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DEE
04-18-2011, 05:40 AM
Just recieved my dental assessment.
The assessment was done by consultant in special care dentistry,and a consultant in special care +specialist in oral surgery.
I have eight teeth that need sorting
a) REMOVING COMPLETELY
b)RETAINED WITH A ROOT FILLING replaced by a denture
c)CROWN AND ROOTCANAL TREATMENT
There are several factors as to why I'm in this postion thats not what bothers me.
As I feel uncomfortable having dental work done I have asked for sedation and local aneasthetic.
A meeting of the above consultants,consultant Anaesthetist and my wg consultant
came to the conclusion that it would only be done one tooth at a time with follow ups through the healing proccess.Also with the addition of two intravenously given antibiotics followed by a week of oral anti b.
Due to the high risk of osteonecrosis or leaving a large non-healing area Im having a meeting with the consultants to decide which path I want to go .
Would appreciate any advice ,sorry its such a long post but was the only way to give you the full picture :ohmy::confused1: Thanks for help DEEx
ps the three options above are available for each tooth.

drz
04-18-2011, 06:06 AM
Just recieved my dental assessment.
The assessment was done by consultant in special care dentistry,and a consultant in special care +specialist in oral surgery.
I have eight teeth that need sorting
a) REMOVING COMPLETELY
b)RETAINED WITH A ROOT FILLING replaced by a denture
c)CROWN AND ROOTCANAL TREATMENT
There are several factors as to why I'm in this postion thats not what bothers me.
As I feel uncomfortable having dental work done I have asked for sedation and local aneasthetic.
A meeting of the above consultants,consultant Anaesthetist and my wg consultant
came to the conclusion that it would only be done one tooth at a time with follow ups through the healing proccess.Also with the addition of two intravenously given antibiotics followed by a week of oral anti b.
Due to the high risk of osteonecrosis or leaving a large non-healing area Im having a meeting with the consultants to decide which path I want to go .
Would appreciate any advice ,sorry its such a long post but was the only way to give you the full picture :ohmy::confused1: Thanks for help DEEx
ps the three options above are available for each tooth.

Sounds like an horrible ordeal to endure. Sorry to hear that.

If your treating rheumatologist recommends this as best way to deal with the procedures to minimize risk I guess I would trust their judgement and hope for the best.

DEE
04-18-2011, 06:17 AM
I agree with the treatment its just which one to take . :huh:
off the three options !

pwc51
04-18-2011, 07:24 AM
My teeth seem to be cracking up one by one! Local anasthetic and a filling seem to have fidxed them so far - with no untoward side effects.

My dentist did comment that, if on alendronic acid, as I am, this can present problems with healing if extractions are necessary.

Sangye
04-18-2011, 08:46 AM
Yikes Dee. That gives me the heeby-jeebies. MAJOR dentist phobia here.

elephant
04-18-2011, 08:59 AM
Dee, I don't know what to tell you. Whatever you decide will be best for you. Good luck!

ArlaMo
04-18-2011, 12:14 PM
Hopefully, Palmyra will see this and chime in. She gave me some good advice a month or so ago. I only had one bad tooth and it had to come out, but the perio wanted to do an implant. After consulting with Dr. Langford at CC, he ended up pulling it but not doing the implant. He did put some bone graft in there to try, but I don't know how well it is doing. I see him this Thursday. He decided to wait until I'm done with my rtx infusions and on a much lower dose of pred before trying the implant. Currently sporting a big hole :unsure:

Palmyra
04-18-2011, 01:35 PM
Hey there....I am happy to be of some direction within the group..../Dee has contacted me, and hopefully we can guide her to appropriate answers to her concerns.

Big group hugs to all. My daughter Alison had her second 'whamy' infusion of RTX this past week, and all is good so far. Fingers crossed for no subsequent infections!

PS...don't be afraid of dentists, please be afraid of staying away. It only gets worse the longer you wait. XOXO, 'Palmyra', Jane

pberggren1
04-18-2011, 04:40 PM
I have not been to a dentist since May of 2007. I have not had any issues really. Some sensitive teeth for a couple of weeks and numb sore teeth when I had the sinus infection going on. But other than that they have been good. Maybe next year when I am off the antibiotics and hopefully a lower dose of pred I will make an appointment.

Psyborg
04-18-2011, 10:21 PM
Just make sure you don't wait until you get an infected tooth. I'm pretty sure my tooth infection was seriously slowing my treatment progress. Just my experience though...your mileage may vary :)

Palmyra
04-19-2011, 12:46 AM
I strongly recommend dental cleanings every 6 months (I see some patients as frequently as every 3 months)....especially for Weggies that are immunosuppressed. We harbor a mine field of bacteria in our mouths. :frown: Clean out those bad actors from under the gum line, and arrest decay, before the problems start.

It sounds as though Dee has been on bisphosphonate drugs to prevent osteoporosis (a frequent side effect of long term pred use,) which makes dental treatment a bit difficult....all the more reason to have regular cleanings and checkups.

Sangye
04-19-2011, 01:22 AM
PS...don't be afraid of dentists, please be afraid of staying away.
I grew up in a military family and we moved at least once a year. Each time we moved we had to find a new dentist. When I was about 4, my parents took me to a "pediatric" dentist who'd been recommended to them by other military families. I had to have a filling done and they made my mom wait in the front room. At some point I started to cry. The dentist put his hand over my mouth and nose and I couldn't breathe. He said he'd stop when I stopped crying. From that point on I had a sizeable fear of dentists.

In my teens we found a great dentist and over the course of many years I began to relax my fear. Then he retired and his replacement decided one of my old mercury fillings should be replaced before it broke. Novocaine had always worked, but it didn't work. He did multiple injections, even into the jaw. Finally he had to do the filling without numbing. The same thing happened with a second tooth. Same thing with another tooth being capped by another dentist. During that one, even gas didn't take away the pain when the drill hit the part of the tooth that wasn't numb. I was so drugged that I couldn't scream. It was like a nightmare--like being awake during surgery and no one knows it.

