Horrible COPD weekend: Hi folks, it's been... - COPD Friends

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Horrible COPD weekend

Crackerjack4u profile image

Hi folks, it's been raining here for what seems like an eternity and I know the rain has my fibro, swelling, pain all flared up, but this weekend has been horrible also on my breathing. I don't know if the weather, the swelling or what but I've had the hardest time catching my breath this weekend and have had to use my Ventolin Inhaler multiple times. It got so bad at one point that I considered going to ER, and trust me for me to even consider going there I had to be in bad shape.

Everyone on my first post said that I really need to be referred to a pulmonologist, and be on a long acting inhaler and other meds, along with the Ventolin inhaler because being a COPD newbie this will probably get much worse very quickly, and I think this weekend with just the tip of the iceberg on what's to come, and I didn't like it one bit.

Can you all please tell me what other inhalers and other respiratory medications you all are taking so I know where to start. My GP is still leaning towards adding Anoro inhaler, but the cost is going to be very expensive even with my insurance co-pay so I'll definently be looking into possible prescription assistance programs to help pay for it if that's what he decides to put me on. I've also not gotten the pulmonologist referral yet but will try to do that very soon, lol my dear GP has been stuck filing out tons of paperwork for me for my disability update for the past couple weeks, so I didn't want to add anything else to his already full plate.

I'm actually hoping he puts me on an inhaler that's a little less costly than the Anoro, but I for sure want to be on a long acting inhaler that's also going to work well too because this weekend with me not being able to breath well was really scary, so I will go on the Anoro if you all say it usually works the best.

Any suggestions and info is appreciated. Thank you and Have a Wonderful Day!!!

17 Replies

It's past midnight here, but I will try and get back to you tomorrow Crackerjack4u!! Maybe at the latest on Thursday or Friday.

Thanks hun

So, there are many medications you can use. I use a nebulizer with Ipratropium Bromide and Albuterol Sulfate. It works pretty well. Here are additional medications: Inhalers: Bevespi (It's pretty new), Stiolto Respimat, of course Ventolin, Anoro never really did anything for me. You can of course take Prednisone (it's not that great for you, but it helps a lot), and there is Citalopram to help with Depression, etc.

Also, with regard to expenses: Most of what I have listed above will help with your prescription for a year and most are free. Just go to their websites and request help. They will issue you a coupon that you give to the pharmacy. Are you on medicare yet?

It will almost take care of most of these medications for either a minimum price or free!! If I think of anything else I'll let you know Cracker!!!

Thank You bpitt-01. Yes I've been on a Medicare advantage plan for many years now as I was already 100% disabled due to many, many, many, more medical issues prior to the COPD diagnoses. Have a nice day and thank you for the info.

What is the actual name of the Nebulizer that you're on? Are those ingredients a Generic for Combivent or some other name Nebulizer? Just curious what the doc writes on your script when he fill it for you. Do you also go through that All Day Chemist place too?

I am on spirits and Brel inhalers with ventolin for emergency inhaler they seem to be keeping things under control but I’m afraid they are very expensive. I am lucky that I have good insurance but I keep on hearing that pharmacutal companies will help you with costs. I think you really need a pulmonologist they can help with things like that. Wishing you good luck

Crackerjack4u profile image
Crackerjack4u in reply to Snop67

Thank you Snop67 yes I suspect all of them are going to be pretty costly. I've been on prescription assistant programs in the past for other expensive meds so hopefully I'll find a good program for my inhalers too.

There is so much I want to say to you but don't want to upset you or piss you off.

#1 its nice your being considerate of your doctor's time. How about your time? That was not a good time you had this weekend. And the longer the delay getting proper medication and treatment then the shorter time you have left. COPD is not curable so you want to get on it and get it slowed down. Left untreated it can cut years off your life.

#2 Why is he just "thinking" about Anoro? He either needs to get you on it or get off the pot. All COPD maintenance meds cost about the same so read below for some other options on paying. Right now he has you on a rescue inhaler which is not rescuing you because of the possible side effects so your not taking it as you should. But those side effects also could because your not getting enough oxygen. Or an interaction with other meds your taking. Tell the doctor of this.

#3 He needs to call for an overnight oxygen test which is simply a wrist band your insurance sends you and you wear while you sleep in your own home. Should be covered 100%. They pick it up the next day and based on that reading you may need to be on oxygen when you sleep. You could buy a pulse oximeter at amazon or any walmart/drugstore for around $10/$15 and check your oxygen during the day. If your under 88 then your in trouble and need to be on oxygen. If you check when you first wake up don't be fooled. That is not an indication of what it was when you were asleep.

