• Symptons of UIP

    Posted by momo on October 31, 2023 at 5:53 am

    This is my first attempt so not sure if it will register on this forum, this is a test to see if iam doing it right iam not the best at technology so i apologise in advance. Without going into too much detail iam experiancing aches in joints and muscles , how are people treating this side effect of fibrosis and what medications help relive the pain aspect . Thank you

    Meredith replied 6 months, 3 weeks ago 9 Members · 9 Replies
  • 9 Replies
  • don-moffett

    Member
    October 31, 2023 at 2:08 pm

    I am 72 years old with IPF taking OFEV. I have muscle aches and pains primarily when I am not active. Do to some side affects I just sit around, read and watch TV, and it is absolutely the worst thing I can do. I got past that phase and make myself walk, do things around the house, most important be active.

  • Merle Sweet

    Member
    October 31, 2023 at 2:30 pm

    I am replying because I immediately saw “Symptoms UIP” in your heading. I am an 80 year-old male who was diagnosed with UIP in 2014 and have progressed downward over the nine years to the point I am now on supplemental oxygen full time because any exertion renders me breathless and produces substantial pressure across my entire chest. A few months ago my pulmonary doc suggested I begin palliative care. From the relationship with my palliative care doc I am now taking 5 mL of liquid morphine four times daily with the goal being to better tolerate exertion (any walking, dressing, eating, talking). The morphine has given me a sense of peace, but has not provided any help for exertion. Although I have had a living will on file for many years I have now agreed to wear a Do Not Resuscitate bracelet to notify providers if I have lung or heart issues. I will accept help from providers for any non-lung and non-heart medical issues like falling or wounds.

    Since I seldom see anyone with UIP write to this site I am now hoping to hear from others whose diagnosis is specifically UIP.

  • David Reno

    Member
    October 31, 2023 at 2:32 pm

    I’m in My 3rd year with IPF. Have days I don’t want to do anything because of the pain, all I can say is work it out and keep MOVING even if it’s just a little at a time many times a day. Best wishes’

    David

  • Samuel Kirton

    Member
    October 31, 2023 at 2:33 pm

    Hi Momo

    I would suggest you first consult with your care team. There are so many questions here… is your fibrosis the result of ____? What medications are you taking? Is there a treatment available that must be prescribed? Is there an OTC remedy available?

    Sam …

  • Jofac O'Handlin

    Member
    October 31, 2023 at 3:26 pm

    I did not understand the mnemonic UIP, so looked it up and Wiki gave me this:-

    The cause of the scarring in UIP may be known (less commonly) or unknown (more commonly). Since the medical term for conditions of unknown cause is “idiopathic”, the clinical term for UIP of unknown cause is idiopathic pulmonary fibrosis (IPF).<sup>[2]</sup> Examples of known causes of UIP include connective tissue diseases (primarily rheumatoid arthritis), drug toxicity, chronic hypersensitivity pneumonitis, asbestosis and Hermansky–Pudlak syndrome.<sup>[2]</sup>

    Therefore are we all UIP & IPF sufferers? Is it the medics confusing us?

    So? I am running a parallel path with Merton (? short term memory) diagnosed 2013, now 81 so just made 10 years. Now on 24 hr O2, carry my DNR form, and just had my monthly reminder from my Hospice care nurse, do I need to make closer contact?

    Much has been said about keeping as active as possible despite oir declining horizons. INMHO, it is the best way, despite the effort.

    Regards to all, Joe

  • Kathryn Maguire

    Member
    October 31, 2023 at 3:37 pm

    I am sorry I do not know what UIP is. Can you tell me?

    • momo

      Member
      October 31, 2023 at 6:34 pm

      Thanks for the replies. Kathryn my type of fibrosis comes under the idiopathic pulmonary fibrosis banner cause unknown. Once they performed all the exhaustive tests they categorised it under Usual intersitital pnemonia.You can google UIP for further info. My understanding of lung fibrosis is that there are over 200 different varients.

  • Linda Maguire

    Member
    November 1, 2023 at 4:50 pm

    UIP stands for “Usual Interstitial Pneumonia” vs NSIP, which is “Non-specific Interstitial Pneumonia”. IPF is usually categorized as one of these two types. UIP is more common but has a less favorable outcome

  • Meredith

    Member
    November 7, 2023 at 9:52 pm

    My diagnosis is IPF. It means the cause is unknown. I don’t know what my life expectancy is but I do want to live it with what ever it takes to feel close to normal. I’m on oxygen and am duty years old. If you have a caretaker you are blessed b

    I live alone and don’t have a caretaker. I see my pulmonologist every three months and my internist every six months. I have trouble breathing wearing a mask and my area has a lot of COVID. I’m staying inside more.

    As long as I am not short of breath I’m reasonably happy.

    All of the initials of conditions confuse me. They just make me worry. To hear people walking three or four miles a day makes me feel I’m doing something wrong. Truth is I’ve never had any desire to walk that much.

    The more doctors I feel I must see just makes my “NOW” stressful. I don’t try to redo the past or take charge of the future. Today has been quiet but lacking stress

    I don’t know about tomorrow.

    Meredith

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