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Does anyone have experience of taking Acetycystine, prednisolone and alendronic acid for IPF

Posted , 4 users are following.

jean69571
jean69571

Eg: dental and nasal problems

0 likes, 6 replies

6 Replies

  • alan75679
    alan75679

    Posted

    Yes , i take all of these plus others...over two years i have been diagnosed , and in that time my gums have receded especially on my bottom teeth, making them even more sensitive , which means more dentist visits ...a double problem as now have more teeth problems , but bigger problems lying down or keeping mouth open while on oxygen 24/7 ....../prednisolone causes big problems with the skin ,slightest bump ,knock or even the dog tapping with her paw me for attention , raises large blood welts which take fore-ever to clear by then more have been added....so i presume we are not the only suffers.
  • jean69571
    jean69571

    Posted

    Hi Alan, yes I have the same problem with bruising. I am not as far on in this as you, when I was diagnosed with it over two years ago it was in the early stages. Im not on oxygen yet thankfully, but know I will be at some point
  • alan75679
    alan75679

    Posted

    Hi Jean , glad to hear that ...you may be lucky and drag it out for years before it gets to my stage ..... i'm now on elective hospital ...out for 6weeks in for two ...... but if you see me you would think there was nothing wrong till i try to walk about without oxygen (5 -6 yards )....was glad to hear your not at a bad stage , anything you want to discuss ..even at a later stage please ...please feel free to ask ...cheers alan
  • jean69571
    jean69571

    Posted

    Thanks Alan, it's nice to know there is someone who can relate to how Im feeling. I don't think the disease is that common is it. Sorry you are having to keep going into hospital it cant be easy for you.

    Thanks again for being there

    Jean

  • neville93106
    neville93106 jean69571

    Posted

    Yes, I have IPF and take prednisolone, which is a steroid.  I have no problems with it, but I tolerate medicines well and do not have any gastric side effects.  I am being monitored for the potential changes in blood sugar that taking steroids can provoke due to causing diabetes.  So far no trouble.  I believe that the other drugs you mention are nit effective following a meta-analysis of clinical trials as reported in the Canadian Medical Journal.

    however the most important new drug is Pirfenidone, sold as Esbriet which in my case seems to be most effective and to have few unpleasant dude effects, just what feels like a mild hangover.

    I should add that I live in France where the medication us paid for completely by the medical system.  It us a very expensive drug.  It received rave reviews in the New Englad Journal of Medicine in May 2014

    good luck.

    Neville

    • neville93106
      neville93106

      Posted

      Sorry about mis-spellings in my earlier reply.  I meant of course "side effects" not " dude effects"!
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