Sores back of throat

[Sammymoat1986]

Hi guys I was Diagnosed with SLE exactly a year ago I’m on plaquenil ans methrotrexate and steroids but I keep getting recurring sores/ulcers on the back my of throat which is so painful I can’t eat or drink my gp said she thought they were ulcers due to lupus and gave me some throat spray does anyone else get them I do get them in my nose and mouth but I’ve starred getting them directly at the back of my mouth! And throat

[conniemcall]

Im so sorry about ur throat ulcers!

Ive had Behcets for 40 years and im no stranger to those areas being ulcerated including my epiglotus!

Extremely painful!! Ive had them up to 6weeks before healing! So I feel ur pain! I have been on similar meds to u. And also various infusions. I havent found any treatment to help or even a lozenge or spray to reduce the pain! I hope u do find something!!

Hopefully these will be infrequent for u!

At times i cant bear even swallowing saliva its so excruciating!

I found milk more comfortable than water!!

Sloppy foods like ice cream. Custard

Mash potatoes. Bland macaroni etc!! Also ur gp can prescribe supplement drinks if prolonged! This will help with nourishment and vitamins etc!!

And if u can tolerate a hot curry without hard meat or veg bits. It seems to numb for a little bit!!

I hope this helps a little!!

I truly hope it doesnt happen too often as i know how awful the pain is!

Keep ur chin up sammy!!

Hopefully someone will come up with more remedial tips!

Take good care!!

[Sammymoat1986 in reply to conniemcall]

Thank you so much for taking the time to reply this and it’s made me feel so much better knowing I am not the only one they make talking difficult too as my throat is so roar I found a mouthwash the other day difflam which seems to be really helpin!! Yes the saliva swallow ouch! It’s awful it’s been about 3 weeks now and driving me insane it’s stwrting to ease off so I’m hoping this is the end xxx

[dawnbeaven]

I’ve been on course if steroids fir couple of months fir chest infection and broken ribs my mouth is covered in these sores mouth ulcers was told it’s steroid burn

[Caramia1964]

Hi I have just had the worst mouth ulcers yet , usually just small ones but this times the whole roof of my mouth was painful and ulcerated at back of throat, again like you I found it painful and hard to swallow as it hurt so much . They have taken weeks to heal , but finally getting better. I also have almost constant nasal ulcers again which can be painful. I have SLE and sjogrens . Only on hydroxychloroquine 400mgs daily

[Freckle1000 in reply to Caramia1964]

I have SLE - and frustratingly we all have different illness patterns - with different sets of mild and serious symptom's - but if my throat and mouth ulcers get worse I tend to see this as a flare and see a specialist about it - enquire about increasing medications ?

[Sammymoat1986 in reply to Freckle1000]

I am back to see the rheumatologist in August I was given a kenalog injection about 3 months ago so think it maybe that is wearing off?

[Freckle1000 in reply to Sammymoat1986]

Im sorry, I have no idea. I can really only speak about how my pattern of SLE, and I've never had a kenalog injection. We're all frustratingly different with our sets of symptoms and the medications we take.

Its an issue to be very assertive with you're Rheumatologist - dont be afraid to ask her/ him about these ulcers and sores and wether they're an indicator of a flare for you.

But ultimately it's you who often knows best wether you're flaring or not.

Always trust you're own instincts and perceptions regarding how unwell you are and always act on it - no matter how much flack you might encounter. Never be afraid to Doctor bother - always ! - see them earlier than planned if you're concerned.

X

[Caramia1964 in reply to Sammymoat1986]

i too had a kenelog injection last time I saw the rheumatologist instead of going onto oral steroids. It is wearing off too now, so am flaring again !

[Sammymoat1986 in reply to Caramia1964]

I get the nasal ulcers too they aren’t nice at all are they they mess with my sinuses too my mouth ulcers have been around about the same time I used difflam mouthwash this reallt seemed to help a lot!!

[CecilyParsley]

I have had gastroscopies where they have identified bleeding ulceration right down my gullet. They said it was thrush and took biopsies and they came back negative for thrush so the Rheumatologist believes that these are Bechets sores. They are incredibly painful. I have tried dissolvable prednisalone, various mouth washes, but nothing has worked. For the ones in my mouth nose and genital area now I use Instillagel local anaesthetic prescribed by my GP in syringes. I use a Q Tip to treat the ones in my mouth and nose. Careful of your tongue if you do use it as it does numb. Good luck with finding something for you.

[Sammymoat1986 in reply to CecilyParsley]

Oooo I wonder if I can get that I get genital sores too they are so painful but don’t last long for me which I’m glad about as they are agony!! Difflam is good for mouth washes but I will ask my gp about the local anaesthetic thank you!!

[CecilyParsley in reply to Sammymoat1986]

I get a box of about twenty syringes of Instillagel. It stings like hell but then at least you have some relief for a while. Good luck x

[Freckle1000]

Just said to Caramia1964 - what I was going to say to you.

xox

[skylark15]

Hi, Sammymoat 1986.

I notice you're taking Methotrexate. That can cause mouth & throat ulceration. It might be worth contacting your rheumatology nurse & discussing it.

I hope you can find some relief.

[Sammymoat1986]

Thank you all for your replies it means so much to get so much knowledge from other ppl! I am having to come off the methotrexate because of frequent infections and the amount of ulcers I am getting! They are also testing me for Behçet’s which has been mentioned because of genital sores these are incredibly painful x