Stopped meds experiment

[challny]

Without any reason, really, I stopped using Symbicort a few weeks ago and I could not tell any difference in my breathing. I continued to use Spiriva Respimat as prescribe and once in a while Ventolin. Then, 3 days ago I stopped using the Spiriva, too. And I feel OK. Believe me, I know COPD is a crazy disease with ups and downs. I have been told I have emphysema with some asthma. Mild to moderate (I've been told both at different times by the same pulmonologist) I guess my real question is this: Is it foolish to stop inhalers even if you feel like you don't need them? Let me assure you, since dx two years ago (I'm 66 now), I have often felt the need for all 3 of them, and have tried prednisone here and there as well (not now). Please don't misunderstand me; I know COPD is progressive and does not go away. I just wonder if I should continue my "no meds" experiment or if that is foolish? Thanks in advance for any input, and I hope all of you are doing well. I read this forum all the time and have appreciated all the information stated here.

[Caspiana]

Hi challny .

Personally, I never stop any medication without running it by my doctor. It really is a personal choice and any consequences of any, are also yours. I would though caution anyone reading this to be careful about simply stopping prescribed medication. It is definitely not for everyone.

Best wishes,

Cas xx 🍀

[Hacienda in reply to Caspiana]

I Totally Agree Cas, It would be like Me Not taking my Oxygen to see how long I lasted !!!!!! Do not Ever do this without consulting Your Consultant.

[Hidden]

As I understand it Symbicort is used for it's long term effects. It could be quite some time before you wish you hadn't stopped using it.

[MELNEL]

I agree with all the replies to your post. I have often days that I feel really good and not struggling much. And for sure I am happy that I having good days. But don't forget that some medication help to prevent infection and flare ups. But it would be no reason for me to stop talking it without my doctor's consent. I am happy that you doing well, but I definitely would recommend to talk to your doctor about your decision in a long term. 🤗🌹🌹🌹

[challny]

Thanks to all for the replies. I guess the verdict is in -- I'll get back on the inhalers. Like I said, I am not under the impression that my illness has "gone away." I've just been breathing a little better lately.

[Tree20862 in reply to challny]

Stay on the meds and stay healthy.

[Hidden]

I think getting back on your inhalers is wise. Just waiting for bacteria to culminate through constricted airways and cause an excacerbation. When I was first diagnosed I ignored it all. The inhalers were expensive and I felt I could just not think about it and it would leave and stop bothering me. Well...at this stage I get up in the morning like an old man. I’m 57. Crawl to the bathroom to get my inhalers so I can finally make it to the kitchen. This illness ain’t going away and it is progressive. Faster for some. Slower for others. However, the damaged alveoli aren’t growing back. The damage inside my very intricate lungs is there to stay..and seems it’s been worsening at a faster pace this past year. I was diagnosed at 47 with alpha 1 ZZ

[kflatt]

Personally, I have always taken Spiriva and/or Symbicort only when I feel I need them and my doctor is happy with that. Actually I stopped Symbicort altogether as I discovered it seemed to make me worse.

Just my personal way of doing things - with my doctors approval.

[Dragonmum in reply to kflatt]

I stopped taking Spiriva back in October because doctor refused me the mist inhaler. No ill effects so far.

[music]

Hi challny

I was diagnosed with copd Jan 2013.... 6 years ago and was prescribed Seretide 500 inhaler and ventoline.

After 8 months i ask my gp if i could try to see how i get on without using my seretide 500 has i did not feel that bad

My GP said i could stop using the seretide 500 and see how i get on but to still use my ventoline inhaler has and when i need it.

So i have not used the seretide 500 for over 5 years now just my ventoline, BUT i am i think still at the mild stage and did get prescribed with incruse ellipta 55 inhaler just before Christmas this year because of my bad wheezing and i dont think that has made much difference to me.

We are different how our lungs work with this COPD but with me at the moment i like to think that i know my own body and how i feel and dont want to take things if i dont need them just yet.

Also again with me i have found exercise and keeping active is one of the key things with this COPD and of course not smoking

I must admit i have found the winter cold months now i seem to be getting a bit more breathless during the evenings so might be time soon to think about using some sort of preventer inhaler has seem to be using my ventoline more but at the moment the ventoline still works well for me.

