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    • #21888
      Mark Koziol
      Participant

      While reviewing hot topics on our forum pages I came across a topic written by our own Charlene Marshall. The topic is titled; Gabapentin for IPF- Related Cough? There were many responses to this topic in the last month. I found several publications supporting the use of Gabapentin for “refractory chronic cough”. Unfortunately, this is one of the symptoms many IPF patients suffer with. The article; “Chronic Cough: Our Approach to Diagnosis and Treatment” appeared in the Cleveland Clinic’s Respiratory Institutes website. Dr. Rachel Taliercio authored the article and writes, “Gabapentin has been shown to improve cough-specific quality of life in patients with refractory chronic cough, suggesting that central reflex sensitization is involved in this syndrome.” Although the article doesn’t specifically mention IPF it does give a concise perspective on chronic cough.

      When I take medicines prescribed to me, I try and educate myself on their properties and side effects. I feel I should know everything about them before I begin to take them. In her article Dr. Taliercio states, “Educating patients about possible side effects and having a protocol to guide titration of therapy is essential. Equally important is early referral to a speech pathology specialist. This therapy is an effective nonpharmacologic modality for the management of chronic cough.” I do know of several persons who are taking this medicine and have seen a speech pathologist to control the coughing.

      I found an article published in The Lancet. The article is titled; “Gabapentin for refractory chronic cough: a randomised, double-blind, placebo-controlled trial”. There is a charge if you would like to read the entire article but I feel the summary that is linked is sufficient. In this trial the gabapentin “is both effective and well-tolerated”.

      As a forum member and co-moderator I am grateful for our members who are constantly bringing attention to other treatments that others may not have heard of. Will the results, I have stated here persuade you to ask your physician about gabapentin? 

       

    • #21899
      George Quartell
      Participant

      Mark, thanks for this post.  However, in my research in drugs.com, webmd.com, and others, there appears to be a significant amount of effects that my overall condition would not tolerate: I am diabetic, I’m on antidepressant medication, and I have a condition of gastrointestinal bleeding.

      One more comment for those wishing to pursue the use of Gabapentin further, there are three different brands of this drug: Gralise, Horizant, and Neurontin.  Which of these are you focused upon?

    • #21908
      Mark Koziol
      Participant

      Hello George, thanks for writing. I appreciate your comments. I am not focusing on any of the brands but I wanted to share how the use of Gabapentin has the ability to control refractory chronic cough. I am glad you brought the differences of the brand names to our attention. Patients are sometimes able to take one brand preferably over another. Thank you, mark.

    • #21915
      Wendy Dirks
      Participant

      I have my next appointment at the hospital in less than two weeks and one of the things I want to discuss is my cough. I’m not sure what “chronic” means in this context, but I have intermittent spells of coughing that have become so severe that I’m getting muscle spasms afterward around my rib cage. They are very painful. I’ll see what the consultant says.

      • #21916
        Mark Koziol
        Participant

        Hello Wendy, I can relate to what you are saying. I suffered through these same coughing spells pre-transplant. Hopefully your consultant can help with your cough. Mark

    • #21919
      Wendy Dirks
      Participant

      Thanks, Mark – I don’t know what I’d do without these forums! I get so much information here and it is really appreciated.

    • #21921
      Mark Koziol
      Participant

      You are most welcome Wendy.

    • #21922
      Bill Turnage
      Participant

      Mark, after reading about this topic, I was planning to ask my pulmonary doctor if I should try Gapapentin for my IPF-related cough. Instead he has recommended trying this drug: Hydrocodone/Chlorpheniramine Polistirex. I’d like to know if any of our forum participants with IPF have been prescribed this medication and if so, what were the results? Side effects? Would they recommend it? The dosage he’s recommending is 5ml every 12 hours as needed. Any information that can be provided would be much appreciated. Thank you very much.

      Bill Turnage

      • #21923
        Mark Koziol
        Participant

        Hello Bill, thank you writing. It looks like he has prescribed an opioid for you. Opioids are commonly prescribed and are found to be a successful treatment for the chronic cough that we exhibit as ipf patients. Take care, Mark.

    • #21924
      Bill Turnage
      Participant

      Thank you Mark. I will try it and hope it works.

    • #22492
      Regina Bolyard
      Participant

      I have taken generic gabapentin on and off for years to treat pain. It definitely helps me with cough reflex. I still feel the burning sensation in my lungs, but I can resist the urge easier on this medication.