I'd say I have a legitimate fear of dentists. :laugh:

chrisTIn@
04-19-2011, 01:59 AM
I'd say I have a legitimate fear of dentists. :laugh:

I guess you have...:scared:
Still hope you'll find a good dentist soon. :wink1:

Palmyra, I go to the dentist every six months, and -since my Wegs dx, have dental cleanings every three months.

Palmyra
04-19-2011, 02:35 AM
Oh Sangye! I am so sorry for your experiences! I don't know which is worse, your childhood trauma or poor experience with local anesthetic. I have heard many similar horror stories. So, that said...yes, there are some poor practitioners out there, and just like finding a "good" doctor, it is very difficult to screen dentists before finding a really good one.

One suggestion for here in the states....call a local specialist's office, such as an oral surgeon or periodontist (board certified), and ask for a couple of referrals for a really good general dentist. Be specific and ask for someone that is ethical and conservative, does really good work, and provides excellent anesthetic management. I actually think many Weggies would benefit from seeing a periodontist, just because of the complexity of your medical condition. Most periodontists graduated in the top of their class (its competitive to get into the specialty,) and have extra training in oral medicine and pain management.

I worry about those of you outside the states....it is one thing we can be proud of here, we still have great dental schools and if you look, you can find excellent providers. It is not without cost, and that is why I stress preventive care. So much can be prevented before it becomes painful or expensive. NOW GO FLOSS!:biggrin1:

Sangye
04-19-2011, 02:49 AM
Except for the childhood dentist of course, all the other dentists I saw were excellent and family members did well with them through numerous root canals, etc.... Novocaine just stopped working for me.

Right before I was dx'ed with Wegs I broke a molar (on a Saturday, no less!). I was literally hysterical with fear. I went to a dentist recommended by my naturopath buddy. He was a young dentist but incredibly compassionate and talented. We didn't know that my lungs were hemorrhaging. I was extremely weak and in excruciating joint pain. He was so patient. He got it numb with one shot. I still couldn't relax. (The other guys had also gotten part of the tooth numb and it was only when they'd drill the un-numbed part that I'd go through the roof.) He would drill for a count of 10 and then let me recover. It took hours to do the cap. Never once did he or his hygienist give any vibe of impatience. Despite that, I never could calm down and was hysterical crying and gasping for breath the entire time. As soon as he finished, I stood up and was my normal self. It was pretty funny. I was like, "Who was that person in the chair?"

He seemed to understand what had happened with the novocaine before--something about the drug being different, maybe? That's how it felt. I'd never had any trouble getting numb before the whole mess began.

pberggren1
04-19-2011, 04:01 AM
Oh Sangye! I am so sorry to hear of your aweful experiences with dentists.

I think I have a good one here. He is born and raised here. And he goes to Africa every summer on his holidays to give free dental work to the poor over there on his own time and money. He is very good and compassionate and keeps you in stitches most of the time with all his jokes.

DEE
04-19-2011, 04:52 AM
It sounds as though Dee has been on bisphosphonate drugs to prevent osteoporosis (a frequent side effect of long term pred use,) which makes dental treatment a bit difficult....all the more reason to have regular cleanings and checkups.[/QUOTE]

I have been on high dose preds from jan 2008 with a very short break before my major flare plus not had a break from taking MXD, CXT, CELLCEPT,AND NOW IMURAN.To add to that nearly a year on warfarin 10mg ,and also taking Actonel too on a weekly basis.

What dentist would not be alittle weary sp I dont blame them.
I have been going to the dentist , but they have been hoping I would at least be coming of the chemo, and said there was nothing that needed doing immediately at last check up and clean six months ago. It was when I lost the first tooth they realised things were not right.
These problems have just appeared really suddenly.most of the remaing teeth have fractures in them and three have broken of at root when eating !!

So I have to make my decision by Thursday pm .:mellow:

ArlaMo
04-19-2011, 04:58 AM
What should we know about dental stuff and biophosphanates? I take fosomax once a week, but neither the dentist or perio said anything specific about it.

DEE
04-19-2011, 05:15 AM
Im no expert but my understanding it has something to do with the bone around the root will have to look at the report again in the morning

Sangye
04-19-2011, 07:38 AM
ArlaMo, why are you on fosamax? You haven't been on pred very long, have you?

ArlaMo
04-19-2011, 07:55 AM
ArlaMo, why are you on fosamax? You haven't been on pred very long, have you?

It's been just over a year now and at pretty high dosage. Started out at 60mg, was on that for about 4 months, tapered to 40, then 20 and ended up at urgent care not being able to breathe. Back up to 40 and I've been on that ever since.

The rheumy I saw initially put me on the foxamax right from the start. My mom has osteoporosis (she's 62) so I'm wondering if that is why. Should I be questioning that? All my docs, including the ones at CC, have a list of my meds and nobody has said anything. In fact, my internist had me go for a DEXA scan last month and made sure I was on something.

Sangye
04-19-2011, 08:04 AM
The practice of putting Weggies on bisphosphonates right from the start is controversial. Those drugs have some seriously high risks that don't disappear when the drug is stopped. Unless someone is older and/or already has osteopenia, it shouldn't be routinely prescribed. Doing a DEXA scan every year or two is a standard thing while on pred.

Dr Seo has never told me to take bisphosphonates. I was even on Lovenox for 2.5 years, which really affects bone density. Fortunately I came into all this with "supernormal" bone density-- 40% higher than most women my age. The product of good genes and good supplements.

Here are a couple of threads with info about it:
http://www.wegeners-granulomatosis.com/forum/medication/342-thoughts-bisphosphonates.html

http://www.wegeners-granulomatosis.com/forum/general-wg-chat/1314-new-thinking-bisphosphonates.html

ArlaMo
04-19-2011, 09:47 AM
thanks you, Sangye. Off to read your links!

