Mouth issues

[SherryKayB]

Has anyone else experienced sores at both mouth corners, now including very dry mouth, sore lips and tongue, sticky mouth feeling? Dermatologist tried me on 4 different mouth cremes unsuccessfully and has referred me to ENT doc in mid March. On my own made a dental appt for tomorrow thinking maybe RA has now caused periodontal disease. Maybe the specialists are looking for zebras when it's actually a horse? Another possibility: could be mouth ulcers caused by methotrexate. Does anyone have thoughts or a similar experience?

[Helloshelly]

Methotrexate, more than likely. Hopefully your ENT will have a plan. So sorry you are experiencing this possible side effect. You take care.

[SherryKayB in reply to Helloshelly]

Thanks, Barb66. I saw the dentist today for a consult and I do not have peridontal disease. Dentist says so far what has been done is right and next step is ENT doc. He is as puzzled as I am. Anyway, ENT appt is 3/14. Guess I will have to wait for that and see what happens then.

[Barb66]

Yes I've had a sore on the side of my mouth now for a over a month, it heals, gets scaly and then cracks again! I thought it might be my mtx?

[Hidden]

Hi SherryKay - Try some EV coconut oil to help with the sores. It is antiviral, antibacterial, etc., and it moistens well. It may even help prevent them if you use it routinely... Best luck getting it identified

[SherryKayB in reply to Hidden]

Thank you, CaerylUSA. I will try it. Couldn't hurt, for heaven's sakes! This has been going on for months without resolution and is so unsightly and annoying.

[Martiroam]

I have a chronic problem called Lichen Planus Mucosa, which affects tissue in the mouth. It is currently dormant thanks to an off-use of a retinol- based cream that my dermatologist gives me. She providesme sample tubes since this use is not covered by insurance.

[SherryKayB]

Martiroam, can you let me know the name of the medication so that I can bring its use up as a possible solution when I meet with the ENT doc on the 14th? Going to the dentist today to see if periodontal disease may be present, although I doubt it. More likely it is a reaction to methotrexate.

[Debb721 in reply to SherryKayB]

It is methotrexate. Taking pills 1/2 dose for 2 days will help or 3 days!! Talk to your dentist about mouth wash. They make very soothing kinds to date!

[SherryKayB]

Helloshelly, you and I suspect the same thing: Methotrexate. I have taken it for years but I guess one can develop a side effect at any time. Another possibility to bring up to my dentist and ENT doc. Thanks for your support.

[Helloshelly in reply to SherryKayB]

Keep up the good fight!!

[Mardar]

You might also mention to them Sjogren's Syndrome. That doesn't explain the ulcers, but certainly does the dry, dry mouth, lips, tongue. Also eyes can be very dry. It's a common "companion" autoimmune issue in people with RA.

[GoatGirl56]

yes - awful sores - on methotrexate. Get inside lips, inside cheeks, on tongue and causes gum swelling and pain in the area... I use coconut oil with a few drips of Oil of Oregano, but seeing dentist today... at one point ALL of my teeth hurt!

[SherryKayB]

I sure hope it's not the Methotrexate but I suspect it. I did see the dentist this week to rule out periodontal disease and he said the dermatologist is right to refer me to ENT doc. He reviewed everything they've done so far and said it is what he would have done also. So I have to wait until mid March for the ENT doc appt. In addition, I am having an RA flare in my hand which is painful. RA doc out of town so she called in prescription for Prednisone and Tramadol. Should bring relief, I hope. Good luck with your dentist. I will be interested in what you learn from that. Sending you virtual hugs.

[Helloshelly in reply to SherryKayB]

My Rhuemy recommended splitting my Methotrexate dose in half too. Half dose in the morning and the remaining half dose 12 hours later. Hope it helps

[Debb721]

Hi, I am Debb! I have had mouth sores due to methotreaxte. My rheumatologist split my methotrexate into two days. IT WORKED!

Let me know if it works.

Warm hugs

[SherryKayB in reply to Debb721]

Well, that is certainly worth a try. Are the days far apart or one right after the other?

[Debb721 in reply to SherryKayB]

One day and then the next day!! Good luck!

Warm Hugs

[Tizzyliz]

I will ask my mom but she has RA as well as me, I remember her getting mouth sores as well as dry mouth. I will ask and get back on her tomorrow

[SherryKayB in reply to Tizzyliz]

Thanks. So confusing. Nothing has helped to date--2 doctors and 4 medications and sores persist. Appt. with ENT doc on Tuesday. Hopeful to find an answer at last.

[Tizzyliz]

My mom went off medication then they went away. Take care hope you find a solution

[tselph]

I take leucovorin along with my folate to prevent mouth sores. I also have Sjogrens which cause severe mouth, throat, eye & other tissue dryness. You might look it up to see if any of the symptoms apply to you. I use Restasis, dry mouth lozenges, & anything else I can think of to help with the dry mouth & throat problems. I hope these suggestions help.

