• Posted by Charlene Marshall on March 28, 2019 at 8:53 am

    Hi Everyone,

    Just a quick topic tonight as it is late and I am really tiring out these days. It is our year-end at work, so the hours are exhausting me, but more on that another time. As I was editing / replying to some comments on my columns, which take place outside of the forums, I came across a member who mentioned an effective cough suppressant for him.

    Has anyone talked to their doctor about or tried Gabapentin for their IPF-related cough? 

    The member who wrote to me said this worked wonders for him and I’d not heard of it before so I wonder if others have. If you’ve discussed/tried this, please let the group know whether or not you felt it was beneficial in reducing your cough.

    Thanks in advance,
    Charlene.

    Charlene Marshall replied 4 years, 3 months ago 18 Members · 44 Replies
  • 44 Replies
  • may-starr

    Member
    March 28, 2019 at 10:06 pm

    I take Gabapentin every night for restless legs or Neuropathy. The only time I really cough is when I have phlegm in my throat or chest. I don’t seem to have the dry cough I read about other people having so I wonder if that’s because of the Gabapentin

    • Charlene Marshall

      Member
      March 30, 2019 at 7:34 am

      Good morning May,

      Thanks for sharing your experience and contributing to this topic thread. Certainly an interesting one! I’d not heard of Gabapentin being used for the pesky IPF-related dry cough, but it seems as though others have. Glad you don’t have it regularly, and I wonder if it is because of the Gabapentin. Have you been on it for restless legs/neuropathy for a long time? I wonder if there is indeed a link here. Thanks for sharing!
      Charlene.

       

  • becton1948

    Member
    March 29, 2019 at 11:01 am

    My doctor prescribed off-label use of Gabapentin for my dry cough.  He prescribed one 300mg Gabapentin twice a day, and it took care of the cough in 2 to 3 days.  I take the “Gaba” everyday still, and the dry cough has never returned.  Note that as May stated above, it doesn’t help with a cough due to phlegm/congestion, but it sure took care of my dry cough.

    • Charlene Marshall

      Member
      March 30, 2019 at 7:36 am

      Wow, thank you for sharing this Bill ( @becton1948 ) !

      Sounds like your doctor was onto something when he/she knew to prescribe Gabapentin for an off-label use. Really glad it helped reduce the dry cough, and that its never returned for you. That is wonderful. I may need to investigate this going forward, as I don’t have the congestion/phlegm cough but the dry cough is starting to irritate my chest muscles so if I can relieve it that would be amazing. Thanks again for sharing…

      Wishing you well!
      Charlene.

       

  • john-sliwinski

    Member
    March 29, 2019 at 11:02 am

    I am on 1800mg of gabapentin daily (i.e. 600mg every 8 hours). My cough has subsided but not entirely. Prior to be prescribed the med I used to cough all day long. I explained that to my pulmonologist at Penn Med and she started me on a low dose and titrated me up to 2400 mg which was too much. I feel comfortable with 1800mg but that dose could be different for someone else. I am nt saying it is the coughing med and htat it will stop you from coughing but it does help. Talk to your MD about it and go from there. Would I give it up? No.

    • Charlene Marshall

      Member
      March 30, 2019 at 7:38 am

      Thanks so much for sharing your experience with Gabapentin and the IPF-related cough, John! I am always curious to hear from others about their experiences so I appreciate you writing. Glad you found a dosing solution that works well for you now and one you’re comfortable with. I do think I’ll speak to my MD about this – glad it is reducing the cough for you 🙂
      Cheers,
      Charlene.

  • kent-allison

    Member
    March 29, 2019 at 12:51 pm

    I have been on gabapentin for more than 3 years now and it has almost entirely eliminated my coughing.  I take a 600 mg tablet 3 times a day and never miss a dose.  If you haven’t tried it, you should!  Good luck.

    Kent Allison

     

  • Charlene Marshall

    Member
    March 30, 2019 at 7:40 am

    Thanks for sharing this @kentallison, I am so grateful to others that they are willing to share their personal experiences on the forum for others to learn from. Certainly sounds like this is a more common approach to reducing the pesky IPF-related cough than I fever knew so that is great. Looking forward to discussing this with my pulmonologist soon. Really glad your dosing and time on the drug has reduced your cough almost entirely. That is great news!

    Take care,
    Charlene.

  • tom-schnatz

    Member
    October 11, 2019 at 9:55 am

    I started taking gabapentin at 100mg 3 times a day for my constant dry cough. It helped for about a week. Then my pulmonoligist upped dosage to 300 MG 3 times a day. That gave me quite a bit of relief for about two months. I am once again asking him to increase my dosage as it seems that once my body becomes accustomed to the current dosage, I need a higher level. I am hoping the next increase will do the trick for me.

  • Charlene Marshall

    Member
    October 13, 2019 at 6:29 pm

    Hi Tom ( @tschnatz )

    Thanks so much for writing and sharing this experience with us. I know I’ve been part of many conversations from patients about gabapentin and whether or not it provides relief from the chronic cough. Has your doctor been willing to increase the dosage for you, as needed, if you mentioned it provides some relief for a period of time? If so, I’m glad to hear that! Have you experienced any side effects from it? Please keep us posted as I know the chronic dry cough with IPF (this is the one I have) can be just as pesky as the mucous-filled/productive cough that many others have. Thanks again for writing.
    Charlene.