#4 Stop the worry about the co pay. Ask doc for free sample to start with. Hit up the drug website for coupons that cover your copay. Most will give you the first month free. My copay was $45 each for Spirvia and Advair thru my insurance when I worked but with coupon on each I paid $10 . These are not those cards you see everywhere but actual coupons from the drug manufacture. They also have other help programs. You cannot have government insurance like medicare to get the coupons. Since I am now on medicare I get my meds from All Day Chemist when I get in the donut hole. Around $10 a month, no copay.

Like I said I did not want to sound harsh but we all think it will get better and it can but only if we are persistent in our determination to get the best care and options. Our doctors have hundreds of patients and as nice as they may be they are not the ones going thru this horrible disease. I bet if he were trying to suck air thru a straw into a thimble this weekend like you then he would have put himself on something right away.

Crackerjack4u profile image
Crackerjack4u in reply to Jocopd

Thank you jocopd for your helpful reply. I didn't see it as harsh at all, just honest.

I agree the ball needs to be rolling sooner rather than later on proper and complete treatment for this disease. Anoro is what he would prefer me to be on. He had actually given me an Anoro inhaler sample when I was 1st diagnosed, but it ran out, and he hasn't called in the actual script yet because it will cost me I think it was $300 per month after my insurance pays, so he's been holding off on calling in the actual script to the pharmacy until I can see if I can find an assistance program to help with the Anoro monthly cost because financially I can not afford that each month. If I can't get assistance on Anoro then he's going to put me on something else that is more affordable for me, but again he'd prefer me to be on the Anoro, so that's why I was checking around trying to get an idea of inhalers that work well that hopefully won't completely empty my bank account in the process.

I did call the doctor's office yesterday to see if they had any extra Anoro samples available, and they were suppose to check on that for me, but I've not heard back from them as of yet, so I'll be going to the office shortly to pick up some papers anyway and hopefully by then they'll have located more samples. I thought that trying to get more samples would be better than nothing at least until I can see if I'm going to qualify for assistance on the Anoro with the company or not, or even if they have an assistance program available.

I am, in fact, on a Medicare Advantage Plan, so the coupons apparently won't be an option for me either. I'll certainly look into that All Day Chemist place, and see if they would be able to help me too. I'll also try to get my doctor to order me an overnight oxygen test, and pick up a pulse oximeter the next time I'm at the pharmacy. I so plan on getting him to refer me out to a Pulmonologist in the near future, plus he is also fixing to retire at the end of August also, but lol of course with another specialist referral, that's yet another $45 copay every time I walk through those doors too, and when you already have 12 other specialists it sure gets expensive, but I suppose if I can't breath, I won' survive long, so the rest of it isn't going to matter anyway. Thanks Again, and have a nice day!!

The full price of Anoro is $300-$400 so I wonder why your insurance company wants you to pay it all? Unless your already in the donut hole. That is the average price of most everyone's daily meds but most have only the copay which is still a lot ($42 or so) Well I found this so go here: anoro.com/savings.html

Apparently this is one of the few that can be done with medicare if you read the requirements.

Good Luck!

Crackerjack4u profile image
Crackerjack4u in reply to Jocopd

I just checked that link and it says that it can Not be used if your on Medicare.

jocopd I did find this GSK prescription assistance Program though, and my income is below what they require. According to the listed meds I should be able to get both my Ventolin and my Anoro through this program, so I think I'll look in to it. Certainly won't hurt anything to try.

Sorry I meant to leave the link in case anyone else wanted to check it out and forgot it is for people on Medicare Part D. gskforyou.com/medicare-part...

Jocopd profile image
Jocopd in reply to Crackerjack4u

I am sorry I did not clarify that it is that one free month on the left you can get when on medicare not the coupons on the right for the whole year but it sounds like you found the other programs I was referring too. Way to Go !!!

Your ventolin co pay seems high. A pro air inhaler is the same thing, just a different name and may be cheaper. They are both albuterol. All Day Chemist has the albuterol inhalers for about $5 each buy you will need to pay shipping of $15 so if you buy there then go the 3 for $15 plus shipping. Just make sure you match the dose amount.

Also if your income is low enough for the GSK program then have you checked with your state? Many states offer income assistance for all your drugs if your income is that low. Yeah with your medicare advantage plan you will have that donut hole and have to pay a lot more for the meds so nice to hear your taking advantage of these other options.