Palmyra
04-20-2011, 12:42 AM
What should we know about dental stuff and biophosphanates? I take fosomax once a week, but neither the dentist or perio said anything specific about it.

AriaMo, the use of bisphosphonates is a pretty contentious topic regarding management in dental surgery these days. I have gone to several full day courses on the subject, and there is not wide spread agreement on how to manage the issue.

I can find several recent/good studies regarding effects on the oral cavity, specifically effects on bone density of the mandible and maxilla. Combined with a compromised immune system and all the drugs to treat this disease, (Pred!) it seems the bisphos can cause 'hyper' bone density, to the point that blood supply is limited...the bone is so dense it can become brittle and necrosed, resulting in poor healing.

So, if one develops a dental infection and requires a procedure that is likely to involve soft or hard tissue surgery, healing can be a real problem...there have been cases of osteonecrosis (bone death,) reported. It is not that uncommon considering the number of people on these drugs. It is more of a problem for those with 'more problems'....ie, diabetes, smoking, gum disease, impaired immune system, and what type of bisphosphonate therapy that is given (ie, oral vs IV) and duration of drug use.

The conundrum is, the morbidity of fractures (hip, spine) is/can be life threatening. We are learning how to manage dental treatment for many of these folks, but the rule is, get your teeth cleaned often to avoid gum disease. Arrest decay before it affects the nerve. Some practitioners are suggesting a 'drug holiday' from the bisphosphonates after use for some years. It would be appropriate to question your rheumy about this topic.

Too long of a post here...I think the subject of bisphosphonates are worthy of a new thread on its own merit.:glare:

JanW
04-20-2011, 07:35 AM
I came to my rheumy in osteoperosis (due to long standing steroid treatment for the asthma I didn't have -- it was WG all along), and immediately went on fosamax. My situation is pretty serious because I am African-American and premenopausal, so my bones should be pretty strong. However, even my doc has suggested a drug holiday after a few years if my condition is stable and the DEXAs remain so. He didn't start me on anything prior to having the DEXA done, but I am also not on prednisone.

pberggren1
04-20-2011, 11:15 AM
Thanks Jane and Jan for the good info. I think i will look into getting another bone scan done sometime this year is possible. I think we should all discuss biphosphonates again as well.

DEE
04-24-2011, 04:15 AM
Ok news on dental assessment,
I have made up my mind and we have decided to go for two extractions ,four root canals ,two fillings new dental plates and a patridge in a pear tree:flapper:
Do not have to alter any medication , can have it done with sedation the same as when I had cataract done . The work will be done slowly with the thought been given to watch for and treat any infection quickly.
WG consult wants to be informed of treatment dates and to be informed of any problems .
Hopefuly been done during May if not it will be june the specialist dental surgeron sp only have a day and a half alercated for surgery each month and they go on a priority basis and the NHS state cancer patients first .
At least they got me to sit in a dentist chair and I let them seal the worse tooth as it had fractured alittle more . believe me thats good for me !!
Thank you for your support . DEEx :thumbup:
ps down to 9mg /8mg alternate preds next week :thumbsup::thumbsup:

pberggren1
04-24-2011, 05:00 AM
I hope everything goes well.

DEE
04-24-2011, 05:18 AM
Thanks Phil .

Sangye
04-24-2011, 06:58 AM
Gosh Dee, that's a lot of work. :sad: I hope it goes well and you have relief quickly. Hugs to you :hug2:

Hammy8241
04-24-2011, 07:02 AM
When I first started going to the Dentist they still used the foot pedal to make the drill spin. I remember that as he talked to my parents he would lose concentration and slow down which did not help the pain!

Took many years before i could face returning, toothaches managed it, but it was still not enjoyable. I eventually did, as a few years ago when a fellow runner stared up a practice locally and I was impressed with how advanced it was. Now go regularly with no fear no matter what the procedure. Well that's a lie - I'm still scared what the final bill will be!!


All the best Dee and remember that the dentist wants you to have ALL the treatments as it means they can have a better holiday - Nothing to do with all those jelly Babies then?:wink1:
Fingers crossed on the pred reduction.

DEE
04-24-2011, 05:08 PM
Thanks Sangye and Hammy
Have not had any jelly babies for awhile , I have had this problem before hence the reason I have to wear the plates . but dont think nearly four years of preds plus three of chemo has done me any favours.
Fingers crossed next preds drop starts today:smile1:

Sangye
04-24-2011, 11:44 PM
Four years of pred and three of chemo? Bah. It was the jelly babies and everyone knows it. :laugh:

DEE
04-25-2011, 03:48 AM
No, Im trying to be good have not had muffins or jellybabies for awhile and even down to one cup of coffee a day :flapper: hubby keeps passing me fruit !!!

Sangye
04-25-2011, 08:20 AM
LOL I believe you, Dee. Just couldn't resist the joke.:tongue1:

DEE
04-25-2011, 07:59 PM
LOL I believe you, Dee. Just couldn't resist the joke.:tongue1:
:smile1:
I know that Sangye I have to keep reminding myself now and then :wink1:

pberggren1
07-20-2013, 04:21 AM
Had a couple fillings today and my dentist talked about biphosphonates. He is actually not in favor of them....WOW. He said if he has to pull a tooth and someone has been on them long term then dental necrosis usually sets in and the tooth area and bone never heal properly.

drz
07-20-2013, 05:38 AM
Had a couple fillings today and my dentist talked about biphosphonates. He is actually not in favor of them....WOW. He said if he has to pull a tooth and someone has been on them long term then dental necrosis usually sets in and the tooth area and bone never heal properly.