Good luck and best wishes

Music

[Ergendl]

Though my FEV1 readings have now returned to a normal level and I'm feeling a lot better, my GP and Respiratory Nurse have not told me to stop using Seretide and still encourage using Ventolin when required. They would have stopped prescribing them if they didn't think them necessary, to help reduce their prescription costs.

[Jools7770]

I have mild Bronchiectasis and don’t like taking meds, diagnosed last May so new to it all but am trying to find ways to do it naturally. I have spoken to my doctor and consultant and they can’t find a reason to disagree with me. So I have cleaned up my diet and am eating stuff that cleans lungs: no sugar, alcohol, wheat, dairy, soya or tofu - loads of veg, salads, grains, slaws, and I MUST have things that warm my lungs like ginger, garlic, watercress, turnip, horseradish, onion. This is hard and radical but I can feel a difference. Obviously research this yourself and talk to your practitioners but I have more energy, very little green sputum (there is less altogether and mostly milky white) and hardly coughing. Lung food is the way to go for me! Maybe you could try mixing this sort of diet with your meds? Everyone does it differently but I wanted to share x I am 60, a bit alternative in as much as I prefer natural remedies which is difficult with lung disease but have told my medical practitioners so feel ok with it myself. Good luck in all you do 🙏🏻💖💕💖🙏🏻🙏🏻💖💕

[Schmicter]

Inhaled steroids like symbicort, treat inflammation. If you have emphysema without inflammation, and no chronic bronchitis. Meaning you don't cough up stuff constantly and don't get infections regularly, lungs are clear but get breathless easy, then it is possible steroid inhalers are not really doing a thing.

[pete45]

Over the years I have stopped several times and never noticed anything. I have stopped any inhalers with steroids years ago. The use of inhalers as prescribed by your pulmonologist doesn't ever seem to be changed and yet new meds come on market all the time. I watch for them and try to do as much research as I can and then question my doctor about perhaps switching. They are so busy that unless you bring it up nothing will happen. They have given me hell when I have told them I have stopped but when I say there is no difference the looks go blank. I am stage 2 plus and have been there for the last 4 years or so. There is no cure for this and wonder sometimes about these meds. Read something this morning that only 10 to 20% of the meds actually get to the lungs. What a waste.

[Putsywillow1 in reply to pete45]

Your post is very interesting as I,too, have questioned the use of inhalers. I’ve been prescribed Stiolto Respimat after having used Adair. I prefer the Stiolto as it is steroid-free & it’s used once a day. That being said, like you I’ve gone off it for a few days at a time to see if there’s any difference in my breathing & like you, I’ve not noticed any difference. I have no problem breathing other than breathlessness due to the destruction of the lungs due to the emphysema. These drugs are bronchial dilators but do they slow up the progress of the disease? I’ve been told that exercise is my best ally in that department. I can’t get a straight answer. Maybe there is no definitive answer yet as a lot of these newer drugs have not been in use long enough to establish a solid track record. Like you, I’m also stage 2 & there’s been no change in three years which, I suppose is a good thing but I attribute it to my treadmill & free-weights not to mention taking care of a 4 bedroom house on 2 floors! By the way, I’m 77 years old & other than the breathlessness I feel great - I get tired sooner but told it comes with the territory. Love to have more of your input.

Have a good day & thank you. It’s nice to know I’m not the only one with these questions. Cheers!

[challny]

This has been a really interesting thread, with some saying they see little difference between using inhalers and nothing at all. For three straight days I didn't use any of my inhalers, but today I took my two puffs of Spiriva. I'm never sure if any of it helps, but I'm also not certain that it doesn't help. One thing I do believe is that there has been almost unforgivably slow progress in the science of lung disease, yet millions worldwide suffer from it. Why is that, I wonder? @RedSox, what you think?

[Whitechinchilla]

Hi challah. If you have had a professional diagnosis then it makes sense to follow their advice and if you feel you don’t need quite so many meds then check that with him/her before stopping abruptly or even tapering off. Good wishes.