Lost lots of teeth from prednisone

[Jax]

Quick history : diagnosed with GPA Jan 2014 with biopsies taken from both ears during mastoidectomies. Have been on so many of the pill therapies (cytoxin, methyl, imuran, prednisone 100+mg now down to 15mg daily since Dec 2015) and going to do my 5th Rituxan in May (been doing it every 4 months) and still have not been in remission once....and too much to explain that has happened in between to type out (smh)

Was told by my rheumatologist that steroids can cause gums to recede. Because of that, lots of my teeth broke off and fell out at the gum line. I can still see what's left of them in the gums. I didn't want to go to my dentist yet because they're still falling out, I'm not in remission yet. And I have to be honest, I'm so scared because I'm probably going to have to get dentures and do lots of work on my gums that I'm going to beg to be knocked out.

Has anyone else had /have this experience and know what kind of options I have? Thanks for taking the time to read this 👍😷 I'm so embarrassed...

[Arleta]

Sorry I can't help with experience in this issue of wegener's, but I want to assure you that you don't need to feel embarrassed. We have all been through a lot and understand how you feel.
Arleta

Sent from my SM-T800 using Tapatalk

[Jax]

thanks Arleta ��

[debra]

Yes, Had, I do! I must point out, wegeners itself can wreak havok on the teeth and gums, and bone... Its hard figuring out, what's what, but I can do this easy, because I'm not on pred! I am however on my own natural pred, due to a adrenal disease, so a little history... My destruction was purely wegs, and it took out my bottom teeth, with the gum and bone! I envy you, you still have bone and gum... I however could never do a denture, as there's nothing to adhere to... Thank God, my top are all there! For now... Also thankful for a small mouth, though that's up for debate! Jax, it could be a combo here, but in my opinion only, its more the way the disease is presenting itself... I feel for you, it really bites! Pretty soon, I may not be able to! Mine all happened in about eight months, so very rapid... Like to point out, I was ocd about my teeth, and had professional cleanings every six months, sometimes more! Thank God, I have my records to prove this all... Never had a tooth issue in my life... I predicted this to my doctors and dentist down to the detail... Good luck, I feel ya, here... Debra...

[Jax]

Thanks Debra! It helps knowing I'm not alone. I lost a dozen teeth and have 6 left in bad shape. It doesn't help at all that because of wegeners, when I catch an infection of some kind, nausea and vomiting are right around the corner. And I have a tracheostomy since Dec 2014 so acid reflux is an issue that doesn't help. When I got diagnosed I was in the middle of getting 2 implants in my upper right so I have 2 titanium screws in there waiting but I don't think they're any good because there's no tooth now to anchor it and make a bridge..... I rarely leave the house to avoid infections but when I need to see my doctors I do, and I cannot stand the way people stare at me. Sadly the adults are worse than the children! Oh yeah I have osteoporosis, aortitis, cataracts in both eyes, gained 100lbs but lost 75 all because of steroids too. Yet it's the only thing helping to keep my sanity while my wegeners is active because without it and my pain meds for my ears, my ear pain can get down right brutal when there's inflammation in there. But I'm very fortunate that I was diagnosed rather early and haven't had organ failure nor my nose collapse phew like I said, thank you for sharing your experience with me. I'm grateful. And I hope it turns out well for you ��

[debra]

Jax, youre very welcome... I thank God for leading me to this forum, back just about four years now, and when i read teeth problems i was connecting the dots, along with every weird symptom, finally being validated! Validation is huge! I felt nuts... Most here from what i read where associating any teeth problems with the meds, and all the while i was thinking its the disease. To be fair, its both... Seeing i was on no meds it was pretty easy to decifer... Jax, there are only a few with mouth involvement here, and just knowing youre not alone, helps alot... Congradulations on youre weight loss, thats awesome! Jax, you have vompany here and i feel ya, totally... Best to you... Debra...

