Newly diagnosed need help from experi... - The Australian Sj...

The Australian Sjögren's Syndrome Association

2,456 members786 posts

Newly diagnosed need help from experienced people

Janslade profile image
6 Replies

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 :)

Written by
Janslade profile image
Janslade
To view profiles and participate in discussions please or .
Read more about...
6 Replies
weathervane profile image
weathervane

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 😀

Janslade profile image
Janslade in reply to weathervane

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 :)

jaki1963 profile image
jaki1963

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

Janslade profile image
Janslade in reply to jaki1963

Thanks for sharing your experience

25clai profile image
25clai in reply to jaki1963

Just interested to know what's orencia?

jaki1963 profile image
jaki1963 in reply to 25clai

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

Not what you're looking for?

You may also like...

newly diagnosed with SS. i live in scotland uk

hi there everyone .,,i am new to joining this site and was recommended from someone else. i...

Newly diagnosed...

Hi, I do hope you all don't mind me joining you as I am in the UK but have recently been diagnosed...

Pain in hands / hips during night

Hi all, I've been having numbness / pain increasingly getting worse over the last few months, it...

1st Appointment with Rheumatologist is next week, Any Advice?

Hi all, I'm in the UK and I have my 1st appointment with a Rheumatologist next week. I gather than...

Does anyone with sjrogrens get red, sore eyes like this?..

Hello everyone! I constantly have dry, gritty, light sensitive eyes and over the summer had blood...