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Anyone have any experience of Sjögren's syndrome?

(17 Posts)
Kayjay2018 Fri 23-Aug-19 12:23:31

Having met with my go this week and got my blood test results, they seem to be leaning towards sjorgrens. I am lucky and have managed to get a private consultant appointment on 3rd September but wondered if anyone has any experience of living with it, or someone close to them having it? Also if there are any questions I should be making sure to ask at my appointment

somewheresorted Sat 24-Aug-19 07:32:53

I’ve no answers but interested in this as I’ve just had blood tests taken after my GP mentioned that Sjorgrens could be the cause of the health problems I’ve been suffering with the last few months - I’ve now got an appointment with Rheumatology but have to wait 3.5 months!

Can I ask what your symptoms are?

Kayjay2018 Sat 24-Aug-19 08:24:17

@somewheresorted I don't think I have many symptoms but who knows! I asked to be tested for lupus my mum has it) after I had a miscarriage at 7 weeks in April. I have had raynauds and some sensitivity to light for years (around 20) but tests have always been negative before.

At the moment I Am finding I am quite tired (I thought this was because I was down after the miscarriage) and have developed a dry left eye in the last 2 weeks after walking the dogs on a windy Devon beach.

I was told I would be waiting 3months at least in the nhs so thought I would look at costs to go private, initial consultation is £240 and follow ups £175 but I believe this is different for each consultant.

Do you know what your bloods were? My Ana was 1:320 and I am positive for RO52 and RO60.

Redannie118 Sat 24-Aug-19 16:47:31

Has anyone mentioned Scleroderma to you? Its symptoms are similar to lupus and Sjogrens and often occur together. I have Scleroderma and Sjogrens and one of the diagnostic criteria is to have Raynauds. What are your symptoms? Do you have any digestion problems, heartburn etc? Swollen or puffy fingers? Joint pain?

elephantfan Sat 24-Aug-19 16:57:47

If you are going to go privately, do your research.
Look up all the Rheumatologists in your local trust and see which ones are specifically interested in Sjogrens.
Then see if they do any private clinics.
I know people don't like queue jumping, but sometimes it takes so long to get a referral that you can end up really ill waiting for an appointment.
I saw an eye consultant privately for the dry eyes and a chest consultant privately for the chest symptoms. That was before the arthritis kicked in.
My GP simply declined to refer at all, anywhere.
However, the chest consultant made the diagnosis and contacted the rheumatologist who then put me on her NHS clinic waiting list.
It took a few months, but I honestly think I would still be waiting.

Apileofballyhoo Sat 24-Aug-19 17:07:36

I know someone with it who was affected quite badly (she was even on chemotherapy for it) and she discovered large amounts of Vitamin D3 help control the symptoms for her. I've no idea why it works for her or if she was deficient but thought the information may be of help to you.

Kayjay2018 Sat 24-Aug-19 17:31:22

@Redannie118 @Apileofballyhoo @elephantfan I didn't have any symptoms when I asked for the tests, just had the miscarriage and knew from my mum having lupus that there were links to auto immune and miscarriage.

I've had raynauds since I was 17 ish and can be a bit sensitive to light. The last few weeks I'm noticing slightly stiffer hands and I'm always tired, I have one dry eye which, before I saw the doctor, was caused by walking for hours on a windy beach in Devon with the dog but nothing that would have made me go to the doctor

They haven't mentioned scleroderma, just that the antibody tests they did after the positive ana were negative except the RO52 and RO60. All other blood tests (they did a standard panel too) came back ok.

I've done my research, the consultant with the most sjogren experience is currently not working. So went with the next one who mentions that, lupus and connective tissue problems as his areas of extra interest.

If I waited nhs it would be a minimum of 3 months, plus I wouldn't have any control over the specialist. My GP has been amazing, really can't fault him, he is also seeking consultant obstetrician advise as I have been trying to conceive since the miscarriage. He has advised me to hold fire until I've seen the rheumatologist but says he would like obstetrician advice on record so he can support if I ever find myself pregnant.

I've been reading about having an anti inflammatory diet, have decided I want the rheumatologist to see me as I am, I will ask about it and then be ready to run with it if he thinks it's a good idea.

I didn't expect to find myself here. When I requested the floods the GP only said yes because of my mums lupus, he didn't think there was an issue as I had no symptoms at all. I just wanted to rule it out.

