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I cant seem to shake infection without prednislone

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nanooskar
nanooskar

Hi all...Bronchiectasis and infections....I am not able to clear up the infection on antibiotics alone. I end up on prednislone and that gives me my life back!! but I dont know the downside of repeated courses of prednislone. Has anyone else a similar issue?

0 likes, 25 replies

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  • steve62514
    steve62514 nanooskar

    Posted

    I've used Prenisolone a couple of times. Made me feel like superman for a couple of weeks in the middle of the taking phase, as opposed to the winddown phase - as you know you don't just stop dead with steroids. Felt full of energy (and libido!) but didn't want to sleep much/enough When I took the first dose which was stronger and longer (8x5mg daily for 5 weeks then a taildown because my consultant had run out of ideas what was causing my lung shadow, post biopsy) than the second time (5x5 mg daily for 3 weeks then short taildown following radiotherapy for a MALT lung lymphoma) I noticed a slight cold turkey phase too.

    I wasn't able to detect any particular long term benefit to my chest condition though, but both takings were not in response to a specific infection, nor at the high point of an infection.

    Also, I read that steroids can reduce the impact of antibiotics so I have not hitherto taken them together. As you will know there are well-publicised risks to taking steroids long term - my pulmonologist says there should be no problem with a couple of short courses a year but I'm still inclined to try to restrict to once a year and when I am not on antibis (maybe I would if I was just on a prophylactic dose). I may be being too careful here though.

    Have not taken for a year now so I'm thinking of doing another course given that I'm feeling a bit of inflammation at night times (5 x 5mg daily for 3 weeks then a tailing down over 2 weeks, taking one less tablet every 3 days)

    I am no doctor so don't rely on my advice. I am seeing a consultant immunologist in 3 weeks time (still trying to identify any specific bugs in my system after 2 years of (relatively modest) affliction and was intending to ask her about steroid use - risk/rewards/how often/mix with antibis etc. Will post afterwards.

     

    • nanooskar
      nanooskar steve62514

      Posted

      Thank you for your informed response, Steve. I was diagnosed Aug this year, and seem to be incessentaly coughing, and not just mildly but to the point of vomiting. I am working with my gp to sort out a management plan but so far, not a load of success.. the respirattry spec prescribed 1) Spiriva ;2) Ventolin as reliever ;3) daily maintanence dose of antibiotic, doxy or klacid, & Prednisone, 25 mgs for 5 days, then 25mg for 3 days, then 15 mgs for 4 days, then 5 mg for 1 week... GP increased Spiriva to twice daily, and increased Antis from maintanence to treatment dose for 14 days. Ventolin is not doing much as reliever and I am at a lose. I see GP again tomorrow and he just has to step up his game and think outside the square. Right now, I am functioning for 3 days out of 7....and heck! that just aint a life!! Thanks again. and you take care of your self..I hope your bugs are identified and you get the treatment you need. Cheers!
  • steve62514
    steve62514 nanooskar

    Posted

    Should have metioned that I also take a couple of puffs of Symbicort twice a day, particularly when I'm having an infection. That includes a fairly low dose of corciscosteroid and seems to help me quite a lot - I have seen the difference when I have tried to cut it out and usually go back to it. Symbicort is more for asthmatics than bronch sufferers but here in Thailand the pulmonologists often recommend trying it and my UK consultant seems happy with my self-management.
    • nanooskar
      nanooskar steve62514

      Posted

      Yes this is one on my list to ask about tomorrow..I was using it prior to Bronchietasis Dx..and yes, it certainly helped then.. here in Australia I am finding there is little information available, and that UK forums are where Aussie gravitate..says something is lacking here..but thats a fight for another day...thanks again
  • BookNut
    BookNut nanooskar

    Posted

    Your situation sounds very similar to mine.  Infections that would not get better except with pred.  I would go on a 4o mg taper. Then I would be good while on the taper and for 2 weeks after.  Then it would start over again.  Eventually the good times became shorter and shorter.  i was on 9 tapers in a little over a year.  Finally , my asthma doctor decided I should taper to 10 mg and stay there.  I got bad at 10 mg and had to go up to 60 mg.  That caused feelings of rage and i would yell, slam doors and throw things.  Combo of pred rage and frustration and depression over the situation. My pulmonologist told me he had no more ideas for me, as did my PCP....  except she suggested i try a blood sugar detox diet because the pred had made me prediabetic.  I did research and found out about pulmonary rehab programs.  I signed up for one.  I did the detox diet as well. 10 days of no grains, no dairy, no processed food, no sugar.  Meat veggies and nuts.  I lost 15 pound in the 10'days plus another 10 days in the "add back food stage".  I have added back dairy with no problem.  I have NOT added back any grains and do not intend to.  My breathing is finally under control.  I have felt good for 7 weeks now....the longest good time in two,years.  the exercises and education of pulmonary rehab have been excellent.  I have tapered VERY slowly off the pred and am now down to 7 mg.  I am hoping to taper down by a miligram a month until I am completely off.  If I hAve to stay at 5-7, I can live with that.  My sugar levels,have all dropped to normal.   I no longer crave carbs and never feel hungry.  And I can BREATHE.  Yay!  Good luck.  I hope you soon find your answer.  I can relate to the coughing till you feel you might vomit.  Been there, done that, been in the hospital because of it. All the best to you!
    • nanooskar
      nanooskar BookNut

      Posted

      Hello Booknut..sound like you have been through the mill to use an old saying and yes, I relate!! hope I can get some better answers tomorrow. Thanks for taking the time to respond!
    • elizabeth49611
      elizabeth49611 BookNut

      Posted

      That's very interesting that diet might have an impack on our health issues.  In the past, I relied on prescriptions to keep me as healthy as I can.  They don't seems to be helping as they did a few years go.  I might try an unprocessed food diet for a few weeks.  Just fresh fruit, veggies, and lean meats.

