Not sure whether to start Pirfenidone nextweek

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Been diagnosed now with CPFE and every thing I have read seems to show that this treatment has not had enough trials for this combination of lung diseases, at the moment I feel better than I have done in ages and am loathe to go on to something that may make me sick again, I am allergic to many medications.  Any one any experience of the two diseases combined ?  (emphysema and Pulmonary Fibrosis, non idiopathic) plus treatment

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  • Posted

    Hi Reglois:

    I have both IPF and Emphysema  and I am on the medication but bear in mind that the medication is only to treat my IPF, it has nothing to do with the treatment of my Emphysema.

    Also i'm a little surprised.  I am not a physician but Pirfenidone (or OFEV as it is marketed here in North America) is a drug developed SPECIFICALLY for the treatment of IFP and not for the treatment of PF.   This medication has been widely tested and is in active use with IPF patients here is North America and I believe in Europe also.  In regard to treating PF I can only suggest your double check with your physician or with the drug's manufacturer.

    Good luck.

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    • Posted

      Thanks Bob, that is what I have read, not used to treat CPFE could in fact be harmful, I have industrial relatedCPFE and can find absolutely nothing on it.  Bearing in mind I live abroad so everything for me is in a foreign language, I am fairly fluent in French but this is medical and technical French, not the same thing at all.  So maybe I will have to get in touch with the manufacturer.  I am quite at ease with the fact that CPFE is dire and life shortening, just want to feel well for as long as I can.  By the way I also have asthma, just to top it all off  lol. I do not need to worry about finances as I have been put on 100% free care but also don't want to burden the system as it will cost the state 2,000 odd  Euros per week I have read.  If I do take the meds Brexit is  a real worry, as part of my treatment will be paid for by Great Britain or will it when they withdraw from Europe.?

      Thanks once again  Hope you continue to stay as well as you can   Sue

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  • Posted

    Sue:

    Please do not refuse the medication until you double check either with your physician or the manufacturer.  There may well be facts I am not aware of and the last thing I want to do is lead you in the wrong direction.  Also don't worry about burdening the state....you have made your contribution through taxes and deserve whatever treatment at whatever cost.

    If you are able to confirm the drug is appropriate I can tell you that I have had no side effects and I am halfway through my second month.  Just make sure you take with food and sufficient food to give your stomach a good base.

    I'm in Canada and when you go on the drug here, you are assigned a nurse by the manufacturer who checks with you frequently and is available to you also.  Plus you will be monitored by your doctor.

    Good luck and stay in touch.

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    • Posted

      Thank you Bob, I know I won't have the luxury of a nurse or anything like that, of course I know I will be monitored. I live very out in the sticks. Don't get me wrong I have been very fortunate to be diagnosed so quickly, my own fault it has taken 5 years as I really don't like going to the doctors, was VERY sick 5 years ago and hospitalized three times in a three month period, I now know these were what they call exacerbations, refused to stay in hospital as I am widowed and have dogs. Until recently could breathe fairly well, live in the mountains and could walk the dogs with no more than a bit of breathlessness on steep climbs, caught a virus at Christmas, ignored it and have had yet another exacerbation and now struggle to breathe at all normally. Long uphill walks are very much a thing of the past. My thinking now is I would rather have quality over quantity and as I am nearly always so allergic to meds I am loathe to try, and as an old un think money could be better spent on some one younger. Also as an *immigrant* even though I have been here 28 years, I have not paid into the health system to any great extent and still rely on GB in a *reciprocal agreement*  GB may well refuse to pay.

      Wish you the very best and hope that the drug works for you and slows things down I really do please keep in touch. 

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