Oblomov19 Sat 24-Aug-19 17:37:31

My colleague who I am very close to, has it. It affects her badly in many many ways. Lupus, not being able to eat a lot of things, nothing hard, hardly any saliva, dry eyes.
That's just a few! It affects her majorly. The body is constantly attacking itself.

somewheresorted Sat 24-Aug-19 21:24:32

I’m really sorry to hear about your miscarriage kayjay but I’m pleased that your GP is so proactive, it just sucks that you’ve had to pay to go privately. My GP was genuinely upset about the current waiting time at both my local hospitals for Rheumatology.

I’ve not had the results of my blood tests yet but like you I’ve suffered with Raynaud’s for the last few years, but what kicked it all off this time was an attack of Blepharitis that started just under 3 months ago that I just haven’t been able to shift, even after trying every treatment going. The dryness is so bad that even with eye drops it takes me a good half hour on waking to clear the gritty feeling. I’ve always had dry eyes and haven’t been able to wear contact lenses because of it, but this is the worst it’s ever been.

I also came out in a rash about the same time that the Blepharitis started, over chest, arms and the bridge of my nose which I have found to my cost is photosensitive! I also have it on my palms and the joints in my hand are incredibly painful and tight, with swelling first thing in the morning - even picking up the kettle for my cuppa at the moment is difficult! 😁 and like you the tiredness at times is absolutely overwhelming...

My Mum also had all the above symptoms, plus she suffered with blocked salivary glands too on occasions, but as far as I’m aware she was never diagnosed formally with anything and each ailment was treated on its own. It’s only know that I’ve been unwell and my GP suggested Sjorgrens, that I wonder if that’s what she had.

Obviously until I see the Specialist I won’t know if I do have this, but like you in the mean time I’m trying to do as much as I can to help myself, I’ve been researching the Mediterranean diet and have increased my intake of oily fish and I’ve found some hand exercises on line to try and stop them stiffening up too much. I’m also mid 40’s and peri menopausal and wonder if this is exacerbating the symptoms?

Please keep us updated - I’m really interested to hear how you get on in September.

Kayjay2018 Sat 24-Aug-19 22:10:35

@somewheresorted I know I'm lucky to be able to afford to go privately, I'm 38 and we are/were trying for a baby, which is kind of why I want a quick referral. We have tried this month, and won't know the outcome until around the time of the appointment.

I'm looking at the anti inflammatory diet, seen some recipes etc on Pinterest with links to various sites. I'm keen to do as much as I can to reduce symptoms and minimise the need for medication. I see a reflexologist who has been helping me destress after the miscarriage, am also interested in acupuncture. I know stress can exacerbate flares in my mum so am now keen to get back in the flow. I always feel amazing after.

Keep me posted on how you get on, I'll let you know how things go. It's very daunting when you are dealing with an unknown.

I've just been and got some expensive no preservative eye drops from boots, eye a little better today, my nose is so dry it's giving me a headache though and don't know what to do about that! I've always suffered bouts of sinusitis so dry nose has never been an issue.

Sjogrens Tue 03-Sep-19 12:42:44

I have Sjögrgens.

I've been diagnosed for a few years as part of a connective tissue disease (it's an overlap of Lupus, Scleroderma, inflammatory arthritis etc). So a lot of the medical issues I have aren't necessarily connected solely to the Sjögrens.

The main Sjögrens problem/symptom for me is dry eyes/mouth. My GP prescribes eyedrops/artificial tears so hopefully your GP can do that. The best ones are preservative free. They can also provide artificial saliva. Even if you pay for prescriptions it's still a lot cheaper, as you say the eyedrops are expensive! I use a lot of sugar free sweets/chewing gum etc.

I do have a lot of pain and fatigue but again this might not solely be the Sjögrens, as my immune system basically hates me smile I do go through periods of flares and more dormant activity so the Sjögrens symptoms do change, but this seems to be linked to the general progress of the disease.

I have had a couple of miscarriages (a long time ago, my DC are older) and I can't remember the exact details but it was related to anti phospholipids, I remember them talking about my "sticky blood". I don't know if this is part of the wider picture as my disease wasn't diagnosed/active then. It may not be related. I do have children now though smile so everything crossed for you thanks

I also have Raynauds (am dreading winter!) Again there is medication for this but it's a last resort for me so I'm not on it atm. I could go on about silk glove liners and sheepskin insoles for ages though grin

With regards to my diagnosis I was referred to and diagnosed by a rheumatologist - the disease progressed slowly at first but when it speeded up the blood tests were very obvious.

