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    • #20545
      JillT
      Participant

      I’m wondering if anyone has similar issues with dental pain/issues?

      I seem to get quite frequent pain in both jaw and individual teeth, even becoming convinced on a few occasions that I have an abscess brewing including painful lumps under the gum, etc.  Yet when I visit the dentist and they take XRays, no infection or signs of issues are found. A few times it’s happened with teeth that are already dead with existing root canals in place. It’s quite bewildering and I’m wondering if the low oxygen levels can somehow affect our teeth and jaws? Or am I losing my mind, lol?

      I’m currently going through assessment for supplemental oxygen due to the low saturation levels I’ve been experiencing with exercise/exertion and wonder if I can expect that my dental and other pain will improve once oxygen levels are more stable with supplementation?

    • #20546
      Cindy Sears
      Participant

      Hi Jill,

       

      I am also having trouble with a tooth that has had a previous root canal.  I am on antibiotics and was just starting to wonder  if the antibiotic is working.  I am on OFEV and was wondering if that was affecting things. I am not on oxygen at this time.  No definite answer for you but you are not alone with this!

      Cindy

    • #20582

      Hi Jill,

      Great question – thanks for raising this important topic for discussion in our forums. I can’t relate to any type of dental pain, and haven’t been made aware that low oxygen levels can cause any type of issue with our teeth or jaw. That said, it certainly could be possible and I’m just not aware of it! I’m glad you’re getting checked out for this, especially for infection, as my transplant coordinator informed me that the fastest way to a widespread blood infection (ie. Sepsis) is through our gums. Therefore it is very important for us to keep our teeth healthy and see dental care specialists regularly. I’d say this is definitely something worth asking the oxygen specialist about as you complete your assessment for supplemental 02. If you find anything out from him/her, do you mind reporting back? I hope the pain subsides for you soon!

      Thanks for sharing your thoughts as well Cindy, although sorry to hear you’re also experiencing dental pain. Keep in touch and let us know how you both make out regarding this.

       

      Regards,
      Charlene.

       

       

    • #20630
      JillT
      Participant

      Thanks for replying, Charlene and Cindy.

      I’m seeing the respiratory nurse tomorrow to discuss POC options, so will ask about this and pain in general. I get really weird and wonderful (and sometimes fleeting) pain in many places these days. It seems quite bizarre when I try to explain it though. ISTR seeing an article on IPF and chronic pain somewhere, but now I’ve tried to relocate it, I’m unable to do so. Add in a reduction of my ability to concentrate these days and I seem to be having a lot of “senior” moments, lol.

       

      • This reply was modified 1 year, 4 months ago by JillT.
    • #20657
      Cindy Sears
      Participant

      Jill,

      I met with my Open Doors educator and he told me that just as OFEV slows the progression of fibrosis , it slows down the healing process. So when it seemed like the antibiotics were not working on my tooth infection, it was probably the slowed healing process.  It took longer than what I considered usual for the pain to go away but it finally did.  He said if you are going to have surgery they will usually take you off the OFEV for a few weeks prior to the procedure to allow for healing.  I was not aware of this information so maybe it will help others who are not aware.

      God Bless,

      Cindy

       

      • #20664
        Mark Koziol
        Keymaster

        Hello Cindy, thank you for this information. I think it well help our members and correlate why some members are prone to illness when on OFEV. Mark

    • #20706
      Lindas
      Participant

      Hi Jill ( @jill-tanner ) thanks for bringing mouth pain to the forum. I have experienced tooth pain and mouth pain. Dentist & Dr. found nothing. I was recently in the hospital with pnemonia and found out that foot and hand tingling and itching was due to oxygen problems. I am on 24/7 but the extremities weren’t receiving enough. They prescribed gabapentin in a low dose and cleared that up. It also seems to relieve the mouth pain. Please let us know anything you find out. Good Luck

    • #25899
      Thom
      Participant

      Hello everyone.  Its been a while since ive checked in. I hope everyone is doing alright.

      I am doing very well, all things considered.   Dealing with Ofev is tough business.  Diarrhea being the worst, and lately vomiting.  So it is! Now something new, so i thought I’d see if i was alone with this new development.

      My teeth are healthy, i visit a dentist every 3-4  months.

      Recently ive been getting pain along the gum line.  It moves from lower jaw to top jaw.  I have a tooth i chipped as a child.  I never hurts, now suddenly it does.

      I see i am not alone, at least two others experience the same.  They were posted about a year ago.  To those two, are you still experiencing pain.  Are there others that have this?

       

      Thanks.

      Thom

    • #25904
      Kathy witherspoon
      Participant

      This is my first time posting on this site.   This has been a wealth of knowledge that has been so appreciated.  I have just recently had a final diagnoses of IPF.  This thread hits home as I just had dental diagnoses that prompted dental surgery.  I have not started meds as the dental issue has to be resolved first.  The dental problem started the first of the year on a tooth with root canal.  Nothing showed in exray and could not tell which tooth it was.  They made me bit plate and assumed that would solve the issue.  6 months latter went back and exray showed a broken root down in the bone. It was either implant or pull and have a bridge. During this time my diagnosis was made.  Now waiting for healing to go forward with bridge.  Could not take a chance that I would feel nauseous will he is in my mouth.

    • #25910

      Hi @kwitherspoon64

      So sorry to hear of this new dental diagnosis, Kathy. That must be frustrating while also trying to accept/digest a final diagnosis of IPF too. I hope you’re being gentle with yourself during this time, and are able to get the support you deserve. Feel free to write this group anytime – I may be bias, but the people on here are incredible!

