Sjogren's Syndrome.

Is there anyone with this same chronic illness, Sjogren's Syndrome, living in Perth, Western Australia? Interested in forming a support group, getting together for support and fun outings, regular meetings.

[adleybra]

Hi, yes I live in W.A. But in the Country. I am in my 70's now and have been gradually getting worse.I am happy to chat on line, but at the present I am not able to get about very much. It does sound a very good idea, nothing like chatting to girls in the same boat.

[Aim4Health in reply to adleybra]

Hi Adleybra,

I am 45 and was diagnosed last year, though in hindsight suspect that I have had for 10 years or more. I would be interested to know in what way you have gradually been getting worse. At times I am fearful of what lies ahead, particularly as I seem to have some neurological involvement. Would you be kind enough to share more about your ailments/ your story. Thanks very much.

I am in Melbourne.

[HopefulCC in reply to Aim4Health]

Hi there, I'm new to this site and hope I'm not being cheeky replying as I'm still awaiting official diagnosis! Have had a mirage of SS symptoms for many years but finally insisted on further investigation to clarify. Bloods have come back with mixed findings. Had MRI this week for unexplained muscle/ joint pain, am having lip biopsy next week (actually bit nervous about this) am surviving on Biotene products for dry mouth and lubricating drops for eyes. Using heaps of lip balm too. Fatigue and brain fog are getting me down and although I'm only working part time am finding it increasingly more difficult to get there and function at an acceptable level. Over past year have had blood sugars done for what GP thought was diabetes due to numbness burning sensation in feet - came back clear. Bloods checking hormonal levels for menopause due to vaginal dryness - came back clear. Have been on diuretics due to swelling - well just increased general dryness. I'm about to turn 50 & live in Melbourne & would greatly appreciate any info on what to expect, especially re the lip biopsy. Thanks so much for letting me share my journey so far.

[valeried in reply to Aim4Health]

Hi I have symptoms of primary SS but bloods are clear. Don't see point of having lip biopsy as is only positive in 50% of cases. Have terrible dry eyes and mouth, joint pain and tight pelvic floor muscles as well as cough and some reflux and mildly elevated liver function and fatigue/brain fog. All this since hysterectomy in Nov 2013 with post op infection. Totally normal and healthy prior to this. Rheumatologist I saw said I didn't have SS as bloods were clear and had no idea what was wrong. No one seems to be able to help me and it is very depressing. Anyone know of a good Rheumatologist in Melbourne who actually knows about SS?

[marj65 in reply to valeried]

hi valerie..your story is a mirror image of mine right down to the post op infection..i was shunted by a rheumatologist around 5 yrs ago and have been languishing from dr to dr in the mean time..i have recently seen an immunologist and am having excellent progress with him..unfortunately i am in sydney but it mite pay for u to try an immunologist for a diagnosis/treatment..hope this helps

[Xxxxxxx]

I'm newly diagnosed and in Tasmania. Not that will help you but happy to talk

[Jlog]

I'm in Perth, WA. Learning more and getting together could be useful (I love how the US association is so active!). I'd be interested in how you get on organising this.

I'm 36 and was only diagnosed about 10 months ago although I think I've had it for a while.

[adleybra]

Hi Aim4Health,

I have had lots of problems dry mouth, eyes ,skin,lips,HUGE fatigue,ears going on for probably 15 years. Only when I retired did I have the time and a G.P. Who actually checked the bloods . An earlier G.P. When I questioned a note mentioning Sjogren's'

dismissed it entirely. Every day there seems to be something else that is a problem. I see the Specialist next Friday and he has been to a Conference I'll see what is new. The brain fog seems to be a lot better since I went in Plaquenil 'tho I have to have eye checks. What used to be the norm a flare of this area or that and times when things settled down all areas seem to be on the go all the time! At one stage I went to a special test at Royal Perth Hosp for Dementia (I arranged it) the brain fog was so bad. (that was 10 years ago)They said I had no problems. How lucky! This was before I had been diagnosed with Sjogren's. A lot of my aches and pains I and the G.P.s (ever since I was 50 odd) put down to menopause or aging. Well enough of me hope that with research etc your time will be much better. Take care.

[Hidden]

Hi, I've had Sjogren's Syndrome for over 20 years now. I'm 60 and started with Primary and now have Secondary Sjogren's Syndrome. I go to Royal Perth Hospital Immunology Department 6 monthly for checkup and tests. I also go to Fremantle Hospital 6 monthly for arthritis of the toes, (the toes are curling up a bit now).

I started out in the 30's having allegies, then later on years of eye drops for allergy eyes, finally got dry mouth and the GP tested me for Sjogren's Syndrome and blood test came back positive. This was over a course of about 15 years or so. I now still have dry eyes, (bion tears eye drops), still have dry mouth (eclipse mints), have fatigue, dry nose and sinus (gel nasal drops), dry skin (Johnson lavender body wash), dry hair,scalp (baby shampoo, conditioning). My GP has just put me on Loxolate anti-depressant for low mood. Will see if I improve. Just started having bowel blockages, so have had to change diet to more vegetables and fruit, fish. Take Benefibre in my tea and Movicol if constipation is bad. Trying to work part time but my carer agency work has just died off so tossing up whether to do volunteer work in a shop or apply for permanent casual at local hostels/nursing homes. I like the casual work because days I'm not well I can say I'm not available that day.

