The Australian Sjögren's Syndrome Association
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Good morning, I am new to this community but quite well known on the Polymyalgia one. I have just come off steroids (prednisolone) after six years and suffering no ill effects. After about four years, I was diagnosed with secondary Sjogren's. It seems to be quite difficult to separate the symptoms as far as they concern aches and pains in joints and muscles, though the dry eyes and mouth are typically SS. So I still do have the odd ache around the shoulders and now in my knees which is a new area for me! I also have dodgy piriformis muscles which spasm at the most unfortunate times - usually in Marks and Spencer when I misguidedly bend to look at an item I might want to buy.

Thank you very much Australia for hosting this very useful community which I see has worldwide membership - I'm Scottish living in England. I am sure I can't be the only one with entangled PMR and SS symptoms!

4 Replies

Welcome to the group,I have Rheumatoid Arthritis and a whole host of other things, I have 3 rd stage Sjogren's, which is Sjogren's Peripheral Neuropathy. What I have had great success with is Black Seed Oil, I take it as well as rubbing it into painfull areas have a look on Google, you should be able to get it in the chemist or online.

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Thanks for the advice, Beverly. I haven't heard of black seed oil but will go to Google and search for it.


Hi there and welcome. Are you certain that you don't have primary Sjögren's rather than secondary? For me Sjögren's affects my entire system and presents with high inflammatory markers, widespread small fibre neuropathy, Raynauds and tendinitis/ inflammatory arthritis. I'm on the maximum dose of an immunesuppressant drug called Mycophenolate.

Some with pSjogrens feel benefit for the fatigue and pain from taking Hydroxichloraquine - might be worth asking about now you've successfully tapered off Prednisolone?

I was initially diagnosed with RA but this has switched to primary Sjögren's now - which is why I ask you about secondary to PMR. My rediagnosis makes far more sense to me. I think I've probably had it since I was young along with Hashimoto's hypothyroidism. I live in Scotland


HI Twitchytoes

I am an exiled Scot, in Cheshire. Where are you in Scotland? I haven't quite worked out what level my SS is on as some of the symptoms attributed to Polymyalgia are similar. The problems I am having with my knees at the moment are definitely not typical of PMR. I am seeing the consultant in September to have one knee aspirated. My inflammatory markers have never quite got back to normal (whatever that is). When PMR was first diagnosed, CRP had reached 250. Now CRP is 21 and ESR 22. Can't complain.

Your symptoms sound horrible and I hope they are under control.

All the best



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