      This discussion is timely as I have a dentist appointment this coming Wednesday. Was your dental visit due to pain Kathy, similar to @thom? I’m curious if this could be medication or disease related somehow? Curious to hear your thoughts….

       


      @lindaserritel
      @jill-tanner : were either of you able to ascertain if your dental/mouth pain was connected to your lung disease?

      Charlene.

    • #25915
      Kathy witherspoon
      Participant

      I don’t really  know yet if the two are connected.  Everything has been happening at he same time.  I am putting off taking Esbriet till the major part of a bridge in my mouth is done.  I’m sure this is not going to be easy on my stomach.

       

    • #25926
      Janey Henderson
      Participant

      I too suffer with an incredibly sore mouth. It’s particularly painful where the gum meets the lip, feels as though its been cut. The only thing that helps is soluble painkiller which I then hold in my mouth for as long as possible. It’s so bad that it prevents me from eating at times.

    • #25928
      JillT
      Participant

      Can’t say my situation has resolved. I’ve been on supplemental oxygen for just over a year. I’ve never taken either of the IPF drugs, so that can’t be part of the issue in my case. I’ve basically tried to ignore any dental because every time I get a checkup or cleaning, dentist isn’t finding anything problematic. I also find my teeth are extremely sensitive to dental cleaning and it only seems to get worse over time.

    • #25930
      Suzanne R Brennan
      Participant

      After about 6 months on OFEV, I started experiencing some gum line redness, swelling and pain. My regular dentist recommended I see a periodontist, which I did. His office did a very “deep” cleaning and then recommended that I see my regular dentist every six months and the periodontist every six months, so having my teeth cleaned every three months. While the listed side effects for OFEV didn’t mention gum issues, my pulmonologist suggested that between that and the constant GI issues, I switch to Esbriet. I did that over two years ago and while I get an occasional flare up of redness and/or swelling, the pain has gone away.

      Also, the periodontist prescribed a mouthwash they called “magic mouthwash” to rinse with twice a day. It had an antibiotic, an anti-fungal, lidocaine and one other ingredient that I can’t recall now. It had to be made up at a compounding pharmacy and refrigerated. I used it for about nine months or so and it helped quite a lot. I also started taking a probiotic during that time, which I still take.

      I’m not sure which of the above helped or if I needed all of them but I rarely have problems now. I hope this is helpful.

    • #25932

      Hi Suzanne,

      Thank you so much for sharing and yes, I found this particularly helpful and would imagine many other members will too! Interesting that your doctor switched you from Ofev due to the dental pain + GI issues, and I’m glad they have subsided since starting on Esbriet. I’ll keep that in mind, as I just went to the dentist as well and am on Ofev.

      Regarding the “magic mouthwash” I agree with you 100% – the stuff is amazing! I also use it, and swear by its effectiveness to help heal any mouth sores (I get a lot of canker-sores) and prevent any type of pain, swelling or infection. Thanks for sharing 🙂
      Char.

    • #25933

      Thanks for sharing Jill, though sorry to hear the situation has subsided for you. That must be frustrating as dental pain is such an annoyance. My teeth have also become really sensitive, which I thought was attributed to the Ofev, but maybe it is 02 use? Something to think about. I hope you’re doing well!
      Charlene.

    • #25934

      Hi Janey,

      So sorry to hear this! It sounds as though dental pain might be more common for IPF/PF patients than we think, which is so unfortunate, as if we don’t have enough to deal with. Check out @suzrbrennan ‘s post below regarding the “magic mouthwash”, it has been a saviour for me and I wonder if it will be just enough of a mix to alleviate some of your discomfort. Worth a try I think as it isn’t invasive! Let us know how you make out 🙂
      Charlene.

    • #25939

      Let us know how you make out Kathy, we’ll be thinking of you! Goodluck with the dental procedure.

      Charlene.

    • #26145
      Marianne
      Participant

      Hi all –

      Wonder if the dental pain could be from grinding your teeth at night.  My dentist suggested I get a custom made mouth guard and wear it at night.  I have had issues with my gums before I was diagnosed with IPF.  I have gums that are ultra sensitive and bleed alot.  My gums and teeth looked better at last checkup.  Only diet change I have made is I do not drink iced tea as often – so teeth were cleaner.  I also switched toothpaste to Crest Gum Detoxity.  Floss teeth more and use electric toothbrush.  Hope this helps.

      Marianne

    • #26146
      Thom
      Participant

      My pulmonologist had no idea why my teeth and nothing else hurt. Neither did my dentist. So pulmonologist suggested a CT scan. Meanwhile i went to my GP. As soon as i told him why i was there he said sinus infection. He examined me, again he said sinus infection. Gave me an antibiotic for 10 days. I felt great, pain was gone. Meanwhile pulmonologist said results of scan said sinus infection. He said i need to go to ENT dr. That will occur next week.
      GP said the major cause of pain in teeth is sinus
      Infection.
      Hopefully my answers come next week
      Thom

    • #26148

      Thanks so much Thom, this is very helpful! I remember hearing how often dental pain is associated with sinus issues from one of my friends with CF (CF’ers often have sinus issues) and I’d completely forgotten about that association until your note. Glad the 10 days of antibiotics helped with your pain and good luck with the ENT. I’ll be thinking of you!
      Char.

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