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My father was diagnosed, but meds haven't help at all?

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Hoffmane21
Hoffmane21

My father was diagnosed about 4 weeks ago. In that time he has gone extremely downhill. He has been coughing for over 10 years. They told him he was 85% FVC predicted. He is currently on Sulfamethoxazole for infection, prednisone, and pirfenidone to slow the scarring. They also gave him a rescue inhaler, but told him to only use it 2x per day, which doesn't seem right if he finds he can't breath. They did not give him a second inhaler either. He also has oxygen tanks. In the past 4 weeks he has become almost unable to speak. He whispers out words one at a time and can barely get them out. From what I understood, 85% was MILD. But this doesn't seem mild and is progressing very quickly. He doesn't have an appointment until next month. He only has basic Medicaid through the VA hospital in California. IS there anything else they could be trying?

0 likes, 6 replies

6 Replies

  • epictetus1939
    epictetus1939 Hoffmane21

    Posted

    This is a long shot but you could check for acid reflux.   A good dose of lansoprazole and Peptac will stop acid getting to the Larynx and into the lungs.  It did it for me and my FVC is 95% but I had lung and voice problems caused by the acid getting up my throat.
  • bob80691
    bob80691 Hoffmane21

    Posted

    Hi Hoffmane21:  

    Very sorry to hear of your Father's condition.   I do not profess to understand the drug combination your father is on but I am surprised that he is on Predisone as well as Pirfenidone (known as Esbriet).  Also the internet says that Sulfamethoxazole is rarely used on its own due to the resistance shown by bacteria to its use.  It is more commonly used in combination with Trimethoprim to fight infection.  Four weeks on Esbriet is not long enough for any impact to be seen.

    Given your description of your Father's condition I'm also surprised he could successfully complete his Lung Function Test that determined his FVC to be 85% of predicted norm.

    I would suggest 2 things:

    1) Have a consultation with your Pharmasist  ask some pointed questions about the drug combination.

    2) Ask for an earlier appointment with the VA BUT make sure he is seen by a lung specialist and not just a regular Physician.

     

  • Reglois
    Reglois Hoffmane21

    Posted

    So sorry to hear that your father is in such a bad way.  10 years of coughing is insane.  I started coughing in January 2018 and was diagnosed a month ago.  Seems that I have CPFE, Emphysema and Pulmonary Fibrosis (known cause) both fairly advanced, at the end of the month I will be on both the drugs your father is on, the prednisolone, slightly different spelling here, has been a wonder drug for me, no longer cough.  I have completely changed my diet to help with the severe acid reflux, no longer have processed foods nor anything made with flour, no acid reflux.  I was given a Symbicort inhaler, right at the beginning of investigations, as I really couldn't breathe  but it seems I am allergic to brocho dilators and from what I have read they are not good for my condition, in fact exacerbate it.  I have now been given a prognosis of 2 to 5 years,  the two diseases combined with asthma and my age 72, the former being the more likely, the fact that I am a woman is of help and I am determined to prove them wrong, I think a positive attitude and appropriate diet and exercise as best I can, hard living in the mountains, no flat surfaces, good air though,  is more of a healer than anything.  Wish your father luck

     

  • Reglois
    Reglois Hoffmane21

    Posted

    P.S.

    Prednisolone, is only of help if given in the right dose, a lot of ordinary doctors prescribe far to high a dose apparently, I was on a dose of 4 per day, (doctor), before investigations began, no help at all, I am now under the care of the highest specialist in my country, luckily only an hours drive away, and am now on 1/2 a tablet and it has been a miracle for me.

    • Hoffmane21
      Hoffmane21 Reglois

      Posted

      It's prednisone, not prednisolone. Is there a difference? I'll have to research that.

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