Steroid Inhalers

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I wondering how steroid inhalers like Folvent work for you people on this site. I'm not sure I notice any difference.

Russ

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  • Posted

    I was diagnosed with Bronchiectasis when i was 50 but pretty sure i had it a lot longer always having chest infections out of breath for years and i mean years i take nothing i just do a lot of hillwalking think exercise is the best thing do out i still get out of breath but just carry on.

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    • Posted

      Peter I agree. Exercise is the cure for just about anything. So you do not take a steroid inhaler for asthma? So the exercise has help with all of your symptoms?

      Russ

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    • Posted

      Hi Russell I take nothing  just walk i havent been given anything for it seem weird when you guys are all taking something.  I do feel tightness in my chest and breathless a lot. I spit as much as i can to clear the chest but if i get an infection i spit a lot green vile maybe have to see my doctor about getting some medication.

      Regards Peter

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  • Posted

    I take Symbicort, which is part steroid (corciscosteroid) to reduce inflamation and part beta agomsist to open the airways and improve breathing.

    In part I agree with your observation Russell as I do not notice a huge difference if I forget to take my morning or evening dose or even both (the latter is not common, but I often forget my evening dose if I'm out and about or even at home on te laptop or wathing TV. I get to 11pm ish and realise I forgot.

    For that reason when my chest is feeling particularly well I do quite often cut the morning or evening or both doses down from 2 puffs to one. Have also experimented with cutting out altogether but after say 3 days I realise my chest feels like it needs it again. That stuff is bladdy expensive (I'm non-resident Brit now) but I don't want to short-change my feeling of well-being. Some pulmos in Thailand have told me I could/(should?) cut it out - it's not even really designed for BronchX sufferers (rather its an asthma mainstay I believe). I think I know my body best though. I tell my UK pulmo at Papworth my doses every 6 months I go for a check-up and they have never told me to cut it out; rather they tell me that my lung function is still pretty good.

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    • Posted

      Steve, thanks. I had taken Asthmanex for years and was paying $180 for a three months supply with my insurance but for some reason, and I think it's becasue Trump is president and now Big Pharmo thinks the chains are off, so now the Asthmanex is $600 for a thre  month supply.

      But back to the point. I don't notice somuch difference being off for several days. As you said it's an asthma drug and my asthma has been controlled very well for years. I have to think about this more and get more information.

      Thanks

      Russ 

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    • Posted

      I take Advair rather than Symbacort. I do have asthma as well as BX but I've had good luck with it using it twice a day

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  • Posted

    Hiya,

    I Ditto what Steave has said I take Symbicort also,so I really don't know the one you are using,feel I could stop it all together at times as I do for days and must say I don't feel any different off or on it,it's the AZ that has made such a big difference for me

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    • Posted

      Charlie, yeah Symbicort. Its for asthma and not for BRX as Steve mentioned above. I agree, what has changed my symptoms dramatically is AZ. 
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    • Posted

      Charlie, Iv been thinking of going to Mayo Clinic, voted the best in US for Plumonary Disease. I have not seen a doctor yet, but recieved a comment from one of the patients at Mayo. Whay follows is an excert:

       I started seeing my doctor there in 2013 whereupon he said NEVER take 

      azithromycin again! His reason was because it is considered one of the more 

      potent drugs they use to combat our MAC, and he didn't want me to build up a 

      tolerance for it. He said I may need that BIG GUN some day. In 2013, 

      I was put on a prophylactic of alternating month of Cipromycin and 

      Doxycycline, both on a 10 day course. (no salt treatments) Then I got a 

      positive test for MAC colonies and Pheudomonas bug of some sort in 2016. I was 

      then taken off of the doxy and it got replaced with tobramycin (28 day 

      course) and stayed on cipro(10 day course) on the alternating month. Plus 

      added the salt nebulizing treatment. All coughing ceased in August 2016 and I 

      feel like a normal healthy person despite having very little lung function left. 

      Now, I battle with fatigue. Hope this helped.

      Have you heard of this way of using antibiotics? Do like the idea of not using AZ forever and creating super AZ Bugs.

      Russ 

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    • Posted

      Hiya Russ,

      Makes sense I will show this to my Doctor and ask the same questions but you said that was told to you in 2013 to get off but you are back on it again as I thought from past Replies?

      Going to Mayo is a good start,it will be good to find out what they say keep us all poasted and Thanks for the update.

      Best,

      Charlie

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    • Posted

      Charlie, sorry about the slow delay. Im glad you are going to ask your doctor. Im going to send the message to my ID doctor who is prscribing the AZ

      Best 

      Russ

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    • Posted

      Charlie,it  will be interesting  to see what your doctor says.

      I came across a study that seems to suggest that the effects of the AZ for a 6 month study seem to last for a full six months after the dosing is complete for some patients.

       DR CONROY WONG, OF AUCKLAND'S MIDDLEMORE HOSPITAL IN NEW ZEALAND, EXPLAINED: "VERY FEW EVIDENCE-BASED TREATMENTS ARE AVAILABLE FOR THE PREVENTION AND MANAGEMENT OF BRONCHIECTASIS EXACERBATIONS, AND MORE ARE URGENTLY NEEDED. OUR RESULTS SHOW THAT AZITHROMYCIN TREATMENT FOR SIX MONTHS DECREASES THE FREQUENCY OF EXACERBATIONS AND INCREASES THE TIME TO FIRST EXACERBATION. THESE BENEFITS SEEM TO PERSIST FOR SIX MONTHS AFTER THE TREATMENT IS COMPLETED, SUGGESTING THAT AZITHROMYCIN COULD OFFER A NEW TREATMENT OPTION FOR SOME PATIENTS WITH BRONCHIECTASIS."   I think that I have been under impression that the AZ traetment is for life.Are you taking the AZ intermittenly on a six months rotation.?

      Russ

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    • Posted

      Hello Russ,

      Interesting,as for me I will be on AZ one year as of Tomorrow doing the 3 day routine,with no side effects at all,I return to the states on the 1st of June see my doctors within the 2 weeks back so I plan to bring this up with them and see what they say will let you know.

      To say the least I really don't want to get off to even test it,to see if I go back to like it was before,because that was the pit's,before.

      I seem to have it under control now still do everything else with it and so i can deal with it,still not fun but liveable.

      Best,

      Charlie 

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  • Posted

    I'm on Symbicort too. I was diagnosed with BX in December 2016. I've not noticed it making any difference to my breathing. It feels just the same before and after using it.

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