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    • #12231

      It is not uncommon to read about digital clubbing (finger nail and toe clubbing) as a symptom of pulmonary fibrosis (PF) when conducting an online search into symptoms or indicators of this disease. It is something I watch for on the regular as a patient living with idiopathic pulmonary fibrosis (IPF). Thankfully, it is not something I have noticed yet, but many of the people I know and love living with this disease do have this symptom. To the members of our forum community:

      Have you experienced digital clubbing as a result of your PF diagnosis?

      Is it painful?

      Does it make fine motor tasks more difficult to complete?

      Do you have any tips to managing digital clubbing?

      Please feel free to read more about digital clubbing from a piece that was published on Pulmonary Fibrosis News in 2016 by our very own Michael Nace.

      ****************************************************************************************************

      Digital Clubbing in Pulmonary Fibrosis

       

      Clubbing of the fingertips and toes is a symptom seen in pulmonary fibrosis (PF) and other heart and lung diseases that reduce the amount of oxygen in the blood. The symptom is evident when fingertips are enlarged and rounded in contrast to the rest of the finger. A finger with clubbing at the tips resembles a drumstick-like shape.

      The exact cause of clubbing in diseases such as PF is not fully understood, but the unusual symptom has been identified as a marker of advanced-stage disease and should be reported to a physician immediately. The American Thoracic Society notes that digital clubbing (clubbing of the fingers) may be associated with reduced survival for people with idiopathic pulmonary fibrosis (IPF), but additional studies are needed to confirm that suggestion.

       

      What causes digital clubbing in pulmonary fibrosis?

       

      Clubbing occurs as a result of increased fluid pooled at the ends of soft tissue in the fingers. While the exact reason for this is unknown, clubbing is directly associated with a reduced amount of oxygen in the blood.

      The process of clubbing has been observed to occur in stages. It begins with the stage known as “Scarmouth’s sign” — softening nail beds and shiny skin around the nail. Some references describe the nail as seeming to float above the nail bed. The fingertips then begin to round and enlarge into the drumstick-like appearance. The nail will begin to curve along with the shape of the fingertip. The fingertips may feel warm and appear red.

      Digital clubbing can also occur in the toes.

       

      Treatments for clubbing

      Clubbing is associated with reduced oxygen levels in the blood. In IPF, clubbing is usually treated in conjunction with related symptoms including shortness of breath and breathing complications. Therapeutic approaches include oxygen therapy, which increases the concentration of pure oxygen in the lungs and allows for increased absorption.

    • #12613
      gil
      Participant

      I had not noticed it until my doctor pointed it out during our last appointment. As of today it hasn’t bothered me.  The shape of my fingernails are changing but I have not experienced pain.

       

       

    • #12622

      Hi Gil,

      Thanks for getting in touch and as always, it is so nice to hear from you!

      The digital clubbing isn’t something I really noticed either until I asked my doctor why he was examining my finger nails and hands. He explained the concept of clubbing to me but not very thoroughly so I was still a bit confused until I read the column I posted here. Unfortunately I think I can start to see this happening in my hands.

      Glad it hasn’t bothered you, despite your doctors noticing it and I’m really glad you don’t have any pain with it! I hope you’re enjoying your time with family on the coast 🙂

      Cheers,
      Charlene

      • #28311
        Tammy
        Participant

        What does it look like? I mean I’ve seen it on google but is that really what it looks like

    • #26589
      Bob Foss
      Participant

      I have the clubbing of the fingers, but my main problem is being so weak so fast. I am in year 6 i think. I live in Fl. and visiting my grandchildren in Alabama. I just hope that I can make it back to Fl. Jan.2, I don’t want to be in any hospital or have the children see failing. I will have to change doctors as he keeps calling it COPD and has not been any help.Not that there is anything he can do. Bob Foss [email protected]

      • #26591
        Mark Koziol
        Participant

        Hi Bob, thank you for sharing. Changing doctors can be a boost for your well being. Having a medical professional who will listen to you regarding your healthcare can improve your mental outlook. Please enjoy your family over the holidays. I am providing a link for you to find a Pulmonary Fibrosis Care Center in Florida. https://www.pulmonaryfibrosis.org/find-medical-care

        Have a wonderful holiday, Mark

         

    • #26594
      Rene Hakkenberg
      Participant

      Charlene, I definitely have clubbing in hand and toe nails. They are rounding in both directions, parallel and perpendicular to the finger or toe. I think the nails are Aldo more shiny. There is no pain.

      Have a wonderful Christmas and a better next year,

      rene

    • #26607

      Hello my friend Rene!

      I was thinking of you today and wondering what it would be like to enjoy Christmas in a warm and sandy climate. I’m jealous!

      Sorry to hear of the clubbing in your nails, I hope they aren’t uncomfortable? Glad to hear no pain! I think of you lots and hope you have a wonderful Christmas and all the best in 2021. May it reveal great things for all of us!

