I have PBC stage 4. Diagnosed 2023 . Very lucky as I was in a very bad way. Not overweight lost 4 stone. Was having weekly blood transfusions, stomach bellding. 8 weekly endoscopy ablation. Developed RA. Sjogren's, the list goes on. Life is not so good. My question is about Sjogrens. This is the Bain of my life. I had lovely teeth they snapped off one at a time at the root very distressing. My dentist was fantastic , sympathetic tried everything but couldn’t do anything. Saw Tom man at Freeman hospital Newcastle. No treatment. Tried everything. My mouth is exceptionally dry but my young burns constantly effecting ability to eat or drink. Lots of ulcers . Toung now peeling sticks to inside of mouth and is excruciating pain at times. No let up . Has anyone else got this problem and if so any relief. Morphine sometimes helps but can’t keep taking that. I think it makes me depressed. I’ve never done depression not prepared to acknowledge It. I do anger and swear a lot. Then laugh at myself. Any help would be more than greatly received. I have exhausted my research.
very painful mouth: I have PBC stage... - PBC Foundation
very painful mouth
I can't even imagine what you're going thru. It would surely make any on us depressed. My only suggestion would be to join The Sjogrens Foundation. They have a support group. At least some of the folks might be experiencing what you are and have some suggestions. It sounds to me that you could use support from someone who has lived what you do. I looked at the Foundation's website and there is so much information and sections you an click on. It might a start for you anyway.
I am so glad you reached out here. I 'm hoping there are others here as well that experiences Sjogrens to some degree and can help you as well. This is such a common disease that PBC patients often have as well.
Please let me know how you are time to time.
sjogrens.org
Thank you so much for your reply. I will as suggested look at sjogrens support group. Will keep you updated, thanks for caring. This is one lonely journey no matter how good the support is. The reason I make that statement is because the answers to questions is no treatment . The medical team are fantastic very compassionate but that one looks says it all so you have to smile say thank you and get on with it. If you’ve got no quality what have you got. . Keep on smiling, battle on and don’t let the beggar beat you.
I just reached out to my best friend who lives in Munich. She has had Sjogrens for many years. She suggested (she uses) a Sage tea rinse and gargle. She also buys from Amazon GUM hydra mouth gel and their toothpaste. She stressed the importance of always keeping your mouth moist. Since it's all made in Switzerland, she thought you can access it all.
Really appreciate that. Tried several moth washes, sweets gum spray toothpaste etc unfortunately not working for me. Mouth washes are extremely painful. Have a prescription wash from dentist but have to water it down a lot. But thank you all the same.
I would think the Sjogrens Foundation has a support group as well.
l have Sjogrens as well and it can cause me problems as well my teeth are loose and l have now lost a few even though l regularly see a hygienist and a dentist. Do you see a rheumatologist if not you need to! I always have a sore tongue and have to be careful what l eat as anything acidic causes ulcers. I drink lots of water which seems to help also a rheumatologist should be able to prescribe a gel or spray that will help ease discomfort. There is a sjogrens forum which l would recommend you join. Best wishes
I was diagnosed with lichen planus and prescribed Betamethasone mouth wash for flare ups - I found it very effective - has this been considered? Also recent diagnosis of scleroderma- worth getting a Rheumatologist to check?
Eating used to be my favourite pastime but now there are so many things that are no longer pleasurable 😱
That must all be so painful and debilitating for you. I have a burning tongue which is always busy making my mouth dry and sore also have dry eyes and throat more so at night.
Like you I have researched quite a bit, and whilst Dr. Google may not be ideal the following links are from respected sources.
hopkinssjogrens.org/disease...
Also: mayoclinic.org/diseases-con...
Currently I am sucking sugarless pastilles at night and have to use vaseline lip balm to stop lips drying out (not just a winter thing). All foods have to be slightly moist, for instance soups are easy but toast is a challenge and I no longer enjoy a curry.
With access to morphine it is easy to understand that your case is advanced and frustrating that there is nothing to help you from a medical standpoint. Just an idea but if you drink tea and coffee both have caffeine which I have learned has a drying effect possibly because of its diuretic properties. May even be worth looking at your Patient Information Leaflets (PIL) to see if any particular medication has a drying effect or have a chat with the pharmacist. Also have your vitamins and minerals been checked? Lack of vitamins A D E & K are all known to PBC patients and all play a part in keeping the body in balance.
There are also various chat groups on Facebook which can be useful just for chatting.
I sincerely hope some of the above will aid your research and give some ideas to help relieve your pain. best wishes
My PBC was diagnosed in 200O and I have coped well with that . Sjogren`s was diagnosed in 2014 after a bad mouth episode but didn`t bother me at all until last year. I have just finished antibiotics for a flare up in my parotid which meant swallowing was painful. I had years at the Eastman dental hosptal in London for gum disease but lost the teeth anyway and had 2 implants there. I have just had 3 implants done so losing teeth is a big problem with these diseases. I have joined Sjogren`s UK and found a local group which has been going over 10 years. I am the only one with PBC , others have rheumatology problems and one has lung problems. They have helped the most telling me about Biotine toothpaste that doesn`t burn, and suggested some kind of melts to put in your mouth (but I prefered water) and other ideas that worked for them. But it was so good to talk to people who understood what you were saying.I saw Professor Bowmen at QE Birmingham but really found out nothing new. Keep your mouth hydrated seems to be the call. There is a medicine you can try but with side effects, I was not tempted. When I last saw my Sjogren`s group I said I felt a fraud as I had no symptoms since I last saw them. I should have kept my mouth shut!
Thanks for reply. I drink 2 and a half ltrs of water with ice daily. So hydration not a problem. Apparently everything I get is rare. To me that means no solution so rare is a dirty word, I have aides eye syndrome . Rare . So I have to have it in both eyes. Yes you get the odd autoimmune diseases with PBC, but no I have to be super rare and have six other diseases. I am the most positive person you could meet but it’s all wearing thin. The response I’ve had has been fantastic. Got to look into a couple . Like you I lost my lovely teeth, that was very distressing, also lost my lovely thick long locks pluse all muscles. Not a pretty sight. But hey I have my man and his eyesight isn’t fantastic. Sorted. Got to laugh or you’d cry. I don’t do depression I do anger and at time my language is choice my way of coping. You seem to have a sense of humour. I like that
new monoclonal antibody treatment given fast track approval just this year you could ask your Dr about this.
jnj.com/media-center/press-...
Funny enough I researched Rituximab which is a monoclonal antibody cost over 10 thousand pounds . If I can get research results that stack up I will pay for it if nhs wouldn’t fund it. Thanks for taking the time to research and reply. Will keep you posted
Check to see if they’re doing any phase 4 or other studies with it in area where you can travel to. That can be a good way to get access to early treatments.
Hi, I get a dry mouth especially at night. My dentist did some research recommended Xylimelts tablets that I press between my top lip and gum at night. He also recommended Gengigel toothpaste which makes my mouth feel lovely, at least for a while. There is some gel you can use, also saliva tablets (sounds yucky) and spray. I hope you find something that works for you
thank you so much for suggestions
Dry mouth
I was diagnosed with PBC some eight weeks ago so finding this Forum very interesting.
Mouth ulcers
Burning/tingling mouth & throat.
Heavy Metal Mouth
