New information to help from getting flares

My husband saw a new specialist and he recommended Z-tab three days a week Daliresp and 2 new medicines for the nebulizer twice a day. brovana and budesonide As a help in not getting flares which my husband has been getting a lot of and they last longer each time. Any one have any luck with them? They are new to use. He still takes prednisone 5 mg a day. When he isn't having a flare. He resonantly was in the hospital ten days. But is now over the flare and is hoping these new medicines help him from getting another one.

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  • Hello I know to well about flare-ups I was in and out of the hospital about 8 times last year actually developed a lot of anxiety over it. They put me on Daliresp and over the counter NAC which you can buy online it has changed my life I haven't been to the hospital since February of last year knock on wood. My doctor just took me off anti anxiety medication I still never feel very well but I am working on it. Even went bowling with my family today. I didn't bowl but it has been a long time since I have been out. Hope this helps.

    Jane in Portland, Oregon.

  • Hello!!!! My name is Lisa and I was wondering what NAC is? Thank you so much!!!!

  • No side effects I lost a lot of weight when I first started taking them that has now stableize got a little worried but I was a little overweight.

  • Thank you

    He is very thin now.Hope that isn't A problem for him

  • Just monitor it they didn't tell me I would lose weight I looked up the medicine online and that is how I found out I knew something was making me lose weight they didn't seem to concerned I don't like taking all of this stuff buy feel it helps keep me alive.

  • It is N- Acetyl CYSTEINE or NAC you can get it in a health food store or I buy mine online from piping rock.com my lung doctor told me about it

  • I am so happy to hear of the results you have had. he tried the Daliresp while he was in a flare and he had very bad gut pains. The druggist said it might be better while he wasn't in a flare. Did you have side effects from it? I m happy for you that it is working. Have they talked to you about the inhalers if mentioned? Medicare pays for them. If your on Medicare. Other wise they are terrible expensive. Also what about the Z-tab? He hasn't been on any of it long enough to say if it helps. He's just starting on the Z-tab after coming off the antibiotic he came home from the hospital on.

    I'm not familiar with NAC either.

    Thank you so much for answering my post.

    Jan

  • The. Only inhaler I use is prohibited air and advair and spiriva and oxygen mine nebulizer medicine is albuterol sulfate I believe I didn't start cuz in Delaware but I was desperate I didn't really care what I took it kept me out of the hospital daliresp is pretty expensive but I signed up for this online prescription Place and I get a lot cheaper zpack I have been given a few times I thought it was an antibiotic I should start keeping a journal I have been on NAC for quite awhile I asked my GP how long I would have to stay on daliresp and she said probably all my life. It took me quite awhile to feel half way decent I had to have a nurse at home visits and physical therapy very light weight. They had wanted to put me on hospice so I have come quite far from there so don't give up.

  • We paid $325 for his first script of daliresp but I am getting it now for $109.00. If you are getting it for less than that please let me know. This is on line as well. Are you on Medicare? My husband is 74.The z pack is an antibiotic. This doctor believes in keeping him on it all the time. He hasn't been on the new stuff very long yet. he just got out of the hospital again a week ago. The flare is gone for a few days so he will go back on the z-tab since the antibiotic he came home on is gone as of today. And just been on the new nebulizer treatments since Wednesday. He also takes albuterol once now between the other two that he mixes. Used to take albuterol three times a day. He also takes Spiriva. I assume you are also on oxygen 24/7

    Jan

  • No but on it quite a bit trying to wean myself off of it I. Don't sleep with it anymore my doctor had me on antibiotics all the time but I got off of it because I couldn't control my bowel movements so I wasn't able to go anywhere sorry I have been graphic but might help your situation. I am on Medicare had to quit my jobs and get on disability I pay $95.00 now for daliresp when I am not in a donut hole it is a lot cheaper don't ask me what the donut hole is as they have never explained it so I understand. I just google get cheaper medications and I got sites for discount medications

    Does your husband have COPD?

  • Mocha has severe emphysema.

    Has been on oxygen for almost 3 years now. 24/7 flare or not. But on the flare its much worse. The last two times he went in the hospital he was on 15 liters when he moved around and that wasn't enough. 6 or 7 when he was sitting. Now since he is off the flare its 2 while sitting and 4 while moving around. I use Canadian pharmacy for a lot of his medications. It is almost always a lot cheaper and he doesn't end up in the donut hole I started using them 10 years ago after I had breast cancer and did end up in the donut hole from my medicine which was $500 a month. Have always been happy with them They don't always have the medicine he needs but usually between them and one in Italy I can get it.