      Take care,
      Char.

    • #26650

      My husband does have digital clubbing of his fingers.  That was the first thing his Pulmonologist noticed in early 2014.  It does seem to cause any discomfort but maybe he has had it so long that he no longer notices it?  In any event, he says that he can’t remember (nor I) when he didn’t have the clubbing

      • #28326
        Tammy
        Participant

        When does clubbing start? I mean I am sure everyone is different but would you or could you notice it right away?

        • #28337

          @tammyjbell1972

          Hi Tammy –

          Really good question! Similar to the progression of the disease; clubbing really seems specific to each person and whether they experience it. I have really deep nail beds normally and it feels like the “chubby” or clubbing around my fingers isn’t specific to the disease as I’ve had it for years. I am chronically under-oxygenated but don’t (I don’t think anyways?) experience clubbing.

          Has anyone else noticed and at one point throughout the disease, ie how long after you were diagnosed?

    • #26665
      Rene Hakkenberg
      Participant

      Hi Charlene, I don’t think I have club fingers, but I do have changing nails which are getting bigger, more rounded and shiny. This symptom is not at all painful.

      About Christmas in a tropical island…of course no white Christmas unless you mean our beaches with white sand, haha. We give the presents to our kids on December 5 with the celebration of Sinterklaas who is a bishop from Spain who puts presents in the shoes of kids which they leave outside. The kids put carrots in the shoes so Sinterklaas’ horses have something to eat.  Of course next day the carrots have disappeared which is proof that Sinterklaas is real. It’s a long history. We did not have SantaClaus, but that is also changing due to foreign influences.

      Christmas is not so much for presents but much more a religious celebration of Christ’s birth, going to church usually on Christmas Eve and Christmas Day sometimes sharing a meal with family or friends.

      Sinterklaas is a very wise bishop so next year I will ask him about IPF and the effect of too much oxygen and club fingers.

    • #26730

      Love this reply @renehakkenberg, it made me smile… thanks for starting my day off this way! 🙂

      I’d much rather your version of “white Christmas” than ours, because yours involves a beach and Canada’s is cold. That said, it was the most picturesque, classic Canadian Christmas we’ve had in years this year. The snow began falling Christmas Eve and didn’t stop until Dec 26th. If you didn’t have to drive anywhere, it was really beautiful and my dog sure loved it.

      Thanks for sharing the story of Sinterklaas too! Such neat traditions all over the world.
      Wishing you the very best for the new year my friend!
      Charlene.

       

    • #26767
      Steve Dragoo
      Participant

      Hi Charlene,

      No clubbing as of yet but I do have a couple curved in toenails similar to ingrown caused by diabetes. That got a little worse during the past four months…

      Stay well,

      Steve

    • #26786

      You too, @steve-dragoo … stay well! I’m so glad you’re on the mend a little more than the last time we connected.
      Take good care my friend,
      Char.

    • #26801
      Ron
      Participant

      13 years with IPF. Very slow progression. No treatments although we tried Esbriet and Ofev briefly in 2016. Side effects forced the end of treatments.

      No clubbing on hands but feet have weird shapes on toenails. Had surgery by a podiatrist about the time that my IPF was discovered. My big toes had ingrown nails. Podiatrist cut back the side edge of nails and killed nerves beneath to prevent regrowth. This was done independent of the IPF diagnosis and no one connected the two. Now, I wonder if that condition was connected to IPF.

      Except for the unmistakable honeycomb formation in both lobes of my lungs and some shortness of breath one would wonder whether I actually have IPF.

    • #26812

      Hi Ron,

      Thanks for writing and sharing your experience with us. Sorry to hear the IPF treatment side effects forced the end of treatments, they are both difficult drugs to adjust to, I agree! That said, glad to hear your IPF is very slow progressing, I hope it remains that way for a very long time.

      Interesting about the toe nails too, a few people have mentioned something similar so I would imagine they are related. I don’t have the classic clubbing yet that is described with many IPF patients, but I know lots do. Does anyone else have clubbing or issues with your toe nails and IPF? I’d be curious to hear.

       

      Thanks again for sharing Ron.
      Charlene.

      • #28445
        Tammy
        Participant

        May i ask how they seen the honeycomb feature? What test revealed it?

        • #29761
          Marilyn Cellucci
          Participant

          Hi Charlene,

          Not a question about clubbing, but something Ron had said. He has had IPF for 13 years with very slow progression. So the disease can remain stable for quite some time. Why are we told when diagnosed, that we only have a couple of years left (unless the patient was really badly off when first diagnosed.

          Many thanks,

          Marilyn

        • #29789
          Anne Groves
          Participant

          Hi Marilyn I think that is so wrong also, when I read about fibrosis it said 2/5 years but I have had it for 15 years now. It has deteriorated a lot in the last two years but before that not too bad at all. I got mine through having rheumatoid.