I hope you get some answers quickly. If you want to know anything please ask, I'm happy to talk about anything. I don't want to worry you though as obviously I have other issues which affect a lot of things, not necessarily from the Sjögrens! Did you know Venus Williams has it?

Sjogrens Tue 03-Sep-19 12:46:48

I meant to say too, if your dry eyes can be eased, your sinuses/nose should feel better. I also use a nasal saline spray (but this is mainly as any dryness irritates my piercings grin)

Obviously speak to your GP before taking any medical advice from randoms on the Internet wink

Kayjay2018 Tue 03-Sep-19 13:08:24

@Sjogrens it's lovely to hear from you with your experience.

I had my rheumatologist appointment today. I appear to be in good health, no joint inflammation and my eyes are making tears (I'm not needing to use my drops very often) so hoping I'm out the other side of this issue for now. I will carry on with the saline spray as I get a dry nose when the central heating comes on (hopefully in a few months time)

He has said I had inactive connective tissue disorder at present so no treatment. I have just had the dna and aps antibodies tested (thought I'd pay rather than wait for the blood appt and then drs appt) so should know soon if there is an issue. He thinks my blood will come back fine. I'll see him again in 2 weeks to talk through those results.

I found out I was pregnant this week so he has told me about the heart block linked to my RO antibodies, luckily go had done a referral to obstetrician and an appt dropped through my letterbox yesterday.Sorry to hear about your miscarriages, they are devastating, I hope this little one is gonna stick around.

With my raynauds I invested in a proper Canada goose coat, thermal sock and some Swedish 5 layer mittens. I have to start wearing them earlier than most people, but if I wear them for 20 mins at the start of a dog walk I can eventually remove them. I'll find a link of the gloves could be handy for you too? They were a bit expensive but I felt worth the investment.

I had heard about Venus Williams - isn't she on some kind of raw diet to remove any inflammatory food types?

Sjogrens Tue 03-Sep-19 15:50:18

Congratulations on your pregnancy! I have everything crossed for you. I have heard anecdotally from a few people their symptoms really eased in pregnancy so hopefully that will be the case for you too.

You are very hardcore with the heating "in a few months", I admit I turned mine on for an hour yesterday blush I do have silk glove liners which are good, I also use those reheatable hand/foot warmers which work really well for me. The best present DH has ever bought me was a plug in electric throw for the sofa, it is literally a life saver in the cold weather.

Also in awe of you dog walking, one of the things I hate about being outdoors is how cold my nose gets, especially if I'm in a wheelchair - I haven't resorted to a balaclava yet but I'm tempted grin

I think I remember reading Venus Williams has a vegan diet and her food is all raw , but I might have got confused confused I don't think I could cope without hot food and drinks!

somewheresorted Wed 04-Sep-19 08:31:24

Kayjay thanks for updating and Congratulations!

That’s such lovely news to hear although I can imagine incredibly nerve wracking too - I will keep everything crossed for you!

Kayjay2018 Wed 04-Sep-19 12:20:18

@somewheresorted I've spoken with my gp today as my understanding was that just having positive Ana can cause pregnancy issues. Bless him he is going to contact the local hospital for advice which may include baby aspirin until we know the outcome of my aps sticky blood blood test.

Fingers crossed it will turn out ok

Hope54 Tue 10-Sep-19 05:41:31

Hello! I found out I had Sjogrens in 2016 when as I was pregnant with my youngest. They monitored his heart weekly. He is 3 now. I just joined this website, been scrolling through tons of internet sites this past two week trying to find answers. Waiting to be seen by the rheumatologist is oodles of fun. I have had salivary issues this past year and have passed stones two separate times, dry eyes, dry mouth.. Lately however i have the oddest rash on my body that comes and goes fairly quickly and is in a streak pattern. I thought maybe I scratched myself and as i was observing tons more just popped up without any contact and spread over my entire body. very inconsistent and they go away within the half hour than a new batch appears... the fear of the unknown. I have an appt tomorrow finally. My anxiety has been horrible with all this. I am reading everyones posts and I am amazed at how positive everyone is. My goal is to work on my outlook. My body aches, joints and muscles. I wake up and am already exhausted. I have headaches constantly. I find any little thing on my body and i am in fear my health is declining or that i have another disease nobody else has heard of.

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