Sjogrens syndrome

[ScoobyMootoo]

I've been diagnosed with this just recently. I'm trying to educate myself as much as possible as I have a few decisions to make.

I'm really worried about how my symptoms will progress. I'm in my mid 30's and I'm already struggling. I've dry eyes, mouth, nose, vagina. Pain in my hands, tiredness and bowel issues.

Need to decide if I want to try that malaria medication that my consultant suggested before I next see her. Also consultant suggested having my tear ducts plugged as my eyes are terribly dry.

I'm petrified about the increased risk of lymphoma too.

Has anyone else been through these things? Any advice? I've so many questions that I didn't think to ask at the appointment but there was such a lot to take in. Thank you.

I have a slight variation called mixed connective tissue disease and have been taking Hydroxychloroquine ( the anti malarial) for 13 years. I use sustain to keep my eyes moist, take naproxen for the pain and also take a multivitamin.

I was diagnosed with this alongside RA about a year agoz. I take the same meds as lonecat. Tbh my rheumatologist must be a bit shit as she only ever mentioned dry skin, eyes etc... none of the other stuff you’ve mentioned! I must do some reading on it.

Get a notebook a write down questions as you think of them. At next appt make sure to take notes so you don’t miss anything

Your consultant was right to mentioned the increased risk of lymphoma, but it is still a slightly increased risk.
Mixed connective tissue disease carries an increased risk of chronic renal failure, pleurisy and various other things, but consultant advised me that they are extremely rare and I was more likely to make myself worrying about them than I was to get them.

Thanks for your replies. Those of you that take hydroxychloquine, does it have any side affects that bother you? My symptoms are a lot worse at night. The eye drops help but don't last long. Can you recommend any that are good?

It's been suggested that I get my tear ducts plugged. Anyone had this and did it help? Thanks again.

I have secondary Sjogrens, sorry to hear you are suffering scooby. Do you know if yours is primary or secondary?

My mouth problems are worse than my eyes atm but eye advice I have been given was to use drops or gel without preservatives and the ones containing oil are best for lubrication. (I can't remember brands but your ophthalmologist will know I'm sure). I think for severe inflammation they can prescribe ones with steroids too. I think there are also drops which contain an immune suppressant?

I haven't had the plugs or the hydro due to other issues but a few things that have helped me have been one of those electric oil diffusers (you don't need the oil!) with steam projected out into the room. Also wearing sunglasses whenever I can and put a damp flannel over my eyes a couple of times a day.

For dry mouth have they talked about artificial saliva? I really struggle with ulcers and terribly dry cracked painful lips and have tried every single lip balm and cream out there I think! For me a thin layer of Aveeno on the lips at bedtime is the best, and good old Vaseline in the day. I found I was drinking so much water I was in the bathroom all the time so chewing gum is also useful.

The tiredness is awful and I haven't got any "tips" for that except try and get as much sleep as you can, 10 hours is better than 8 for me but I never manage to get this normally! Naps also recommended

Is your consultant a rheumatologist? If so they may have a nurse helpline like mine does, so if you think of any questions or have any worries you can phone them anytime. Your consultant should also have suggestions for joint pain, I have steroid injections into the worst joints every three months and they do help. I try and exercise them as much as I can to keep them moving.

Also arthritis and lupus societies/websites usually have good information about Sjogrens.

It is worth googling 'spoon theory' until I read this I used to force myself to do everything just because I felt I shouldn't give in.
Tonight I am trying to decide whether I use a spoon to go to choir which is amazing for my mental health and to see my friends. Or save the spoon in case I need it for work tomorrow.
I take Hydroxychloroquine my life would be impossible without it, I am currently maxed out on Naproxen and I am seeing the doctor on Thursday and I am going to discuss Gabapentin and Pregabalin. As I have a sort of mixed version of Fibro and mixed connective tissue disease ( a version of sjogrens) currently the fibro side is giving me most problems. Fortunately my rheumatologist is less concerned about the name of my condition and more concerned and controlling the symptoms.