I am new to this site and this is my first q. I am in the MCTD vs. “borderline positive” Lupus (whatever that is). I have a hard time with plaquenil due to headaches, dizziness and the ability for my eyes to focus, but that is for another discussion. I decided to restart the plaquenil because I went about 5 months straight with the ulcers in my mouth with at least 3-4 at a time. Every time I look line at those infamous 11 criteria, the mouth/nose ulcers are listed as "painless., mine hurt like hell. Would live to hear what others experience. Thanks!
It’s a stupidity in print that needs to be am mended and they refuse. First of all that criteria is not official for diagnosis. It came from a study a long time ago, and was meant for selecting participants. The ACR refuses to standardize a list for us, even now. I ha e extensively questioned members of large online Lupus support groups because my first rheum also insisted they are painless if from Lupus. It’s a total crock. Everyone says as I do. It’s a sore, IT HURTS.
Mine very from very painful to the point of causing me not to be able to chew and with fever to totally painless. I have always wondered about that. Thanks for sharing, Tala!
Anything that ulcerates can cause pain. Mine also vary from minor with little pain to major with tons of pain especially if they are in the way of eating. I use Kanka rather than Ora Gel for the pain as it comes with a brush. No longer have to get fingers messy or find a Q-tip. Hope you feel better!
Sheri
I have loads of ulcers and they are so painful thats the mouth ulcers. Get them down below as well and they are really bad cus cant sit down. So either i cant eat or cant sit. Dunno which is worse. Lol. Wud cry if i didnt laugh. X
Last summer I had about 11 mouth ulcers which my doc told me were caused by methotrexate. I could not eat for over a week. I lost weight but it was not the most fun as far as weight loss plans go! It was incredibly painful and I had MRSA at the same time. When one of the ulcers fell out it exposed a nerve in my mouth, the pain was so bad we had to leave a family party so I could go home to roll into a fetal position on my bed.
Luckily there are mouth washes that relieve the pain. Ask your doctor and maybe you can have them just on hand. Good luck! It’s sort of a game with this disease - you take the drugs and just hope the side effects are less than the Lupus symptoms.
I have ulcers all the time. Ask your doctor for miracle mouth wash. Swish and spit. It’s great. Also you can take mylanta and swish it. It coats your mouth and relieves pain for a little bit. Hope this helps!
I have had the mouth ulcers and mine always hurt my doc at the time gave me a paste to put on it and it worked great I will look tonight and see if I still have the tube and can tell you the name of it so you can ask your doc about it.
Thanks everyone for the feedback and treatments. I will certainly give them a shot. I have had them forever and just deal. Restarting plaquenil helped…well, maybe it was the fact that I finally figured out I had to cut some stress out if my life!
I noticed this morning three little small white bumps (look like pimples, not canker sores) and yes, they hurt when my teeth hit them.
My grandson and daughter had coxsakie virus back in June and pharmacist told my daughter to mix mylanta with liquid Benadryl (half and half) and Dan on mouth sores with a q-tip…did this in the morning and it seems to be working.
I get them in my nose, and they are really painful. I have been lucky enough not to get them in my mouth thus far. If you can’t get in to see your doc while you have them I would document it (I keep a daily journal with pain levels and symptoms and my doc loves me for it) by taking pictures and write things down like how long they lasted, how painful, any new things you’ve added to your diet or stress levels or anything like that. It would help your doctor figure out what might be symptoms of lupus or it can be something completely different. If you have questions about how I keep my journal (it was what finally helped me get my diagnosis ten years ago after years of being sick) feel free to message me, it can be an invaluable tool. Good luck
I get them in my nose, tounge and inside lips. They tend to be painful. The ones on the roof of my mouth and cheeks are not. I hate geneal statements about symptoms, like ovarian and breast cycst are painless. I wanted to kick my last gyno for telling me that. I ended up having surgery to remove a large painful cyst from right ovary. Now cysts have returned in right breast and ovary. I wish there was a way you could make Dr.s feel your pain.
I also get them in my nose and they hurt and bleed. I also have sores all over my scalp and now I'm getting them on my shoulders and upper back and chest. They are not acne. they are flat red sores that hurt and sometimes itch. I just started doxycycline, so I'll see if that helps.
