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long term steroids

Posted , 6 users are following.

david_25160
david_25160

hello, I have mild bronchiectasis, and asthma, I'm an ex smoker, stopped 7 years approx, my troubles lie with my doctor as in reluctance to ever prescribe antibioticts, and rarely steroids. a few weeks back I got a 5 day course of Prednisilone due to wheeze, persistent cough, painful feelings in my lung/back area, well they helped but only for a few days and I'm back to square 1, can these steroids be given for more than 5 days at a time, perhaps on a reduced dose or something? I seriously get more help on here from you guys n gals than at the doctors, I almost dread going for fear of being sent home with nothing yet again, any advice please. thankyou

1 like, 18 replies

18 Replies

  • simon74257
    simon74257 david_25160

    Posted

    Hi David

    As far as i am aware to steroid tablets are really bad for you over anything than a sharp short course of a week at a time.

    They are meant to rotate your antibiotics so you don't get immune for example they rotate ammoxycillin and doxycyclin for me as they are affective on the bugs my sputumn sample mostly grows.

    These guys on here have advised me to see a bronciectisis specialist so i have told my gp to refer me which he has. See him in march. If you havnt yet you should request that.

    Simon

  • steve62514
    steve62514 david_25160

    Posted

    5 days seems a lot shorter than my own experience. 3 weeks to 6 weeks on the three occasions they have been prescribed for me - half f the prescribing eriod being a 'tailing down' dosage (slightly less each 5 days).

    Steroids are not particularly 'dangerous' if used parsimoniously. Should be no problems with one course a year. Above that and your doctor will be balancing the potential rewards of steroid use (maiily targets reduction of inflamation in the body) against the risks (increased exposure to infections plus potential for bone-thinnning).

    • simon74257
      simon74257 steve62514

      Posted

      The bone thinning sounds scary, pluss it said there were many complications in long term use but my g.p reasured me that that is not the case in short bursts and that there is no tapering needed in a 5 day high dose of steroids.

      I guess everything has its pros and cons. I just don't see why we can't use inhaled steroids all the time instead of tablets seen as our lungs are the only area needing treatment.

      It could be worse though guys, we can see hear smell taste walk love and live so we have to always count our blessings. I swear i am so negative sometimes and worry way to much but im trying to change. Hope they find a cure for us all.

      Sy

    • steve62514
      steve62514 simon74257

      Posted

      "I just don't see why we can't use inhaled steroids all the time instead of tablets".

      There are inhaled steroids in the form of inhaled corciscosteroid. Predinisolone steroid tablet is a corciscosteroid btw. "Symbicort" (TM) is an Astra-Zeneca combination inhaler of corciscosteroid and bronchodilator. I see from the instruction leaflet that there is reference made to the availability of other (single drug) corciscosteroid or bronchodilator inhalers.

      I use Symbicort for my bronchex and every time I try to reduce my dose or cut it out my chest complains and asks to have it back! It is prescribed for asthma and COPD - seems odd to me that it's use for bronchex is not more widely recognised. It was prescribed for me by a Thai pulmonolgist at a time when my condition had not been fully assessed as bronchex. Successive Thai pulmonologists and then my Papworth UK lung defence team (pulmonologist, cancer, lymphoma and immunology consultants have all seen me over the last 18 months) have not sought to challenge my use of it.

      I suspect it's a cost issue for those in health-free-to-user countries like the UK. In Thailand I have now narrowed down a source that provides the inhaler at a cost of £22 a month (US$ 33 to internationalise that). It would be £40 a month in a Thai hospital and I suspect it will be about that cost in a UK pharmacy on private prescription. Worth trying if you can find a doctor or pharmacist to saanction you trialling it or maybe find a single drug corciscosteroid inhaler.

      Worth noting that inhalents typically are for short term use and have an effectiveness pattern of a few hours rather than day-long. Thus a low dose of prednisolone tablets would last 24 hours, whereas I use two puffs of Symbicort when I've had breakfast and in the mid evening. Symbicort can be used as a rescue inhaler as well if you are feeling a touch of inflamation or are wheezing toomuch - max dose is 8 puffs a day. I have not actually used it as a rescue jobbie as I rarely need that and if I do the much cheaper regular broncodilator inghalers seem to do the job.