    He has combivent for rescue inhaler

  • Sounds like he is in pretty bad shape. I am so sorry lung desiese is the worst not being able to breathe is terrifying I hope the new meds will help him sounds like you both have had a rough time you with the cancer. What about a lung transplant is that an option? We don't know when it is our time I have tried to get all my affairs in order just I'm case. I do hope he will get better

  • They say he's to old for lung transplant

  • Do you have family or friends to help you out I know it is a lot for you to go through my husband has diabetes and has lost both of his legs. We recently had to move it was awful. First I had to find a place to live had to be one level do to both of our health conditions and affordability prices are extremely high in Portland luckily for me I had already given away much of my possessions it was really hard on my husband though as he doesn't like parting with things I was finally found a place where we could bring our dog too. I just know go hard things can be.

  • You poor woman. How old are you?

    We live in the country on7 acres. Most of it trees but we do mow about 2. Our dream place. We moved here when we retired in 2001. The kids want us to move to town. We have a son an hour away a daughter an hour away the other direction and a daughter 9 hours away. We'll see how this summer goes. Out son built a thing to go on the back of Mochas mower so it will hold hid oxygen. That helps a lot. YOu know what medical bills can do to you. We had hoped when we couldn't mow [which is the biggest upkeep] that we could pay someone to. But like I said we'll see what happens this summer .Our son is a God sent as far as helping us. But he has land and a family also .I try not to bug them to much . our daughter who lives close stayed with Mocha when I went home to clean up. When he was in the hospital. We get along. Don't know where we will move when we have to. I know its coming but not yet I hope.

  • 7 Acres that sounds wonderful I can't imagine taking care of a place like that though I am62 but I have seen old ladies run circles around me I can't believe that your husband is still doing that kind of work in his condition you may find that you have to move in order to get the help that you need or maybe you could have someone move there for room and board in exchange for help around the place my oldest son lives with us but I don't know how long you will stay Yelp says quite a bit that went grocery shopping I still drive that shopping is that one of my enjoyment anymore I get a little upset because we worked hard all of our lives and then when it came down to retirement. We've both got sick. What happened to me was they had cancer and I didn't believe them I had nine doctors tell me that it was most likely cancer they took out part of my lung collapse so they had to reinsert tubes and then get me home and I went to my son's to recover and I told him I wasn't feeling well and I need to go to the hospital and he thought I was just taking too much painkillers which I wasn't and I told him I couldn't get me to the hospital within the hour that I would die so he finally took me to the hospital I went to a different hospital then where the surgery and my that said everything was okay but I couldn't breathe so they did a CT scan and found a horrible staph infection so I had to be put into a coma for three days until they stabilize me then I went downhill from there I was in and out of the hospital for an entire year I wish I would have never had this surgery the hospital mestinon they did something wrong because my bill was 700000 and I never saw another bill now I know better than to this and everything that they tell me and I don't go to the hospital anymore I still have my Lawn Doctor there but I don't go there or anything else I felt that they almost killed me and they were over medicating me with oxycodone 40 milligrams every 2 hours switch made me one crazy woman I got over it and I'm just trying to regain some of my health if I don't get some of that back I'm afraid I won't make it very long but I am taking my own hell into my own hands more seriously I trying to get off of all the Pharmaceuticals and go more naturally

  • Wow! Mocha had lung cancer the found it very early they took out the upper lobe of his right lung.the next day he developed a blood clot andthey had to go back in.he did fine for two days then developed a terrible infection like mersa.he was there 22days it was hell. When he came home he still had a pic in and medication which I had to put in ever I can't remember how many hours around the clock.the medication came from a hospital two states away and because it was from a hospital no insurance would pay the $3500 a week plus he came out of the hospital on sever emphysema. His lungs were scared that bad. I know how upsetting it is to work all your life. And end up sick and brokehe can or could last year use the tank at 15 to get down from the deck to the lawnmower f I bring it u from the barn to now. Well see if that still works this year.that us really all he could do.rest. of the time he sits in front of computer.which us what he's done all winter he had no energy'. I had to laugh when you talked about going to groceries store moch UA afaud to go in public becayse all the medications have zaoed his immune syatem and he's afraid if getting a flare or worse I grocery shoping ahigh light

    He us on 12 different hhings mist if the time Hus attitude s super if course he has ime bad Ines nice to talj to some one

  • Forgive me for all the errors in spellingI have to sit in the bathroom when he takes a shower and that is where I was typing

    The hardest thing for him to do. is shower. and he doesn't very often I usually give him sponge baths

    What I was trying to say at the end that it was nice to talk to someone who understands this mess we have ourselves into in stage of life.