I had a tooth pulled recently and I think or hope the area is healing OK. Dentist said it was loose from my bone loss and that it would just get infected again if I didn't pull it. It is first tooth I have lost since wisdom teeth were removed decades ago. I have been on Fosomax since diagnosis.

pberggren1
07-20-2013, 02:03 PM
That's why you are not so wise drz......lol....jk

mishb
07-20-2013, 02:17 PM
That's why you are not so wise drz......lol....jk


Aww, not nice Phil :thumbdn:

I went to the dentist a couple of weeks ago to enquire about some teeth that have broken and also one that the enamel seems to be peeling off from.
He told me that he couldn't/wouldn't even look at my teeth unless I had a letter from my specialist telling him that it was okay to do so.
He even said because I can't breathe through my nose, that the only way they will even be able to look is if I make a two hour appointment, so that they could keep stopping and starting, allowing my to take breaths in between - or I would have to be anesthetized and then have whatever needs to be done, done.

I haven't been back yet :sad: but I do find it amazing that dentists seem to know a bit more about these types of things/conditions, than our doctors do.

Alysia
07-20-2013, 05:09 PM
if I have to do some dental treatment Im taking antibiotic for one week to avoid infections

pberggren1
07-20-2013, 06:15 PM
I hope you don't have a major infection and it clears up soon.

drz
07-20-2013, 11:49 PM
if I have to do some dental treatment I'm taking antibiotic for one week to avoid infections

The doctors and dentist have also recommended I stop for a day before and day after the azathioprine or what ever immuno-suppressant i was taking before such things as routine cleanings or other dental work or surgery with risk of infection.

pberggren1
07-21-2013, 09:10 AM
My dentist also said that even after being off them for 2 or more years can still be of concern.

Joyce3692
07-22-2013, 09:26 AM
I am having issues with my teeth as well. I can assume then that this is a side effect of WG and/or meds that I am on? I was kinda kidding when I told my now ex boyfriend that I will be a fat/bald/toothless, old lady soon. (fat from prednison, bald from cytoxin(chemo med) and now really toothless. Kind of a scary thought, not so funny afterall.

drz
07-22-2013, 10:23 AM
I am having issues with my teeth as well. I can assume then that this is a side effect of WG and/or meds that I am on? I was kinda kidding when I told my now ex boyfriend that I will be a fat/bald/toothless, old lady soon. (fat from prednison, bald from cytoxin(chemo med) and now really toothless. Kind of a scary thought, not so funny afterall.

A good dentist is also one of the doctors we need. I have had frequent dental contact for years because of diabetes which is also bad for teeth but Wegs kicked all my dental problems up a couple notches.

Palmyra
08-02-2013, 12:57 AM
I am a US trained dental professional. It is difficult to translate standards from one country to the next. To be honest, most adults world-wide have chronic dental (periodontal) issues they are not aware of until they are advanced, and finding good treatment is difficult. Weg, meds like bisphosphonates and complications such as smoking or diabetes complicates the problem.

Simple advice: If you don't floss daily, under the gum line, start now. Brush well at least twice daily. Healthy gums do not bleed. If they do, you have gingivitis or more advanced gum disease. Blood thinners do not make gums bleed unless they are already infected.
Get your teeth cleaned well and often (every 6 months is a minimum. More often if you have gum problems). It is usually NOT necessary to premedicate with antibiotics. Repeat..it is NOT necessary to premed w/ antibiotics unless you are severely immunosuppressed (as in nadir for cancer treatment--in which event you should not be going to the dentist or shopping mall for that matter) or have an actual artificial heart valve or a new prosthetic joint).

Osteonecrosis of the jaw is a rare complication of long term bisphosphonate (usually IV for cancer treatment) use. It is more frequent in those that have additional risk factors such as uncontrolled diabetes, history of smoking or severe long term immunosuppression. Most on this site are not severely immunosuppressed, but may be actually dealing with underdiagnosed existing or long standing periodontal disease. Periodontal disease is still not diagnosed or addressed well internationally. It can cause problems if one is ill, but as mentioned previously...actual osteonecrosis is rare. An existing dental infection left untreated is NOT a good option out of fear of possible necrosis. Seek a specialist if available.

Good luck to those with dental ailments!! I wish I could wave my dental fairy wand over anyone with fear, pain or problems.

On a separate, but very good note, my daughter Alison (Crohn's '99, Weg '06..treated primarily with Rituximab) is still in what appears to be a sustained remission. White cells are a bit off, but her last infusion was ~1.5years ago, and no flares as of yet. Infections are at a minimum. We pray for continued good health!!

My best to all!!
Jane, mom of Alison (aka, Palmyra...my favorite mountain peak in Colorado)

DEE
08-02-2013, 04:30 AM
I agree with what you say above.I've had several surgeries over the last couple of years. As you say none of the treatment was done without WG consultants permission. By choose I have sedation because of breathing through my nose to. Before surgery I have a weeks anti b and then iv anti b during with preds. All my treatment has been done by a special dentist surgeon and a registrar has been reporting my case as part of her specialist training. My next surgery is 14th August !!!. I also do not have to change my medication to be able to do this, They are very supportive ,always ring the next day to check things are ok. Hopefully this will be my last major surgery. :) x x

Palmyra
08-02-2013, 09:21 AM
I certainly hope it is your last surgery for a VERY long time Dee!! It sounds as if you have quite the great team established for your care. Best wishes to you, and as your avatar states, "Never give up!" :thumbsup:

~JT

DEE
08-02-2013, 05:47 PM
Hopefully I will only have to go to have my roots refilled every six to nine months after this surgery :thumbsup: x x

pberggren1
08-03-2013, 12:20 AM
Thank you very much Jane.

Pete
02-09-2014, 06:55 PM
I have had some sensitivity to pressure in one of my molars over the past couple of days. I went to see my dentist on Friday, and he could see nothing wrong with the tooth via x-ray, so he referred me to an endodontist who saw what he thought might be some sort of trauma to the tooth. He thought it might have been caused by biting down on something hard (like an olive pit -which I did a few weeks ago). The current plan is to monitor the sensitivity over the next week. If it stays the same or gets worse, the endodontist will do the root canal. If it gets better, no treatment necessary.