      I'm a non-resident Brit btw, so using the NHS for free health is restricted to GP visits (no need when I have Papworth on UK visits who understand the disease) and emergency rooms at hospitals. I have been a great supporter of the UK NHS approach but I now believe that I have benefitted (from being pushed to different avenues of the private sector by my non-residence) from becming detached from it. Seems that it's cost and GP focus does not necessarily dliver optimal care solutions.

      [My full regular treatment pattern is

      full or half or (rarely nil) dose antib (various, but Levafloxacin is my regular 'rescue' antibi)

      4 puffs daily of Symbicort, 2 x 400g of "Puroxan", a doxofylline long acting bronchodilator which is similar to (but IMO better than) theophylline, and

      1x600mg of acetylsteine mucilytic (same as carbocysteine)].

    • simon74257
      simon74257 steve62514

      Posted

      Yes but i mean we get given a lot of oral medication that is non inhalable and can damage the rest of our undamaged organs ie steroids, antibiotics, have you read the side effects on the steroids? Long term use is for people that are terminaly ill and if you do use them for over a month and do not taper you risk a coma!!! A coma!!! Jeeeez how bad can it get. I have relvar, mucodyne and as much of the breathing cycles or the accapella as i can motivate my self to do. My peakflow use to be 540 a few years back now im stuck at 500 so i am guess the bronciectisis has reduced my capactity. : (

      Sy

  • Russell27NOLA
    Russell27NOLA david_25160

    Posted

    David, I think that long term steroid use has many side effects and you can do better by getting the right doctor to prescribe the antibiotics as you need them. But it is more complicated than that. Look at the posts on our site and you will beging to put together a plan for your self that will be very benifical to you.

    Let me know about your progress.

    Best

    Russ

  • marion49836
    marion49836 david_25160

    Posted

    Hi David

    i had steroids and antibiotics for 10 days and felt wonderful while taking them. But a couple of days later I gradually went back to square 1  I now have to go back to doctor to see what the problem is. I've had brochiactesi fo 10 years an this is the first time I've had to repeat visit to doctor

    • simon74257
      simon74257 marion49836

      Posted

      I think it's this weather you know and season. There are bugs everywhere. Wait till spring we will all be much happier in sure.
  • david_25160
    david_25160

    Posted

    replying to myself here, truely lost the plot. just to add that I do take Symbicort one puff twice daily, and perhaps it is that that needs increasing for a while, anyway doctors later today so fingers crossed for some help, and may I say thankyou so much to each and every one of you who replied, bless your cotton socks.
  • Russell27NOLA
    Russell27NOLA david_25160

    Posted

    David, I thought you ment the tablet form or injections. I have used Asmanex and also a steroid soultion the I lavage my sinuses with nightly.

    Hope this helps,

    Russ

    • david_25160
      david_25160 Russell27NOLA

      Posted

      Hello Russ, yes I did mean tablet form of Prednisilone steroid, and yesterday my doctor said that I did not have an infection, but that my lungs were inflamed, so I have more Prednisilone tablets, this time they are 5mg, last ones were 2.5 mg, also I have to double the dose of the Symbicort 400/12 from 1 to 2 puffs morning and night. It confuses me at times Russ because I have asthma on top of the Bronchix, so knowing just what is causing problems at any given time is difficult, thankyou for time Russ, and best wishes for thew future.
    • david_25160
      david_25160

      Posted

      excuse the spelling ^^ still early for me!!

       

    • Russell27NOLA
      Russell27NOLA david_25160

      Posted

      David, it is a cluster of symptoms and  inflamation is one of the big ones.

      I saw my pulmonogist today and he did not seem so concerned with my symptoms, but I got him to order a sputum specimen for tomorrorw to see if I have any bugs that can be treated and especially Pseudomonas. He has never done that and it is part of the protocol in the US and England.

      I may have to find other physicians to do a consult with him as suggested by the protocols. I am seeing that several of us on this site have to really educate ourselves and push for what we need. So David if are not already doing this, follow what we are seeing on our site and begin to be your own best advocate. Learn as much as you can. I have learned tons in only one week. I say ask your doctor what he is treating with each med. Some overlap. Bronchodialators help with the asthma but and Bronchi as do steroids. Read all the posts that you can. It make you more confident and more bold in your on treatment. All of us on this site, I believe, are in this together. 

      Let me know what you find out.

      Best

      Russ

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