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    • #17966

      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.

    • #17989
      May Starr
      Participant

      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

      • #18020

        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.

         

    • #17995
      Bill Ecton
      Participant

      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.

      • #18021

        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.

         

    • #17996
      john sliwinski
      Participant

      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.

      • #18022

        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.

    • #18003
      Kent Allison
      Participant

      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

       

    • #18023

      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.

    • #21620
      Tom Schnatz
      Participant

      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.

    • #21623

      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.

    • #21636
      Jim
      Participant

      Prescribed for my dry cough. Seems quite effective.

      • #21649

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

    • #21637
      Joan E. Lynch
      Participant

      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.

    • #21650

      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.

    • #21661
      Suzanne R Brennan
      Participant

      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.

    • #21663

      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?

    • #21673
      JR German
      Participant

      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”.

      • This reply was modified 11 months ago by JR German.
      • #21706

        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.

    • #21677
      Joan E. Lynch
      Participant

      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

      • #21678
        JR German
        Participant

        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”.

        • #21701

          ( @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

      • #21702

        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.

    • #21703
      Lorena McManus
      Participant

      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!

    • #21705

      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.

    • #21715
      Doug Jones
      Participant

      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

    • #21727

      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.

    • #21729
      Karen Boettin.
      Participant

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

      • #21758

        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.

    • #21730
      JR German
      Participant

      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.

      • #21759

        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.

    • #21742
      David Maddox
      Participant

      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.

       

    • #21763

      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.

    • #21786
      Barb S
      Participant

      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!

      • #21814

        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.

    • #21798
      Joan E. Lynch
      Participant

      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.

      • #21808

        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.

    • #21801
      Tom Pratt
      Participant

      I have been on Gabapentin for 3 – 4 months and have noticed that my cough is MUCH better. I never attributed it to the Gabapentin until I started following this forum. It has been around a long time and is inexpensive in the US. I take 600MG twice a day.

    • #21809

      Hi Tom,

      Thank you so much for sharing this – I am thrilled to hear that your cough has improved, which could be due to the Gabapentin. It does seem to work for others on this forum, so let’s hope that is your case. I am eager to chat with my physician about it too. I appreciate your sharing your experience.
      Charlene.

    • #21815
      Tom Pratt
      Participant

      You’ll have to excuse me while I try to find my way around the forum.  I’m somewhat confused as to where the latest threads are and should I be on some of them.  For instance,  I have not heard of level 4 lasers from 2 different pulmonologists that should know of any treatments.  Can that be discussed here or is that another thread?

      • #21828

        Hi Tom,

        Not too worry at all, you’re doing great navigating the forums! I know the platform is a bit hard to get used to at first, but hopefully it becomes a little more user friendly with time 🙂 Were you able to get the information you were looking for re: class 4 lasers? Marsha and Dr. Andy Hall are amazing advocates for this and can likely provide you with some good information.

        Please let me know if you have any further questions. I’d be happy to help!
        Sincerely,
        Charlene.

    • #21819
      Marsha
      Participant

      @tomp

      Hi, Tom!  Don’t feel like the Lone Ranger in finding where to post for more info about laser therapy…it’s confusing at first!  Having successfully undergone laser therapy treatments for almost four months in 2019, I am happy to share the link to access laser therapy info on the website of the wonderful doctor who is responsible for spreading the word on this site:  http://summit-chiropractic.com/laser/class_iv_laser.asp

      Dr. Hall @drandyhall as well as Charlene Marshall, @charlene.marshall  are the people who helped me along the way.  Hope this is helpful and God bless you!

      Marsha

      • #21823
        Andrew Hall DC
        Participant

        Marsha,

        Thank you for the kind words.  I did reply to Tom and did a search for him.  My reply is awaiting moderation.

        Again, I want you to know that I appreciate your sweet words and kindness and helping others along the way.  I want everyone to know that I will help locate laser therapy providers for those that want to undertake laser therapy.  To date we have found providers for over 250 PF patients.  Remarkable how many are doing laser and it’s amazing to see so many respond so well to treatment!

        Blessings to you Marsha!

        Andy

    • #21821
      Tom Pratt
      Participant

      @marshaharris,  Thank you for your reply. I currently have a message in to my pneumologist asking about laser therapy.  Just  wondering, is anyone taking laser 4 treatment in the area of Greensboro or Winston Salem, NC?   I’m know that chiropractic offices in these cities have these lasers, but can’t find any mention of using them for fibrosis. I don’t know if it has reached this far east or not.  I’m sure I’ll have to travel to find a provider and these are the closest cities to me except for Martinsville and Danville VA

      • #21822
        Andrew Hall DC
        Participant

        @tomp

         

        Hello Tom Pratt,

        Welcome to this wonderful forum.  I have done a search for you and there is one provider right in Greensboro.  There are several others in Winston Salem.  If you email me I can get into some specifics and recommendations.  My email is:  [email protected]

        Also know that the vast majority of laser therapy providers have never treated lung conditions, but we are willing to help get them on the right track by providing the current protocol.

        I wouldn’t be to hopeful in getting any laser therapy answers from local pulmonologists.  Most of them have never even heard of using laser for PF.  Attitudes of laser vary widely with pulmonologists, some have seen great benefit with it but due to the lack of published studies the majority are simply not familiar with it.  I’ve had to have a very long talk with my pulmonolgist about laser therapy.  He had no clue what it was or what it could do.  But he does say that I should continue doing what I’m doing with it as he has never seen an IPF patient do as well as me in all his years of practice.  I saw him 3 weeks ago and my resting O2 level was 100, best it’s ever been and it’s been 5 years since my IPF diagnosis.

        • This reply was modified 10 months, 3 weeks ago by Mark Koziol.
        • This reply was modified 10 months, 3 weeks ago by Charlene Marshall. Reason: tagging
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