Trying to get off of symbicort

[prestonjames]

Hi DX'd with COPD with small emphysimatic spot on lung. The spot is not growing. Stopped smoking after 40+ years 6 months ago. On Symbicort and Combivent. Supposed to take Spiriva instead of the Combivent. Also Type 1 diabetes since 1972. After DX, I started an exercise routine, 90 minutes a day on an elliptical cross trainer and trampoline for about 20-30 minute a day. Been doing this for 12 weeks, 7 days a week. I don't always use any of the inhalers including the Symbicort. I do think the I am experiencing some muscle weakness as well as tired from not using these meds regularly. Is it better to be off them entirely. That's what I'm shooting for anyway.

[Damon1864 Volunteer]

Please don't come off them until you have spoken to either a nurse or doctor. If you really feel you don't need them, then take medical advice first. Well done with your exercise routine, keep it up. Let us know what happens with the inhalers. Take care, 😊 Bernadette xx

[prestonjames in reply to Damon1864]

I told her the last time that I didn't always feel the need. Absolutely don't like the Spiriva. I am being careful about the inhalers. But after 46 years with T1, I can get pretty skeptical with some Dr.'s . I do seem to get along pretty well with my pulmonologist.

[JJP4214 in reply to prestonjames]

Hi I agree completely with you where the spiriva is concerned. I absolutely hated it and refuse to take it also. I was using it at night before bed and I swear I would wake up in the middle of the night with shortness of breath and since stopping the use of it I have not had that issue again.

[challny in reply to prestonjames]

prestonjames, can you tell me why you don't like Spiriva? I'm on it and skeptical as well.

[prestonjames in reply to challny]

urinary flow problems, some shortness of breath/ general feeling of something not right.

[santisuk]

For my mildish bronchiectasis I have taken a relatively low strength (160/4.5mcg - I don't think this strength is used in the UK) couple of puffs twice a day for 5 years now. I reduce this to one puff twice a day and don't worry too much if I forget my evening dose.

I feel it kicks off my day well and any lingering restriction feelings in my lungs after waking up soon disappear. I notice if I leave it out altogether in the morning.

Seems very low impact to me in terms of toxicity and having researched the reported side effects on the lengthy box insert and researched for long term effects on the internet with no specific risk factors identified.

Your posting reminds me that perhaps I should look into whether there are any reports on long-term corciscosteroid impact generally, but otherwise I am not sceptical of its continued use. Willing to be shown otherwise - why are you so keen to get off it?

Just don't like the principle of meds/drugs? Given up alcohol and cigarettes yet then? (gentle tease). If you have to pay for it I can understand why you want to get off it! Costs me about 25 quid a month, bought OTC in Thailand where drug costs are relatively indicative of costs in the first world.

[prestonjames in reply to santisuk]

Used to like the principle a little too much. Don't drink because of the t1Diabetes. stopped smoking cigarettes 6 months ago. Still have a puff off of the green once in a while. Insurance pays most of the cost. Would love to visit Thailand. Jealous!

[Sandyeggo]

Wow I sure can relate to you. And I’m always feeling guilty about not taking my inhalers like I’m supposed to. I have a drawer full of every inhaler except the symbicort. But then I get so angry with myself when it’s time to go surf and I feel strong and confident until I’m getting pounded by waves an all the sudden can’t catch my breath then I catch it with a giant nose flush of ocean water then that kinda kills the mood. I don’t have diabetes but I did stroke in 1990 and became hemiplegic due to it so my athletic endeavors some things are very difficult. But the COPD takes it, the drop foot and contracted arm limp and all that is really no biggie until you lay something on top of it like”Now I’m taking your breathing, I’ve taken a little of all the rest of ya this is all I’ve got left to torcher you with”. I have an excellent Physical Therapist and he works out with me a couple times a week and as long as I stay away from all those cardio machines and stick to weight bearing/ body weight bearing exercise and eat lots of fresh fruits and veggies I feel pretty good about it all.

[Schmicter]

You sound a lot like my situation. I also started pretty intense and regular exercise routine for the last 15 months after quitting smoking diagnosed copd, smoked 40+ years. I am considering getting off symbicort, as I am doubting it really has any benefit. I experienced muscle weakness and tiredness also, and found that at my age...7 days a week of exercise was just too much...not enough recovery time. Kind of a over training syndrome. After allotting enough "rest days" and paying close attention to heart rate training, I now can feel the benefit of regular exercise.