Hi I am a seronegative Sjogrens sufferer from Auckland, NZ seeking support from fellow Sjoggies. The NZ Sjogrens support group seems to be out of action so no help there.
Anyone from NZ out there?! Would love to make contact and share info.
Regards
Deirdre
Hi, love to chat - Im from England, I have secondary sjogrens - we dont have a forum in the UK, so I joined this group. Full of lovely people sharing their experience and knowledge. X
Hi Holly. Thanks so much for replying. I am originally from Brighton so an English kiwi. I am 71 and been grappling with this for around 4 years. Very surprised there isn't a Sjogrens forum in U.K.! I am considered a medical mystery here and been thru the mill with so many specialists. Sjogrens is the current diagnosis with only right eye positive on Schirmers test and lip biopsy also rather inconclusive due to too few salivary glands in the lip biopsy. Just had nerve conduction result showing polyneuropathy. My main problems are sicca and debilitating pain in both feet which restricts walking quite badly. The dry mouth affects my speech, eating and swallowing. Etc etc. I am sure you have heard all this before 😏.
My primary is antiphosilipid syndrome, many of us with autoimmune problems have trio of syndromes and spend many years going round specialists, sometimes to no avail. My SS effects my mouth, throat and eyes with pain in both hips. Sounds like youve found someone more local...
Im originally from Hertfordshire but now live in Devon. I was diagnosed about 10 years ago, excuse the brain fog, dates just pass me by.
Devon is a lovely place to live. I'm sorry to hear you have a primary syndrome to cope with also. Have you found anything that helps the dryness and pain? Most meds make me feel a lot worse!
I had Graves' disease 40 years ago and never really recovered. I now suspect SS has been hanging around for many years as part of the autoimmune attack.
Yes I have got a local respondent and will be keen to know what medical support she has found here.
Coming into evening here now so I will leave you in peace. Take care.
I take eye drops and saliver spray for eyes & mouth. Hydroxychloroquine 400g for my hips. These are ok routinely but dont stop or help when get flare ups.
Last Sept started taking low dose naltrexone (LDN) for thoractic outlet syndrome, which really helped but even more greatly benefited the sjrogrens, probably by 60% improvement. Now feel a bit more in control especially with less flare ups.
Hi,
I'm a pommie Kiwi too, originally from Nottingham then lived in Auckland's North Shore for 22 years, now in Brisbane. Have you seen Dr Terry Macedonia in Remuera. He's suppose to be quite a good Rheumatologist I heard.
Hi Deirdre, I'm in Auckland too. Have had sjogrens for only a short time...but joined this group a year ago for help and information which was very appreciated at the time having no idea about the condition. Happy to chat and share the little I know. Cheers Wendy
Kia Ora Wendy! Great to hear from you. Wonder if we shiuld chat by email as could get a bit lengthy? 😉
My email is dbillicol@gmail.com.
Kia ora Deirdre! I'm in Auckland, moved here from Oz (Sydney) 3 months ago. My new GP here didn't know what I was talking about when I told her I had Sjögren's! She has, at my request, referred me to an immunologist here in Auckland, seeing her next Tuesday. I have had debilitating chronic dry eye disease (with chronic blepharospasm) for the past 3 years. I've had my tear ducts fused, used Restasis, every treatment under the sun. I've seen an ophthalmologist here in Auckland who treated me with azithromycin, methylprednisolone drops and autologous blood serum eye drops and I have to say my eyes are almost completely normal (but still dry because my lacrimal glands no longer exist) . For the first time in 3 years I can now drive my car and go out in public by myself! Hopefully next I can get the immunologist to check out my peripheral neuropathy and other issues. I've been on this forum for over a year and it's been the best help I have had - doctors don't really want to deal with it and put it in the too hard basket. My email is jo.vanhattum@yahoo.com.au if you want to chat more! cheers Jo
Kia Ora Jo! Lovely to hear from you. Yes know exactly what you mean about the blank looks for Sjogrens 🙄. I have emailed you as keen to know name of Immunologist you have been referred to. Sjogrens specialists are usually Rheumatologists so I am intrigued and hopeful 😋.