Also, the x-ray showed that one of my wisdom teeth has a cavity forming. It's in a very difficult spot to reach with floss and toothbrush (I use an electric toothbrush) as well as a dental drill, so the dentist is thinking that this wisdom tooth should come out. He said it would not be difficult to extract as the roots are all clustered together. I'm OK with this, as this particular tooth has come in crooked and has been irritating the inside of my cheek for many years. Getting rid of this irritant would probably be a good thing for me.

Other than our dumb disease, I'm pretty healthy. Any thoughts or recommendations about these plans?

pberggren1
02-09-2014, 07:31 PM
I think I would have it taken out. And if he thinks you need a root canal then I would do that as well.

mishb
02-09-2014, 08:22 PM
I still haven't been to obtain the letters required from my dentist, before they will look at my teeth.

I have a rheumy appointment in the morning so I guess I better speak to him about the letter.

Do you need to take antibiotics for a week prior to having any major dental work done?

windchime
02-10-2014, 12:15 AM
Pete I would do the root canal if it's necessary and have the wisdom tooth removed since it irritates the inside of your mouth anyway. You can check with your medical docs on whether they feel you should premedicate. I've had hip replacements and have to premedicate prior to any dental work. The premedication I do is 2000 mg of Ampicillin 2 hours prior to the start of the treatment and 1000 mg 2hrs after.

My own dental plan, starting soon, consists of a redo of a prior root canal that has a nice crown on it already; a crown over a chipped tooth that has already had a root canal; a crown over a tooth that has a huge filling that is chipped; and last but not least replacing a crown that has been on since I was 19 as there is now decay under it. This one may require a root canal as the same tooth on the other side did and it also had the old crown. I so don't look forward to this, but at least I have decent dental insurance.

Alysia
02-10-2014, 12:43 AM
I took out all my 4 wisdom theeths years ago. they were all half in half out and it was a kind of surgery. not very nice with pains after. antibiotics is a must. and I would ask your wg doc about doing any procedure. we weggies are delicate.
* I posted something for you on fb.

Pete
02-10-2014, 01:53 AM
Thanks for the advice, everyone. As for premedication, my dentist said that my current dosage of bactrim DS is adequate. He installed a crown in my mouth last fall, and it was no problem. I don't have dental insurance. Before I got sick, I had had no issues for at least 15 years. So when dental insurance was offered, I decided to assume the risk and pay for routine exams and cleanings out of my own pocket. These two procedures will be expensive. I'll take a look at dental insurance at next year's open enrollment.

windchime
02-10-2014, 02:52 AM
Yes unfortunately root canals and crowns are very expensive. Even with insurance I have to pay 50% of the crown and get lucky with the RC and only have to pay 20%. This is still better than cash for all of it.

Debbie C
02-10-2014, 04:51 AM
I have an appt. with the dentist this week also. (Are all of our teeth going to start going now too:w00t: )I had my wisdom teeth taken out last year,not all at once though and I never took any antibiotics. But it would not stop bleeding,I had to keep changing that guaze every 10 min. and was getting sick from the blood.I had to return the following day for him to put more stitches in.( on 2 different teeth ) This week I am supposed to see about getting a crown put on one of my side teeth. It will be around $700.00:crying:
I don't have dental insurance either but I signed up and got this thing called Care Credit,it's like a health credit card where you can make payments on it. Did I mention I HATE DENTISTS ALMOST AS MUCH AS WINTER !!!

rebekah
02-10-2014, 05:22 AM
So glad I saw this post... I have an appointment on the 18th to see a dentist, and it's a nice reminder to ask my doctor if I need to be pre-medicated beforehand. I'm on Bactrim, too, but I'll be sure to ask. I really, really don't like going to the dentist either. I dislike dentists more than winter. I cry every time I go, like a little 5 year old kid (maybe I can get some anesthesia to knock me out?). I don't have insurance either - thanks for sharing the tidbit of info about that card, Debra. I'll look into to it.

Dirty Don
02-10-2014, 05:26 AM
I'm not sure which kind of premedication you need Rebekah...LOL, sorry, couldn't resist that! Anyway, I just had some major work done a few weeks ago. Doc gave me a strong dose of amoxycillin for a week afterwards, no premedication at all, and I've done OK other than the body reacting to the work done, and I was fine.

Debbie C
02-10-2014, 05:36 AM
Yea Rebekah most dentists offices usually have those Care Credit forms on the counter and they can get you approved right there the same day.

windchime
02-10-2014, 07:15 AM
There is also a lot of different dental insurances out there. Just Google dental insurance and compare the plans. They don't cover certain things for a year but some of the basics are covered immediately. Low monthly rates around $30 depending on what you get.

drz
02-14-2014, 05:36 AM
For root canal or extraction work they also had me stop my azathioprine for two days before the work. No extra antibiotic was prescribed for me. I have lot of dental issues from dry mouth, diabetes, and meds for Wegs and no dental insurance. I get a small discount for paying cash for my work. I had a dental plan two years ago that cost $600 a year but my total dental bills that year were a little less than the insurance cost plus the insurance only paid about 50% so there was little chance it would ever pay to have it given the max it would pay for each procedure and each year.

Jaypfei
03-16-2014, 03:01 AM
My dentist would only do check up and cleaning if I wasn't on steriod and was taking antibiotic. Thankfully I was at an in between stage in treatment.....not taking prednisone but still taking the Bactrim three times a week.
Wishing you much luck and prayers with the procedures .

Pete
03-20-2014, 04:02 AM
I had one wisdom tooth pulled yesterday, so I guess I'm 25% less wise today :wink1:. Anyway, I learned a few things that might be worth sharing...

