Mouth issues

[cjhnsn29]

I was wondering does anyone with WG have mouth problems? Most of my problems has to do with my face. Like others I also have the saddle nose and can't smell or taste. Recently I have issues with my upper jaw and the Dr's say it's related to the WG. I haven't heard anyone else talk about mouth and teeth issues. I am just curious if I am the only lucky one. It is no fun trust me.

[drz]

Mouth sores are common with Wegs. I have them from time to time. I was encouraged to have regular dental check ups but already had that program since diabetes causes similar dental issues and mouth sores. Are you taking any meds to help prevent mouth sores? Eye problems and skin problems are often part of Wegs too.

[cjhnsn29]

DrZ! Thanks for answering me on the mouth issues. My WG does mess with my eye vision at times. Bright lights tend to hurt and I can't be on computer or watch TV for a long period of time. With having the saddle nose I tend to breathe through my mouth. That makes me a month breather also with all the meds my gums became irritated and ended up becoming loose . The gums ended up going over my teeth and I ended up having mouth surgery. The worse part is I am a licensed Dental hygentist and never had any problems with my mouth.now it's a issue.

[me2]

I had mouth issues 40 years ago when diagnosed with WG. I had sores in my mouth, loose teeth, and my tounge turned black. Once my general WG was brought under control with Cytoxin my mouth issues cleared up and I did very well for about 20 years until having a flare up. As drz has said, mouth issues are fairly common. This time things have not been as bad for my mouth and they have again improved as my general condition improves. I can appreciate how it would especially bother you being a Dental hygenist. What does it mean that the gums ended up going over your teeth? Has the surgery improved things for you do you think?

[drz]

My problem is my gums recede and expose new areas below the capped teeth. I wish I could make them grow up a bit. Dry mouth also contributes to dental decay and my dental problems increased a lot after Wegs appeared.

[cjhnsn29]

Me2! Thxs for answering my question about mouth issue. You asked what I meant by my gums growing over top of my teeth. My WG is mostly in my face are and the Dr said I wasn't getting enough blood supply to my gums. The gums died and when they died they were floppy and they laid over my teeth. The dentist actually took an impression the four top teeth came out.He even tried periodontal treatment to help tighten the gums up for all the rest of the teeth. With my saddle nose I am a mouth breather which makes it worse. Between the dry mouth and med's made it more pronounced.

[drz]

Sorry to hear about your dental problems. Dry mouth is hard on our teeth. Have you ever tried the stuff to help keep them moist? I bought some stuff but it seemed like too much work to remember it every night. It is not like the nasal rinses where you notice the difference right away.

[Alysia]

Hi. I am sorry for your mouth issues. Sounds tough. I had gums bleeding at the beginning, at the same periods that I had nose bleeding. No more since rtx. Thanks God.
Check this thread, maybe send pm to Titus who wrote it: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/5220-soft-palate-involvement.html

[cjhnsn29]

DrZ! Being a registered Dental hygentist I have everything.whats sad is I never had problems with my teeth until the WG. Now I have most of my pain in my head.lol before you day it I know it's all in my head �� They had to do surgery on my mouth and Bone grafting (lot of fun"NOT). It's taking me longer to heal due to the immune system. Nothing like going to college and become a Dental hygentist and now mouth problems.believe it or not its embarrassing. Probably cause that's my career.

[cjhnsn29]

Alysa, you are lucky it stopped. It is no fun. I really believe it has to do with my mouth breathing and medication. With the saddle nose I can't breath through my nose. I am glad yours stop.

[Susan55]

I saw my dentist for a cleaning 6 months ago. He said you have bone loss and need to tell your family doctor asap. I did and he said nothing (as usual) but now I just found out last week i have GPA. So, I am guessing this is normal? The dentist said your teeth and just start falling out . I did the the Rheumy on Monday when I saw her but I didn't get an answer as she was asking all the questions being my first time to see her.
Should I call my dentist and tell them I have GPA?

[Pete]

I saw my dentist for a cleaning 6 months ago. He said you have bone loss and need to tell your family doctor asap. I did and he said nothing (as usual) but now I just found out last week i have GPA. So, I am guessing this is normal? The dentist said your teeth and just start falling out . I did the the Rheumy on Monday when I saw her but I didn't get an answer as she was asking all the questions being my first time to see her.
Should I call my dentist and tell them I have GPA?

I doubt that your dentist will be able to do much except repair the damage. You should ask your rheumy about it. Long-term prednisone use can cause bone loss (osteopenia or osteoporosis). My doc recommended taking calcium and vitamin D supplements. I take two Caltrate + D (600 mg Ca and 800 iu vitamin D) daily. That arrested my osteopenia. My teeth are ok so far. Some people need something stronger such as Boniva or Prolia.

[Susan55]

Thank you Pete, I will call tomorrow and go in for a check up and let him know about the GPA. I've been taking Vitamin D and Calcium for the COPD, but maybe not enough ..I need to up the dose on it starting tomorrow..thank you for sharing ;)

[Alysia]

Sue, do you have bleedings in your gums ? If you do, it can be wg.

[Susan55]

Hi Alysia

No bleeding gums, but I will tell my Rheumy again when I see her. I see the bone loss where two teeth were pulled yrs ago. I increased my Vitamin D and C as I don't believe I was taking enough.

[Susan55]

I had mouth issues 40 years ago when diagnosed with WG. I had sores in my mouth, loose teeth, and my tounge turned black. Once my general WG was brought under control with Cytoxin my mouth issues cleared up and I did very well for about 20 years until having a flare up. As drz has said, mouth issues are fairly common. This time things have not been as bad for my mouth and they have again improved as my general condition improves. I can appreciate how it would especially bother you being a Dental hygenist. What does it mean that the gums ended up going over your teeth? Has the surgery improved things for you do you think?
Hi me2

I went for my cleaning 5 months ago (prior to knowing I had GPA) and the dentist said I have bone loss and eventually my teeth will become loose and may fall out. What cause the teeth to come loose? I know loss can cause this,but goes GPA also cause teeth loss? so just so much to learn about GPA

[Pete]

Chronic prednisone use leaches calcium from the body. Taking a supplement such as Caltrate+D may help. Talk to your rheumy.

[Susan55]

Sue, do you have bleedings in your gums ? If you do, it can be wg.
Hi alysia
No, no bleeding at all. Was told bone loss but I think this is from the gpa? all I know is all my crazy symptoms and so many of them are now all adding up and leaning to GPA AFTER all these yrs
I'm at a loss with so many symptoms going on :( Since I started MTX and the steroids so many symptoms are less now (rash, ear pain, vision, less head pain) etc. So, it's slowly getting better and better days ahead, just have to be strong and a fighter and learning to stand up for my self more and started asking tons of questions to doctor's and keeping notes now. I actually start a binder with everything. Then I know exactly what is going on and can share with other doctor's if I need too.