So glad to hear things are moving along and not laying stagnant!

Crackerjack4u profile image
Crackerjack4u in reply to Jocopd

Thank you jocopd. I went to see the Pulmonologist today and he switched me off the Anoro to Breo, and wants me to have a methacholine challenge test done which is scheduled for July 6th.

He said I for sure have COPD but he is 99% sure I have Asthma and have probably had it for some time now, and the Asthma is what likely lead to the COPD. I know I've felt like poo respiratory wise, and have had shortness of breath both with or without exertion for longer than I admitted to myself, my docs, etc., that it had been going on. ( I thought, "oh I'll go away eventually, it's just some shortness of breath, and chest pain but it's no big deal, etc." but, of course, it didn't go away, and only continued to get worse until I couldn't downplay it any longer). But it sounds like now that all the diagnoses, might be getting ready to catch up to the true severity/damage of those under admitted symptoms?

I was hoping since my COPD was recently diagnosed, and since it was caught early I'd have some time to ease into the treatments, referrals, etc. but it's sounding like I might should have gotten the ball rolling on the treatments, referrals, etc. "Years" ago when my symptoms first actually appeared. :(.

Thanks again for you help, and have a nice day. I'll keep everyone posted on what I find out.

Thank you jocopd. I got 2 more samples today, and he is referring me out to a pulmonologist too. I don't know if I'm in the donut hole or not my Ventolin was only like $47 a couple of days ago when I had it refilled, (unless that's about normal price for it?) I've not been on the inhaler long enough yet to really know what it costs at different times in that stupid coverage gap area. I think Anoro is a relatively newer drug, if I'm not mistaken and it could be that the insurance may try to get me to use a different inhaler, which happens sometimes with them? Thanks for the link on the Anoro, I'll certainly check into it. Have a nice night.

Last night was another very bad symptom night, but I did find a temporary solution that might help others having the same problem, so I though I'd share what I did.

I had told the Pulmonologist yesterday about the "inhalers ?" making my mouth, throat, and lungs feel heavy, raw, and feel like they're on fire. I'm pretty sure it is the inhalers causing it because they are the only thing I've done differently, and none of this started until after I started them, plus I've read others have experienced the same type of things with their inhalers too.

The Pulmy Dr. checked to ensure I didn't have thrush, but offered little to no other suggestions on how to help it. Last night, note: I hadn't started the Breo yet, I started it this morning, I was very short of breath, I was coughing, clearing my throat constantly, had a real raspy sounding voice, and had a horribly sore/raw mouth and throat (it felt raw all the way through my lungs), and my lungs felt like they had concrete blocks sitting on them, they felt like they could literally explode at any minute, and like they were on fire. What a miserable feeling all that is.

It got to the point on the rawness that I thought my mouth, throat, and lungs could literally start bleeding at any time. I tried drinking milk, and eating bread, etc. to try to help coat the areas with no success. What I did finally do that actually worked great and immediately stopped ALL that burning was to take about 4 Tablespoons of Liquid antacid (Like Malanta, or Mylox, etc.), swish it around in my mouth 1 Tablespoon at a time, and slowly swallow it allowing it to coat my throat, etc. on the way down. (I waited awhile after doing this before I drank anything).

All my burning, etc. symptoms were gone, and are still gone this morning!!!! Last night before I went to bed (just incase the symptoms were planning to return while I was asleep) I got 2-3 Tums antacids tablets and let them dissolve in my mouth slowly coating it and slowly swallowing the antacid down allowing it to further coat my throat, etc. (I really don't think the tablets were really needed, but lol I wasn't taking any chances, I needed to try to get some well needed sleep).

Needless to say, I had ZERO burning issues in my mouth, throat or lungs last night after doing that, (still none this morning), plus that constant need to clear my throat, constant aggravating cough from the irritation in my throat and lungs, and that raspy sound in my voice all also immediately stopped after that too. I was so much more comfortable to be rid of those horrible unnecessary symptoms.

I don't know if this will work for everyone, but if you can't get your burning etc. to stop this might be something you might want to try, and see if it helps you too. Hopefully this will help others going through the same thing (I've read many stories on people experiencing these same type of things without being able to find any relief for their symptoms who have had to deal with them for months-I can Not even imagine living with those symptoms for months just a couple days was more than enough for me). We all already have enough symptoms that go along with this horrible disease that we are forced to deal with without be stuck with burning, etc. symptoms that we can possibly quickly eliminate. Have A wonderful day. I hope this helps.

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