This topic contains 10 replies, has 5 voices, and was last updated by  Charlene Marshall 3 months, 3 weeks ago.

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  • #17020
     Charlene Marshall 
    Keymaster

    As a member of our Pulmonary Fibrosis News forums, you may have gotten an email this week about a new study being sponsored by Respivant Sciences, GmbH regarding an IPF-related cough. I can be the first one to speak to the amount of emails that come through some days, so this message may have been missed and I thought it would be beneficial to post the information on this platform as well. Here is the write-up that was distributed on behalf of the company, verbatim:

    Almost all patients with Idiopathic Pulmonary Fibrosis (IPF) suffer from a dry, persistent chronic cough. This cough interrupts many aspects of daily life and significantly reduces quality of life in IPF patients. For example, affecting physical and social activities, exacerbating other respiratory conditions, causing sleep troubles, and limiting mobility.

    We are making progress in the treatment of “general” chronic cough; however, we need more research studies to expedite the discovery of better cough treatment in patients with IPF.

    You can help! Take action to advance IPF research and test a new potential treatment for IPF.

    To find out whether a potential new drug may work to reduce the persistent cough in patients with IPF, you might consider joining the monARC ILD Patient Research Network.

    *Please note: we are not endorsing the joining of the patient research network, or the participation in their study. This forum post was made for informational purposes only, and each members is welcome to join, or to refuse participation in this study based on their sole discretion.

     

  • #17042
     Jean-Michel Fourrier 
    Participant

    Thank You Charlene,
    Currently checking with them if I can join being french 😉

  • #17062
     Charlene Marshall 
    Keymaster

    I hope you can @jeanmichelf! Everyone’s contributions are valuable I think 🙂
    Goodluck!
    Charlene.

  • #17098
     Jean-Michel Fourrier 
    Participant

    Unfortunately @charlene-marshall they answered me that monARC,s services are only available to patients who are in the United States, but working hard to expand globally in the near future. I will check regularly 😉

    • #17112
       Charlene Marshall 
      Keymaster

      Oh bummer, sorry to hear that @jeanmichelf! Glad they’re working to expand globally, that is important too 🙂
      I hope you’re having a nice week, I know I owe you a private message… I’ll get to that soon!
      Take care,
      Charlene.

  • #17108
     Bill 
    Participant

    Hi Charlene,
    I wanted to get back to you  on my Canada trip and my coughing problem so that others may benefit or not.
    First of all the only time I got through  Ontario, Canada was on a trip to Texas from Quebec across the Queens Highway. My favorite places in Canada was Halifax and Prince Edward Island. On the west coast I liked traveling through Canada to Alaska. I loved it all.
    As far as my coughing goes, I am at the point of my IPF that I am about to fall off the cliff. But meanwhile, as you know I was having trouble with constipation using morphine. I was so bound up it made my lips pucker. So I got off of the morphine which has greatly improved my disposition as it was.
    To combat the coughing and runny nose I alternate between dayquil and 1 sudafed pill with 600 mg of ibuprofen with plenty of cough drops in between. They seem to help although I only take them twice a day as I do not know the consequences of doing more of one than the other, I seem to do better with the Advil and Sudafed and I do not have
    the constipation problem anymore. My cough seems to subside until the pills wear off.
    At any rate that is my story and I am sticking to it. I am at 10 liters of oxygen which is max on my machine so one more hit and I am in deep kimchi as the American Military says. P.S. I do not take nightquil because of the alcohol content as I believe any alcohol in the blood takes away from the oxygen.

  • #17121
     Charlene Marshall 
    Keymaster

    Hi Bill,

    Thanks for getting back to me, and I hope this note finds you doing as well as possible! Be glad you aren’t in Canada at the moment, I am so sick of winter as we brace ourselves for another snow storm headed our way tomorrow. It’s been an unbelievable February – ice is everywhere! Regarding your trip, I also love Halifax and spent some time out there last summer and PEI is beautiful too! An Alaskan cruise is on my bucketlist someday, so it sounds like you’ve hit all the great places 🙂

    Glad getting off the morphine has helped, did you end up taking any other medication or supplement to help with that issue? I’ve heard morphine, albeit really helpful at times, can cause many issues unfortunately.

    I hope you continue to get some relief for your cough, it is such a pain in the neck … and basically everywhere else, speaking from a muscular pain perspective. I just had a massage today to try and alleviate the sore muscles from coughing, or more so lately, just clearing my throat. Take care of yourself, and thanks so much for writing me back.

    Charlene.

  • #17868
     Marianne 
    Participant

    Has anyone tried acupuncture to help with the cough? That was recently suggested to me by my massage therapist. He did not know if it would work but thought it was worth a try. My chronic cough seems to come and go. Much worse as the day goes on. Quality of sleep at night is affected by the cough. Some nights are not bad, others not so fun. Not diagnosed yet which a particular ILD. Doctors are thinking either IPF or NSIP. Fairly healthy at this point. Doctors want to do a VATS biopsy to hopefully figure how which ILD. I was told I am in the early stage right now. Only on BP, thyroid and Vit D3 meds at this time.

    • #17899
       Charlene Marshall 
      Keymaster

      Hi Marianne,

      Thanks so much for your reply and good question regarding this topic! I had mentioned that I wanted to reply to this, as I have some experience with acupuncture in an attempt to suppress the cough; I didn’t mean to take so long to get back to you…

      I tried acupuncture at the recommendation of my colleague who found it very helpful for other aliments (she doesn’t have PF and wasn’t referring a cough) but for other pains, including migraines she said it was really helpful for her. Since I was also recovering from a car accident and pain from that, I figured I’d give it a try and if it also helped my cough it would be a bonus. Unfortunately I didn’t find any noticeable difference in trying acupuncture to reduce the cough. There is a study on this as well, which has really gained some traction on using Chinese herbs and acupuncture to treat a cough. Have you seen it @marianne? You can read it HERE if interested. Sorry I don’t have more information to share from personal experience about this! Maybe worth a try to help if it suppresses the cough a bit and improves quality of sleep? Totally an individual choice I think.

      Talk to you soon, let us know if you do try it and find any success…
      Charlene.

  • #17881
     Kathleen Greco 
    Participant

    could someone tell me if this number morc RNA phone number is MORC RNA 1 586-273-2216 is related to this report I keep getting calls from this number & when I looked it up it had something to do with what (I think) you are talking about. monARC BioNetworksIt’s important yet cannot find info on it maybe someone out there knows something about this.thank you kathleen greco

  • #17898
     Charlene Marshall 
    Keymaster

    Hi Kathleen ( @kathleen-greco ),

    Thanks for getting in touch with us about this – I don’t know monARC BioNetworks to be calling any patients regarding this study, but I could be wrong. Upon a quick google search, it looks like Morc RNA is something different than monARC. Did you sign up for the study or provide your phone number to create an account/login at all Kathleen for their site do you remember? We don’t collect phone numbers of forum members so wouldn’t even know how to pass it on if someone asked – which we don’t do at BioNews. Sorry I can’t be of more help! When they call, are you able to ascertain the reason for their call?

    Goodluck and let us know if the two are indeed related somehow…
    Charlene.

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