[SherryKayB]

Thanks. I will investigate further. I appreciate your feedback.

[GoatGirl56]

Hi, are you on methotrexate by any chance?

I've had mouth sores since RA pain set in. I've read that mouth sores (and periodontal disease) can be side effects of RA. But I am also on MTHX and it ALSO has a side effect of mouth sores. Recently, I have had truly large and painful canker sores inside my lower lip. One begins to heal and then another pops up. I can be difficult to eat, drink, talk - sometimes just to breathe. I've treated with just about everything [ oil of oregano, hydrogen peroxide, otc canker sore pads and pain relievers] and followed advice of my dentist: use toothpaste without whiteners or tartar control and rinse frequently with chamomile and tea tree oil. I see my rheumatologist in a week or two and get his advice, but, aside from folic acid supplements, which I've been taking for over a year, I'm not sure what else there is. It's truly uncomfortable. I don't know if the dry mouth helps breed sores and gum problems, but it doesn't hurt to use Biotene frequently too.

I feel for you - good luck and post if you get any answers or relief!

[tselph]

SherryKayB, I have that same problem. My mouth sores are caused by the methotrexate that I’m on. I have to stop taking it until the sores clear up. But when I resume taking I break out again. I’ve had them on my tongue, under my tongue, and on the inside of lips, you name it & I’ve had them there. I also have Sjogrens. You might want to research it. I get so dry everywhere. My mouth, throat, eyes, & any tissue that produces moisture. I use Restasis for my eyes and take Pilocarpine for my dry mouth & throat. When I wake up in the mornings my tongue sticks to the roof of my mouth & I can hardly swallow. The pilocarpine really helps. But I have to take it 3 times a day.

Please talk to your rheumatologist about these things. Sjogrens can lead to severe dental problems if you don’t get it under control. And mouth sores/canker sores are no fun. Mine hurt to brush my teeth & even eat. Take care.

[SherryKayB]

Thank you for sharing and for your advice. It's tough to deal with, isn't it?

[Cyndie41]

Sherry, I've had RA for 28 years. And even before that I'd get ulcers in my mouth, and the corners of my lips crack.. Peel and bleed constantly. My hygenist calls it chleilitis or chelosis. The only thing that heals this "for me", is nystantin and triamcinolone acetonide ointment. Constant lip balm on my lips (Only the oinment works for me) and lots of vitamin C...just don't lick your lips the ointment tastes bad. I've been on different doses of oral steroids and have, geographic tongue and callouses on the side of my tongue where it rubs my teeth. When the ulcers get bad I need an oral antiviral medication. Or kenalog in orabase, a dental paste. Heres a link to show your Dr... Or dentist. I hope this helps.. Not a diagnosis just my experience...and working for a dentist for 23 years. Good luck and God bless.

Medical Definition of Cheilitis. Cheilitis: Inflammation of the lips or of a lip. ... Angular cheilitis is inflammation and fissuring radiating from the commissures (angles) of the mouth secondary to predisposing factors such as nutritional deficiencies, atopic dermatitis, or Candida albicans (yeast) infection.

[Cyndie41 in reply to Cyndie41]

I forgot to mention, I stopped my methotexate in 2000. And also have dry mouth,and dry eyes.

[tselph]

Have you been diagnosed with Sjogrens?

It could be from that. I have Sjogrens and I fight mouth sores, too.

[SherryKayB in reply to tselph]

tselph, thanks for your reply. No, I have not had that diagnosis. A good topic for me next RA doc appointment. Thanks

[PennieMC]

I was diagnosed at 19 with RA. I have now had it for nearly 26 years. I do not have periodontal disease, but I do have Sjrogen’s, Graves, PCOS, and skin issues . Progressive RA alone can cause many skin issues such as Rheumatoid Nodules and Infarcts. The other thing to keep in mind is that with RA being an auto immune disease most of us begin to develop other auto immune diseases over time. I haven’t been on methotrexate in over 14 years and I still experience the splits/sores on the sides of my mouth. The only thing that works is daily exfoliation with a facial brush and constant application of coconut oil, especially at night. The minute I stray away from this regimen the splits/sores return. I have stick of coconut oil everywhere so I can apply it easily. Good Luck!

[tselph]

I think I have already responded but again, I have been going through the same thing. I’m on Pilocarpine for the dry mouth & throat. It really helps. But I have mouth sores or canker sores inside my mouth, lips, tongue, etc. & it’s from my methotrexate, I pretty sure. I quit taking it when my mouth breaks out. So I have been off then on and now off again with it this month & last month. It even hurts to kiss my husband.

Ask your doctor to put you on Pilocarpine. Try it & see if it helps your dry mouth. Won’t hurt.