[me2]

Many years ago when I first developed wg my teeth got very loose , gums inflamed and my tongue turned black. With treatment my mouth improved. I hope yours heals up soon with the treatment you are getting. When I was at my worst my doc sent to a dental school to get looked at and get worked on. My insurance does not cover dental and this was less expensive than other alternatives.
I know what it is like to be embarressed by what wg and the meds have done. Hopefully you have family and friends to spend time with. Of course , you have this forum too:hug2:

[Jax]

Sometimes validation is everything. Especially when we suffer on a daily basis and connecting the dots isn't as simple as we'd like. If I want good care, I need to travel to oahu, the main island. Because out on the big island care is so lacking and strip to the emergency room feels like I have to convince another group of people what I have is real and something is going on despite routine blood tests. If my husband isn't with me as an advocate I get treated badly and am forgotten.

So I too thank God for leading me to all of you and I pray all is well for you Debra and your loved ones. We'll keep encouraging one another. Alohas ��

[Jax]

THANKS ME2! I'M very fortunate for my family. Especially my husband. He hasn't run for the hills yet since I've been diagnosed. And that is a great option going to a dental college. Insurance doesn't pay for much either here. The ravages of wegeners is very depressing. There are days I don't want to look at myself in the mirror because I don't recognize myself anymore. The mastoiditis in my right ear ate most of the bone that protects the facial nerve and the nerve itself and that's why I'm holding up my face in my avatar pic. Luckily, most of the nerve grew back but it's still noticeable. But I'm so glad and thankful that my nose didn't collapse like many wegeners patients do.and right now in this very moment things are uneventful physically. And I know I gotta take advantage of that and keep riding the positive vibe I'm on. Thanks again ME2

[debra]

Jax, hi... I meant to ask, did you have any pain with youre mouth involvement? I ask because i had none, whatsoever, and this just seems odd... I guess when you think in terms of tissue death, not so odd afterall... Jax i totally get it, not liking mirrors ect, but beauty is within, and although it sounds corney most will come to realize its really true. So in that said, you have nothing to worry about! Support is so important, and God willing, i will be here for a bit... I will be watching this thread, and hope to see you posting through out... Best of luck, again... Me2, nice seeing you and i remember you having mouth involvement as well... Debra...

[me2]

Your husband sounds great. Looking at your avatar I assumed 'Jax' was HIM. It's a nice photo of both of you.
I think if you read here for a while and talk with people you will start to absorb what we call "the new normal". Many of us here have had to adapt to a changed life because of wegener's.
I myself have had the illness for about 37 years. I have written volumes here about my adventures so I won't take up your time with that. The good news is that life goes on.

The old saying "when one door is closed , another is opened" certainly applies. Some times it takes a while to find the other door. That is when it can be a bit depressing. But, having been through many , many things I can say with certainty something new is born from each thing that seems to pass away. Keep on doing whatever it is that is feeding your positive vibe.
Enjoy the fact that things are rather uneventful for you right now. I am doing something like that myself.

Just three days ago I was in the hospital getting trachael dilation for the third time (over several years) and today I did some gardening. Talked to my chickens. Talked to a neighbor.
I had a good day today in part because I have gotten better (not perfect) at taking a day at a time.

We had another beautiful soul in our group named Barbara. I remember that she too found that kids were easier to be around. So, lets hang around more kids.

Right now I am trying to loose prednisone weight too. You are an inspiration and I will think of you this week as I work my program. I love the line from an Anthony Hopkins movie
(make a gender adjustment ) "What one man can do - another man can do" We can do a LOT

[Fran]

Always inspired and impressed by your comments Me2.

Best wishes Fran.

[me2]

Thanks Fran.

[Dirty Don]

Jax, for better or worse, I now have false teeth cuz of the pred doses early on. Like you, I had large ones in the hospital, then backed off, then weaned off over a course of 3 years. In the duration, my teeth started going from just OK (years of soft water!) to breaking & falling out. I opted for false teeth cuz of the risk of infection installing separate teeth, especially the uppers as holes can be poked from the insertion of the new teeth into the jaw line and into the sinus area...NO infections. The false teeth are still a work in progress, but no more broken teeth or such. Best to you.

