Ulcers on tonsils killing my morale

[atkinsd]

Has anyone suffered with huge white ulcers on their lower tonsils? Went doctors and she took a quick look and said tonsillitis. Had what looked like lots of them now I am left with 1 on either tonsil. I can't work, eat, sleep and I'm feeling down. No energy, constant sharp shooting pains on both sides. This has been full on for a week. Any tips or experiences please

[LisaNZ]

Yeah I get ulcers on my throat quite frequently, and sometimes down the back of my throat. I always thought I was getting a cold or had tonsillitis or that my glands were up but turns out it was behcets. I’m only recently diagnosed but the dr has given me some kind of steroid inhaler that people with lung problems use. Called permacort I think. I have to use it twice a day and try not to inhale too deeply so I don’t get all the effects of the steroids in my lungs. I took it this morning and I can already feel them getting better. Also heard of people using the inhaler for mouth ulcers - I’m trying that too. What I used to do when I thought I had tonisilitis, and it was quite successful, was gargled a betadine (an iodine solution from the chemist) a few times a day. That worked well! Iodised salt would probably do a similar thing. Oh and took paracetamol every 4hrs. Apologies for the long post!!! Hope something in there helps someone :)...wish you well for your recovery. Ulcers suck!

[gillianTS]

Gargle like LisaNZ has said but after every meal and drink, make sure it's the last thing you do before bed. I also used to use an antiseptic throat spray, had tonsils removed in 2014 turns out they were putrid inside even when the surface looked clear. Now get those ulcers and white spots on the back of my throat but they are no where near as painful and not as many or as frequent but a huge but I believe since having my tonsils removed it has made my Behcet's far far worse..

If you're antibiotics have not cleared this up please go back to your GP otherwise it will just go backwards again.

Wishing you a speedy recovery.

[2106]

I used to get them years ago couldn’t eat drink. It won’t solve the problem but use a natural toothpaste as this helps the mouth and throat. Also I take Merc Sol 30c which is a homeopathy tablet. If he doesn’t work no side affects. Hope you feel better soon xx

[SCMW]

Hi, yes with empathy, the pain can be unbearable. My symptoms started with bouts of tonsillitis again in my 30s, first thought to be glandular fever - with white spots down the throat and ulcerated tonsils. Roll on a few more years and more symptoms and I ended up with a Behcets diagnosis. Nothing sorted the ulcers until I was put on colchicine which sorted these out in 2 doses, i.e within a day and I had suffered constantly for years. The other saver is the triple mouthwash, so when you get ulcers, a mix of betamethasone, nystatin and doxycycline, dissolved with water, the only thing that have active pain relief and I think I’ve tried every ulcer product over the counter. I hope this info helps. I was in so much pain I couldn’t speak or swallow and had to lay towels over my pillows. It’s awful; get help. Best wishes

[Roc1479]

Not on my tonsils but use to get them constantly in my mouth. Humira works wonders for it and other symptoms

[RonSton7]

I am also finding the triple mouthwash as SCMW described to be an absolute life saver. Yes its an unpleasant taste, and in the UK (for me at least) there seems to be a supply issue with soluble betamethasone, but nothing has come close to effectiveness for oral ulcers for me as the triple mouthwash. It was better than the asthma type spray by far.

[dcrase]

Yes. I get ulcers on my throat with every flare. I occasionally have some in other parts of my mouth, but those don’t usually make me as miserable as the throat ulcers. I’ve even had them down my esophagus and once I had two large ones on my epiglottis (I guess that’s the flap that opens and closes when you swallow). That was the worst!

I haven’t found much to be helpful, except prednisone. The problem with that is that it helps you heal from that flare, but doesn’t help with recurrences. I hate taking it because of side effects, but if I feel that bad I’ll take it. I have tried colchicine, Remicade(which I had an allergic reaction to) and a few other meds. I am thinking of getting a 2nd opinion from another Rheumatologist on medications to try. Good luck to you!

[Frustrated2]

Hi I have gotten over with a small bout of pneumonia and was on 8 days of prednisone and antibiotics.

But now a week later I have what I thought was a scratchy throat. Last night I looked and I saw I have big Ulcers on my throat- tonsil area and I feel as if they are going down my throat and even inside my upper chest area. I do have Behcet’s and I’ve been on combination of colchicine and Hydroxychloroquine (Plaquenil) for a years now but wondering if this combo is not working for me. The next medication of choice is Humira, which I wasn’t sure I was ready to make that move (not fond of the idea of sticking myself with a needle 🥴)

Just wondering if anyone has advice as I won’t be able to get into my rheumatologist until first of February. I can see my GP but she’s like me still learning about this disease.

Thank you, this forum has always been so supportive and the most informative for me.