        • #29791
          Marilyn Cellucci
          Participant

          Hi Anne,

          I was originally diagnosed in 2009, but the pulmonologist said it was mild and would just watch it. Actually, she wasn’t sure of the original doctor’s diagnosis either. I guess the doctors don’t even know why the fibrosis can remain stable for years. If they knew, the disease could be stopped before too much damage was done. I hope some scientists are researching it.

          Kindly,

          Marilyn

        • #29822

          Hi Marilyn,

          Thanks so much for writing and good question! I’m not actually sure why patients are only told a few years to live when they are diagnosed, because we know that data is outdated. The 3-5 year prognosis rate was released before either of the two anti-fibrotic drugs were approved by the FDA, so certainly out dated statistics. Not sure if this helps, but unfortunately I can’t answer “why”. I do know we have to challenge what the doctors tell us because I know lots of people who have survived 10+ years with this disease.
          Char.

        • #29823

          Hi Marilyn,

          Thanks so much for writing and good question! I’m not actually sure why patients are only told a few years to live when they are diagnosed, because we know that data is outdated. The 3-5 year prognosis rate was released before either of the two anti-fibrotic drugs were approved by the FDA, so certainly out dated statistics. Not sure if this helps, but unfortunately I can’t answer “why”. I do know we have to challenge what the doctors tell us because I know lots of people who have survived 10+ years with this disease.
          Char.

      • #29723
        Marj
        Participant

        H Char, just reading these posts re clubbing.  My husband has had clubbing in his fingernails for over 2 years (just over 4 yrs since diagnosis).  The thing I dont understand is, if clubbing is caused through lack of oxygen, why are his o2 readings still 94 – 96?

        • #29734
          Christie
          Moderator

          Hi Marj, Yes clubbing is caused by the lack of oxygen. The furthest extremities are affected more noticeably by low oxygen, so the cells that create typical looking healthy finger and toe nails slow down. This is also why pulmonary patients often have very cold hands and feet. Clubbing is not painful, though it may cause some emotional pain to have a visual reminder of the disease. On the bright side, clubbing does go away after consistent sufficient oxygenation. My mom’s went away within the year after her lung transplant. Pretty neat!

    • #28387
      Julie Grace
      Participant

      Yes, have definitely noticed the clubbing in my husband’s toes. Gradual changes over the progression of the disease. Diagnosed in 2019. Is not painful.

    • #28393
      Paulette Daniels
      Participant

      I don’t have clubbing in my fingers (I don’t think), but for years a couple of my nails have grown weird, turning down at the ends in the middle.  I have wondered if this is clubbing.  Also, I thought I had an ingrown toenail on my big toe, but its not.  It did hurt.  I suppose it could be clubbing.

      • #28400
        Christie
        Moderator

        Hi @paulette-daniels, It sounds like minor clubbing in your fingers. My mom’s nails turned down at the ends first, and kind of widened out, then the slope gradually seemed to fill in toward the cuticle until they had the typical rounded appearance of clubbed fingers (toes too). She kept her nails pretty short once they started clubbing. But within a few months after her transplant, the clubbing was reversed! Amazing stuff.

    • #28395

      Hello friends,   I dont really notice my fingers clubbing but my fingernails are. They are flatter and wider and curve over end of finger tips. Nails on both great toes have developed thicker nails and are growing very strange. I feel like I need to file or dreamed off the extra nail, but will consult podiatrist. All of this started when I started Ofev , a drug that has bad side effects, but works. I hate the loose stools , nausea and fatigue, but will stay on it until my lung transplant soon…

    • #28668

      This is almost identical to what my husband’s fingers look like.

       

    • #29786
      Anne Groves
      Participant

      Hi Im new to this site, I live in the uk. I have had fibrosis for a long time now but last two years I have really noticed a big change. I have to have oxygen on walking now. Feel sad about that and am still trying to get my head around it, been since April this year. I have started on Perfenidone 5 weeks in so far. This site is so informative I have learnt many thing about this disease. I also have clubbing my nails bend over quite a bit, I tell my grandchildren I am turning into an Eagle 😀. Wishing u all a good day. Anne 😘

    • #29820

      Hi @annegroves

      Welcome to the forums – we’re glad you found us and I’m glad to hear you are finding the forums helpful… we always like to hear that. Feel free to explore topics and post any that you’re curious about; the forums community is so helpful in sharing their experiences. It’s so helpful to not feel so alone with cruel disease.
      Take care,
      Charlene.

    • #29854
      Sharon
      Participant
      1. I was only diagnosed with ipf October last year. My fingers started clubbing at least twenty-five years ago because I remember my mum noticing them and remarking on them. My mum  pasted away over twenty years ago.
      2. When ever I get a cough instead of it lasting a couple of weeks like the rest of the family I have it for two or three months and it isn’t just a tickley cough its a really bad cough that  wears me out..
      3. I’m really starting to think I’ve had this disease for many years, probably thirty or so!
      4. Is this possible? I’d never heard of ipf until last year.
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