[Erin2014]

Hi Jax,
I feel for you too! Wegs has changed many people's appearances...
I was on pred (60mg) from Oct 2014 until I tapered off in May 2015. During this short time I noticed that my front lower teeth had changed shape. My first visit after my diagnosis confirmed my fears and in the fall of 2015 my dentist installed an appliance (almost like reverse braces) behind my lower front teeth and secured it to my bicuspids (eye teeth) in order to strenghten my front teeth. My dentist assured me that with today's technologies there are a lot of options when disease or meds affect teeth and gums (as long as you have the $$$!).
I understand your embarrasment! After my diag I gained a lot of weight with pred and when I glanced at a mirror I was shocked for quite a while because I looked so bloated!! I didn't recognize myself. When I went back to work I was really self-conscious, but the puffiness finally receded and the weight is slowly (and I mean painfully slowly!) coming off. I was very fit before being diagnosed so the new normal has been difficult to adjust to... I've now started to slowly work-out and still trying to lose more weight. My outlook on life has changed - I really enjoy the simple things and cherish the support I've received over the last year from my family and friends. The support here is great and people understand what you are going through. Stay strong! Erin

[drz]

Dental problems are common with Wegs. I have had many (most) teeth capped, lost one to infection, and am also getting cavities under the crowns as the gums recede. I also have diabetes which along which causes dry mouth which started wrecking havoc with my teeth even before Wegs and pred increased the damage. The problems with calcium absorption even with the Fosamax and extra calcium seem to make the teeth brittle and they often just disintegrate while eating something soft. I have been told by my dentist that implants are out because of the risk of infection and poor jaw bones now. Gum problems and sores in mouth are also very common with Wegs. I was told to find a good dentist and see them often so I average about six or seven visits a year for cleaning and repair work. Since good dental insurance is very rare, my dental costs are usually more than my umpteeen meds since they have some drug coverage to help.

[debra]

Disintergrate, is exactly what hapoened before the bottom fell out Drz! When mentioning this, the doctor and dentist thought I was nuts! I could see and feel it... Things i. Didnt think were scientifically possible, turns out they are... Wow, what a trip... Seriouse, nothing would surprise me anymore... Debra...

[PJ2010]

Hi Jax,
same here. Almost all of the fillings in my teeth fell out and I lost 3 major teeth through infection. I now can't chew anything on the right side and have only 1 tooth on left upper I can use.
It was the predisolone. Nasty, horrible drug. Gives me psychosis as well. That's fun. Walking, talking but not there!!
i have never bothered fixing my teeth. Firstly I hate dentist and second, it will likely happen again.

[debra]

Pj, hi. I was curious how you know its from the pred? I ask, because I'm not on pred, just my natural supply in excess due to adrenal disease. Nevertheless, never been on pred, and all my mouth involvement happened very very rapidly, during a flare... It's easy for me to know what's what, because I'm one of the few here, not treated... Also, although slightly off topic, I remember hair topics, how people thought it was the meds, causing hair loss and texture changes, in my opinion its both, because this happened to me, again very rapidly during this flare... Interesting stuff, and very horrifying... Debra...

[drz]

Wegs can also cause mouth and gum problems that wreck your teeth like infections, dry mouth, and fragile teeth from lack of calcium absorption. It takes frequent good dental care to try help keep these under control and minimize dental problems.

[vdub]

This is interesting. I hadn't heard of tooth loss as a pred side effect before, but thinking back over the last 6 years, I've had 3 teeth simply split in half and need the $1,000 caps (aaaargggh). I thought it was just old age and I think my dentist believes that, too. When the tooth split there was still enough of it remaining to act as an anchor for the cap, so that makes me think it was an old age issue for me.

I tried to find some research on the subject, but came up empty. However, I did see a lot of notional info concerning pred and tooth loss. I guess the jury is still out on whether it is considered an official side-effect. Maybe it is actually an erosion of the bone around the tooth like Jax has rather than erosion of the tooth itself. I will have to ask my dentist the next time I have an apt.

