Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

912 Members
7,373 Posts
0 Online
Muscles & Bones
/ Lupus Support Group

Tongue Ulcers

bny806
bny806
Ugh, I have been struggling with a flare the past few weeks.. IVIG has helped quite a bit, but I am getting ulcers on my tongue (never suffered from this before).. Had one on my cheek, but i have one back on the back side of my tongue (where your tongue goes into your throat).. and wow, it's painful!!!! makes my whole tonge and that side of my throat hurt! I am having lots of other symptoms with this flare.. will see the doc next week.. yuck,!
MButterfly
MButterfly
I'm so sorry. tongue sores are almost as bad as the "sores downtown". Not quite...but close!

Neither place can use ambesol, and it hurts like the dickens.

I've been struggling with a super flare from hell for the last few months. IVIG is something me and my doc are considering. How's that working for you? Is it expensive? Does insurance typically cover it?

Sorry for all the questions...but I, too, am desperate.
bny806
bny806
oh, I never mind questions!! It has been great, I don't think I'd be alive without it actually.. I Had all sorts of symptoms when i first got sick.. they all knew it was something autoiummune, but i did have demylenation of my periopheral nerves - giving me the diagnosis of CIDP.. Lupus can cause this.. I have all the skin rashes, joint aches/pains, GI issues, visual issues.. had hematuria .. i couldn't even hold a pen and my breathing was being affected.. until I had IVIG .. and then I could pick up a pen again, hold a fork etc.. i was really ill.. when It wears off, i get butter fingers, tachycardia, breathing issues etc.. it all comes back.. so been doing it for 4 years now! So, in my case yes - insurance covers it, Yes, it's very expensive (even with insurance, we hit our out of pocket maximum the first month of the year).. the side effects can be an issue - make me feel pretty bad, as I have gotten aseptic meningitis, and it takes about 8 hours to infuse, every 3 weeks for me.. .. but again, I am very thankful for it!
MToennis
MToennis
I read on one of the sites, This one? That folic acid helped prevent mouth ulcers. I have not tried it as I seldom get them but those ones on the base of your tongue you are talking about really hurt. I think they swell the lymph glands too and that is why the neck hurts.
Mary Ann
bny806
bny806
thanks so much! I have to take folic acid for my MTHFR (Homozygous c677t ), though I haven't been good about it recently - maybe that has something to do with it!!! I would also love to not feel lie I have glass in my joints anymore - grrrr!