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Old 09-22-2007, 12:04 AM   #1
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Accutane and osteomyelitis/osteonecrosis of the jaw

Edited due to identifying information..

Last edited by susanl95; 03-03-2008 at 09:41 AM.

 
Old 09-22-2007, 08:43 PM   #2
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Hello -

Have you tried reviewing accutane and osteolysis/osteomyelitis in the mandible? I'm actually doing some research on my own. I've been slowly losing bone in my jaw over a number of years with no explanation. I do not have gum disease. In my research, outside of metabolic disorders, one of the websites I read did mention accutane and osteolysis. Try searching for it and you may run into it. I believe it was a research paper.

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Last edited by Well-come; 09-23-2007 at 09:19 PM.

 
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Old 09-23-2007, 12:36 AM   #3
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Hi KKL....you mentioned you have been loosing bone in your
jaw over a number of years......did your dentist tell you this?
If he did, did he provide you with any explanation? I think,
and this being my own opinion, that as you age osteoporosis
hits some of us harder than others and you will suffer bone
loss all over. Also are you on any oral bisphosphonates like
fosamax or boniva? That could explain it......karen

 
Old 09-23-2007, 01:24 AM   #4
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

No. My dentist did not provide an explanation for the bone loss. I have seen many dentists, and they are at a loss as to why it is happening. Some have mentioned my bad bite. I have an open bite. I am seeing an endocrinologist and had a Dexascan for osteoporosis a few months back. It was negative. I am trying to rule out systemic disease and am going through a battery of blood tests.

 
Old 09-23-2007, 02:26 PM   #5
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Edited due to identifying information..

Last edited by susanl95; 03-03-2008 at 09:41 AM.

 
Old 09-23-2007, 03:50 PM   #6
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

I've never been on accutane, but I have been on Retin A cream before. This was many years ago. Yes, I do have pain in my jaw, but I also have TMJ. My joint pops and clicks. My teeth do not meet together the right way so I always assumed the pain was because of my bite. But... all the research I see show that a bad bite does not cause bone loss unless there is inflammation in the gums.

 
Old 09-24-2007, 09:02 AM   #7
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

When I started with severe tmj problems in 2004 I tried researching this issue but could not find anything conclusive but still feel it may be the cause of my bone loss and now my chronic tmj. I had 2 rounds of treatment with accutane 6 years apart from each other and started experiencing bone & tooth loss despite my regular dentist telling me I did not have evidence of peridontal problems. After my front teeth fell out I went to a periodontist and the most he could do was treat the gums but could not explain why I was losing bone (didn't know anything about accutane causing it) and subsequently teeth other than to say it may be hereditary. I asked my dermatologist about it and all she could confirm was that she did see changes going on in my face over the years which is why she lowered the doseage the 2nd time around.

I even went to the Acne forum on the health boards and inquired about it with other members to see if they had heard or experienced anything similar. At the time I did find some studies on the internet that had been done on it but most were inconclusive or done on a such a random basis results could not be defined as being conclusive. The most I found as being conclusive is that it can cause future degenerative changes within the musculoskeletal structure but not limited to the jaw alone and only when the accutane was prescribed at high doses for prolonged periods. Also the studies seemed to indicate that for some individuals their bodies stored the accutane which prolonged the continued degeneration.

While its true a poor bite can cause tmj and bone loss I had braces in my 20's which supposedly corrected overcrowding and crooked teeth - but braces can also contribute to tmj down the road - at least that is what I am now being told - since the teeth often drift back to their original positions. Poor dental work such as crowns or bridges can also contribute to bone loss as well as clenching or grinding.

I am not sure what caused all my problems but if you do find anything linking accutane to jaw problems, please let me know. To be honest I don't think most of these drs know a lot about this so they only can tell you about what they have been told or have read about themselves which makes things even more confusing since most people tend to think drs should know everything and even they themeselves do not want to admit they are not well informed or are lacking in their knoweldge.

