The Australian Sjögren's Syndrome Association
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1st Appointment with Rheumatologist is next week, Any Advice?

Hi all, I'm in the UK and I have my 1st appointment with a Rheumatologist next week.

I gather than my symptoms indicate Sjogrens, but I don't know much about it. My wife has RA and it took quite a while before she was formally diagnosed, so I'm not expecting immediate answers but .... I'm wondering how best to prepare. I don't like hospitals so I know I will be stressed and wanting to get away sharpish, but I don't want to be missing anything either

What should I be expecting?

What advice can anyone give on being prepared?

This is how I would describe the things i'm experiencing:

I have joint pain in my foot, ankle (been years) index and little fingers (within last yr). The foot and ankle is the worst, especially when standing after sitting a while. The finger pain is mild at the joint when I try to clench them.

These joints tend to feel hot ( and tight) in the morning for a while (within last yr).

Issues with a dry mouth and periodic dry eyes (especially evenings) (all within last 18months). My optician tested my eyes for dryness with some kind of evaporation test. (Normal is apparently 7-8 seconds mine dried in 2-3).

I've been feeling tired and listless of late. Not sure if that's down to slow dieting tho

My Doctor did a blood test with showed a slightly high inflammatory marker, which I guess is why i'm now seeing the Rheumy.

I'm not sure how treatments differ between different countries so It would be especially great to hear from anyone in the UK.

Thanks in advance

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Hi there. I live in Scotland and there are a few of us from UK here. Fortunately for us an Australian fellow sufferer hosts this Healthunlocked community - the only community on HU for Sjögren’s.

I believe the only way a diagnosis of Sjögren’s can be confirmed and systemic treatment offered is by having either positive anti RO (SSA) or LA (SSB) Antibodies or a positive lip biopsy, or an existing rheumatic disease plus symptoms.

There are only a small handful of Sjögren’s specialists across the UK and unfortunately many rheumatologists don’t really recognise Sjögren’s as anything other than a secondary nuisance.

I was initially diagnosed with RA in 2011 but my diagnosis has changed to primary Sjögren’s - diagnosed by lip biopsy and positive ANA. I’m also hypothyroid.

In my experience Sjögren’s is very misunderstood and is a more isolating disease than the others because few people, including many GPs and rheumatologists, recognise that it can and often does affect any part of us, including our joints, organs and nervous system. I have found that many rheumatologists (and I’ve seen six including a Sjögren’s specialist) focus on RA and other forms of inflammatory arthritis simply because they are much easier to identify, monitor and treat.

If you are diagnosed, or even if you aren’t but still feel you have it - you may want to join the BSSA and perhaps find a local group.

It’s a very underdiagnosed disease and I’m afraid that the UK lags sadly behind many countries in its understanding of Sjögren’s. Hopefully, through awareness raising, this will change. Meanwhile I hope that you get clarity soon. Take care.

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Hi Twitchytoes, hey thanks for all of that. I guess I will find out how knowledgeable they are next week. The BSSA website looks really helpful.

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Sorry if I was erring on the negative side re Sjögren’s but you mentioned that your wife has RA. The criteria for diagnosis and the way many rheumatologists view Sjögren’s is quite different to RA - just in case you get a rheum like my first who never even mentioned Sjögren’s once my antibodies were negative for it. It then took 5 years to escape the mild RA diagnosis which didn’t address my severe widespread and progressive neuropathy.

Consequently I’m a bit growly about the myth that Sjögren’s is mostly just dry eyes and mouth and achy joints! Best of luck and please let us know how you get on 🤞🏽

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Thanks, I do appreciate your comments... I'd rather be real about what to expect.. 'forewarned ..etc ' I will let you know how it goes. I think i'm of the same mindset as you, which is probably why i'm trying to give myself a heads up on what to expect. My wife's experience wasn't initially all that good. She was diagnosed with RA only after a quite lengthy delay (between appts) I know how much of a wrangle it was to get the Rheumy to recognise her results properly. It was awful having to watch her go through that... (she now has it quite bad). I don't really want to wait until I get 'strong' symptoms... that said i'm feeling quite rough and the dryness is quite tiring, albeit I've no way of making any comparisons with what is considered 'normal'.

