This topic contains 9 replies, has 3 voices, and was last updated by  Charlene Marshall 1 week, 5 days ago.

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  • #20353
     Charlene Marshall 
    Keymaster

    Since being diagnosed with idiopathic pulmonary fibrosis (IPF) a little over three years ago, I’ve become personally committed to reading literature and updates in the area(s) of research pertaining to IPF. I truly believe knowledge is power, and as patients, we often need to advocate for our healthcare and being abreast to the latest research and treatment options help in our advocacy efforts. Sometimes what I choose to read has to do with the “humanistic side” of this disease, focusing on coping skills and efforts to improve quality of life. Other times, I try and decipher the latest medical research to further understand the advances that are happening within the realm of pulmonary medicine.

    Since I don’t have a medical background, I can’t be certain that I understand the Risk Stratification Score (RISE) to it’s fullest extent, but: has anyone ever heard of this scoring system to help predict outcomes for IPF patients? A quick Google search describes the RISE scoring system as a framework that combines a number of different risk factors to create a broader profile of a patient, to help predict their survival and to further understand his or her complex needs. I recently read an article about using this framework to predict mortality in IPF patients undergoing lung transplant evaluation. You can read the full article HERE.

    Another article that focuses on the validation of the RISE framework, specifically pertaining to patients with IPF can be found HERE. Despite these two articles, and many others available on the internet with a brief search, I am surprised I’ve never heard of this in conversations with other patients or my physicians.

    What are your thoughts on the RISE framework?

    Has this been discussed with your doctor in the past, or have you ever heard of the RISE scoring system?

    Curious to hear from you.

  • #20399
     Linda Williams 
    Participant

    Charlene, I read the second article you hyperlinked and understood it better. The first one very technical. As I have never had a 6 min walk distance test, was diagnosed 15 months ago, but have determined I want no transplants. (?PAH also, seeing cardiologist July 30, 2019), I rather doubt my pulmonologist will see the need to do.  See him early October after a nother HRCT.  Seems to me once he gave me diagnosis of IPF all he wanted to do was get me on OFEV.  But due to needing results of bone marrow biopsy, I asked him to wait to see if I had to be treated for ? Waldenstrum’s non-hodgkins lymphoma.  When that dx was changed to observation by labwork every 3 months by hematologist oncologist to MGUS, I saw my pulmonologist again (3rd time) and he asked first thing how was I getting along on OFEV?  Seems to me he didn’t bother to review my chart prior to that visit.  After the HRCT in September and seeing him, I may be seeing another pulmonologist for consult.  Makes me wonder if the drs get a kickback for putting patient on OFEV.  Sorry, back  to your question, no I have heard nothing about RISE.  I really don’t feel I have had a substantial evaluation.  Seems something like this scale would help better compare each patient’s progress.  But like the article said with IPF  symptoms can change rapidly.  It was suggested in the more technical article re assessment of lung transplant patients that the LAS and RISE be done early after diagnosis.

    • #20470
       Charlene Marshall 
      Keymaster

      Hi Linda,

      Thanks for writing and sharing your thoughts on this topic thread. I’m really sorry your doctor was so adamant on starting Ofev, as opposed to exploring all the options with you. Has the doctor said why you haven’t had a 6 minute walk test done? It is usually a key test in determining a diagnosis of IPF, although perhaps not in all centers. Sadly, based on your experience and Keith’s (below), it also makes me wonder if the doctors benefit from the Ofev prescribed as well. It isn’t pleasant medication so it would really upset me if it was prescribed for patients who didn’t need to be taking it. Might you be able to secure a second opinion? There is nothing worse than feeling like your physician isn’t invested in your care or may not be right in their diagnosis. If you don’t feel comfortable with the physician, seeing someone else might be more helpful for you. Goodluck and keep us posted!
      Charlene.

  • #20412
     Keith Nelson 
    Participant

    Hello Charlene,

    I wonder about this? The Pulmonary Fibrosis Foundation had a database of patients, patients with IPF that it “was” maintaining on a voluntary basis. PFF stopped that process due to lack of funding. In the article above, it identifies:  “Healthcare organizations can take a shortcut through this part of the process by purchasing an off-the-shelf vendor solution for population health management, risk scoring, and risk stratification.  As interest in data-driven population health picks up, the number of vendors offering innovative, cost-effective products is on the rise, says KLAS.”  So, say your Dr. wants to generate a patient database, VENDORS are lurking everywhere to offer that “for-a-fee” service. There is so much complexity for the Dr. to initiate this process, and they all belong to larger, much, much more bureaucratic medical practices/clinics/hospitals/Universities, etc. there is scant chance of any practitioner ever being able to generate such a database of patients. Sadly!

    If the PFF already has the database, and lacks the funding to continue its use – that tells us all something – it is a marketing issue, not a patient-centered issue. In other words to generate the data, the end game, how it is going to be marketed seems to be an overriding criteria.