My problem started when I noticed that tooth #14 (third from last tooth on upper left jaw) was sensitive to pressure. It was a little painful, but on a scale of 1 -10, it was probably a 3 at worst. I visited my dentist. He verified the location of the problem and took an x-ray that showed a large cavity in the wisdom tooth (#16) two teeth farther back. He was befuddled about the pain in #14, so he referred me to an endodontist, who after another x-ray, was just as befuddled. He sent me home and told me to monitory symptoms for the next couple of weeks. They never got worse, and gradually got better, but didn't disappear entirely. My dentist also recommended that the wisdom tooth should come out as the cavity was located between teeth, and it would be very difficult to treat.

The extraction was done under local anesthetic. I felt nothing. I heard the crunching and grinding as he worked the tooth out. Took about a minute. No pain whatsoever since. Just doing saline rinses to keep it clean.

I asked the oral surgeon a couple of questions. One concerned why I was having issues with #14 when #16 had the cavity. He said that it was most likely referred pain. There is no evidence that #14 had any issues at all.

I also asked a question regarding the location of the maxillary sinuses as I do daily sinus rinses with a neti-pot. Those sinuses are above the roots of the upper jaw's teeth, and sometimes the bone gets perforated when a tooth is extracted. He said that if that happens, it generally resolves itself within a few weeks. Just wonder what would happen to a weggie who is on high dose pred and leach more calcium than the body is absorbing.

So, here I am, fortunately feeling normal. I'll continue to follow the post-op instructions and take appropriate measures if something seems to be wrong.

annekat
03-20-2014, 05:42 AM
I had two wisdom teeth removed along with the neighboring molars, because the rot in the wisdoms had spread to the molars and one day one of the molars just broke off. I have a high pain threshold and didn't feel much. Anyway, this was after my Wegs dx, and my "WG doc", in quotes for a reason, had told me not to have any tooth extractions at that point in my treatment, which was fairly early on. I only knew about one wisdom tooth being bad and kept putting it off. Eventually, the molar broke, I had the money, and I had to to what I had to do. It was not a problem at all. I don't remember being asked to stop any of my WG meds. I think they gave me an additional antibiotic and think I probably still took the Bactrim. It all went very smoothly and quickly, under local anesthetic, and I only had to use one painkiller pill. The recovery was quick. I may complain about my docs here a lot, but I have no complaint about my dentist and the oral surgeon he recommended. They both have knowledge of WG. They both teach at the University of Washington but practice in Olympia, so I don't have to go out of town to see them.

mishb
03-20-2014, 07:59 AM
I have two teeth that have broken off since WG diagnosis.

My dentist will not touch them until I receive a letter from both my GP and my Rheumy, stating that it is okay to proceed with any treatment.

:sad: It's now been 2 years and I still haven't got the letters :sad::crying:

annekat
03-20-2014, 08:39 AM
That's awful, Michelle. I wonder if another dentist would have a different point of view. Either that, or keep bugging your docs for those letters.

windchime
03-20-2014, 10:24 AM
I'm in the process of getting 3 crowns. 2 have already been prepped with the new crowns being put on next week and the other will have prep done next week also. My dentist seemed unconcerned regarding the wegs and/or the meds. I also went to the endodontist for eval on a redo of a previous root canal and he seemed unconcerned. So I guess I just have a couple of unconcerned dentists. Luckily no problems either.

drz
03-20-2014, 02:54 PM
I recently developed a pain in front tooth number 10. X-RAY didn't show any big abscess but dentist thought it was just starting to die and decay and needed a root canal treatment. Since it was only one tooth he didn't think pain was related to any sinus infection in sinus above the tooth root which sounded reasonable to me. I took antibiotics for several days before the root canal along with PerPro mouthwash rinse twice daily. That seemed to heal up my sore gums and small sore on tongue that I had for a long time.

The tooth hurt worse about 30 hours after the canal but the dentist said it might be sore for a day or two. Now on day three the pain is about the same as day of the root canal which is some what less than day I went in for diagnosis. I hope it settles down soon but know some times they don't when the root canal fails to relieve the pain. I skipped the azathioprine on day of root canal and finished the antibiotic two days after the treatment.

I read about where vasculitis can cause dental pain but that it is rare. Pain can also be referred which seems strange but know that can also happen with dental pain.

My teeth started falling apart from dry mouth and diabetes before the Wegs but the Wegs probably made it worse due to meds we take for Wegs and troubles absorbing calcium.

Alysia
03-20-2014, 06:01 PM
Dear drz.
it takes time to heal from root cananl, prob more then your doc said. mine took a week even before I had WG.
for us especiialy, healing is more slowly.
don't worry. but if you do, call your dentist and ask him.
try to make the area cold. rest. dont eat "hard" foods.
lots of hugs and prayer heading to you:hug1::hug1::hug1:
please update us.

mishb
03-20-2014, 09:08 PM
That's awful, Michelle. I wonder if another dentist would have a different point of view. Either that, or keep bugging your docs for those letters.


It's not my doctor's fault Anne........I keep forgetting to ask.
Not sure if it's bad memory or bad memory of dentists that doesn't allow my mouth to ask for the letters.

I will do it - one day

renidrag
03-21-2014, 04:21 AM
Last century I had major abscesses behind all my upper teeth. Doc wanted to crown all of them but I could not afford it at the time. Eighteen Thou for crowns or Fourteen hundred for upper plate. I got the plate and I really believe that was the beginning of my WG. Any way, been almost fifteen years now and I am wondering if a weggie would be a candidate for dental implants. I have no idea how much they cost or if I could afford it, but just thinking out loud I guess.
Dale

annekat
03-21-2014, 04:37 AM
It's not my doctor's fault Anne........I keep forgetting to ask.
Not sure if it's bad memory or bad memory of dentists that doesn't allow my mouth to ask for the letters.

