Sjogrens Disease

[Dynamic63]

I start Rituximab infusions today as my Sjogrens has become severe- I have lost 9 teeth over 15 months and can’t have implants as bones have shrunk - terrified!

[weathervane]

I hope all goes well for you today. Ive been receiving rituximab for several years now and it has made a real difference to my life. I don’t know if it will help with your dental problems. I use a high floride toothpaste prescribed by dentist, i see hygienist regularly and use biotene gel at night. I avoid crusty bread , chew gum as it has pulled out fillings and anything really chewy.

You might be very tired and achy after rituximab, i get it at a slow rate as can cope easier and have less side effects.

Best wishes and stay safe xx

[Galaxy2]

Hi ThereI hope it has gone well for you, I have been having rituximab for a few years too and it has helped me so much. I do feel for you, losing teeth, must be very distressing and not being able to have implants either.

I do hope it helps you and makes a real difference to your symptoms

[harmony2 in reply to Galaxy2]

Hello Galaxy2 May I ask what country you live in? If you live in the UK, how did you get it approved as my rheumatologist keeps saying there is nothing evidence-based that we can use. He has hinted that I could go to a regional University Hospital if things get worse. Things have been getting worse for 18 years but I cannot get an appointment!!!

[Froogle in reply to harmony2]

Hi - I live in the UK (in Scotland now) and despite being really proud of our NHS I've never really had the help I need with Primary Sjogren's. Every few years I get sent to see a rheumatologist. I knew far more about the subject than the last one I saw, who seems to view the disease as nothing more than a 'nuisance'! We could really do with a Sjogren's centre in the UK.

[harmony2 in reply to Froogle]

Thank you for your reply. May I ask how you were able to get rituximab? Or did I get my wires crossed?

[ATVMWF]

HI Dynamic63, Sorry to hear about all your dental problems, how absolutely awful for you.

I haven't got experience of Rituximab, just HCQ for fatigue and joint pain, so cannot advise on that. I have had issues with losing teeth despite all my best efforts to keep on top of the dental side of things. I am prescribed high flouride toothpaste which I use twice daily. Clearly, if you have lost that amount of teeth in such a short amount of time you require intensive treatment. the dental surgeons and rheumatologists need to review yur whole treatment regime.

I am sending big hugs to you as it must be so worrying

ATVMWF

❤️❤️❤️

[Stumpy01 in reply to ATVMWF]

Hi lovely , what is HCQ? I live in Australia and have Sjogrens and fibromyalgia for the last 20 years. I am on methotrexate

[ATVMWF in reply to Stumpy01]

HI Stumpy01, HCQ is hydroxychloroquine. It was a drug developed to protect from Malaria and they found that it assisted with fatigue in Sjogrens and R.A. patients. I think it is the first line of treatment for SS patients, not that there are many options available, we could certainly do with the drug companies investing time and effort into finding more, for sure. ATVMWF

[harmony2 in reply to ATVMWF]

ATVMWF

I fully agree with your feedback for Dynamic63

I would definitely take the infusion. I really don’t think the medical professionals know how much inflammation is going on in MANY systems of our bodies OR the domino effects (Such as you’re referring to hear the dry mouth affecting our teeth and gums. Also Dentists now have research evidence that oral health affects our physiology in other ways.)

Like @ATVMWF

I work super hard to keep my teeth healthy and my gums healthy but the dryness makes my mouth so unhappy— soft tissue and teeth! Plus extra dental care is so expensive. Plus my sore mouth could never tolerate dentures so implants will have to be the way. Of leave gaps but then the other teeth shift. This is a great example of a massive “domino effect” pattern! Phew!

Right Please will you tell us how you did with your first infusion? I notice it’s been a month since you wrote your question.

[harmony2]

Hi Dynamic63 I’m interested, if you are okay to share, was it because because of RA (not because of Sjogren’s Syndrome) that you were you able to get the rituximab? Right now I do hope and pray that you are getting some symptom relief and it progresses over the coming months.