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    • #13007
      Kathy
      Participant

      Was diagnosed with IPF 3 1/2 yrs ago – have done well – started Ofev 3 months ago – doctor said it was better to start early rather than waiting for more changes.  Now I have RA (rhuematoid arthritis) – and wonder if Ofev will still be effective.  Given 5 mg Prednisone 3X a day – – and Paquanil (spelling ?) 2X day – – have not experienced any side effects except diarrhea a couple of times.   Have a doctors apt next week – – getting where I am always fearful of what they are going to say next.  So many new drugs in trials as add ons to Ofev that could really benefit lung scarring progression and healing that I am clinging to all hope. Was wonderful to read that there are people that were diagnosed 10 + years still doing well.  Just wondering if there are other people with arthritis and how you are coping.

      • This topic was modified 3 years, 1 month ago by Kathy.
    • #13025

      Hi Kathy,

      Thanks so much for connecting with us through our forum threads, it is always great to hear from you!

      I’m glad you were able to start on the OFEV, as I’ve heard the same thing: it is better to start early than reactively go on it when the IPF progression has already taken place or is rapidly happening. Have you had any side effects since starting the OFEV specifically? I know you mentioned no side effects but I wasn’t sure if you were referencing the prednisone or Paquanil.

      Were you diagnosed with RA after IPF? I’ve definitely heard of this but I personally don’t understand the link between the two enough to know whether or not they are linked.

      I also feel fearful or anxious of ALL my doctors appointments now, since they are so frequent and even when I don’t receive bad news, I just feel tired of taking in all the information and having to act on everything. It is exhausting, isn’t it?

      I LOVE hearing others’ stories about living a long time with IPF, like you, it gives me so much hope. If it is helpful, this past weekend I met a wonderful family from the Canadian east cost. As we were talking, she told me of a 32 year old young woman with IPF (just a little older than me) who had a successful transplant over 10 years ago and is doing incredibly well. This completely renewed my hope, exactly when I needed it. There are other members of this forum who have been living with IPF for 10, 12 or some even 18 years!

      Hang in there, and know that we’re all here for you!
      Kindest regards,
      Charlene.

    • #13037
      Kathy
      Participant

      Thanks Charlene – – I had my appt with my Pulmotologist is March – I had just started having joint pain in my shoulders and fingers and showed him the swelling but he quickly looked at my blood work 3 yrs earlier when I first saw him and said that I was RA negative therefore couldn’t have it and to see my family doctor.  It was at this time I was put on Ofev and was terrified because in past apts. he had always said something negative about the earlier med not being beneficial and I did not know that Ofev and Esbriet even existed – so therefore thought why bother taking it.  My counselor that contacted me to guide me was wonderful – and when I said but if this med is not beneficial why even take it – – I will always remember her explosive response – – THAT’S NOT TRUE – and went on to explain how others were responding.  I know it only slows things down – but I have been holding steady without the drug for 3 yrs so hope that having only been on it for 3 months it is going to give me even more time. Time enough for a new drug or additive like some that are in trials that are very promising.  I am 69 – my husband just retired when I was diagnosed – we have built our beautiful new home on our farm that we share with horses, dogs, cats, and cows.  Unfortunately I now know that breathing all the dust from the barn cleaning stalls without a mask – dust from feed & hay – insecticides are all probably what caused my lung damage.  Now I am aware and EXTREMELY careful – always wearing a mask.  When I see people working in dusty places – the granite installers in our house – the wood mill cutting timber – the wood shaving company that bags shavings for betting – I tell them – – YOU HAVE GOT TO PROTECT YOUR LUNGS and explain why.  Well got off course here lol – but no problem with the Ofev  – Prednisone – Plaqunil but I do stagger them which gets tiring seems like I’m always taking a pill – the specialty pharmacy said I could take Ofev & Plaqunil together but that’s when I had some diarrhea so just to avoid any problem I take them seperately with a little food.  The pharmacist said plain greek yogurt was a go to food to take with med but I think it was part of the diarrhea problem.  Because my meds are every 12 hours I have found just having part of a can of soup and putting the rest in the fridge for later has worked really well – something warm not cold – and not a lot of liquid like a glass of milk.  For me anyhow.  Hope this helps someone.