  • I know you're talking about I have my family but they really understand the extent of how I really feel I don't let them know sometimes I just want to give up but I have always been a very strong person and don't give up easily I tried to get them to be healthy a lot of them smoke and I try to tell them how bad it is for them but they don't listen you keep saying you don't want to be in the same situation that I am in I'm waiting for the rain to stop so I can go out and walk for a bit I used to take one or two showers a day but not anymore the medicine makes me smell like sulfur and I hate it I try to take a bath every couple of days some days are better than others I didn't have cancer they just thought that I did that's what upsets me so much they refuse to do a biopsy before surgery my son asked them what would have happened if I hadn't had the surgery and they said nothing bet they were positive that I had it how are you feeling now and how are you

  • I'm goodas far as the csncer its been 10 years.they still check me often. I have bad knees and blewout both shoulders lifting weights years ago but I keep going with steriodshots. Now that mochal is out if the flarei have a few things to care if . I haven't been able to leave him for more than an hour. Because of changing the amount if oxygen he is to get. They want to keep it between 88 and 92 on the finger thing that shows what your oxygen is which means moving the condenser up or down depending on how active he is.with a flare you know how it can fluate but out of the flare its much better. So really I'm pretty healthy. I understand about being the strong one. We really have no choice and um with you. Imy kids don't knowhow it gets. I talk to my sister when I need to talk. She let's me vent but she doesn't understand or pretend to. We lost a child a 2 year who was a twin to my youngest daughter. So my sister does know what my life has been . she doesn't understand whyim not bitter . but I have a lot if faith andi really do believe God has a plan even though I don't like it much sometimes

  • I know what you mean I thought maybe I was screwed up spiritually and I was baptized after my last stint in the hospital I pray every morning and every night that things will get easier for God to heal my lungs at least somewhat so I can get out of my room it's better and I believe he does have a plan it is kind of funny my mom died back in 1989 and though I think of her all the time I never dream about her and last night I had a dream about her the last time I dreamt about her was the day that she died she was falling and I was falling and we were in a dark place and she told me if you ever dream you are falling you never want to hit bottom because if you do you are dead I thought that was a pretty weird dreams I woke up to the pastor calling me to tell me that my mother had just died and then I did I dream about her again until last night kind of weird

  • My mother died February 1989

  • Just checking to see if you two are okay

  • Yes you mocha started the dairesp last night hope he doesn't have the side effects hehadbefore

  • Take mine in the morning I don't know if that makes any difference it should really help but you might want to get him is some kind of drink that make them gain weight if he starts losing it cuz I lost a lot of weight

  • Could you not eat?

    Why did you loose the weight?

  • I could eat Canby extreme Weight Loss I just happen to be be one of those people without side effect is stabilized enough or 30 pounds

  • The medication can cause extreme weight loss doesn't necessarily happen with everybody but it did with me you just need to monitor his weight especially since he is thin already. It might not even happen.

  • I will thank you!

  • Haven't heard from you for awhile so just checking in with you hope all is well with you both.

  • He Is doing by better than he had in a lgood by time

    Oxygen needs are way down from where they were he is having some side effects from the new med but so far nothing he cant handle

    Thanks for checking

    How are you doing?

  • I am well I was a little freaked out because the insurance decided that they did not want to pay fordaliresp anymore but doctor is trying to get me back on it but I was worried that i would suffer withdrawals but I didn't so now I wonder if I even need it anymore

  • If you decide you do

    You can get from Canada for less than 300 for three months

  • My message started typing it's own words. Proair is my rescue inhaler

  • I use Budesinide Nebules twice a day, and find it does help. It is a steroid, so won't help immediately. It is also known as Pulmicort. The other meds I do not recognise, but they may not be used here in the UK, or maybe I have just not come across them before.

  • We never heard of them before the new doctor and my husband has had copd for three years

  • Budesinide is also a component in Symbicort inhaler and DuoResp. I find it helps me.

  • Yes, he used to use Symbicort. Doc likes this because it goes deeper into lungs

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