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Diagnosed 2 days ago

Posted , 6 users are following.

Reglois
Reglois

I am living abroad and have been diagnosed with emphysema and pulmonary fibrosis, on Prednisolone but at the end of August I will be put on a treatment where I cannot go out in the sun, any one else on this, I don't yet know the name of the treatment

 

0 likes, 12 replies

12 Replies

  • marcus72
    marcus72 Reglois

    Posted

    Hi Reglois, I think the drug you are asking about is Esbriet, the chemical name is Pirfenidone, it is used to slow the progression of PF.  One of the side effects is sensitivity to the sun.  

    Prednisone is also used as a corticosteroid to suppress the immune system and inflamation which is also used to treat emphysema and PF.  

    • Reglois
      Reglois marcus72

      Posted

      Thank you Marcus

      I have been doing a LOT of research in the last couple of days, pinned down the cause of my PF, just knew it was linked to my old job  this what I found   *****Acute exposure to high concentrations of zinc chloride fume can lead to Adult Respiratory Distress Syndrome leading to pulmonary fibrosis and death.***** expose for 25 years to very high concentrations. Looking at the names of the drugs prescribed/approved here it is highly likely that I will be put on Pirfenidone, slightly different spellings here (France) for both drugs.

  • john80001
    john80001 Reglois

    Posted

    Hello Reglois

    I am sory to hear of your diagnosis. 

    I was due to go on medication last April 2017 and would have been unable to go out in the sun. I was diagnosed with PF three years ago but suspect I have it about 5 years from the symptoms I had. Luckily last year the Irish Health Board approved OFEV which allows me go in the sun. Tomorrow I m heading to south of France . 

    There are side effects to OFEV(it does not effect me in any way) and maybe with your emphysema you may not be suitable. I would ask your consultant . I wish you well and I know you may be down now but live every day as best you can . That is what I do and am enjoying my life with family and friends.  Regards 

    • Reglois
      Reglois john80001

      Posted

      Thank you John

      Je vous souhaitez bon voyage

      Been over here 28 years now, can you bring our good weather back !!!  been very English of late, too much rain.

      Luckily for me I am not a *down* sort of person, I intend to fight this with everything I have. I adopt the most severely abused dogs, physically and/or mentally, that no one else will take on I HAVE to out live them. I have 4, one will not make it past this summer, but the others are youngish 8,9 and 9, all longish lived breeds

      Enjoy your holiday.

  • rebbyreb99
    rebbyreb99 Reglois

    Posted

    My husband was diagnosed with emphysema and Idiopathic Pulmonary Fibrosis in October 2014.  He was prescribed Perifidone.  He was informed that he must be very careful while taking this medication that being in the sun could cause problems.  At the beginning it did. He came down with a very bad rash which ended up leaving a scar.  He now wears a hat and wears a strong SPF sunscreen and he has not had anymore problems.    If this is what you are taking, you just have to be very cautious out in the sun.

    God bless

    • Reglois
      Reglois rebbyreb99

      Posted

      Thank you rebbyreb,

      I don't yet know the name of the treatment that they are planning to give me but I thank you for clearing up my quandary, was hoping that a good strong sun block would be the answer,  can't imagine having to cover up in the sun out here, does he use the block all year round just in case?

    • rebbyreb99
      rebbyreb99 Reglois

      Posted

      Yes,  since we live in Phoenix Arizona and he likes to golf.  You should just plan on wearing it all year round.  He uses a 45 SPF.
  • bob80691
    bob80691 Reglois

    Posted

    Hi Reglois:

    Sorry to hear of your diagnosis.  You are the secnd person recently who has said they have been prescribed Prednisolone .  I have never heard of this medication, especially not for pulmonary fibrosis.  II also have never heard of ANY drug to treat either of these diseases that would prevent you going into the sun.  You have said you are abroad but haven't said where.

    You can look up Prednisolone  on the internet and you can also look-up the 2 drugs approved to treat Idiopathic Pulmonary Fibrosis (IPF).  They are Ofev (nintedanib) and Esbriet (pirfenidone),   They are approved in the US, Canada and most countries in Europe.  I'm not sure of approval in other countries.  Both of these drugs are not a cure (there is no cure( but they slow down the progression of IFP.

    Talk to your physician about them and find out if they are approved where you are.  Note:  Both drugs are very expensive.

    Good luck.

     

    • Reglois
      Reglois bob80691

      Posted

      Thank you Bob

      I do believe that the drug I will be put on  in August is Pirfenidone it clearly states that you must cover up or use total block sun cream at all times. I am fully aware there is no cure for either of my lung diseases Prednisolone maybe a slightly different spelling here in France but as far as I know it is a very similar spelling in the UK after three days on a low dose of it (steroid) I have almost stopped coughing and can actually breathe marvellous..  I am on 100% cover under the health system here so don't pay a penny.

      I haven't got the Idiopathic for of PF I know what caused it as it was high exposure to zinc chloride in my job from the age of 19 to 45.

  • bob80691
    bob80691 Reglois

    Posted

    That explains it.  I wish you good luck going forward and stay in touch even if you just need someone to talk to.
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