Best wishes
Deirdre
Hi Deirdre, Dr Marianne Empson, I don't know anything about her other than what's on her website healthpoint.co.nz/private/a.... (Interestingly nothing on the site refers to Sjögren's!) on referral from GP so I will have to let you know lol!
Yes please let me know how you go with her on Tuesday. She seems to be Lupus expert which may be close enough. Good luck!
There's a few Rhuemotogists at Healthpoint that have an interest in Sjogrens. I used to work at Auckland & Greenlane hospitals.
Hope you get some answers
Thanks! Not sure I need a rheumy though as I don't have much RA symptoms (just chronic sicca) and my RA antibodies disappeared about two years ago? These days I seem to have more lupus symptoms with positive ANA but no SSA SSB? I'm confused lol!
Rheumatologists treat autoimmune diseases like Lupus and Sjogrens etc. Dr Terry Macedo in Remuera specialises in those. Look him up online or ask your GP for referral to Rheumo in public system. I don't think your Immunologist is the right person from reading her details online. Don't waste your money on wrong specialists 😩
Hi Deirdre. I'm in CHCH. I'm 41 and was diagnosed with SS when i was 30. I won't be much help talking about the meds because apart from mints, moisturiser and eyedrops, I haven't taken any. This was due to how I already had epilepsy and was taking meds for that, and having had some pretty bad experiences with different meds, decided to keep them to the absolute minimum.
Hi Graham. Thanks for responding. Yes I can empathise as most meds make me feel a lot worse and I am trying a naturopathic approach including EFA and ALA at the moment. I find good old Airwaves gum the most helpful for dry mouth. Pain relief is the biggest challenge for the polyneuropathy as I can't tolerate anything except Panadol which doesn't really help. Hope you are enjoying watching the rugby as much as us! 😊
I have eclipse mints a lot, but my preference is xylitol mints/gum which I buy from Annies, when i can afford it. Most of these store brand contain Aspartame which has been controversial (healthline.com/health/aspar..., but is probably the most powerful sugarfree sweetener. Stevia herb is good, and I also use Natvia sweetener tablets, which can be found in the baking section at the supermarket. Herbs like peppermint/spearmint and licorice can be effective. The thing I've found out about Sjogrens is that for some things there just isn't a perfect answer, so you have to go with your own preference.
Welcome I'm new here too and from the USA! I have secondary Sjogrens as I do have Hughes Syndrome/APS! Plus RA it usually comes in trios!!! I lost my left leg to undiagnosed Hughes Syndrome!!! The swallowing and burning tongue drive me crazy!!! I'm on no meds for it, but a mouthwash as I do have mouth sores for months now and wonder if I need to be biopsies! They won't go away!!! Do u have allergies or something that triggeres a flare up??? I find that many people who have Sjogrens have allergies??? GODSPEED
Thanks for this. You have certainly bn thru the mill, my sympathies.
No allergies but I do get a lot of rhinosinusitis issues and had surgery for that last year with little improvement.
I am trying essential fatty acid and alpha lipoic acid supplements plus multi vitamins and probiotics No obvious change with them
I find sugar free gum the most helpful for dry mouth. I use Systane eye drops which are ok but my eyes are not my main problem and I can cope with them
I stopped Stevia after reading possible side effects. My Wrigley sugar free Airwaves gum seems to help both nasal and mouth issues.
I have to be cautious with Peppermint as it can irritate GERD.
