Back to the inhaler drawing board because Bre... - COPD Friends

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Back to the inhaler drawing board because Breo sent me to the ER after the 1st use

Crackerjack4u
Crackerjack4u

I finally saw a Pulmonologist on Friday for my recently diagnosed COPD. He said I without a doubt have COPD, but suspects I have had also untreated Asthma for years which has lead to the COPD, so he switched me from the Anoro inhaler my GP had put me on, to Breo. I have a methacholine challenge test on 7/6/18 to verify for sure on the Asthma, but having not admitted the true extent of my breathing difficulty for years, I'm pretty sure what the test is going to show, but only time will tell.

I used the Breo for the 1st time yesterday 6/30/18 and it appeared to open my airways much better than the Anoro had been doing, so I was pleased with that aspect of it.

It was actually several hours later that my scary issues began. Without any warning at all I started shaking, sweating, started having chest pain, had shortness of breath, it was like I had drank 5 pots of pure caffeine and they had all decided to kick in at the same time. It felt like my heart was going to pound and race right out of my chest, my blood pressure (which is normally low) increased too 200/120, one of my arms and one side of my face went numb. Folks, I kid you not, I literally felt like I was dying, so after 3 nitroglycerin tablets didn't relieve the chest pain, etc. (although the nitro did help lower the sky high blood pressure some), off to ER I headed. All the tests at the ER appeared to be negative on it being related to actual heart or breathing issues that were causing these particular symptoms, and all signs pointed to me having a very bad reaction to Breo. Also at ER they took my temperature when I arrived and it was 98.1 about 10 mins later another girl came in and took it again and it was then 99.4 which I thought was very odd, but after reading some Breo reviews several people noted running a low grade temp when they were using it, so I guess that must have been what was going on with me too? These symptoms in all total lasted about 3 very loooong and scary hours, and then finally as oddly as they had started they started to go away.

After I was released from ER last night I did have multiple muscle spasms in my legs the entire rest of the night. Today I feel absolutely horrible from last night's ordeal. My entire body hurts, I feel like a block of concrete is sitting on my chest and lungs, I have pain and tightness between my shoulder blades, in my shoulders and back, my legs are super sore from the muscle spasms in them, and the one arm, and side of my face that was numb last night still feels numb today, but thankfully to a much lesser degree. Anyway Breo is apparently not going to work for me, so I'm wondering what the Dr. will decide to put me on next. I read in the reviews that a lot of people who had issues with Breo were able to take Symbicort successfully and that it seemed to help their breathing issues

Do you all have any opinions on Symbicort or any other long acting inhaler with steroids in it for both COPD and Asthma?

Thanks for listening to me whine, it was just really scary and not something I want to repeat ever again. Have a nice day!!

11 Replies

That would scare me to death , I have COPD , and asthma . I have been on Advair discus for years , and it works for me , I use a rescue inhaler if needed , I'm from the old school 'if it 'ain't' broke don't fix it ' so I will stick with Advair ..Hope you find the right med .

Thanks Sally. I'm on a rescue inhaler too, and it seems to work ok (not that I have anything else to compare it to), but it makes my mouth, throat, and lungs burn and feel raw when I have to use it multiple times in a day. (But I found out the other night that swishing approx. 4 Tablespoons of Malanta, Mylox, etc. Liquid Antacid (I use the generic), around in my mouth 1 Tablespoon at a time and then slowly swallowing it coats those areas and immediately gets rid of that burning raw feeling, so that's what I'm doing for now until I can figure out if there's something else that works as well, and is more appropriate to use.

I have several phone calls to make to various doctors in just a few hours following my ER trip. I've felt absolutely horrible all day today, all that mess really took a toll on my body, and my other medical issues, so I'm hoping I feel at least some better later today.

Not only do I have to try to find an inhaler that doesn't make me feel like I'm dying, I have to follow up with my Cardiologist because of my chest pain, and numbness, my Pulmonologist because of the entire ordeal, and my shortness of breath, and my GP because of the blood pressure issues, all because I went to the ER and because of Breo. Seriously, there's no wonder why I never have any money, it all goes to doctors lol. Thank you again and have a nice night.

I can well imagine that must have been scary. Good you are back home and hopefully after a couple of days of rest you will be back to normal. Are you sure you need a steroid as they are trying to use them a lot less but in some cases they are necessary? I believe there are several people here that are using Instiolto or Inspiolto or Spiolto, depending on the country you are in and are finding it quite helpful but it does not have a steroid component.

Thank you jackdup. The Pulmony said that because he does think I have had untreated Asthma for years, and the way my lungs sound, etc. that I'd need to be on a steroid inhaler. I do know the Breo when I used it did great at opening my airway, it did a lot better than the Anoro- without the steroid. Now if I can find one that I can use without having a stupid reaction to it. I'm allergic to a lot of medications, and the only thing longer than my actual med list, is my list of drug allergies, so it's going to probably take some trial and error to find one I can actually use. Thank you for the info and have a nice night.

Hi Jack, its taken me 2 years and about 10+ different inhalers, until I have found one that doesn't have bad side effects on me.

