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    • #31348
      Kris manian
      Participant

      I am diagnosed with IDL in the past couple of weeks. But my physician started off with immune suppression and non inflammatory drugs. No anti. Fibrotic medicines yet, even though I asked for it.
      she says only after stabilizing anti fibrotic scan be given.
      is this true?

      thanks

    • #31375
      Christie Patient
      Moderator

      Hi Kris, I’m not a doctor, but that sounds like a reasonable place to start to me, especially if your diagnosis is non-specific ILD. If you are diagnosed definitively with PF/IPF, then anti-fibrotics should certainly be in the discussion. There are many types of ILDs that may not benefit from them, however. Your doctor should be able to answer those types of questions, but if your gut says otherwise, definitely get a second opinion. Docs aren’t perfect 🙂

    • #31384
      Donald Salzberg MD
      Participant

      Dear Kris:

      I do agree with what Christine said in her reply. I’m a physician (retired Ophthalmologist) but I’ve continued to learn about IPF/ILDs. A high-definition CT can show a classic pattern c/w IPF. My case was not classic so initially my diagnosis was HP (hypersensitivity pneumonitis). That proposed therapy (steroids) was very different than IPF so I asked for the VATS lung biopsy which showed I had IPF and not HP. The only truly approved meds for IPF are the anti-fibrotic meds (OFEV & Perfenidone). I don’t agree that you need to “stabilize the IPF” before one starts anti-fibrotic therapy but you need to have a definitive diagnosis of IPF to subject yourself to these meds.

      Christine—by the way— I was a perfect doctor !!!!  Kidding if course. Everything points to using anti-fibrotic EARLY ON its a definite benefit in the long run. Once things get much worse, rarely do you get an improvement.

      DON SALZBERG MD

    • #31386
      Annette
      Participant

      I have just been diagnosed with interstitual lung disease in January and I just received my first prescription of OFEV. I am very nervous about tthe side effects of taking the meds but I know I need to.

      Anyone have advice on what to or not to do when first starting?

    • #31390
      Donald Salzberg MD
      Participant

      Annette:

      You state you have ILD and to be started on OFEV. Can I assume you were definitively diagnosed with IPF?  I take a Zofran for nausea every morning w/OFEV. Don’t take the meds on an empty stomach. Are you b starting the 150mg or 100mg. The benefits outweigh the SE. Keep a watch on your liver enzymes and watch alcohol intake. I’m a sun worshipper so I avoided Esbriet. Good luck. Maybe I’m very lucky to have minimal SE.

      • #31398
        Annette
        Participant

        Yes I had lung biopsy surgery mid January and was diagnosed with Usual interstitual pneumonia…UIP. For the last 2 months Ive been trying to get approval from my insurance company to pay for the Ofev. I just got my first bottle on Tuesday. I have a family ski trip planned for the first week in April… I am thinking that I will wait until then to start taking it. Do you think that is a good idea? Thank you so much for the information…I am very nervous about all of this.

        • #31408

          Hi Annette:

          It’s hard to say whether or not waiting until April will make a difference or not. Some people’s fibrosis progresses slowly and therefore, waiting two weeks likely isn’t a big deal but others’ progress quickly. Are you able to circle back to your physician and confirm that you received the OFEV and ask him/her if waiting until April to start it will cause any issues? Most are understanding that the side effects of OFEV can be rough and that you’d like to enjoy your ski trip. I can’t give advice as I’m not an MD so connecting back to your physician is likely best in this scenario.

        • #31414
          Annette
          Participant

          Thank you…I’m not really worried about the progression since my case is in its beginning stages. I was more worried about the side effects. I spoke with my pulmonologist and he said it was fine but I was wondering more about your experience with the side effects. I just want to be ready for anything.

          I appreciate your  response and any other advice.

    • #31391
      Kris manian
      Participant

      Dear Don and Christie,

      thank you very much for your kind and valuable response to my question. I really appreciate this support group for sharing their knowledge and experiences.