As for starting a support group in Perth WA, I call WISH (Western Institute of Self Help) and they are willing to help with start up and training if anyone was interested. Anyone similar?

[adleybra]

Hello all, Well I saw the Rheumatologist today and I asked if there had been anything new for Sjogren's at the Conference and I felt from his reply that we probably were not discussed. One thing I have downloaded from Sjogren's Foundation a U.S.A. Self help booklet,it has quite a few really helpful ideas. Nothing in it tho' on throat and voice problems that are annoying me. Did your G.P. Put you onto the Immunology Dept? I'm thinking it may help me too.Thank goodness I can talk to people who are dealing with the same problems on line.My family and friends probably think I am a neurotic.My mouth is really the worst despite using the special toothpaste, mouthwash, chewing gum etc$$$ My lips look astho they have been burnt. You sound amazingly focused. Welll done The Support Group sounds a brilliant idea, but as I mentioned previously not living in the metropolitan area is a problem. Will see what eventuates Take care

[Hidden]

Hi adleybra, my GP referred me to Immunology Dept. at Royal Perth Hospital and I go there 6 monthly for checkups and to see what new symptoms I have at the time. Having a lung CT scan in a couple of months, a referral from Immunology Dept. at RPH. Then I'm on the waiting list for a Endoscopy referred by my GP. I have a good GP. I had to change my diet recently and just have fish, veges, and fruit and may not need to have the endoscopy because changing my diet has seemed to work and have started on antidepressants and am a lot more relaxed these days. I would like to talk to you as you are in WA too. Take care.

[Hidden]

Adleybra, I don't use the special toothpaste, mouthwash and gum because as you say it costs. I just use the enamel protection from acid toothpaste, drink water, take sugar free eclipse mints, and drink decaf coffee and tea and don't eat anything spicy and not a lot of tomatoes which I love. I recently increased my intake of Nexuim from 20mg to 40mg twice a day. I had bad reflux. That can cause dry hoarse throat. Hope it helps.

[Kamicazi]

I have just been diagnosed and yes I live in Perth and would love to know if you got the support group going??

[qazx]

I have Sjogrens and live in Perth. Please let me know if u started the support group as i wld like to join.

[adleybra]

hi folks, here I am again. I went to a new rheumatologist this week and I am hopeful that a different approach may be a help. I will keep you informed if things improve! My problem at the moment is aching teeth. The dentist tells me everything is fine. I have an aching jaw sometimes too. Always something to drive me mad! To Perth sufferers this VERY hot summer is annoying my lips and eyes and I guess we are all in the same boat. I am looking forward to cool weather, but then the Raynauds will be a problem again. I live in hope of a miracle.

so many probles but as one Dr said you won't die of it !!

[adleybra]

Hello fellow SS sufferers,especially Perthites!

At the moment things seem to have settled down a little (I hope this isn't asking for trouble) I think it is a combination of my new medications. I have Pilocarpine as a mouth spray, doesn't taste great but helps. Costs as I had to find a compounding chemist to make up the prescription that the specialist suggested. I also sent away for the xylimelts more cost, but I now get less interruptions during the night. Life is more livable. I think the Slightly cooler weather has helped as well.My biggest problem is constipation! This is something that usually is not a problem for me. On checking other SS sites I see it is reasonably common with SS.. Always something to make things uncomfortable..I hope that you are all managing to deal with what is life is serving out to you. .I am 77 and recently minded my grandsons at their home for 12 days. 16, 14, 11. It was a very exhausting as I had just had a really bad cold that had really set me back.When I returned home It took me a week of doing VERY little (sleeping mostly) to recover! Regards all.

[pgf54 in reply to adleybra]

Hello everyone, i have ss type symptoms and want to go to a rheumatologist that has experience with these issues, i am in country Wa but moving to Perth next month. Any suggestions appreciated. Paul

[jennye1967]

Hi

Did you get the support group started. I would definitely be interested if there is a group.

Cheers

Jenny1967

[kyliejade]

hi

I would be very interested in a support group. i live in perth wa.

cheers

kylie

[happyhappy60]

Hi everyone, I'm the one who talked of starting a support group but had personal problems and didn't start anything. Was moving house and housesitting for a year. Worried about accommodation at 61 years, was not very good.

The good thing is the Seminar for Sjogren's Syndrome. It's coming up next month, check out the Arthritis Foundation's website and book in. I think it's on the 27th, not sure, check the website and book in. Perhaps see you there. Should be informative.

[happyhappy60]

The Sjogren's Syndrome Seminar is with the Arthritis Foundation. It will be held at Shenton Park, WA, next month. See Arthritis Foundation website for details and booking. Costs nothing and should be informative.