Best wishes
Deirdre
Wow does everyone with Sjogrens have GERD! And allergies! I use to get something called Fanthomsmia/Fanthom Smells!!! Lol.... I'd walk into a store with my neice and smell gas and scare ever! My neice wud tell me it's me! Weird! It lasted a while left and comes back and I never know if it's real or not! I hate gum so won't chew cuz it hurts my jaw! What is polyneuropathy! Since I had a tooth pulled I've had Neuralgia pain in my face and mouth sores for 2 months! They won't go away and do u think I may need them further evaluated and who do I go to to evaluate it! I'm in an asmatic state now and am on hi dosages of steroids, but not getting better they need to go higher, but don't listen to me! So I go to ER and they treat me! I hope we all find some relief in some way! I use no preservatives eyedrops as I'm allergic to many preservatives! I'm an upbeat person and still work with needy people! I love helping others and I live to help the world!!! I've been told by doctors that I'm not SUPERWOMAN, but I say prove it!!! Lol... I'm 64 and still go to my concerts and am enamoured by the stars and make friends with the world!!! GODSPEED!!!
Hi I am in New Plymouth and have SS and Lupus The Auckland branch as far as I know is more or less defunct due to several problems. My sister has SS as well and we used to attend the Auckland meetings once a year. I started off a support group in New Plymouth it lasted a couple of years and slowly dwindled due to I think access to the internet and getting information there. Tho only members left were those who did not have computers or didn't know how to use the internet. Welcome aboard you have plenty of friends here.
Traveller.
Hello Deirdre ,
me too i'm seronegative and the dr think maybe i'm seronegative Sjogren , lupus and mixed CT !
how the dr diagnosed u seronegative sjogren ? any investigations??
thanks
samaka
Hi Samaka. If you look at my Bio in my profile most of that info is there. My ENT specialist diagnosed mainly on symptoms and presentation. Are you in NZ?
thanks Deirdre ,
No i'm not from NZ , i saw your Bio , but i though there's more confirmed investigations for diagnosis other than ENT sypmtomes and Eye's shrimer's test , as many doctors told me it could be just SICCA syndrome , not necessarily true to be Sjogren ! that's why i'm asking 🤔🤔
There are blood tests but many people test negative for them. The schirmers and lip biopsy are supposed to confirm SS but mine were still vague so my ENT is going by symptoms and what she sees on throat scope.
Welcome, hope you get the help you need, we all have to stick together to help support each other because most doctors are not much help.
Hi there. I'm also new to this site. I am on the North Shore, Auckland.
I am 38 and diagnosed with secondary sjogrens about 5 years ago. I have no idea what other conditions I have as the Dr and Rheumatologist I see are both very vague. I feel that I am just a small case to the Rheumy so he doesn't seem that interested in my issues and just told me I had some form of inflammatory arthritis as well?? I find it all really depressing as I just want to know what is wrong with me and with the health issues i have, what is related to an autoimmune and what isn't. I also have 2 young children so am scared at what the future holds for me.
I have been seeing Raoul Stewart but am keen to get a second opinion. I looked online and thought Kristine Ng at Healthpoint looks quite clued up. Has anyone had any experience with her?
Thanks, Sal
Hi Sal. I'm so sorry you are not getting the help you need.
I also liked the sound of Kristine Ng but couldn't afford her private fees. My GP is trying to get me an apt with her via WDHB.
Jacqui Allen ORL with WDHB is a Sjogrens expert and very helpful. Try to get in with her.
Best wishes
Deirdre
Thanks Deidre. I got blood tests done this week from my GP and she said that the results haven't changed so still can't determine which condition I have. Can only go by symptoms and my symptoms replicate quite a range of conditions.
She said that a Rheumy would just give me the same answers so to save on the cost of specialist costs I'm just going to leave it for now but will see a different Rheumy once symptoms change.
I asked GP if she knew of Kristine Ng and she said yes and that she's very good. I think I'll look more into it when I need to go again but will keep a note of the ones you have suggested too.
I've spent years going to different GPs, Rheumy, ENT, Optometrists, Opthamologist and had all sorts of scans and tests. Even with health insurance the costs are quite phenomenal!
So just trying to get on with it as best I can and take it day at a time. Just find it frustrating not knowing what I'm dealing with!
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