Hi everyone, a good few weeks ago I went to see my GP about a lump in my neck just under my jaw, he told me that he thought it is sjogrens, he then referred me to an ENT specialist. When I saw him he said " I will tell you now that it is not cancer but I don't know what it is" I mentioned that my GP thought it could be sjogrens. He then said " there is no such thing, as it is a syndrome and therefore not a medical condition" He then told me he was sending me for a barium swallow and a CT aspiration. Well today I went for the CT and the Dr told me that it was defiantly sjogrens as I have dry eyes and dry mouth and she could see the saliva glands were affected. So what I am really asking you good people what do you think will happen next, and will it mean that I will have to take more dreaded tablets. I am on HYDRO 200 mg LEFLUNOMIDE 10 mg MTX 20 mg injected Folic acid 6 days plus many others for lots of different things. I have read other posts and know other people have sjogrens and would love some feed back. Thankyou for reading. Look forward to hearing from anyone who will help me sort this out. X

10 Replies

  • Lol well the Sjogrens society and my consultant and GP all told me I have it!! Go to another go who understands your illness!

  • Hi diddydriver

    I have sjogrens and i would advise you go ask your gp to refere you to a rheumatologist immediately for a full assessment . A specialist will be able to explain the condition fully and advise you on any treatment that is required. Good luck and i hope you find a doctor who knows what he is talking about this time😀😀

  • Thankyou weathervane for your speedy reply. I do have a rheumatologist and team who are looking after my RD very well at present. I never thought to mention to RD team about my GP thinking I had sjogrens I hope I don't have to see the ENT consultant again as I don't really have any faith in him at all.

  • It was a dental surgeon who was involved in my diagnosis , i was refered to him as had swelling round jaw which was a blocked salivary gland , things developed after that as lymph nodes all became enlarged . This isnt always the case it is just the course that the condition is going with me. I hope you you get things under control 🙂

  • Here is a link to information on arthritis research uk's website that you may find helpful. .

  • Yeah - Sjogrens is a real condition. I have it too. They diagnosed it as secondary, but actually I have had the symptoms for much longer than the RA. I use Pilocarpine HCL 2 - 3 times a day to keep everything moistened, and it works pretty well.

    I used to get sores inside my nose (for years) and no one could tell me why. When I started the Pilocarpine, they went totally away, and the thick phlegm in my throat thinned out.

    I hope they get you started on some treatment. Just be sure you put in eye drops several times a day, and maybe consider doing an oil pull every day to help with the dryness in your mouth. Best of luck there

  • I have (or had) nodules in my throat that are apparently symptomatic of Sjogrens - or at least that was the diagnosis via ultrasound. Sjogrens just generally means you're dry, like, internally & everywhere. There's no real drug treatment for Sjogrens, so they suggest you take eye drops, nose sprays, and lube when/if you need it. That's about it. Though if anyone gets specific treatment, I'd love to know. Thanks for your post! :)

  • A big thanks to every who has replied or liked my post. It seems to me that I have to just get on with yet another condition that there is no cure for. Ugh. I am so sick of being sick. Along with being a full time carer for my hubby ( whom has dementia ) and having RD and now sjogrens with other problems as well I am finding things hard at the moment, but hey ho I am going to jersey next Sunday for a welcome break. Let's hope the weather stays sunny . Thankyou all, have a good day. X

  • Have a lovely time x

  • Thanks Allanah x

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