Last edited by Thelma-Louise; 09-24-2007 at 09:04 AM.

 
Old 09-24-2007, 10:39 AM   #8
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Thelma-Louise - Have you had your thyroid checked? Have you been checked for metabolic disorders? I also post on the thyroid board, and I met another gal on the board who also has bone loss and has lost several teeth. She is hyperthyroid and from what I understand, hyperthyroidism can cause osteoporosis (bone loss). I've had a basic thyroid check before, but my endocrinologist has recently approved of an expanded thyroid panel. I'm getting tested this week, so we'll see what the results are.

 
Old 09-24-2007, 05:14 PM   #9
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

I had basic blood work done at the start of my tmj symptoms and results were normal and did not warrant the more expansive testing plus I do not have any of the more common symptoms of thyroid related conditions however I did have female hormonal problems during my teens through my 20's and 30's but they seemed to level out the older I got. Make sure your ATCH is checked as well as the levels of your T3 and 4. My sister had the expanded panel done 3 times now and each time something different pops up but nothing conclusive so I am not sure how accurate these tests are which is why some people end up looking for holistic and herbal remedies often.

 
Old 01-07-2008, 07:11 PM   #10
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

I don't know if anyone is still following this thread but just in case...I just found this site today and this thread shocked me. I was told after 2 yrs of severe chronic jaw pain that I have Osteomyelitis. And I have been on acccutane, once when I was younger(sometime around when I first started having the dental problems where my jaw pain is currently) for a normal treatment time(3-6 mths, can't remember exactly). The part that really bugged me out was I was also on it briefly in '04 right before the first time I started to get the chronic pain. I actually had to stop it mid treatment b.c I was having other health problems and it made me very sick. That was the first time I felt the pain, then it went away after a few days, only to return again almost a yr later in May of '05 and I have had it every second of my life since. I just shared my story in other threads so won't go into the whole thing but wanted to share here as well b/c of the Accutane connection. I am currently pregnant btw and am having an extremely difficult time figuring out how to deal w/ the pain due to that...and it scared me to read that Accutane may somehow get stored in your body b/c I know it causes birth defects. So far my baby looks healthy though so I pray that if it has affected me and my jaw that at least she will be spared. Anyway please let me know any more info on this topic, I am desperately looking for answers and maybe this is another piece to the puzzle.
Gigi

 
Old 01-12-2008, 08:14 PM   #11
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Gigi,

Wow, I am so so sorry to hear about your jaw problems. I will keep you and your baby in my thoughts and prayers!!!!

If you don't mind my asking, who diagnosed your osteomyelitis? (not asking for names, just whether they were an oral surgeon, general dentist, etc.) And HOW did they diagnose it? (what tests were used, biopsy? etc.)

It's very important to find someone who knows how to treat this...my understanding is that those kinds of dentists/doctors are far and few. But luckily you live in Astoria, so you have all the resources of NYC available to you. I lived in Astoria for 3 years, I miss it!!

Please keep us posted about your situation, and I wish you the very best of luck in resolving it...

 
Old 01-12-2008, 09:32 PM   #12
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Hi again I saw your other reply to me first so am just responding here as well. Thank you for all your good thoughts and wishes for me and my little girl. To answer your question...the person who diagnosed me is a holistic based dentist who also specializes in laser dentistry. I found her b/c I was doing research on NICO which I am still not completely convinced I don't have...anyway she was recommended by another dentist who specializes in NICO so I started seeing her but her "diagnosis" was that it is osteo myelitis, not NICO. I am really not 100% sure about her, honestly, she's very vague and I had to pressure her even to get any diagnosis and when she told me that's what I have she wrote it was "from healing" which makes no sense to me from the research I have done on it. She made it sound as though it would heal on it's own if I didn't do anything except take herbs and supplements when I am not pregnant anymore(which I was doing for mths before getting pregnant and it did not change my pain at all). She also kept telling me my pain should decrease now that I'm pregnant and it has gotten 1,000 xs worse and is now on both sides of my mouth, though I still don't know if what is happening on my right side now is the same thing or if I am just taking a long time to heal from my recent extractions. So the point is, obviously I need to find someone else to properly diagnose me when I am not pregnant. Anyway yes Astoria is great I love it here but I have had no luck so far finding good or knowledgable drs in NYC...I have been to so many. Would love to here about your experience if you feel like sharing. take care and thanks again.
Gigi
p.s. sorry I rambled on but didn't fully answer your question...she only diagnosed it by looking at my cavitat and ICAt and having worked w. me for awhile. No bone scans or biopsies!

