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If anyone out there can make sense out of this....

Posted , 9 users are following.

Roda_4445
Roda_4445

a summary - will was convinced by my rheumatologist to take Prolia shot( have osteoporosis and PMR). Probably a month later I had pain around my 5 yo right molar implant. Antibiotics weren't touching it so oral surgeon removed it. He did find a piece of necrotic bone at the site of the implant. That was Oct 8. We were scheduled to leave NYS for 6 mo in Florida, which we did. Gum was healing fine after dry socket but under control. Then slowly I developed aching in right jaw,escalating to strong persistent pain. I saw a dentist here in FL as well as a root canal specialist. Who could find no other teeth problem. Conclusion drawn by GP that I had Atypical Trigeminal Neuralgia. After many ineffective drugs including Lyrica, ended up on gabapentin 2 100 mg daily. Seemed to calm down. THEN - developed swelling dead center under jaw and swelling under tongue. Treated as an infected sublinginal salivary gland. Treated with doxycycline- calmed it down tho not S completely. Went off to CA for Xmas- developed nasty facial rash from some sun exposure 4 days after finishing the doxy.  That cleared up over that week. Day we get back home, my LEFT  what appears to be my submandibular gland swell and pain severe. Now on erthryomyacin. This, dear reader is where I am. I have had two CAT Scans of jaw and face that are negative. I spent two long visits in the ER. I fear lymph node involvement or worse.  Isn't an MRI in order? Wouldn't it show more of the bone. Concerned of necrotic bone. This all has gone on since removal of implant Oct 8 - and now its nearly 3 months later and no closer to the cause. Have apt next week with Rheumi to pick his brains and an oral surgeon the following.

any input....please and thanks??

0 likes, 15 replies

15 Replies

  • amkoffee
    amkoffee Roda_4445

    Posted

    I don't really have any answers for you, and I'm sorry that I don't. If your oral surgeon doesn't have any answers there may be other oral specialist that do. And I agree with you that an MRI would seem an appropriate next step to take. Good luck.

  • Nefret
    Nefret Roda_4445

    Posted

    It does call for more investigation I would think, but dental implants are far more common in the US than in the UK so don't have any knowledge to go by.  You don't say when you were diagnosed with PMR or what dose of steroids you are currently taking - it can have a bearing on current matters.

    I've had problems with TN over the years as have other patients I have encountered, so having both PMR and TN isn't unknown.

    I have also been on Prolia for some years now without any discernable side effects.  As with everything on this PMR journey we all react in our individual ways to the different conditions we face (sometimes on a daily basis).  

    • Roda_4445
      Roda_4445 Nefret

      Posted

      Opps- forgot to include that I have had PMR for 4 yrs with no obvious symptoms. Reducing slowly fro 4 to 3.
    • Roda_4445
      Roda_4445 Nefret

      Posted

      Opps- neglected to include the fact that I have had PMR for 4 yrs and trying to reduce from 4 mg pred to 3.

      I look like I have one sided Mumps! What is going on!

  • erika59785
    erika59785 Roda_4445

    Posted

    My suspicion would be that the prolia shot for osteoporosis might have caused these problems with your teeth/jaw.  It is known that AA, like Fosamax intake, can cause problems for the jaw and actually hips.  I tried Fosamax and discontinued because of a sphincter in my esophagus. 

    My Rheumy suggested to consider IV Reclast once a year which is probably like the prolia injection for Osteoporosis. I read the side effects, and I will refuse.

    I am truly sorry that you have to go through this!

     

    • Roda_4445
      Roda_4445 erika59785

      Posted

      I believe you could be right. I had dental problems after taking fossomax way back when it first came out or couple of yeArs after. Stopped it. This year rheumatologist suggested prolia and I argued with him. He stated that they don't work in the same way, this is safer, works in a different way. My oral surgeon who removed the implant and found a piece of necrotic bone in that area said " Ha!" To the rheumi's remark. I should have been more persistent and refused. I am so concerned that this will keep happening as I have a lot of implants. Many thanks for your input

    • EileenH
      EileenH Roda_4445

      Posted

      They don't work in quite the same way - but there are those who would suggest that the way Prolia works is even worse (I don't want to get into the argument, I doubt I'd accept any of them!)