  • jim-foley

    Member
    October 15, 2019 at 10:54 am

    Prescribed for my dry cough. Seems quite effective.

    • Charlene Marshall

      Member
      October 16, 2019 at 9:02 am

      That is great to hear Jim, thanks for sharing! What dosage are you on?
      Charlene.

  • joan-e-lynch

    Member
    October 15, 2019 at 3:09 pm

    I was on gabapentin for several years due to nerve pain from shingles while I was living in MA.  Went off when I felt better from the nerve pain.  My dry cough started some time after that.  I have since moved to Florida.  I am seeing my pulmonologist on Friday and will ask him about putting me on.  Will let you know how it goes.

  • Charlene Marshall

    Member
    October 16, 2019 at 9:03 am

    Hi Joan,

    Thanks for writing and sharing your experience with gabapentin. I’ve heard it primarily prescribed for nerve pain, actually, so it was interesting to hear it being used to suppress the dry cough associated with IPF. Please do let us know what your pulmonologist says on Friday about it, always curious to hear. Goodluck at your appointment!
    Charlene.

  • suzanne-r-brennan

    Member
    October 17, 2019 at 10:14 am

    Charlene, I know this post is about gabapentin but I want to also throw out that my pulmonologist at National Jewish Health prescribed Baclofen (10mg twice a day), which is an off-label drug used primarily for people with MS. I had a dry cough in 2015 which prompted me to go to the doctor and that set off a whirlwind of tests and appointments which led to a diagnosis of IPF. He prescribed this drug after my diagnosis and I have not had a dry cough since.

    So I wanted to share that there are other alternatives out there.

  • Charlene Marshall

    Member
    October 17, 2019 at 7:36 pm

    Thanks so much for writing about this and sharing your experience with us Suzanne. I actually think I may have been told about this before for a dry cough and completely forgot, so thank you for the reminder. What does an “off-label drug” mean just out of curiosity? I’m glad it has alleviated your dry cough though, that would really help me! Do you have any other side effects from the Baclofen?

  • jr-german

    Member
    October 18, 2019 at 6:37 pm

    My dry cough puzzled my pulmonologist for a few months.  He prescribed amitriptyline, which helped me sleep but did not alter the cough.  On my next followup, he took me off the amitriptyline and started 300mg per day of gabapentin.  It helped some but when he up’d the dose to 600mg per day the cough began to respond.  The reason for my cough did not become known until a CT scan of the chest two weeks ago.  Pulmonary Fibrosis and multiple “nodules”.

    • Charlene Marshall

      Member
      October 22, 2019 at 10:34 am

      Good Afternoon,

      Thanks for sharing your experiences with us JR. The amitryptaline he prescribed for the cough, that is typically used for supporting the heart, isn’t it? Perhaps I am thinking of a different medication. Sorry it didn’t work for you, but glad to hear that the Gabapentin is working a bit, despite the upped dose. Will you go back down to the 300 mg dose which sounded effective for you? Sorry to hear abotu the results of the CT scan. Hang in there and feel free to write anytime!
      Charlene.

  • joan-e-lynch

    Member
    October 20, 2019 at 9:41 am

    Hi Charlene,  My doctor prescribed Gabapentin went I saw him on Friday.  It is 300 mg a day (100 mg 3x per day).  I felt a little dizzy after the second dose.  I will have to give it more time to see if it helps my cough.  I would like to know what off-label means also…………….J

    • jr-german

      Member
      October 20, 2019 at 11:32 am

      Off label relates to the use of a medication for something it has not been listed as treating.  In this case, gabapentin (Neurontin) is not listed as treatment for coughs.  But, one of its side effects is diminishing cough.  That would be “off label”.

      • Charlene Marshall

        Member
        October 22, 2019 at 7:46 am

        ( @fourosix )

         

        Thanks for providing us with that clarification — I didn’t know that, so your reply was very helpful for me and likely others as well! Thanks again.
        Charlene

    • Charlene Marshall

      Member
      October 22, 2019 at 7:51 am

      Hi Joan,

      I hope the side effects have subsided a bit for you since starting Gabapentin – keep us posted on whether or not you find this drug relieves any of the dry cough for you. Thinking of you!
      Charlene.

  • lorena-mcmanus

    Member
    October 22, 2019 at 10:23 am

    Hi Charlene,

    Yes gabapentin is documented as a treatment for the dry cough associated with PF. There are research articles documenting this practice. Will send along when I locate them. Our doctors in Canada, especially our palliative docs who are well versed in it, use it more often. Cheers!

  • Charlene Marshall

    Member
    October 22, 2019 at 10:31 am

    Hi Lorena,

    That is really good to know, thanks for sharing! I will actually ask my physician about this here in Canada as well, as the dry (pesky!) cough is what I struggle with as well. Right now I am feeling pretty angry at my lungs as I’ve been having some wicked breathlessness the last few days which is hard to manage. Fingers crossed it is nothing! Thanks in advance for sharing the articles when you have some time!

