Steroid treatment?

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Hi everyone. 

I'm new here. I was diagnosed with BX and also rampant Aspergillus about this time last year. It sort of came on suddenly so I had all the testing and the name was given to the condition. I'm aged 66. 

I'd had whooping cough aged 4, pneumonia aged 13 and a wheezy chest my whole childhood. Add in there parents who smoked too...I never did though.

So I've always tried to manage my chest with an inhaler and ABs when necessary.

Last year I noticed I was getting breathless walking up hills etc.

Thankfully I had good treatment which cleared my body of the Aspergillus. The BX was harder to get under control. I was taking Prednisolone from November until end of January and then on and off until end of April. 

I've been struggling since mid October with 'should I shouldn't I' see the doctor with the breathing difficulties. I relented and started myself on a course of doxycycline & prednisolone for one week. The doctor said afterwards there were no crackles and suggested I try Mucodyne. That just made me feel like I had a bad head cold so I didn't continue with that. I should add that with my BX I don't have any issues with excess mucus and coughing. 

I so detest that steroid treatment because of the side effects....sleepless nights, swollen face and swollen cold knees but I'm told there is nothing else that deals with BX. 

Have others found this? 

Thanks for any help and advice. 

  

1 like, 10 replies

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10 Replies

  • Posted

    Hello Janet, who’s young or very old depending on the 24.

    so sorry to hear about your BX. Everyone is different but what you describe is familiar. For me it was azrythromycin that was the answer and while I have some phlegm, Clarythromycin was not the answer, with science to back that up. it pretty much stopped ever being a problem. Years without constant coughs and sputum coughed up.

    This thread shows me saying this previously if that help

    i hope you are well soon

    best wishes

    Brian

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  • Posted

    Ha ha Brian...seems that Patient website thought I could be 24 again!! 

    Yes I read your comment about Azrythromycin and Google seems to compare it with Doxycycline, which is the one I'm given. Have you been tried on that one too? Another GP said there was no value in ABs it's just the steroids I need. 

    That's what I wondering...is everyone given Prednesolone? 

    Thanks 

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  • Posted

    Hi Janet,

    What's your dosage with the steroids that you're having those side effects?

    (I had histoplasmosis diagnosed in 1998, after being treated with high-dose steroids for what my doctor at the time thought was chronic bronchitis...turns out that steroids can cause fungal overgrowth and make that kind of infection worse...took almost three years to clear it. My current pulmo is very much a "lowest dose that works" type, because I have diabetes and prednisone makes my blood sugar wacky.)

    I'm on rotating courses of azithromycin and doxycycline, in terms of Abx, but I seem to get better results from steroid inhalers than from prednisone/prednisolone pills.

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    • Posted

      Hi CrimsonCow,

      I was started on 8 a day but after a couple of days the side effects start...

      Yes I've had a lot of problems with fungal growth and the aspergillus in my body. I took a very long course of Itraconazol, which is supposed to be horrible stuff but thankfully I had nil side effects!! 

      I have a GP who is convinced that ABs are not effectual with BX...only steroids...that's my issue. This last flare up I had when I started myself off on the rescue pack...I took the doxyclycine and 6 steroids a day...but another GP I spoke to said get onto 4 a day after two days. I suspect she would have had me start on the 4 so perhaps the lower dose would have been alright for me? 

      I wasn't clear after one week but resisted anymore meds...just used a nasal spray, inhalers, and chest linctus and I'm actually now clear again. 

      Thanks for you advice. 

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  • Posted

    I wouldn't bother with steroids. They do nothing for BX and are only bad news. I can't even take them They put my heart into an adverse rhythm. They also deteriorate my immune system which is already compromised.  (I have a genetic abnormality)

    May I suggest injections of Rocefin? I have them for 3 days in a row instead of by mouth antibiotics so that my stomach doesn't get wiped out of the good bacteria and start giving me additional problems I don't need! lol The injections are very cheap and very powerful.

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    • Posted

      Hi Retirednana,

      I'm a retired grandma too!! 

      All this is so new to me....I'm in a state of flux really. 

      My condition is that the bonchi tubes tighten up and hence I can't breathe. I don't cough, have no mucus etc. I think some of the tightening is allergy based plus damp weather etc. 

      I think I was so poorly when I was first diagnosed - that was the reason the respiratory consultant started me on a long course of steroids. Once I complained about the side effects she said she wanted me off them ASAP but of course I had to graduate off the course. I kept having flare ups so up the dose went again...etc. 

      Are you in the UK? I've never heard of Rocefin....

      Many thanks for your advice. 

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    • Posted

      Hello again Janet,

      No, I'm in the US.  I have pain, cough, no mucus but cough up blood occassionally. The weakness from the flare ups are brutal.

      Rocefin may have a different name in the UK..... you have to ask for it specifically. No one offers it. I have NO idea why not.

       

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    • Posted

      Thanks, I see my consultant at the end of January...I'll be asking lots of questions this time!! 

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  • Posted

    You could ask your doctor if you can try out "Symbicort" - it's an enhanced inhaler with corciscosteroid* properties for inflamation and beta-agonist properties (bronchodilating effect - ie  reducing wheezing/crackling). I suspect some state health medics might resist prescribing bronchX patients as it is more expensive than standard one-drug inhalers and prednisolone. It costs me Thai baht 1,250 ($38) for 120 doses. That lasts me 2 months if I'm well and 1 month if I'm feeling exposed to an exacerbation or in one.

    I have a feeling that it is not commonly described in US or UK for bronchiectasis (more commonly used internationally for asthma), but my Thai pulmonologist prescribed it in the period when nobody understood what was wrong with my chest. I find it helpful to a cleaner feeling for my lungs so I continued with it. My UK lung defence team at Papworth Hospital UK had no problems with me continuing to take it.

    If inflammatory problems are the big concern for you (that's normally what steroids are targetting I believe) and your symptoms or frequency of infections and exacerbations are very troubling then you doctor should be considering whether you need prophylactic (one tab 3 days a week) azithromycin (various tradenames depending on country) antibiotic therapy.

    If "Mucinex" is giving you problems then you speak to your doctor about alternatives. Mucinex's active ingredient is guaifenesin. Alternatives more commonly prescribed for bronchX sufferers (I believe) are carbocysteine and acetylcysteine. I use the latter (again based on a Thai prescribing) branded as "NAC Long", which suits me well

    * Corciscosteroid is slightly different to a full-on steroid and may not have the same nasty side effects you are experiencing with prednisolone. I have been using Symbicort for nearly 4 years now and I suffer none of those typical steroid side effects (not a guarantee for you of course and I didn't really suffer when I had a 2 month course of prednisolone in my early analysis days)

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    • Posted

      Thanks Steve for all your advice. I have indeed tried Symbicort but can't use it with a spacer. I've had a lot of issues with my throat being hoarse and croaky with inhalers. It was Seritide which seems to have caused the issue so now I'm on Fostaire and Ventolin when needed but even with a spacer the ventolin is hard on my throat. 

      You were fortunate not to have any side effects with the prednisone...guess we're all different. Glad you're getting good treatment. 

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