     

    As for Linda’s offering, my first Pulmonologist, upon diagnosis had the very same response “here, take ofev” and off we go. Nothing more!  I agree, I smell a rat in the ofev system, there is a reason these Pulmonologists are so eager to hit you with ofev and be off to the adverse symptom races!  In my case, I declined. My PCP went for a second opinion. We went to Oregon Health and Science University. They discovered the Pulmonologist was “wrong” with the initial diagnosis… imagine had I started their recommendation – ofev!  Rather, I have Nonspecific Interstitial Pneumonia – approached with different medications – prednisone and mycophenolate motefil.

    We are treading in very precarious waters!

    All the best Charlene and Linda,

     

    Keith

  • #20468
     Charlene Marshall 
    Keymaster

    Hi Keith,

    Thanks for sharing this, very interesting perspective! I didn’t take the RISE scoring system to be something that would compare your results to others or that a database would need to be generated for anything, more as though it was something used to predict your response to the disease based on other factors. I certainly could have misunderstood though, and can see how generating some sort of data-collection system could be a scam/cost doctors a lot of money if it enabled them to predict outcomes and compare them to other patients. I thought it was a very individualized tool but I maybe not. Sad that vendors lurk to “prey” on patients with health conditions, just so desperate for a cure, isn’t it?

    I’m so glad you had the initiative to seek a second opinion and not just follow through on the doctor’s “orders”. Good for you! Did you ever circle back and inform the physician how wrong he/she was? Not that he’d like that I’m sure but seriously, he should have maybe been a bit more thorough. Sad…

    Thanks for writing.
    Charlene.

  • #20477
     Linda Williams 
    Participant

    Thank you Charlene and Keith for encouraging me to seek a second opinion. I have been considering this but thought I would wait until after my next HRCT in late September and seeing him early October.  It will then be a year since having seen him.  I plan on asking him why a 6 min walk distance wasn’t done yet too.  I thought maybe I was just in denial thinking perhaps I do not have IPF and did ask him regarding other conditions to which he said no to all. Keith, I have a 2nd cousin with RA and diagnosis of NSIP too.  From her history that is a rough to deal with too.  At one point not long ago she was on 1,000 mg of Prednisone daily and really thought she would die if taken off that much. She ended up from small town hospital to a hospital in Lexington with a different pulmonologist caring for her. He decreased her down to 60/day and she got to go home after about 10 days. That pulmonologist apparently just as a hospitalist and referred her back to her original pulmonologist.  Myself, I would not return to him.  And I don’t think she is in that 2nd med you mentioned.  She gets quite anxious at times and I think that does not help her either.  Any suggestions for her?   She is on Xanax.

  • #20528
     Charlene Marshall 
    Keymaster

    Hi Linda,

    No problem, I’m glad that our discussions have helped you in your decision to potentially seek another opinion. Its so important that we’re comfortable and confident with our medical care, keep us posted on how the second opinion goes. I am also really curious why a 6-minute walk test wasn’t conducted, even to determine a baseline for you but perhaps each center is a bit different in their process? Hopefully not by too much though!

    Take care and let us know how things go 🙂
    Charlene.

  • #20537
     Linda Williams 
    Participant

    Charlene, will do. Linda Williams

  • #20654
     Linda Williams 
    Participant

    Charlene and Keith, I have another friend that was referred to the same pulmonologist I first saw too and after her CT the first thing she told me was to want to put her on OFEV.  She had taken another friend with her and both thought she should get 2nd opinion. She already has and likes her a lot more as taking her time before diagnosis assigned.  Going to Cincinnati to get a bronchoscopy and biopsy.  I am presently working on getting appointment to 2nd pulmonologist. Have to get HRCT within a year before he will see me. Last one in June, 2018.

    Now the main reason I clicked in to was to ask Charlene if she had read the article re NEW YORK STATE AUTHORIZES USE OF VERACYTE’S ENVISIA CLASSIFIER TO IMPROVE IPF DIAGNOSIS.  As it was on pulmonaryfibrosisnews.com 2019/04/26 I imagine you have. Apparently Medicare covers this if happen to have, although I guess at this time you do not have.

    Linda Williams

    • #20698
       Charlene Marshall 
      Keymaster

      Hi Linda,

      Thanks for reporting back and sharing your friends experience. Really glad your friend is seeking a second opinion that she is more comfortable with, this is so important. Let us know when you’ve secured a second opinion for you as well, and how the HRCT goes. This test is one I advocated for soon after they suspected IPF.

      I have read the article you referenced, perhaps it is worth me sharing it as a forum topic post though to make sure others know about it? Good idea Linda. I’ll add it to my list to share with others in case it would benefit them.

      Cheers,
      Charlene

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