       

    • BookNut
      BookNut elizabeth49611

      Posted

       I misunderstood my doc months ago when she told me about the diet.  I thought she meant to go,gluten free.  So...I went gluten free for a few months but did not see an improvement so gave it up.  She actually meant to go off ALL grains. 2 weeks off grains was enough to convince  me.  I have had the longest time feeling good in years.  Now I feel like saying "well duh". One of the thongs I test very allergic to is grasses.  All grains are grasses.  Hopefully I will soon be able to drop prednisone soon.
    • jeannie4243
      jeannie4243 BookNut

      Posted

      Hello Booknut

      I am stuggling with my husband Joe he has been home 5 weeks after 7 weeks in hospital, and nothing seems to make him any better just the usual round of antibiotics and streroids, and half the time he cant be bothered he feels that bad.  But i try to plug away and help him so was interested to read about the grains, but being a bit thick what was it in grains you stopped eating.  I think someone else mentioned cutting out suger but what do people eat.  I want to help Joe just dont know the ins and outs of all this food stuff can you help me a bit please, Thank You

    • elizabeth49611
      elizabeth49611 BookNut

      Posted

      Booknut,

      Good to hear that you are doing better.  I will give a grain free diet a try.  Also, it will be hard to give up breads and such.  But if it makes me feel better, so be it.

      Elizabeth

  • broadsword
    broadsword nanooskar

    Posted

    Steve gave a helpful summary. On oral steroids I too get the superman effect but sadly it comes with the Incredible Hulk effect with irrational temper which I struggle to control. My family hates me taking it.  In fact my grown up son, if I have a mild outburst, asks immediately if I am on my "roids"?

    i also find I have great creativity and am full of ideas although the insomnia can be irritating. I have often said that if they could make them without any side effects, they are a miracle drug for daily living with energy and brain power beyond all connection with my age.

    While they are good short term and are life savers it comes with huge dis benefits. For the lifesaving reason some are prescribed regularly with them. But generally, soon the side effects overtake any benefits and moon face and indigestion being low on the acuity of side effects.

    inhaled steroids have less side effects and more localized effect.

    For me, with a constant cough, the solution was found in the antibiotic azrythromycin because that too has an anti-inflammatory effect on the lungs.

    • nanooskar
      nanooskar broadsword

      Posted

      Hi Broadside..thanks for your lengthy response. .I do understand the down side of cortisone and certainly have no desire to depend on them!.but right now I am just finding it tough to get ahead of these infections. The antibiotic you named is so expensive here. On the subsidised list only 2 tablets can be prescribed after that eac tablet is about $30aud.. my doctor did tell me that last visit. I also am allergic to all penicillins, chephlasporins so that right there shortens the list of treatment. Also I am finding little relief from ventolin...I sm going to ask about symbicort... hope to have some answers tomorrow.
    • sam90709
      sam90709 nanooskar

      Posted

      Hi nanooskar 

      There are a few other things so to think about. Seretide is an obvious one. Can go up to 500ug of inhaled steroid plus 50 ug  of salmeterol. The latter is like salbutamol (ie ventolin) but it's long lasting. This particular combination is a standard for difficult asthma or COPD (within which category we are, more or less). It's in the same category as symbicort, I guess, but with a different profile. On the downside, if I understand the PBS website correctly, it would be potentially expensive.

      If you can't get azithromycin, that's a shame as a lot of people (not me though sadly) find it works very well.

      Another option is montelukast, trade name Singulair. It's a tablet that works very well in about 10% of people, targeting a specific inflammation pathway involved in some people's asthma. Works for me and allows me to reduce my inhaled steroids. 

      That's just the baseline medicines. However, of more concern to me is how long these coughs have been going on for. Can I just ask, are you productive (approx how much) and what colour is the sputum? Have you had the sputum samples sent to the lab to identify the bugs? If so, is there anything you tend to grow? Finally, when you had the HRCT  done was  there anything apart from the bronchiectasis?

      Clear lungs!

      Sam

    • nanooskar
      nanooskar sam90709

      Posted

      Sorry to take so long to get back to you Sam...re sputum..that was part of my quandry..what was coming up was just a cream colour and not a lot of it..but I would cough and cough and it felt like I had a 'block' low down in my right lung area..My doctor stopped Spiriva and  started me on Anoro Eliptica bronc-dialator on wednesday. Amazed by the result..the 'block' seemed to break up after 2 doses..by yesterday I was coughing up'oldblood' streaked stinky dark brown muck.today it is freely being coughed up , volume is more, colour lighter..and I am able to breath more freely..actually got 5 hrs sleep last night. So I am pleased, to say the least..
    • sam90709
      sam90709 nanooskar

      Posted

      Well that's a result! Oh, and good luck tonight as well ... I fear you're going to need it against the all blacks! Cheers S
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