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    • #24537

      Over the years, I’ve been privileged to connect with many patients living with idiopathic pulmonary fibrosis (IPF) on a variety of issues. Some have been as members of this wonderful forums community, others have been in person at various events (such as the Pulmonary Fibrosis Foundation Summit) and some have been via comments on the columns I write for Pulmonary Fibrosis News. Despite our differences in living with this disease, one commonality always ensues: we’re constantly striving to learn more information about our disease.

       

      One thing I’ve heard a lot of, especially amid the COVID-19 pandemic, is that many of us are considered immune-compromised. Being high risk and immune-compromised are two different things. All of us as patients with a chronic lung disease are indeed high risk for various illnesses, especially because our catching it could have life-threatening consequences compared to someone who is healthy. However, we’re only considered immune-compromised if we’re taking immunosuppressant medications.

       

      From my many conversations with other IPF patients, it sounds like there are several immunosuppressant medications used for our disease for an array of different reasons. I’m curious to learn more about those different reasons, so if you’re comfortable, I’d love to hear from you regarding immunosuppressant medications you’re on. If you take one of these medications:

       

      • What immunosuppressant drug do you take?
      • What is it used for in relation to your IPF/PF diagnosis?
      • Do you have any side effects from it?

       

      Please note: this information will not be compiled by PF News in any capacity, or used for any type of study/data collection. It is to better my own understanding of immunosuppressant medications used for IPF/PF, especially when others’ connect with me about the drugs they are using. 

       

      Thanks in advance!
      Charlene.

    • #24555
      jaime L manriquez
      Participant

      Hello Charlene,

      hope you are enjoying good summer weather up in Ontario, related to Immunosuppresants, should I take some? never took any,

      best regards

      Jaime

    • #24566

      Hi Jaime,

      Thanks for writing, it is so nice to hear from you!

      It seems patients with IPF/PF take immunosuppressant medications for such a wide array of reasons, some of which may be entirely unrelated to their fibrosis. This is why I’m hoping to gain some insight into this, as it seems very different for each patient. I am not qualified to share whether someone should/shouldn’t be on an immunosuppressant, I suppose it depends on the drug and what it is used for. It might be something to ask your MD about next time you see him/her, depending on the magnitude of reasons patients use them… some may apply to your situation, whereas others might not. It seems there is a lot to learn in this regard!

      Take care,
      Charlene.

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