a little over a month ago i took a trip to the Emergency room because my tongue had swollen more than twice it's size. I was on plaquenil, prednison and aspirin at the time. the doctors gave me antihistamines that did not help, eventually a massive IV dose of steroids made my tongue go down. The rheumatologist said i was most likely allergic to the plaquenil so i have ceased taking it (im still on predisone and aspirin). the other day my tongue flared up again, no where near as bad or for as long, it went away on it's own.
i was just wondering if anyone else experiences this? whether it's a lupus this, a medication thing or something else entirely.
Hi I was just diagnosed with lupus last fall. two years ago i had )and still have) a fasiculating tongue not so swollen that it impedes my throat. went to neurologist he saw it moving had a brain mri that showed nothing 3 different mds saw this they sent me to a specialist in burlington ma for a biopsy and when i got there my tongue wasn;t moving. he said he knows it was moving because 3 different drs saw it. my tongue is swollen only a little and only on the left side. I am on plaquenil now and I think my tongue is alittle better.
I have been diagnosed with Lupus for several years now, sometime during my flares my tongue will swell or be very sore. I have never taken plaquenil medication before and is sure it’ s do to
my lupus flares.
I started methotrexate and continue my plaquenil and have experienced a heavy tongue
I've had a few instances during flares when this happens. I've been told that it's actually a bacterial infection and really thing about how much "uck" goes in our mouths. I was given liquid Nystatin to rinse with and within a day or 2 it goes back to normal. If, however it impedes your ability to swallow, or Heaven forbid breathe it could definitely be an allergy. Remember, we have compromised immune systems and the tongue is an organ like any other. My rhuemtologist told me to suck on suger free mints as, because of the disease we don't produce enough saliva to appropriately cleanse our mouths after eating or drinking anything like we used to. Make sure to brush, floss and definitely scrape your tongue. I know it's painful, but worth it to avoid it as often as you possibly can.
I hope that you have found helpful advice from the group...they are awesome!
Take care of yourself,
HI, I AM SO SORRY TO HEAR ABOUT YOUR TONGUE. I HAVE A HUGE PROBLEM. I AM LOSING MY VOICE AND THEY TREATED ME WITH 3 SHOTGUN TREATMENTS OF ANTI BIOTICS. NOW THEY DID NOT WORK AND THEY ARE CALLING MY THROAT PROBLEM A FUNGUS.
I ALSO I EXTREME SWELLING OF MY LEGS AND THEY ARE RED, AND HURTING. I PRAY GOD HELPS US SOON. PLEASE FEEL FREE TO CALL ME OR EMAIL ME.
MICHELE AND SERVICE DOG RUSH
HELLO, I AM SO SORRY TO HEAR ABOUT YOUR TONGUE. I HAVE A HUGE PROBLEM WITH MY VOICE BOX. I CAN NOT EAT MUCH, JUST SOFT THINGS. THEY GAVE ME A SHOTGUN TREATMENT OF ANTIBIOTICS (MIS SPELLED). THEY DID NOT WORK. NOW THEY SAY IT IS A FUNGUS INFECTION OF SOME TYPE. NOW I HAVE ANOTHER PROBLEM. MY FEET AND LEGS ARE SO SWOLLEN MY SHOES DO NOT FIT. THEY ARE SO RED AND BURNING. HERE I AM SICK AND SUFFERING FOR 3 NITES WITHOUT SLEEP. DEAR GOD, HURRY PLEASE COME AND GET ME OUT OF HERE. LOL TAKE CARE
thank you eveyone. It's good to know i'm not the only one with these weird things happening. I will make sure to keep an eye on my tongue from now on
I have never had a swollen tongue but I do get what I thought was thrush. This has gone on for years and the PCP I finally left kept telling me it was just me being weird. I found that thrush medicine I had still on hand after actually having thrush from being on antibiotics did help. Then I found out that lupus can cause all of that too. The good thing about my former PCP is he has an office manager who told me to get to a rheumatologist as she suspected for years what I was dealing with.
My daughter has episodes of swollen tongue with sores sometimes. We are going to get her tested for Lupus. She has many signs.
Dear Izzy, I am also a mom and I feel terrible for you and your daughter. I do not wish this on anyone but especially not a child!! I hope for both your sakes it is something much less invasive than lupus. My heart goes out to you. Let us know how it goes. Good luck!!! Prayers to you both.
Hi !!!, funny how you may mention this i have this almost every other week -for the last 2 years. My doctor says that it's the meds.( the same ones that you take - i am on them also ). so every other day i take an antibotic(Sulfamethoxazole) - it really helps ask your doctor about it the next time you go visit . Also you might don't need to take aspirin (maybe)-smile ) . But no the less you are not alone with "Living with LUPUS", we are here Take care , and talk with you later....Beverly L.
I have always kept sore throat when flare ups come. 6months ago my tounge swelled awful. It has not went away. I got same treatment as you and remain on steroids now. Doctors said it lupus. My neck and face swollen too. Ive had lesions on vocal cords that come and go. Wasn't cancer, drs were baffeled. But it took three months to go away. I have scope apt in two weeks Im hoping it resolves itself.
Denise, may I ask what you do take for the lupus?
Denise Fayson said:
I have been diagnosed with Lupus for several years now, sometime during my flares my tongue will swell or be very sore. I have never taken plaquenil medication before and is sure it' s do to
my lupus flares.
I have not had any issues with my tongue but I do take plaquenil and the way it was explained to me was it takes anywhere from 3-6 months to really take affect and from what I understand it can take just as long to leave your system so depending on how long you took it and how long you have been off of it it may still be in your system causing your tongue to swell. Sorry I don’t have any real words of wisdom. Good luck!!
I had great success with the Nystatin rinse. As well as using the sugar free mints to create more saliva to replace what is lost by way of our disease or our meds.
I have mentioned this before and am curious why no one has asked to try this treatment?
I have this all the time but never knew what or why I am getting it. Could be a Lupus thing I guess......
Any one here? :)