I just joined today. I was diagnosed back in 2006. I have had oral ulcers since I was first diagnosed (my first symptoms and later confirmed through blood tests) and they have started spreading to my throat. I am currently in alot of pain and discomfort. Eating is akin to torture. I was given plaquenill but it doesn't seem to be doing anything. My rheumatologist is reluctant to start me on anything stronger since I have jevenile diabetes.
Does anyone have any info on dealing with these mouth and throat ulcers. The doctors don't seem to take me seriously and say to just keep using the lidocaine based mouthwash. That's fine for the mouth ulcers but not for the throat. She doesn't even think it could be related the lupus. She says it might be herpes but I had a biopsy a few days ago and the doctor didn't even mention herpes as a possibility.
Any help you guys could give me would be greatly appreciated.
First, let me welcome you to our family here. I am glad that you found us and that you decided to join.
One of the most common features of lupus is the mouth/throat ulcers. This often occurs when the disease is active and sometimes is accompanied by increased joint pains, rashes and hair loss. Like you, I suffered greatly from the mouth ulcers and, also like you, I was unable to eat as it was torture!! I also had the ulcers on my hands, feet, and my scalp.
Plaquenil was the drug that worked for me. However, you need to know that Plaquenil is a cumulative drug. This means that it must build up in your body before you can see significant results. So, it can take weeks to months before you really notice it working. But, for me, once the Plaquenil started working, the ulcers began to heal quickly and they never came back.
This issue is how to deal with them while you are waiting for the Plaquenil to work. Unfortunately, there are not a lot of remedies that work because the ulcers are systemic, not topical. What most doctors recommend is antiseptic mouthwashes and sometimes steroid lozenges or paste.
1) Some people say that rinsing their mouth with hydrogen peroxide helps.
2) I've also heard that the following helps: EQUAL PARTS CHILDRENS BENEDRYL AND MILK OF MAGNESIA. SWISH AND SWALLOW. JUST USE THE LITTLE CUP THAT COMES WITH ONE OF THEM. FILL WITH EQUAL PARTS OF EACH. DO THIS A COUPLE TIMES A DAY.
3) Also, 3 parts benedryl, milk of magnisia and lidocan
I cannot attest to any of these as I've never tried them myself. Perhaps someone else will be along with more helpful information for you. In the meantime, keep taking the Plaquenil as it is one of the best treatments for the oral ulcers.
Peace and Blessings