      Don, can you elaborate about theVATS lung biopsy?
      thank you very much

      kris

    • #31392
      Donald Salzberg MD
      Participant

      Hi Kris

      The VATS (video-assisted thoracic surgery) is done under general anesthesia. The right lung ? is collapsed and a biopsy of the lung base is taken for a definitive diagnosis. A bronchoscopy (through the tracea) there is rarely enough tissue to make the diagnosis of IPF as the tissue from the base of the lung is needed. Requires hospitalization for 2-4 days. A chest tube in place to inflate the lung. Moderately painful but unless you have a classical presentation on XRay, the CT scan may not give a definitive diagnosis. ILD (and there are many) all have fibrosis but IPF has A distinct pathological appearance and for me, may have saved me years as I would have been misdiagnosed and mistreated. It’s also important to rule out stuff like sarcoid, scleroderma, Rheumatic disease, exposure issues (molds, asbestos, Covid etc) as they all create pulmonary fibrosis but are all often treated differently than IPF

      • #31396
        Kris manian
        Participant

        Thanks Don for that info. My doc says since I am already on oxygen it is not advisable to undergo biopsy. Is that correct?
        thanks

        Kris

    • #31393
      Linda Maguire
      Participant

      Kris,

      Are you seeing a pulmonologist & have you had a high resolution CT scan?  As mentioned by Don, there are multiple types of ILD’s and you don’t want to start an anti-fibrotic without a definitive diagnosis of IPF/PF.  I, too, had a VATS biopsy, however if there is a clear cut pattern of IPF on your HRCT, that may not be necessary.  I was diagnosed with IPF 6 years ago & sought a 2nd opinion at National Jewish Hospital in Denver.  Because I had an unusual presentation of IPF & no risk factors, they recommended that I have PFT’s & 6 min. walks every 4-6 months & not start medication unless my numbers started to decline.  I have been stable & am not on any anti-fibrotic meds.  I only take Prilosec twice daily for silent GERD, which was diagnosed at the same time as the IPF.  It is thought to possibly be the cause of my fibrosis.  You would be wise to have a thorough work-up & definitive diagnosis before starting Esbriet or Ofev & make sure you see a pulmonologist not just a general physician.  Best of luck, & this forum is a great place for support & feedback!

      • #31397
        Kris manian
        Participant

        Thanks Linda for that great feedback information.
        My ILD is progressing way too fast. In a matter of 6 months I went from almost normal, only go out of breath when going up hill to not able to walk a few feet breathing heavy and loosing oxygen level below 90.

        so I don’t have time to wait and do further tests. Will taking Ofer at this stage help or hinder, you think?

         

        thanks

        Kris

        • #31501
          Linda Maguire
          Participant

          Kris,

          If you have a definitive diagnosis of IPF, taking Ofev or Esbriet might help.  It sounds as if your shortness of breath is progressing rapidly!  Be aware that anti-fibrotic meds don’t reverse fibrosis, they only slow the progression.  I would try to get more information from your pulmonologist about why your breathing might be deteriorating so rapidly! (i.e. is there something else going on?)  Also, you should be aware that getting insurance to approve the anti-fibrotic meds sometimes takes time, as they are VERY expensive!  In the meantime, you might try some of the breathing exercises mentioned on this forum, as anything you can do to improve your lung function with exercise or breathing techniques has been shown to be helpful.  Has your pulmonologist referred you for pulmonary rehab?

    • #31425
      Donald Salzberg MD
      Participant

      Hi Kris/Linda

      I agree with Linda that a clear cut CT appearance may be enough to make a diagnosis of IPF w/o the biopsy. I also can’t stress the importance of seeing a Pulmonologist who treats ILDs!  It seems many types of fibrotic lung disease benefit from OFEV (and Esbriet) so Although you are stable, anti-fibrotic therapy (done early) helps reduce lung damage over time. I also very much  agree that GERD and sleep apnea (Im treated for both) CONTRIBUTE to ILDs but are likely not the sole cause. I feel anyone with an ILD be evaluated for GERD and obstructive sleep apnea. OFEV also has been proven to reduce the likeliness of acute exacerbations.
      Kris Im so sorry you are progressing.  I see no reason not to start OFEV to try to hold on to your lung function that you still have. When and how  was your ILD diagnosed. How is your BMI and how old are you??

      DON SALZBERG MD

    • #31426
      Donald Salzberg MD
      Participant

      Kris

      regarding a biopsy it nay be too risky for you but that also depends on your cardiac status. If your CT scan is classic the biopsy may be not. When we’re you diagnosed with IPF?

      DON SALZBERG  MD

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