Help

[Loucious]

Hi

I have just been diagnosed with Sjogrens.

I didn't know anything about it.

My name is Linda. I live at Upper Coomera on the Goldcoast. I would love to hear from anyone. Thanks.

[jlat]

Hi Linda, this is a great forum for information ,I am recently diagnosed also and are not much help to you ,but there is so many very knowledgeable people here, If you ask any questions specifically then there will bound to be someone who can help, it is such a relief to be with people who understand ,all the best Jlat

[Loucious in reply to jlat]

Thank you for your reply. It's a bit of a worry when your first diagnosed. 👍😜

[Hidden]

Hi - I was recently diagnosed too but I was relieved after years of being wrongly diagnosed with a closely related autoimmune disease, Rheumatoid Arthritis.

I live in Scotland but I believe Sjogrens affects people in about the same distribution per head of pollution all over the world.

The most recent edition of the Daniel J Wallace's The Sjogrens Book published by Oxford is an excellent read if you want to learn more.

Take care and keep asking questions here.

Twitchy

[Ruth59]

Lots of info on the 12 video modules on the top of the screen, also on utube.

[Beverly]

Hi Linda, I am at Murwillumbah, I can answer any questions you have, I have 3 stage Sjogren's so I have been through everything that you could possibly get. If you go to our website sjogrens.org.au and our Sjogren's Facebook group is good as well.

[jlat in reply to Beverly]

Hi Linda,i didn't know that they even staged DD ,what are the stages etc? if you don't mind sharing,for warned is for armed etc

[Loucious in reply to jlat]

Sorry I don't know anything about stages. I am new to all this. Still learning all about it . 😀

[jlat in reply to Beverly]

Hi Linda,i didn't know that they even staged DD ,what are the stages etc? if you don't mind sharing,for warned is for armed etc

[wsjkcj1]

Hi Linda,

I live in the US but find this forum very helpful. I've been diagnosed with Sjogren's for 2 years but had symptoms much longer. What symptoms or other conditions do you have now?

[milkwoman]

Welcome Linda!

I am in the USA. I was diagnosed 2 1/2 years ago. I also have lupus. Sjogrens is different for everyone. For me, it affects my eyes the most. They get very, very dry and irritated. I use preservative-free drops during the day (Systane Ultra) and a soothing gel at night. Sometimes I get awful headaches from my dry eyes.

I also get dry mouth but not as bad as most here. I use Biotene products (mouth rinse and mouth gel). I do have to be VERY careful about any kind of sore or burn to my mouth. If I get a cut or wound it will become very bad and last a long time. My dentist knows I have Sjogrens and they are careful when working on me.

Sjogrens also affects joints. Since I also have lupus I never really know which autoimmune disease is flaring. I've been on hydroxychloroquine since being diagnosed. I have to take the name brand Plaquenil because I cannot tolerate the generic alternatives. Plaquenil has helped tremendously. I also exercise regularly to keep my joints loose.

With Sjogrens, I have to stay out of the sunshine as it can cause tremendous fatigue. Plaquenil also makes one sensitive to the sun.

Have you been prescribed hydroxychloroquine? If you have, you will need to see an ophthalmologist and have your eyes tested. I go every six months to make sure the meds are not affecting my vision. So far so good.

Sjogrens affects (mostly) any areas of the body that involves mucus membranes. So eyes,ouch, nose, throat, vagina. Some people get awful sores - I've been fairly lucky in that sores haven't been a huge issue for me BUT it doesn't mean I have not experienced them. I do all I can to prevent them from occurring.

As I began with, Sjogrens affects my eyes more than anything. The dryness can cause my meibomian glands to become clogged which can lead to blepharitis (eyelid irritation). So I use drops specifically for this (Retaine MGD drops) and also, use a hot compress to soften the blocked oil and express the glands (after the compress I simply run my finger over the eyelid from the inside to the outer edge). If I do this once a week my eyes feel much better. (The drops I use daily). The best nighttime gel I have found is Genteal Lubricant Eye Gel (Severe Eye Relief). I like that it is cooling and just sort of "melts" into the eye and coats it. It isn't as thick and goopy as other gels.

I hope this helps.

[Loucious in reply to milkwoman]

Thanks ever so much for your reply. Sorry you seem to be going through it. I am a bit over whelmed at present with the diagnosis. Early days for me.

It's good to have a site like this and lovely people on it.

Thanks for your help 👍😀

[25clai in reply to Loucious]

Hi Loucious,

I too am recently diagnosed, I have been battling various health problems for many years, and became really ill 18 months ago. Initially with my diagnosis, I was so relieved I was diagnosed, I didn't think too much more than feeling pleased I had got an end result after all, which explained some of my many symptoms . However, I too feel overwhelmed at times by it all. Fortunately this site , helps me when I am feeling alone with my symptons. My immediate family try to be understanding, but it's not the same as other people going through similar symptons, negotiating their way through the medical world .

I used to be highly active, with 2 jobs and family etc, but that's changed now and there's a lot more time to think, trying to concentrate on what I can do , rather than what I can't, and have various aims / challenges, helps me through, keeping my sanity, in between the regular trips to docs/ hospitals.

I should mention I am based in UK - no sites like this for SS in our hemisphere!!

[Space99]

I have had Sjogrens for about 10 years. Went to QUT dry eye clinic (Optometry students and free!) Julie Albietz was so helpful. She is also in a private practice. Part of the regime was Manuka Honey in a medical form. Have a dental tray with Tooth Mousse Plus at night. Took awhile to kick in but is reducing some of the dental bills. I discovered Oral 7 mouth wash. I have Xyliimints from my dentist (with a Wickham Terrace address) There is a Sjogrens Syndrome Foundation that you may get some information from. The Schleroderma support group meets I think at the Tallebudgera Surf club. You can get a sample of Xylimelts for $5 posted. I am Everton Hills Brisbane.

All the best.❤️💛💚💙💜

[Loucious in reply to Space99]

Thanks very much for info . Much appreciated. 👍💕❤️