     

    Kind regards,
    Charlene.

  • doug-jones

    Member
    October 22, 2019 at 7:06 pm

    Regarding “Off-label” use of a drug, the October 2019 issue of AARP Bulletin (page 36) has the following information and link to determine if a drug is being used “off-label”, that is, for a purpose it was not originally validated to treat.

    “At DailyMed.nim.nih.gov   you can check if the drugs you’re currently taking are off-label for your disease or medical condition.  Enter the name of the medication, select the type you’re taking (pill, liquid), then click on Indications and Usages to see if your diagnosis is listed.  If you have any questions, ask your doctor or pharmacist.”

    Note:  This applies to US drugs approved the US Food and Drug Administration (FDA).

    Doug

  • Charlene Marshall

    Member
    October 22, 2019 at 7:08 pm

    Thank you for sharing this Doug! I will take a closer look at the off-label use of drugs… it isn’t something I was really familiar with, so this is very helpful. I’m sure it’ll benefit others as well, thanks again for sharing.
    Charlene.

  • karen-boettin

    Member
    October 23, 2019 at 12:32 am

    I take 900 mg a day for my cough .It stopped it almost immediately.

    • Charlene Marshall

      Member
      October 27, 2019 at 7:16 am

      That is so great to hear Katie, I am so glad you are relieved of that symptom! Did you start with that 900 mg dose, or work up to it?

      Kind regards,
      Charlene.

  • jr-german

    Member
    October 23, 2019 at 7:19 am

    I began with 300mg per day with minimal cough reduction.  Then went to 600mg per day, which seems to be doing the trick.  I still have the occasional dry hack but nothing like it was originally.

    • Charlene Marshall

      Member
      October 27, 2019 at 7:17 am

      So glad to hear this JR! I have to admit the nagging, dry cough is one of the worst things about this disease for me (so far). I may speak with my physician about Gabapentin as well, as it has been seemingly helpful for others on this forum, including yourself. Thanks for sharing the increased dosage tip too!

      Talk to you soon,
      Charlene.

  • david-maddox

    Member
    October 24, 2019 at 9:26 am

    I went to an ENT doc for my cough (dry) and he prescribed 100 mg Gabapentin three times/day to help with the cough. I’ve had little or no reduction and it drives me crazy (hard to talk very long with anyone and had to drop out of church choir and barbershop chorus). From the responses above it seems like it might be good to try increasing the dose to 600-900 mg/day to get a real effect. I’m definitely going to call the doc and see what he thinks. I guess Gabapentin affects a brain center that among other things can often be effective in interfering with a chronic cough. Thanks to everyone who responded–gives me hope.

     

  • Charlene Marshall

    Member
    October 27, 2019 at 7:36 am

    Hi David,

    Thanks so much for writing and contributing your experiences regarding this medication for the dry cough. Yes, a few people have written that what-seems-like-standard dosing of 300mg/day isn’t sufficient in reducing their cough. A few folks mentioned 600, or even 900 mg before it was effective. Do let us know what your doctor says about increasing the dose too. Hopefully with some personally shared stories he/she will be open to it for some relief for you. Then of course, if you try it, let us know how you make out. We’re stronger together when it comes to IPF so the more sharing the better.

    Kindest regards,
    Charlene.

  • Deleted User

    Deleted User
    October 29, 2019 at 9:43 am

    I want to thank whomever started this conversation.  I have scleroderma and recently been diagnosed with PF.  I’ve had a chronic cough for over 10 years and none of my doctors could ever figure anything out to alleviate it.  I’ve read the forums and when this came up I was hopeful.  After reading all the posts, I called my PF doctor and asked him if it would be something I could try.  So since last Friday, I’ve been taking 300 mg 3x a day and after two days i’ve seen a difference.  My cough is about 75% gone, I’ve been getting a full nights sleep since then and my mood has changed to feeling positive and happy.  After going through this coughing for more than 10 years, I’m feeling happy.  Thank you forum!

    • Charlene Marshall

      Member
      October 30, 2019 at 6:18 pm

      Hi Barb,

      Thank you so much for taking the time to write this note to us! It has changed my day to know that after 10 years, you’re experiencing much less of your cough which I know can be exhausting to deal with. I am so eager to speak with my physician about this as well, and hope he will be as open to this as yours has been. What incredible relief you must be feeling – to be able to sleep better and feel happier. And for it to work so quickly – amazing news. Thank you again for sharing 🙂

      Best wishes to you!
      Charlene.

  • joan-e-lynch

    Member
    October 30, 2019 at 7:50 am

    I have been on Gabapentin for almost 2 weeks and it definitely helped my cough.  I hope it continues to do so.  I do have a mucus cough once in a while.  But all in all I am feeling really good right now in spite of my old age which is also terminal.

    • Charlene Marshall

      Member
      October 30, 2019 at 6:03 pm

      I’m so glad to hear this Joan, that is excellent that your cough is doing better. I hope it continues this way for you! Thanks for sharing.
      Charlene.

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