I've tried signing up with the BSSA might give them a call tomorrow. Thanks again

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Useful to hear about the BSSA. I'm in the U.K. so might join that as well. The rheumatologist I went to see for a second opinion recently seemed very uninformed sbout SS despite it being on his profile as an interest. It took me two years to get the chronic pancreatitis dx, which from my understanding and what I've read can also be linked to SS. So I'm prepared for a battle to get anywhere with this.

I would agree that most medical professionals I've met seem massively dismissive of SS as just dry eyes and mouth. Frustrating.

Hope things work out for you.

Best,

C

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Hey Chad01, good to hear from you. I feel your disappointment with the second opinion.

It seems what we need help with is how to push back and respectfully challenge on some of these assumptions and the idea that diagnosis over multiple years is ok.

We are not health professionals for sure but, there must be a way of addressing the issue without appearing to do the whole 'teaching to suck eggs thing' with the Rheumy. You will find the resources on the BSSA helpful, (I know I have).

What we need is a fact sheet to take with us, with respected health professionals putting their name to it that will make some the 'less informed' Rhuemy's challenge their assumptions. Something of a Sjogrens diagnosis myth buster.

I've read from time to time about patient empowerment and stuff and i'm all for that but I'm needing some direction.

Hope you get some success real soon.

All the best

Mark

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Well for the sake of anyone following this....I had my appointment and needless to say the Rheumy said he didn't think I had Sjogrens...

Which leaves me feeling frustrated and perplexed... That said I think he was quite thorough with his examination.

He did ultrasound on all my finger joints, but could not find anything of concern. Which on the one hand (punn not intended), I'm happy about as it means i'm in good shape.... but of course it doesn't explain the morning and night time stiffness and the inability to clench my fist without that tightness and what I consider to be mild pain.

He didn't have time to scan my left foot which is where i'm having most of my pain issues, but at least i'm scheduled to go back to one of his clinics for that.

He didn't really focus much on my dry mouth, dry eyes, or indeed my numptiness, but he seemed to recognize why I felt it was Sjogrens.

Interestingly one of his reasoning's against an SS diagnosis was that I'm male and so I didn't fit the 'profile'. I pushed back on that. (My wife and I spent two years trying to get help for our daughter who it turns out didn't fit he profile for an Osteoid Osteoma (benign bone tumor), but was diagnosed and treated instantly when we found the right consultant- I didn't say the latter bit tho)

As I say I think he was being thorough. He's had my feet and hands Xray'd and has sought blood tests for the following

My wife had the idea of taking a photo of the bloods form.... and once again... he seems thorough

Anti ccp

ENA

DsDNA

C3/C4

And the form mentioned Bone, Liver and Lupus

If the tests reveal anything he will write to me, if not next visit is 6 months, (whichI balked at)

Meanwhile I have bought some Oralieve products for the dry mouth which i'm finding helpful, I have some eye drops that my wife has for when they get too sore, so I guess I could manage to wait for 6 months, but what then?

So.... all in all I've mixed feelings -

I wondered If I should write ( a respectful) letter to the Rheumy reaffirming the symptoms i'm experiencing despite his findings, that way my concerns are in writing and I will have time to be more articulate (As I don't think I was when I saw him - I really have a thing about hospitals)

Take care

Mark

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As a doctor who has had Sjogrens for about 30 years, I am sorry that you did not feel that you got a good service from the rheumatologist. I would certainly write to him. It can do no harm and might help? I am now 84 and take numerous immunosuppressant drugs etc. The result has been that my joints have been reasonably stable but, as many say, the mouth, lip and swallowing problems give me most problems but my rheumatologist always seems more concerned with my joints. Perhaps, in time rheumatologists will come to understand the major problems of Sjogrens syndrome?

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H Robert

Thanks for your comment. I think I will write, I'm waiting to get my blood results beforehand, then I can frame it appropriately. Then we'll see how open he is to a wider diagnostic landscape. All the best.