    • #22493
      Mark Koziol
      Participant

      Hello Regina, thank you for sharing your experience with Gabapentin. I know it’s not a panacea for everyone but it has helped many pf patients. Take care, Mark.

    • #22504
      Virginia Currie
      Participant

      gabapentin works for me.  I have been coughing for more than a year until my pulmonologist told me that I can take Neurontin or Gabapentin.  My life improved.  Constant coughing stressed me out.  I take 300 mg three times a day.  I have a decent sleep.  Neurontin helps with sleep.  One side effect is sleepiness.  I took it before during the night time.  I found out with the 300 mg TID doesn’t make me sleepy during the day.  I still work as a registered nurse.  I was just newly diagnosed for PF.  Hope this comment helps.

    • #22505
      Mark Koziol
      Participant

      Hello Virginia, thank you for sharing your experience with using gabapentin. I am pleased the medicine works for you. Chronic coughing is a disruption in life no one wants to experience. Take care Virginia, mark.

    • #23104
      Reshma Joshi
      Participant

      Hello

      I see that Gebapentin has worked for many patients but is it available everywhere in the world? We’re from Nepal and my mom has been suffering from chronic cough a lot these days. Her oxygen level is dropping and we’re giving her oxygen at home. So if anyone can plz tell me the availability of this medicine and also what’s the average level of oxygen for the IPF patient? And till which level we don’t need to be afraid?

    • #23105
      Mark Koziol
      Participant

      Hello Reshma, you will have to ask your doctor or even a pharmacist if the gabapentin is available in Nepal. Most physicians want you to keep your oxygen saturation above 88%. Doctors usually prescribe supplemental o2 if your saturation keeps going below this standard. Continued low oxygen saturation can cause organs to fail. Optimal saturation is above 95%. Hope this helps. Take care, Mark

    • #23139
      Doug Jones
      Participant

      These response are interesting; glad that gabapentin may work for some.  I note that the research study cited from Lancet EXLCLUDED chronic coughers who had a respiratory disease so its effectiveness for IPF patients may not be the same–see excerpt below.  The medical literature shows mixed results for gabapentin in controlling cough–plus a variety of potentially undesirable side effects.  My doctor declined to prescribe this for me.  Doug

      “This randomized, double-blind, placebo-controlled trial was undertaken at an outpatient clinic in Australia. Adults with refractory chronic cough (>8 weeks’ duration) without active respiratory disease or infection were randomly assigned to receive gabapentin (maximum tolerable daily dose of 1800 mg) or matching placebo for 10 weeks.

      • This reply was modified 1 year, 2 months ago by Charlene Marshall. Reason: formatting to remove code
    • #23164

      Hi Doug,

      Thanks for sharing, as I always appreciate hearing the literature behind some lesser known symptom relievers, such as Gabapentin. I was surprised to hear how many people seem to be helped by this drug for the cough, but excluding the population of chronic coughers associated with lung disease is important information to note, as you say. Thanks for sharing. It does seem that the drug helps a lot of people, but I can understand the hesitation in giving it to others too.
      Take care,
      Charlene.

    • #27675
      Heather
      Participant

      Chiming in on the use of gabapentin. My husband was diagnosed a year ago (at 45), and several months ago he tried gaba to control his cough which has gotten progressively worse. He didn’t feel it was helping, and because he’s not big on taking medications (he takes a lot of pills now- Esbriet, the GERD one, etc.), he tapered off. Now that he’s fully off, we realize that the gabapentin WAS helping. He now coughs non-stop all day long which is interrupting his work and quality of life. The coughing is so bad that his ribs and muscles ache, he has headaches, etc. He’s going to discuss going back on it with his doctor. I just wanted to chime in as this discussion has been very helpful as I tend to do all of the research as it pertains to his care.

    • #27676
      Jerry Genesio
      Participant

      @mark-koziol : I’ve was diagnosed with IPF about a year ago but I have no cough. I’ve also been on Gabapentin 600 mg three times daily for about ten years, which was prescribed to help relieve the pain of severe spinal stenosis. I take a number of other prescribed drugs for the stenosis and a heart condition, but I’ve never taken anything specifically for the IPF. I was offered Esbriet but declined due to the possible side effects and possible incompatibility issues.

