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The Australian Sjögren's Syndrome Association
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Newly diagnosed need help from experienced people

I'm newly diagnosed with Sjorgens having symptoms like dry eyes, dry mouth, a lot of joint pain and swelling especially in my hands and inner elbows, legs and feet, and fatigue like Ive never felt before. My Dr prescribed Meloxicam daily when pain was bad which worked well, but then I started to have short momentary black outs. Has anyone else experienced this?

Id prefer to take minimal medication but need to work out a good balance so I can still be active and do normal daily things I used to do. Can anyone suggest medication or other things worth trying.

I live on the coast, but the recent heat has knocked me around a lot.

My family are very supportive but I feel like I'm constantly complaining about aching and feeling unwell.

Any suggestions about learning to manage Sjorgens would be greatly appreciated :)

6 Replies

Hi there , im sorry to hear that you are feeling so unwell . I was diagnosed just over a year ago , prior to that i was a mess and hardly fit to get out of bed because of pain and exhaustion. I eventually seen a rheumatologist and was initially started on plaquenil, i had some improvement in tiredness but was still v sore , my lymph nodes were also all enlarged. I then started lyrica which helped the muscle pain but not the joint pain . The rheumy then suggested rituximab which i had in April and again in January. I now able to cope much better my lymph node are reduced, the pain is under some control and i am able to cope usually with the tiredness . In fact my husband can see a great improvement. There are other issues with the dry eyes and mouth which im still looking to control bettter ! I don't know if this is of any help , you mentioned not want to use drugs, im afraid I felt so ill I would have done anything! I was also lucky that i have so been able to tolerate the meds suggested 😀


Thanks for that info I had really dry eyes and my optometrist referred to an eye specialist as I had kerititis as a result. They eye specialist put plugs in my tear ducts which helps keep what fluid there is in your eyes and drops etc, which has helped significantly and I use eye drops called optifresh plus as well. For the dry mouth I'm carrying water wherever I go and it's manageable and my diet and taste has changed significantly. I feel I can manage the eyes and mouth and throats dryness I'm just really struggling with the aches and fatigue I'll talk to my gp about what your using and see what they think I'm willing to try most things just don't like side effects thanks for taking the time to reply :)

1 like

Hi i have sjogrens , lupus and rhuematoid arthritus. I became a vegetarian and changed my diet. I am trying to keep the medication at a minimum. I take plaquenil and just started orencia by injection. Its really helped. I suffer from dry eye the most. For this i take xidra eye drops for eyes and i get a procedure called procrera every 3 months. Its a hassle but im maintaining. Hope u feel better


Thanks for sharing your experience


Just interested to know what's orencia?


Ive taken orencia as a injection one day a week and ive improved a lot. Its been great with my joint and muscle pain.


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