EDIT: I feel I ought to add... I wouldn't want to give the impression that the service was bad. On balance, I think he was thorough in the area's in which he has expertise. It seems, (perhaps like your Rheumy) he just focused on the elements he was most experienced at first, which doesn't really help me IF what I have is Sjogren's Syndrome or maybe even Sicca. At least I know there is no damage to my joints.

Since talking to the helpful folks at the British Sjogren's Syndrone Association, I'm gonna hold off writing and try going to see if someone who specializes with SS can give me a quicker route to diagnosis (whatever that is). The BSSA are a really useful point of reference, especially for anyone in the UK who's concerned about Sjogren's.

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Mach13 - I’m sorry you didn’t get clarity this time.

However I have to say that there’s a lot of gender bias either way. If you’re as woman then you face the preconceptions surrounding menopause, making it less likely that you can get a timely diagnosis of Ankylosing spondylitis and assumptions being made about over sensitivity to pain. Which is a cheek when you consider that many of us have endured childbirth! But I don’t think being male should count against you having primary Sjögren’s. Have you been to optician and dentist and got their assessments in writing at all. This helped me somewhat.

Some are told they are too young to have Sjögren’s and yet I’m sure I’ve had it since I was a child.

At the end of the day rheumatologists may suspect Sjögren’s more often than they are prepared to say. But as there is no targeted modifying treatment or cure - they are apt to ignore it. Doctors like diseases they can treat. I was even told by a very nice professor of Vasculitis with a touchy feely kind of charm - that Sjögren’s a Cinderella disease which they often choose to overlook because of the lack of treatment options - not because it isn’t serious.

I think if it were me I wouldn’t write since it doesn’t seem he was unprofessional and may surprise you yet.

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Hello again Twitchytoes

Thanks for your comment. Yep I won't be writing now, I'm just going to look at other options... perhaps going private for an initial consultation with someone who specialises in SS. Any you're right being male doesn't count against me. Health professionals that do specilase in SS know that statistically men are 1 in 10 for being diagnosed with SS. I just have to get access to them (and I will).

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Well I’m glad that you haven’t been put off. Of course it is probably the case that many more young and male people do have SS than stats show but are misdiagnosed with ME, Fibromyalgia or idiopathic small fibre neuropathy or IBS. If Sjögren’s is the second most common rheumatic disease then even if stats are correct - 1 in 10 just makes it a rare disease. Only 5% of people with Lupus are seronegative we are told but it still happens. It usually says that it’s a very under-diagnosed disease in same paragraph!

I saw UK SS expert Dr Price in Swindon privately last year to learn more about treatment options.

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Well I saw Dr Price a few weeks back... (also privately) and absolutely amazing the difference in the experience. Seems if it's Sjögren’s it's early stages, but at least she clinically evidenced what i'm experiencing as Sicca. She explained exactly what and why things are the way they are re dryness, joints and all. She's already written to my Local GP so I can get something for the dryness (Pilocarpine and Hylo Tears) Will be picking up my prescription tomorrow. Plus I have a whole raft of advice for self care. My GP is going to arrange for me to be Referred to Dr Price so that at some point I will get the lip biopsy to test for certainty as to where it's Sjögren’s or not.

Honestly.... it matters not what it's called as much as having someone to help who understands. Now I have that .... I also have something to help with the current symptoms and confidence that the person looking after me knows exactly how to help me manage things.

The irony is if I'd left things as they were I wouldn't even be scheduled for my next appointed with my current Rhuematologist until another 4 months time. I'm guessing that would have then been a another long wait for a referral to Maxillofacial (as that was muted option ahead).

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Delighted you have seen Dr Price and received a likely diagnosis. She is very well respected, new president of the British Society of Rheumatology so you’re in very good hands!

But just one thing - you should copy and paste the right spelling of Sjögren’s so we raise its profile properly, lol!! Xx

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Why thank you but I couldn't possibly know what you mean.. lol ;-)

Thank goodness for editing... :-)

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😎☺️🙃

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