      "Like the bisphosphonates, denosumab (trade names Prolia, Xgeva)(1) also prevents osteoclasts from removing old, damaged or worn out bone. It just does so via a different action than the bisphosphonates — an action that may turn out to have even more harmful side-effects. Instead of poisoning already mature osteoclasts (which is what the bisphosphonates do), denosumab prevents the precursor cells for osteoclasts from ever developing into osteoclasts."  

      I think I might argue with your rheumy - it seems an even more extreme version of the same mechanism to me.

      None of them have long term studies, they haven't been around long enough. And when they don't exist - you really don't know anything is totally safe. The one thing we do know about pred is the long term effects since it has been in use for over 50 years...

    • EileenH
      EileenH

      Posted

      PS - just found this "Similarly to bisphosphonates, denosumab appears to be implicated in increasing the risk of osteonecrosis of the jaw (ONJ) following extraction of teeth or oral surgical procedures but, unlike bisphosphonate, the risk declines to zero approximately 6 months after injection"

      So at least if you have no more infusions, the risk seems to be removed whereas the bisphosphonates remain in the bones and are never got rid of.

    • Roda_4445
      Roda_4445 EileenH

      Posted

      Thank you, Eileen for your knowledgeable answer. Though I am a bit lost on the osteoclasts, I get the just of your info... hopefully the Prolia( injected in Sept) should run out of steam by March. My question is should I demand an MRI? Seems like there is not much to be done about it but I would like to be proactive. Have apt with a Oral Surgeon the 16th ( not the one who removed implant as he is 2,000 mi away). Would he recommend that? Implant removed from right jaw, now swelling and pain left jaw and submandibular gland, or so they tell me (GP). On erythromycin now.Have had two cat scans of soft tissue of mouth and face with little to show on right. Any other suggestions. Thanks- your knowledge has been a Godsend to so many people.
    • EileenH
      EileenH Roda_4445

      Posted

      No - sorry, don't do teeth! Good luck though - I regard my teeth as very precious - but they are all originals except for one ceramic inlay!

    • Roda_4445
      Roda_4445 EileenH

      Posted

      Not sure what you refer to "don't do teeth!" I wish I were so lucky to have my original teeth but over time I had implants replace teeth in very poor health ( runs in the family). I am asking you if an MRI would show necrotic bone where I now have swelling? I am so sick of this!

    • EileenH
      EileenH Roda_4445

      Posted

      I meant I don't know about teeth, this is a PMR/GCA forum and that's what I know most about. I have never had such problems so I don't have an informed answer to your question. All I can tell you is that in the early stages bone scintigraphy or MRI are the preferred imaging modalities and x-rays only show the damage at much later stages. That is something you have to discuss with your dentist.

  • FlipDover_Aust
    FlipDover_Aust Roda_4445

    Posted

    This is exactly why I stopped having it!

    I took the info on Prolia to my GP who was insisting on giving it to me - we had 'words'. I won.

     

    • Roda_4445
      Roda_4445 FlipDover_Aust

      Posted

      Wish I had stuck to my instincts! Demanding an MRI to make sure there is not necrosis in the jaw on left
    • erika59785
      erika59785 Roda_4445

      Posted

      My heart goes out to you!  These doctors....not all....but one has to be so cautious and say NO.

      I will have to when I meet with my Rheumy in a month.  She will insist that I need the Zometa injection because of indication of osteoporosis.  I keep taking calcium with D and Magnesium ---- also Gentle Yoga which has been helpful----and I watch my steps carefully to prevent falling.

      All the best to you, and I hope you can the MRI can give some answers.. 

      She also wants be to go down to 0 prednisone.....I am on 6 mg and will stay there for a month or more.

       

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