      • #13055

        Hi Kathy,

        Thanks so much for taking the time to reply. I hope this note finds you doing alright today, and I appreciate the sharing of your experiences with us!

        Sometimes I wish doctors would be more thorough when examining not only our bloodwork, but understanding and listening to our symptoms as well. This is one thing that I am so thankful for my Rhuematologist, she is so thorough and I’m very grateful but I am sorry to hear of your experience with the pulmonologist stating it couldn’t be RA. I hope I am interpreting your message correctly….

        Glad the nurse was able to calm your fears about the OFEV by outlining others’ success with this medication too. The counsellors who call with either of the anti-fibrotic medications are so kind, I agree! I too pray that the disease progression slows down for you after starting this medication so that either a cure is found (ideal!) or another medication is developed that gives patients like us even more hope. Your new home sounds beautiful, and it must be lovely sharing it with all those animals (coming from an animal lover) !! I am like you re: always wanting to protect my lungs in potentially hazardous environments! I wear a mask in a lot of different places and have just adjusted to the stares, OR I choose to educate why I am wearing a mask and hope others will do so as well, while they have healthy lungs.

        Thank you for sharing your experience with managing your medications, and taking a little food to go with it. I am sure it will help others, especially those new to taking OFEV or the other medications you mentioned. I can relate to your feeling of always taking a pill… I feel like between taking medications, charging my oxygen (POC), arranging for my tanks to be filled or going to doctors appointments, that having a chronic illness like PF is a full-time job.

        Wishing you all the best always, and look forward to continuing our chats on the forums 🙂
        Take care,
        Charlene.

    • #13049
      Sheila Blanchard
      Participant

      Hi Kathy, I was put on OFEV just after being diagnosed but due to severe diarrhea was taken off right now am not taking any Meds for IPF. Was discovered it was the acid reflux Meds (raperazolle)not sure if that is the right spelling that was causing the severe diarrhea when my magnesium was almost nil and ended up in the hospital. So as now I am only taking over the counter Meds.I have been living with IPF for two and a half years now. I also have type two Diabetes Kidney damage,and now been diagnosed with severe Sleep Apnea and am waiting for a Bpap or CPAP head gear oh also have Arthritis now am thinking what’s next.

      • #13056

        Hi Sheila,

        Thank you for connecting with us – it is great to hear from you, as always! 🙂

        I know your reply was to Kathy, however, I was curious about your experience with OFEV. Now that they determined the likely cause of the diarrhea, and hopefully have it under control a bit better, do you think you’ll restart on the OFEV for the management of your IPF at all? Just curious as you might be able to tolerate it better if the other drug that was causing the issues is ceased.

        Warmest regards,
        Charlene.

    • #13075
      Sheila Blanchard
      Participant

      Hi Charlene, I no longer have a diarrhea problem but my Pulmonary Dr. Isn’t putting me on any Meds for IPF right now as she doesn’t want to rock the boat  as my scarring  seems to be going slowly for now.I have asked to have a CT scan every year as I haven’t had one for two years, I want to know how much more scarring I have, I was diagnosed in June of 2016 by biopsy.Thanks Charlene

       

      • #13084

        Hi Sheila,

        Thanks for getting back to me and answering my questions. I suppose this makes sense – if you’re not experiencing a rapid progression of the disease, and starting the anti-fibrotic medications would only cause problematic symptoms for you, then probably best to avoid them and keep you feeling as well as possible. Did your doctor say that you would likely start them eventually, when the CT scan reveals an increase in scarring for you?

        Wishing you well, and glad to hear you’re advocating for your desire to have a CT yearly so you can track your  scarring progression.

        Kind regards,
        Charlene.

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