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Using aquaphor and stretching my lips, I'm using orajel inside. I don't see my rheumy till June, I'm on hydroxychloroquine, should I call her or is this just how it goes...? Tia

April 28, 2025
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A MyLupusTeam Member

Cheryl, I had the same problem a few months ago. The sores in my mouth were on the sides of my tongue, underneath and It felt like they were going down the left side of my throat making it even hard to swallow.I put out feelers for anyone in the Lupus community who may know what to try.A gentleman told me to try Lysine Supplement, it's for collagen and tissue maintenance. I,at this point was ready to try anything and being a dietary supplement I saw no problem.
I started on 2 a day and in 3 days my sores were almost completely gone.
I, agree with others that you should ask your Dr. in case there is some underlying problem, but if it's going to be awhile, all I can say is "they worked for me!"

May 1, 2025
A MyLupusTeam Member

My dentist prescribes a dental paste that really works to heal.

May 1, 2025
A MyLupusTeam Member

I would call your doctor, Cheryl. This sounds miserable! They can order viscous lidocaine or "magic mouthwash" to relieve the pain so you can eat. It's worthwhile having them examined, as it's so severe. Infection is a possibility in addition to a lupus flare.

Hope you get relief soon!

April 29, 2025 (edited)
MyLupusTeam

Yes, you should call your rheumatologist rather than waiting until June. Oral and nasal ulcers can increase your risk of infection, which is particularly concerning when you're taking medications that affect your immune system like hydroxychloroquine. Your doctor may want to run blood tests to check for any vitamin Show Full Answer

Yes, you should call your rheumatologist rather than waiting until June. Oral and nasal ulcers can increase your risk of infection, which is particularly concerning when you're taking medications that affect your immune system like hydroxychloroquine. Your doctor may want to run blood tests to check for any vitamin deficiencies that could be contributing to the sores. While you wait to speak with your doctor, here are some management strategies that may help:
- Use ice packs if you're experiencing pain with swelling
- Apply lip balm with SPF 30 or higher when going outside
- Avoid touching the affected areas with your hands
- Consider trying over-the-counter artificial saliva products if dry mouth is contributing to the problem
- Maintain good nutrition and stay hydrated, but avoid salty, acidic, or dry foods that might irritate your mouth further

April 28, 2025
A MyLupusTeam Member

My dentist prescribes a dental paste that teally works for mouth sores. Helps relieve yhe pain.

May 10, 2025

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