I will do it - one day Well, if you are not suffering pain in your mouth, I guess you are OK for now.... if and when it gets painful, then I reckon you'll remember to ask for the letters! I had to go against my doc's advice because I couldn't walk around with infected, broken teeth in my mouth, and the dentists felt they knew enough about WG that they should and could go ahead. Your docs are probably more savvy than mine and will approve whatever you need for your mouth. As it turned out, when I reported to my doc that I'd had FOUR extractions, not just one, he didn't seem to mind me having made the decision myself. He's full of a lot of big talk about what not to do, but I end up doing what I want, pretty much. He sees me a few minutes every two months and I'm with this 24/7.

I realize, though, that it's your dentist that wants the approval from your docs, and I'm sure it will be able to happen when you feel it's time.

annekat
03-21-2014, 04:40 AM
Last century I had major abscesses behind all my upper teeth. Doc wanted to crown all of them but I could not afford it at the time. Eighteen Thou for crowns or Fourteen hundred for upper plate. I got the plate and I really believe that was the beginning of my WG. Any way, been almost fifteen years now and I am wondering if a weggie would be a candidate for dental implants. I have no idea how much they cost or if I could afford it, but just thinking out loud I guess.
Dale I imagine since you are pretty much in remission, right?, that it might be OK to go ahead with this. Maybe not all at once. And I'm sure it's expensive..... I have no idea.

windchime
03-21-2014, 07:44 AM
Last century I had major abscesses behind all my upper teeth. Doc wanted to crown all of them but I could not afford it at the time. Eighteen Thou for crowns or Fourteen hundred for upper plate. I got the plate and I really believe that was the beginning of my WG. Any way, been almost fifteen years now and I am wondering if a weggie would be a candidate for dental implants. I have no idea how much they cost or if I could afford it, but just thinking out loud I guess.
Dale

Last I heard it was about $1K per tooth. Don't know if dentists give out multi tooth discounts. Like the century statement. :wink1:

Dirty Don
03-21-2014, 10:44 AM
Dale, am going thru all that right now. I opted for full upper plate and partials below...woulda had them all pulled but dentist talked me into lower partials. No issues with drugs or infections...I'm in medical/chemical remission as of late. Had the choice of implants, but was freaked out by the idea of possible sinus infection from upper implants. The prices range on implants range depending on which dentist and what they can talk you into...noooo, I'm not scared of dentists, just hate their billing practices...but oh well.......

renidrag
03-21-2014, 10:56 AM
Hey DD the right call for the lowers. So glad I still have (some) of mine. I sure could not afford a "full set" of implants, maybe like a Jack o lantern? By the way DD I can still eat corn on the cob, just a little differently. Oh, are you used to change?
Dale

DJS
03-21-2014, 11:51 AM
I was thinking that there is not enough discussion about the effects of Wegs on the mouth and teeth. Early on after diagnosis my wife complained of dry mouth, cankor sores, no taste, etc. so she went to see her dentist and e actually prescribed a oral mouth wash to help control her mouth. Now her teeth are going bad, and she needs a root canel, and at least 4 crowns. She is totally off all drugs since August 2012 so he just gave her an antibiotic for the root canel next week. Now she uses a mouth wash and a tooth paste called "Bioteen" and last week she bought a water pic as a power floss tool. I don't know if more attention up front or regular use of the tools and products would have prevented any of this, but I'd like to think so. Just a few comments from an interested bystander. It is her mouth! Dennis

Dirty Don
03-21-2014, 02:13 PM
Hey DD the right call for the lowers. So glad I still have (some) of mine. I sure could not afford a "full set" of implants, maybe like a Jack o lantern? By the way DD I can still eat corn on the cob, just a little differently. Oh, are you used to change?
Dale

I just told the dentist that I didn't want to look like George Washington! Change is not an issue usually for me...well, unless my feet aren't on the ground...

drz
03-25-2014, 05:32 AM
Dear drz.
it takes time to heal from root cananl, prob more then your doc said. mine took a week even before I had WG.
for us especiialy, healing is more slowly.
don't worry. but if you do, call your dentist and ask him.
try to make the area cold. rest. dont eat "hard" foods.
lots of hugs and prayer heading to you:hug1::hug1::hug1:
please update us.

A week later the tooth area seems to feel better, just a bit more numb on the adjoining tooth but no pain from eating so I guess it worked out OK. The tooth next to it might die now and need work. A friend had an implant for a front tooth and it cost him over $3000 so maybe partial bridge is way to go if one needs several teeth replaced. I never used to need any dental work beside a cleaning or check up once a year so it is frustrating to now need 10 visits a year or so depending upon what happens with my teeth.

ingemlb
03-27-2014, 10:41 AM
Last century I had major abscesses behind all my upper teeth. Doc wanted to crown all of them but I could not afford it at the time. Eighteen Thou for crowns or Fourteen hundred for upper plate. I got the plate and I really believe that was the beginning of my WG. Any way, been almost fifteen years now and I am wondering if a weggie would be a candidate for dental implants. I have no idea how much they cost or if I could afford it, but just thinking out loud I guess.
Dale
Hi Renidrag. I thought I would add my experience. Has been very informative reading this entire thread :).

Several years ago I decided to see an Orthodontist to ask if my partial upper plate could be replaced with implants. My doctor did a medical health care plan ( in those days our government allowed people with illness to get a substantial amount of dental work paid for by medicare) and this medical health care plan spelled out years of autoimmune disease. The Orthodontist took one look at my report and said even though he makes his money from doing implants given my immune system he wouldn't touch me with a barge pole :( And in those days I was not on immunosuppressive drugs or steroids.

So he simply built me a new upper plate which I hate and would much rather have the implants but they cost a fortune. The issue he said was they would likely not take or heal and I end up in a mess. I never had a 2nd opinion.