[debra]

Vdub, I have an article that explains how and why wegeners effects the teeth, but unfotunately, I can't upload here. If you want to contact me off list, I can send it and you can post it. It warns that the dentist may be the first to recognize wegeners. Sudden, unexplained dramatic changes in gum and tooth health, according to the article should be suspect in wegeners. Gum disease not due to vasculitis will show years in advance... Makes sense. Pred weakens the bone, as you know, so in turn can effect the teeth, I'm pretty sure it must say this on it. Interestingly the tooth itself, is made up of three materials, one being pulp, the other being blood vessels, so it makes perfect sense since wegeners is a disease of the small and medium blood vessels, that teeth would be a target... I was ocd about my teeth, cleaning every six months, sometimes more and no issues whatsoever. Two months after my cleaning, when, hell broke lose, my gums were suddenly strawberry gingivitis. The change in my teeth and gum, was so dramatic that my dentist was completely horrified! Within eight months, it took all the bottom, with the gum with a lot of bone. No pred... The article is in mysaved folder... Like Drz said, and I agree, mine seemed to disintegrate! Simply horrifying... Debra...

[vdub]

why wegeners effects the teeth
I was searching for preds effect on teeth and didn't see anything, but it does effect the bone. Searching on "wegeners tooth loss", I find some articles. It does make sense that wegs would effect tooth loss. I hadn't really considered it before. Not a good disease to have.
Oral features of Wegener's granulomatosis. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/3977759)

[PJ2010]

Hi Deb. The psychosis was proven without doubt. Long story and was very traumatic for me.
I don't know about the teeth really. I can't remember as it was 4 years ago and so much has happened since.
I know one of the more serious side effects is psychiatric disturbances they call it.
All the drugs seem to have some horrible effect on me. Must be a bit weak inside or something. Lol

[debra]

Pj, my friend, I know! This horrifys me, cause I'm crazy enough naturally! Ya, the mental effects scare me. I totally agree and its a proven side effect of pred. I wish you all the best, this disease trully sucks! Debra...

[drz]

I was searching for preds effect on teeth and didn't see anything, but it does effect the bone. Searching on "wegeners tooth loss", I find some articles. It does make sense that wegs would effect tooth loss. I hadn't really considered it before. Not a good disease to have.
Oral features of Wegener's granulomatosis. - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/3977759)

Scarey but logical that Wegs could also start in one's mouth and stay there for awhile just like it can start and remain in the sinuses.

[PANDASmomx2]

The sinuses affect the teeth and the teeth affect the sinuses. My experience has been if a tooth needs a root canal, get it pulled and have an implant placed. I've been through too many failed root canals and failed endodontics trying to fix the failed root canals that just led me to getting the teeth pulled anyway. I love my tooth implants!! I can't say this enough, I wish I would have had implants placed 10 years before I did. I love my tooth implants!! For the cost, I'd skip the whole root canal and just spend the money getting the tooth pulled and getting an implant placed. Implants look and function just like normal teeth. I can eat steak, corn on the cob, anything I want without a problem. They get brushed and cleaned like normal teeth, they do not come out like dentures.

[drz]

The sinuses affect the teeth and the teeth affect the sinuses. My experience has been if a tooth needs a root canal, get it pulled and have an implant placed. I've been through too many failed root canals and failed endodontics trying to fix the failed root canals that just led me to getting the teeth pulled anyway. I love my tooth implants!! I can't say this enough, I wish I would have had implants placed 10 years before I did. I love my tooth implants!! For the cost, I'd skip the whole root canal and just spend the money getting the tooth pulled and getting an implant placed. Implants look and function just like normal teeth. I can eat steak, corn on the cob, anything I want without a problem. They get brushed and cleaned like normal teeth, they do not come out like dentures.

My dentist would never consider doing an implant on me because of the damage Wegs has done and the risks of infection from suppressed immune system, fear of rejection by jaw bone, possible problems with healing because of osteoporosis caused by Wegs and medicine, etc so I have the root canals when necessary and then they get pulled when they fail. Eventually it might be false teeth when too many are missing. Most of them are capped as they disintegrate and rot away from cavities even though the dentist see me often and they are cleaned three or four times a year and dental bills are huge. For me this is one of the big changes from Wegs.