Perth Rheumatolgist

[Gracie10A]

Hi,

I have just moved to Perth & need to link in with a Rheumatolgist to manage my Sjögren's. Diagnosed 6 yrs ago. Can anyone share their experiences & recommendations ?

Thanks,

[weathervane]

Hi gracie ,

Am afraid im not from Australia so i cant help with a new rheumy. Would your previous doctor have contacts to recommend someone, or would there be a support group in the area you could join and get some advice? I was lucky that the NHS rheumy i was refered to was very good. I wish you lots of luck with your search 🌸🌸🌸

[bambino4]

Hello, I too am a Sjogrens sufferer and see a great Rheuatologist at Charlie Gardners, but not sure how easy it would be for you getting referred to them there....it would be best for you to see a good doctor who can put you onto a good Rheumatologist, there are quite a few good ones in Perth I believe....best of luck, Amanda

[Gracie10A in reply to bambino4]

Thanks Amanda,

I've moved over from Ireland and had a fantastic Rheumi at home. I miss him. He recommended the Australian Sjogens community pages. I've found a good GP here and she's asked me if I have a preference as to who she would refer me too as I work in a hospital but I said I'd ask a few colleagues and ye. I'm ideally looking for one who has a good understanding of Sjogrens & its complexities. I've heard the term "weird & wonderful disease" from health professionals too often. Who do you attend in Charlie's if you don't mind me asking ?

[bambino4 in reply to Gracie10A]

Hello again...yes its Professor Nossant...oh ive never heard it described as that...hes good, but he still doesn't seem to believe the pain and discomfort I have with my eyes!bHe just says to use a humidifier,, if only it were that simple! How are your symptons daily? I have had to give u work due to my eye pain and aches and pains it does really get me down. I have had this also for 6years, but it took 5 years of medical appointments with eye specialists and doctors to discover what was actually wrong with me and fully diagnose me with Sjogrens.....

[Gracie10A in reply to bambino4]

Hiya,

Yes I totally understand your frustration regarding being heard. I was asked by a doctor here what is the worst thing about sjogrens and when I answered 'the pains' she looked at me like I had two heads. I was also told by another doctor 'you don't get pain with sjogrens, just dry eyes'. I was diagnosed age 30 but I can remember having symptoms right back to my teens & childhood. It was exacerbated by a extremely stressful period in my life and then I was diagnosed.

My worst daily symptoms are the burning pains in my muscles, especially my neck shoulders and back. And the tiredness. I'm currently working 30 hours a week but I'm finding it very difficult at times. Especially as I have a one year little girl.

I have the usual dry eyes, mouth and other bits but I can live with them. It's the pain that affects my daily living & working ability. I'm anxious to find a rheumie here that listens to my symptoms & treats them accordingly, rather than tell me what I feel is "wrong" or doesn't fit their definition of sjogrens.

Thanks for the info regarding Prof Nossant. 👍🏻

[bambino4 in reply to Gracie10A]

Yes great to hear of someone else feeling pain as I do...and you are so young too! I have severe body pain back pain n tiredness, sooo tired all the time..

And I know how u mean being looked at with 2 heads! These autoimmune diseases

[bambino4 in reply to bambino4]

And I too am a fellow irish/English descent person. ...I am taking plaque nil. .are you? I do definitely think I finally feel somewhat better after a year or more on plaque nil, although I was very sick on it in the early days

[Gracie10A in reply to bambino4]

Yea I'm on Plaquenil 200mg twice a day but I'm currently trying to cut it down to once a day in order to protect my eyes. Although the symptoms do worsen on the lower dose. I've also recently discovered that plaquenil & the beautiful Australian sunshine are mortal enemies!!! I didn't even know I could get factor 50 sun lotion but am now the proud owner of about 300 bottles! Im on 75mg of amitriptyline daily for the pain and that changed my life at the beginning.

Do you take anything for the pain ?

[bambino4 in reply to Gracie10A]

I just take osteoparacetemol most days but heat packs are my best friend haha a d I also had a cortisone injection in my back which eased a little...I occasionally sunbathe just put lots of factor 30/50 on!

[Hidden in reply to Gracie10A]

I can't understand how any rheumatologist can query the pain of a Sjogrens sufferer? It's a recognised part of the disease - which comes under the heading of arthritis after all?

Mind you I was misdiagnosed with RA five years ago and only recently rediagnosed with primary Sjogrens. All the information I read about our disease says that the way the arthritis presents is usually like RA but with less swelling.

I honestly despair that Sjogrens will ever be taken as seriously as it ought to be. Mine has already done irreparable damage to my small nerve fibres everywhere and causes symptoms that are almost identical to MS. And yet two rheumatologists failed to make the connection and the third one only picked up on it and ordered a lip biopsy once my ANA turned a clear positive.

What on earth did they mean by "weird and wonderful" do you think?!

I live in Scotland - but my very Scottish son now lives in Sydney.

[diddy1 in reply to Gracie10A]

I see Dr tran at the Wexford centre next door to Murdoch he seems pretty good

[diddy1 in reply to Gracie10A]

Dr Tran at the Wexford centre near murdoch

[weathervane]

I have similar symptoms to yourself , muscle and joint pains, exhaustion, and eye problems. I currently take plaquenil, lyrica and i have had 1 course of rituximab ( i take other meds but these relate to the sjogrens ). These meds have made a big difference to my life as i was hardly able to move . It has taken a year to take the full effect though just had rituximab in April . I really wish you good luck with finding the right rheumy- - particularly as you are a fellow Irish person 🍀 Xx