I've had Sjogrens since interferon treatment 10 years ago and recently needed a troublesome parotid gland removed due to unidentified lumps and chronic pain and swelling.
Am awaiting biopsy results, I've previously had mediastinal lymphoma.
I was also recommenced on low dose hydroxychloroquine in an effort to slow the systemic symptoms and preserve the other salivary glands.
Anyone find hydroxychloroquine useful for slowing progression?
Anyone experience of parotid removals?
Thanks.
PS I'm in the UK so hope it is OK to post as you are the only Sjogrens Group on Health Unlocked.
Written by
MajorTom
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Hi there, I hope you are recovering after your surgery. I have problems with parotid gland , had scan and it was found to be quite damaged , i didn’t require surgery, but i need to massage my face every day as the my face swells and gets quite painful. My lymph nodes all became very enlarged before I got diagnosed with Sjögrens. I started on plaquenil but it made little difference, the rheumy recommended rituximab and it has really helped, my joints and muscles are not as sore and the lymph nodes swelling has reduced.
I hope the plaquenil mades a difference and you start to feel better, best wishes 😀
Glad the rituximab is working for you and sorry to hear of the pain you have. It can be really difficult to deal with, I hope it resolves somewhat for you. Can I ask how often you have the rituximab?
I tried to get on the UK trial for it as we know it works for me as it's the standard treatment for lymphoma (I had a good year after treatment) but sadly it's not approved in the UK for Sjogrens.
I have infusions every 6 months and i live in the north of Ireland so im also under the NHS . Maybe it depends where you live in the uk , but my consultant got approval relatively quickly 2 years ago . It might be worth checking with your rheumatologist again if this treatment is appropriate and available to you . Best wishes 🤞🏻
Hi. I saw your post and am in UK also. I’m having problems with parotid swelling and having lumps monitored. I have taken hydroxychloriquine for about 12 years and also pilocarpine. Pilocarpine helps with the oral dryness. Do you know about the British Sjogrens Syndrome Association BSSA. They have a quarterly magazine and also a helpline.
Hi, sorry to hear you are having problems. Do you feel like you have benefited from the hydroxychloroquine? I can't take pilocarpine unfortunately due to another condition. y I used to go to the BSSA Liverpool meeting some time ago when I was better at travelling but haven't been a member for a while.
I have been taking pilocarpine for several years and it's not really helping. I went online to see if there's any other meds that serve the same purpose. I found a drug called Cevimeline. I see my rheumatologist this week and hopefully will be able to try. Maybe this would work for you?
This disease has so many symptoms and here in the US, we have few doctor's who know how to treat.
I will let you know if I can try the replacement for pilocarpine and if it helps.
I was in the rituximab Tractiss trial and felt much better and had a noticeable improvement in saliva. Don’t know if I was on rituximab but Rheumy said it had not had significant results so wasn’t going to be available. I suggested if it wasn’t the rituximab maybe it was the course of steroids. I’d be happy to do a trial with steroids as I felt so much better
I saw Professor Bowman for TRACTISS but couldn't take part because of cancer and Hashimotos. So disappointed it didn't include people like me with systemic symptoms who can't take many of the other standard meds. I feel great on steroids initially but lose muscle so quickly I was in a wheelchair last time, so not really an option now.
I couldn’t take part in more recent trial either due to being seronegative (negative anti-Ro but lip biopsy positive) and having Hashimoto’s. I don’t really understand why trials are limited to only those who are seropositive when the EULAR diagnostic criteria includes lip biopsy?
Having attacked my peripheral nervous system for years mine seems to now be attacking my digestive tract, pancreas and kidneys and I was initially diagnosed as RA - although I have no more inflammatory arthritis these days.
Rituximab is often used to treat Malt Lymphoma so it makes no sense to me that they can’t trial it?
Perhaps most of those who qualify for trials don’t have the systemic involvement since there are so many exclusion factors?
Sorry to hear you are struggling and agree the inclusion criteria are too narrow for many of us. I hope the New Year brings some better options for us all.
I am also in the U.K., I have had trouble with my parotid glands too, I tend to get infections in both sides at least 3 times a year and my right gland is always enlarged due to cyst, it has been observed and as it doesn't give me major trouble they have decided to leave it for now, I have been on hydroxychloroquin for 10 years but have in the last month started methotrexate as my joint pain was getting so bad, so will see how this pans out for the the whole disease in general. All I can say is the hydroxychloroquin worked for a good 10 years but you have a different history with the lymphoma so a bit like me you have to wait and see what works for you, wish you all the best for your health and a happy Christmas to you x🎄
Hi Sacha, I hope you find some relief with the methotrexate and glad to hear you got good mileage from the hydroxychloroquine. My concern is it affecting my eyesight but I'm under regular review with ophthalmology.
And thank you for your kind wishes - a happy Christmas to you too!
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