, that just plain stinks that your DH picks on you more then!!  I am so sorry he does that!  

    In years past I have had to specifically say to my DH – "I will not be treated that way."  Sometimes he has no clue what he has done but at least I have done what I can and some of the time it has helped.

  • LK

    I say I talked with him but try as he may, he doesn't really get it either.  He is a good man and has many sterling qualities but there are times . . .