 
Old 01-12-2008, 10:54 PM   #13
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Edited due to identifying information..

Last edited by susanl95; 03-03-2008 at 09:41 AM.

 
Old 01-13-2008, 08:54 AM   #14
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Hi Susan,
Thank you for the info. The test you mentioned, the CT scan, what is that exactly? I need to see a dental radiologist for that?

So osteomyelitis and NICO are totally different things then? They sound similar to me. The surgeon I have been seeing actually brought up NICO to me, originally saying that's what he thought I had, now he's backtracking and saying he's not sure b/c my holisitic dentist said osteomyelititis. I def. need a new surgeon though and will look for infectious disease person as well, since this surgeon is basically telling me my situation is hopeless and nothing can be done. I'm not going to bring up NICO to anyone else unless they do, just stick w/ the osteo thing since that's really all I have to go on now anyway. And thanks for the advice about not getting into feeling anxious, I don't start out doing that I just give them the facts. It's only when I feel like I am not being taken seriously that I start talking about how badly I am feeling and functioning b/c I am hoping that then someone will listen to me. But I think you're right, it ends up having the opposite effect.

No I have not been on antibiotics or antifungals for this infection since the pain started. part of the problem I think is in the past I have taken huge quantities of antibiotics for various reasons and health issues and I have a severely weakened immune system from that. I even think there is a link btwn that and why I developed this problem. So I am very wary of more antibiotics unless there is no other alternative. I have had antibiotics for other reasons while dealing w/ the pain but not a type I think would help that area. I would be much more comfortable taking anti-fungal meds as I think the rest of my body needs them anyway as well. Could this be treated w/ just those and not antibiotics as far as you know? What type do you take and also what pain meds if you don't mind me asking? I am curious b/c I have experienced that pain meds don't seem to help that part of my jaw much at all, I am only taking them again now b/c I am having problems w/ the other side too.

I am so sorry to hear you are still going through this as well, it is just devastating. I hope that you are able to find an answer to help you soon! Take care.
Gigi

 
Old 01-27-2008, 07:00 PM   #15
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Re: Accutane and osteomyelitis/osteonecrosis of the jaw

Hi, my question/comment applies more to the Accutane concerns...I am just starting to do some initial research on the potential lingering side effects of Accutane for pregnant women. I am 28 and thinking about becoming pregnant in a year or so and my dermatologist recently proposed that I go on Accutane to clear up a cystic adult acne problem. I would be on it for about 6 months, at a very low dose. Because Accutane causes such severe birth defects and because of the comments in the posts regarding Accutane being stored in you body long after use, I am extremely concerned...really, just trying to make an informed decision.

Does anyone know about potential birth defects related to previous Accutane use? How about any good studies to read about or websites? Any help would be greatly appreciated.

Of course my dermatologist says that she's never heard of any connection between previous Accutane use and birth defects...and obviously I would rather have a healthy baby over a clear face...not sure it's worth the risk.

[Note that members can't post websites with advertising. Please read more about this and other rules by clicking the "Posting Policy" above. Thanks - Well-come Moderator.]

Last edited by Well-come; 01-27-2008 at 07:45 PM.

 
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