    • #27685
      Anonymous
      Inactive

      I also would like to chime in.  I was diagnosed with PF in 2019 but i’ve had a chronic cough for well over a decade which my rheumatologist attributed to scleroderma (which i’ve had 35 years now).  No one could come up with a drug for this cough so it was more or less “live with it”.  When I was diagnosed with PF, I joined the forum and kept reading all the posts about what to expect, etc.   I don’t remember who, but someone posted about a chronic cough and what they were taking and others responded too with their stories about gabapentin.  I was coughing all the time, people would look at me like I was contagious and I would not go out to eat, to movies, concerts, etc.  I suggested gabapentin to my pulmonologist and advised of the research I’ve done and he agreed that I could try it.  I’m on 300mg 3x a day.  It’s made all the difference.  I’d say it took away about 80 to 85% of my cough.  I’m a happy campeer!

    • #27687
      Catherine Leonard
      Participant

      Chronic cough treatment, caught my eye.

      Me: Diagnosed IPF 2018 / tumor of unknown cause found 12/2019 which grew to 7cm in lower right lung lobe  / Diagnosed with non-Hodgkins Large B cell Lymphoma 11/2020 / Have undergone 4 of six chemo treatments, and have been dealing with unexpected continuation of chronic cough even after the last PET scan showed a significant diminishing of lung tumor.

      I haven’t responded to this forum in the past, but realize I do need to applaud and say thank you to all the folk who do so.  It has been helpful.  Thank you.

      I will be referred to a new pulmonologist (we changed health care systems) and when I see him/her I will definitely ask about Gabapentin.

      Thank you.

      Catherine

       

    • #27689
      Virginia Currie
      Participant

      I am on disability now after a lung biopsy last January to know whether it was PF vs Hypersensitivity Pneumonitis.  The biopsy result was Hypersensitivity Pneumonitis.  I had a worst post op agony after my surgical biopsy.  I have to use oxygen 24/7 ( I never did before). Coughing and desaturation are futile.  I felt I would die.  I lost weight.  2 years ago I had chronic cough and was diagnosed with interstitial lung disease.  It was not autoimmune.  My symptoms were basically like allergy symptoms, chronic cough, post nasal drip, hoarse voice, GERD.  My cough was controlled with Gabapentin.   I was able to go back to work as an RN around April 2019 until before my surgery January, 2021.  I’m now taking prednisone and cellcept.  I still use gabapentin hoping it would help me but I don’t know. I’m still coughing and most of the time whitish productive secretions.  I’m short of breath when walking around my house even with oxygen.  I wish the gabapentin will help my cough med Hycodan and at times take Ativan 1 mg PO to calm my cough.  The tessalin pearls were not helpful.  I noticed that I had more post nasal drips.  Who among you has my disease? I have a chronic Hypersensitivity Pneumonitis that is acquired from birds, wood work, molds.  I was exposed to molds in my old homes. We had a lot of pigeons in my neighborhood.  I sprayed their poops with water when I’m cleaning the outside part of my house.  This exposure is way back I moved in my neighborhood but got exacerbated after a flu and pneumonia.  After that, my life was never the same.  I lost 48 lbs since 2019.

      • #27690
        Wendy Dirks
        Participant

        Hello, Virginia – I also have chronic hypersensitivity pneumonitis although the trigger is completely unknown in my case. I have had allergies and asthma all my life. I suspect mould is one of the triggers. My father died of IPF and my son had multiple sclerosis so clearly there is a genetic factor creating a susceptibility to immune system disorders in my family.

        I’m so sorry to hear about the progression of your disease post biopsy. My illness was diagnosed by a CT scan and I’ve never had a biopsy.

        I am taking CellCept and using oxygen but nothing for my cough. Sometimes my coughing is so violent I feel as if I’m going to vomit or choke. My consultant said normally she would prescribe something with codeine but I can’t tolerate opioids – I get horrible migraine-like headaches from codeine and morphine. I looked up gabapentin here and the NHS uses it for epilepsy and pain control but there is nothing about using it in PF.

        I am keeping a symptom diary to try and determine what sets off the severe coughing fits. I haven’t figured it out yet – it’s a work in progress.

        Thank you for sharing your story here. We’re all in this together and it’s good to know we aren’t alone.

        Best wishes,

        Wendy

         

    • #27701
      Jan Shabra
      Participant

      I wish I could take gabapentin for productive cough – IPF. However, it greatly affects my essential tremor and I shake badly, including internal tremor.

    • #27704

      @cactusrun

      So sorry to hear this Jan! I’ve heard a few people share that Gabapentin is effective for their cough, or they want to see if it would be, but it causes trembling in their extremities. Thanks for sharing with us.
      Char.

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