PMR/GCA in Australia? help please.

[Roltuba]

I have just heard that a cousin in Oz has been struggling with PMR for around 5 years with what sounds like very bad advice and very little information - lots of yo-yoing Pred. She "leaves the steroids until she can stand it no longer, then back on for 4 or 5 weeks" and has had a ghastly time, makes my 6years seem a breeze. Possible GCA symptoms (trouble with tongue not working) have also been ignored. We normally only communicate about family research so I had no idea. Have told her all I know, referred her to Kate Gilbert's book and the Charity and strongly advised her to join this Forum. She says only 25mg and 5mg Pred are available, surely that is not so in Oz? She is planning on starting again (at what she doesn't say) and staying on a lower dose (5mg?) but if she can't get less than 5mg tablets a slow enough taper will be hard. She says when she takes the Pred it is like being let out of prison, but seemingly never tapers slowly or stays on it for long. She lives in a very rural part of NSW. It's VERY sad, hope hope hope she joins us.

[PMRpro Ambassador]

I've never heard anyone saying they can't get smaller than 5mg pred in Oz - other countries. Maybe some of our Australian members can help.

[123-go]

Your cousin's regime of stopping and starting is extremely harmful. A lot more information is needed to be able to comment. I'm just wondering if her GP is leaving her to manage on her own? Does he approve of her methods? - If so he is ignorant of PMR and she seriously needs someome more knowledgable to look after her. She will never achieve remission if she carries on with her own system.I hope she becomes a member of this group where people will offer advice and support based on their own experiences and knowledge gained.

[DorsetLady PMRGCAuk volunteer]

As PMRpro says, hopefully others in Australia will see and comment....not sure if these links will be any use to her, but worth a try -

My intro (although I know she’s not new!) - healthunlocked.com/pmrgcauk...

and charity’s site -

pmrgca.org.uk

[Meggsy]

I am in New South Wales and have 25, 5 and 1mg tablets. Your cousin should not be stopping and starting pred. Are there any major towns nearby? Is she able to see another doctor? Please encourage her to join this group (if she is not too remote for internet connection) to be advised by the very experienced and helpful people here.

[SheffieldJane]

Thank goodness she found you! What a mess and so much unnecessary suffering. Does she have complete freedom with her Prednisalone or Prednisone prescriptions? She really needs a Rheumatologist who understands PMR and GCA the tongue symptom is really concerning. She could be putting her precious eyesight at risk!Urge her to join us but she really needs competent medical care, urgently.

[squashie]

I'm in Melbourne Victoria and can easily get 5 and1mg tablets. There may well be bigger sizes available - fortunately I've not needed more.

[AussieKid in reply to squashie]

I too am in Melbourne and have available Pred 25mg, 5mg and 1mg tabs as needed/directed by rheumatologist. PMR/GCA 7years.

[Sollymo]

Just confirming as others have , that 1mg tablets are available in Australia . I’m taking two of them daily for the foreseeable future .

[Caloo650]

Hi there from Sydney. She needs a rheumatologist. Mine in Sydney Peter Youssef may be able to suggest one close to her. She can also get 1mg prednisone in Australia. Maybe county areas don't stock them. Get her to message me if she wants local info.