I need to see a dentist soon but think now I will wait to see if I can get at least off the Pred before I start any dental treatment. Am thinking of investing in one of those waterpik machines for the teeth as my gums are retreating exposing top of roots in some cases. Also have a gap between 2 back teeth where food for ever gets stuck and it's hard to get out even with flossing. I asked the Orthodontist at the time if anything could be done to fix this but he claimed no and that he had the same problem himself !!

What I am not clear about after reading all these posts is a) is it the Wegener's that is making our teeth worse ? or b) is the the drugs we are on? c) Is Prednisolone particularly bad for teeth?

Michelle I am a huge chicken when it comes to dentists. I had one stretch of 25 years where I never went. After having a tooth knocked out where the root had grown sideways under my other teeth and the tooth (wisdom) came out in bits and pieces I was totally put off. One day I read an advert in the paper from a dental clinic "We specialise in cowards". By that stage after 25 years of avoidance I figured my mouth must look like a sewer and the longer I waited the harder it got but I picked up the phone and rang this clinic. Said "I am a major coward and need an appointment".

The joke was after 25 years of agonising around about the state of my shockingly decaying teeth I ended up needing 3 fillings and my husband who had been going regularly needed half a dozen at least LOL.

So all that agony and stress I could have avoided by regular attendance.

Anyway I guess if I were to return to this Orthodontist now he would freak out even more when I have to mention the Wegener's diagnosis :( But I best get them checked. I will wait a couple of months and see how much Pred I am on then. Wonder what the MTX does or the Bactrim. Will do some research :)

MikeG-2012
03-27-2014, 12:16 PM
... Am thinking of investing in one of those waterpik machines for the teeth as my gums are retreating exposing top of roots in some cases. Also have a gap between 2 back teeth where food for ever gets stuck and it's hard to get out even with flossing. ...

You just bought one off of the internet Inge--your sinus rinse machine! It's basically a water pulsing device. Just find an appropriate tip from the Waterpik brand of flossers and you should be all set.

ingemlb
03-27-2014, 12:59 PM
Thanks Mike lol never occurred to me to use the same machine :) I still need to sterilise mine so the pleasure of using it is all ahead of me :) Buying some bleach today.

debhaz22
03-28-2014, 02:31 AM
Never:ohmy: thought of the Dentist and WG. Do you need to see a special dentist? Or just hope your excisting one is familiar with WG??
Thanks
Deb H

annekat
03-28-2014, 02:54 AM
Never:ohmy: thought of the Dentist and WG. Do you need to see a special dentist? Or just hope your excisting one is familiar with WG??
Thanks
Deb H There seem to be different viewpoints about how much dental work should be done while having WG. I shouldn't think xrays and cleaning would be a problem with whatever dentist you are already comfortable with. Then I would mention the WG and see how comfortable he is with it, whether he's ever even heard of it, or whether he just blows it off as nothing significant (which wouldn't be good). In my case, I'm lucky enough to have already had a dentist, recommended by a friend, who teaches at the University of Washington Dental School, and is fully aware of what WG is. I was able to have all needed procedures done as usual, but my WG was fairly well stabilized at the time. That's just my experience, others may have very different ones. Some Weggies have more trouble with their teeth than others. You might ask your WG doc, next time you see him, what his opinion is on this and if he knows of any dentists who are especially suitable for treating WG patients.

renidrag
03-28-2014, 02:57 AM
I saw a Dentist that had no idea what WG was and had no problem. He knew I could not fight infection, and on top of that he had to work around Warfarin. It all worked out OK. New uppers and fillings in the lowers, and one pulled. PCP did put me on antibiotics for a few days before work was done. Wanted INR at 2.2 told him it was. Actually 2.6 but what is a couple of tenths between friends. You should clear your dental appt's with PCP or Rheumy.
Dale

Alysia
03-30-2014, 12:55 AM
Elsevier (http://www.ejinme.com/article/S0953-6205(09)00071-5/abstract)
“Strawberry like” gingivitis being the first sign of Wegener's granulomatosis

Rose
03-30-2014, 04:37 AM
Probably few dentist have ever heard of WG (many doctors have not) but they have heard of prednisone and immune suppressants and the problems they pose for the dentist. I had to have a tooth removed a few years ago and the dentist referred me to a Maxillofacial Surgeon as not only was he concerned about infection, he was also worried about the tooth disintegrating in the socket whilst in the process of being removed because of long term pred use. They may not know the signs and symptoms that WG may present in the oral cavity but they do know what is normal and what is not.

Always inform them of your condition and the drugs you are on and you shouldn't run into problems with any dentist for routine work.

Oh...and I also asked about an implant when I had that tooth removed and was told that it was not advised whilst on prednisone as could run into trouble with the implant not remaining firm in the bone. Ended up having a plate and I am happy with that. Glad now that I never had it done...it would have been just another thing that could give me problems down the line.

Rose

Michael Bell
04-05-2014, 12:40 AM
I solved all my dental problems twenty years ago while having a dispute with the laws of gravity (they won). My dentures sometimes cause me trouble if the Wegs is affecting my gums but otherwise i am ok with them.
Mike.

BookNut
04-05-2014, 04:20 AM
How do you feel about your dentist? I had MAJOR dental phobia until i found my dentist. He is wonderful and puts me at ease completely. thinking back on other dentists that i feared, I realize why this one is different. It is absolutely as important to him that he not inflict pain as it is to me to not feel any. If i so much as wrinkle an eyebrow he stops to make sure i am ok. the other thing is that he is crazy funny, and crazy talented at getting the novacaine in the right spot. I have at least one root canal done every year, and i can truly say I actually look forward to seeing my dentist. A visit is like going to a comedy club. so, if you can find a dentist who is REALLY good with novacaine, and really has a lot of compassion, I would go with the least invasive treatment possible. That said, I will not allow even my wonderful dentist to do an extraction. I want to be out cold for that. so, in those cases, I trust his referral. Good luck!! And if you find that you fear dental work, shop around. sometimes you can find reviews online.