Spiriva Respimat mist works for me, but yours is such a scary violent reaction. I guess all these drugs have some side effects that affect people in different ways, its just finding one that you can tolerate and get good benefit from.

People must realise its trial and error when your doctor prescribes these drugs and that you may get a reaction to them. I am lucky that I have a doctor and respiratory nurse that listens to my concerns.

You can download a list of inhalers, I got mine from NHS Greater Glasgow and Clyde website, "Respiratory Inhaler Identification Chart", it breaks them down into their groups, I hope this helps.

I wish you luck in finding an inhaler that works for you.

Kind regards

Steve.

Don't forget to use a mouthwash or rinse your mouth out after using your inhaler every time, it stops you swallowing the drug and it affecting your stomach and throat, they can also rot your teeth.

Steve.

Thank you for the info Steve. I did rinse my mouth out well after using it for the 1st time, but even my Ventolin makes my mouth and throat really sore and I get this annoying little cough and feel like I constantly need to clear my throat?

Well Folks, Things got a lot scarier this morning when I contacted the Pulmonologist and he said he does NOT think the reaction was from the Breo (he thinks it is Cardiac related), and wants me to use the Breo inhaler again to see if the same thing happens, so I'm now shaking in my boots scared to death to use it again. I might get enough courage up sometime today to use it again, but lol I ain't doing it just yet. Lordy, Lordy, whew I'm so dreading this. LOL I think this might be one of those Lets Don't and Say we Did type things. LOL Just kidding-sort of.

I've still not used the Breo again, still scared. (See comment above for those details). I'm for sure holding off until in the morning (if even then) as to not end up in ER again in the middle of the night again just in case it happens again, but I did go buy some Benadryl to try to counter act any issues that might occur again. Just the anxiety of thinking I could possibly go through all that again is making me sick.

Well, I used the Breo inhaler 1st thing when I woke up this morning so I wouldn't chicken out again. I didn't do an overly long or extremely deep inhalation on it to try to only take in like a 1/2-3/4th of a puff lol, to try to hopefully decrease or eliminate the side effects, if that's even possible.

My blood pressure elevated only slightly this time and remained within a normal and safe range, my pulse rate remained within normal limits, I did have the pounding/ racy heart, and nervous feeling which caused some slight chest pain, sweating, a pretty good headache, slight left side face/left arm numbness, and after it being in my system a few hours-just like the other night, I felt very, very tired. Thankfully though none of the symptoms I experienced today were anywhere near the severity I had them the other night. Also today my mouth, throat, and lungs did NOT feel raw either, but today, several hours after the inhalation, my stomach was burning where it wasn't the other night.

My thing is I used the Breo again to appease the Dr plus to see for myself if the issues would again occur. If it's possible then I may have cut the dosage I inhaled by not breathing it in as long, or as deep as before? My negative symptoms from using it occurred again today, but were less severe than after the 1st time, BUT I still again ended up having to take a pain pill, a nerve pill, Aleve, and (1 nitro-the other night I took all those same things, but had to take 3 nitros instead of 1). I decide to Not take my Benadry today because I needed to see where the symptoms were going to stop on their own for my own reference on how this medication affects me. Had the symptoms gotten as bad as they did the other night I would have taken the Benadryl though. (Although it might not even help)?

Although it did again seem to help my breathing and help open up my airways better, I still felt very UNWELL after using it again, just like I felt the other night. I don't know if the symptoms will decrease over time or not, but I do know if they don't then this is not something I'm willing to, nor should my doctor expect me to go through everyday just to remain on a particular inhaler. I'm still thinking that Breo isn't going to work for me, and it's going to cause me more problems than the benefits it supplies. I feel bad enough without being on something that adds even more symptoms to my already long daily list. Does anyone know if the symptoms get less over time with Breo or not? Thanks, and Have a Nice Night.

I actually used the inhaler again yesterday taking a larger inhalation than the day before, and I actually did pretty good. I didn't seem to get the shakiness, headache, chest tightness, or other symptoms near as badly. I did have a few symptoms but for the most part they were almost non-existent, and I felt a lot better than the past 2 x's I had used it.

I used it again this morning and took the "normal" long inhalation, and so far other than feeling a little distant shakiness like way off in the background of my body, I've had no other symptoms so far, so I'm keeping my fingers crossed that I'm getting use to the steroids, and will be able to use it with little to no adverse symptoms from it, but only time will tell.

I do know as unwell as it was originally making me feel, and all the crazy symptoms I was experiencing that there was going to be No Way I was going to be able to use it much longer.

Well folks, I had my Methacholine Challenge Test done this morning and I do in fact have asthma in addition to my COPD, so I guess the doctor was correct in his assessment/assumption. That test was Brutal, after blowing and blowing for as long as she needed me to, I'd start coughing and wheezing, every single time I had to fight myself to not throw up, it was Horrible. I'm not sure of the severity of my Asthma yet, and won't know that until Aug 2nd when I go back to see my Pulmony doctor. Seriously though I am so sick and tired of being so sick and tired and it seems like when one thing happens it has a dominoes effect and my entire body is just falling apart piece by piece. I hope everybody is doing well out there, it's been so hot here that it makes my breathing even more difficult. Have a Nice Day!!!

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