Hi, I'm new here and need some help please.

[Nikkipool]

I was told I have sjorgrens due to high ro and la, but I haven't had any other tests done. Is this normal ?

[Hidden]

Hello and welcome!

Normally you’d only get this diagnosis of Sjögren’s if you also had “other compelling features” - usually Sicca/ dry eyes and mouth, fatigue and flu like symptoms. Occasionally it shows up in the nervous system or digestive system or joints before the dry eyes and mouth.

It’s a sister disease to Lupus so can affect any part of you and you can also have positive RO and LA with RA and Lupus. If your symptoms match then you have seropositive Sjögren’s but if no other more specific markers in your blood for RA and Lupus then you’d be seronegative for these other related diseases.

Sjögren’s often includes many features of Lupus and RA and sometimes MS. So it could be your main or only disease and still be a multi system autoimmune disease all by itself, same as the others.

Your parotid glands and lymph nodes also need careful monitoring if you have primary Sjögren’s.

The treatments are much the same but Sjögren’s is still much less recognised or understood than either Lupus or RA.

I have seronegative primary Sjögren’s ie lip biopsy positive. Mine is very like MS.

[Nikkipool in reply to Hidden]

I do have a lot of symptoms, dry eyes, mouth, etc. I am also have psoriasis, epilepsy and osteoarthritis.

[Hidden in reply to Nikkipool]

Sounds like you have been correctly diagnosed then - sorry to have to welcome you to the Sjögren’s club but at least the Lupus sufferers here are a very supportive lot. There’s also an Australian Sjögren’s community you might like to join - many of us here are on both and the BSSA is a good charity to become a member of and learn more.

[Nikkipool in reply to Hidden]

Thanks any help would be great. At the moment my voice is concerning me as i am struggling by the end of the day to get any noise out at all. Have you any suggestions if the cause ?

[Hidden in reply to Nikkipool]

Yes this is a fairly classic Sjögren’s symptom I’m afraid. I’m the same. It’s the dryness affecting your larynx and sometimes lungs too - just respiratory function generally. In my case it’s also a neuro thing as my Neuropathy affects my throat and vocal cords and the trigeminal nerves.

But Ro positive people like you tend to get the more glandular version whereas people like me tend to get the neuro version - both suck!🙄

You could try sucking salivex pastels which you should get on repeat prescription. Also just sip at watery hot drinks often and try to make sure your mouth doesn’t get too dry.

Another reason for hoarseness can be GERD or silent reflux which are both common to Sjögren’s so if you’re not already then you should ask about this and take prescription stomach protectors. Ranitidine works best for me.

[Nikkipool in reply to Hidden]

Thanks, I was taking omeprazol as I was on naproxen, but then they have stopped the naproxen as they aren't good for long term use!! But they haven't replaced it with anything else. I have a few left but know that without naproxen and zapain I find it hard to move around and look after my son

[Hidden in reply to Nikkipool]

I had same experience with Naproxen. It’s still the only drug that helps my tendon and nerve pain a bit. But after a few days the gastritis becomes severe so I use it only occasionally nowadays. Same applies to oral steroids. They might be prepared to give you IM steroid shots at regular intervals for joint and muscle pain if you ask.

But some sort of stomach protector is a good idea regardless because of impact of oral dryness on your upper and lower digestive system. So Naproxen or no please do ask for Ranitidine to see if it helps your hoarseness.Silent reflux can cause oesophageal inflammation and that’s no joke so it’s important.

[Nikkipool in reply to Hidden]

I'm going to have to get something. I'm in the middle of changing gps SSO may be the next one will be more helpful

[Hidden in reply to Nikkipool]

You can buy Zantac over the counter for the time being.

Suggest you join the BSSA asap and ask for some of their info leaflets for medical professionals and give them to your new GPs. They can be very unaware of the systemic complications of Sjögren's but the info booklets should help.

[Nikkipool in reply to Hidden]

That's a great idea. Thank you

[katidid in reply to Nikkipool]

Have you been evaluated and had Psoriatic Arthritis ruled out? Also (if your comfortable saying) what type of epilepsy? Research has shown certain types of epilepsy may be influenced by the immune system as well as non-epilepsy seizures.

[Nikkipool in reply to katidid]

Hi, my rheumatologist doesn't think it's psoriatic arthritis due to no swollen joints. Although I do have a lot of nails that are affected and lifting from the nail bed. These fingers are the ones that seem stiffer.

My seizures started when I was 14 (I'm 42 now) but they did say that tests didn't show epilepsy but after several grand mal seizures they started treatment as epilepsy. I also have absences, but I can see and hear what is going on around me, I just can't move or talk. Does this sound like anything that could be to do with sjorgrens? I was weaned off my epilepsy medicine several years ago over about seven or eight months but had my first grand mal seizure within a day or so of stopping medicine. So I was put back on it. I normally just have absences now. Sorry for the long reply.

[katidid in reply to Nikkipool]

From everything I understand seizures are more commonly seen in Lupus cases. It’s termed CNS Lupus or CNS Involvement. It’s difficult to tell tho if your immune system triggering seizures or not. If you don’t already, I would track them alongside your other symptoms to see if there is a pattern. If something stands out I would definitely see a neurologist and tell him/her about your autoimmune diagnosis. You’re already on seizure meds, so there is probably not much more to do. However, if your still having “absences”, which by your description sound like simple or complex partial seizures in a certain part of the brain, then technically your epilepsy isn’t under control. It may be different here in the states but the standard for under control is no episodes of any kind for at least 6 months. I think you should see your prescribing doc and reevaluate your seizure treatment plan. I’m sure they told you this, but ongoing seizures can cause permanent issues, so it’s crititical to stop them. Let me know if I can help in any other way and best of luck. Hope you get to the bottom of this!

[Nikkipool in reply to katidid]

Thank you, I will get hold of my epilepsy nurse and see if she can get me an appointment with my neurologist. It would explain my general health over the years if there was something else going on.

[Hidden in reply to Nikkipool]

Someone PMd me yesterday to say they have epilepsy relating to their Sjogren’s so not so sure? And of course it’s always possible to have two separate conditions or two overlapping AI diseases - I do!

[Chanpreet_Walia LUPUS UK]

Hi Nikkipool,

Welcome to the LUPUS UK HealthUnlocked Community!

According to The Lupus Encyclopedia, “The classical presentation of dryness and being positive for ANA, anti-SSA, anti-SSB and/or RF is usually enough to make a diagnosis of Sjogren’s. However, sometimes the doctor will order a minor salivary gland biopsy to confirm the diagnosis”.

You may like to check out the British Sjogren’s Syndrome Association (BSSA) website here - bssa.uk.net/

To read our factsheet on 'LUPUS: The Mouth, Nose and Eyes' click here: lupusuk.org.uk/wp-content/u...

[Nikkipool in reply to Chanpreet_Walia]

Thanks I will look at that now 😀

[Bebe76]

I would think they would do additional testing for other antibodies. It is possible to have overlapping/multiple autoimmune disease. I have been diagnosed with SLE (ANA +ve, high dsDNA, leukopenia+physical symptoms) and also am positive for anti-Ro and La and suffer from dry eyes, nose, thoat and elsewhere. Also diagnosed with Coeliac disease!

[Nikkipool in reply to Bebe76]

Hi thanks for your reply. I don't think they are going to do any other tests at the moment because she didn't want to see me for a year unless something changed! (Rheumatologist that is)

[Hidden in reply to Nikkipool]

A year seems quite a long time when newly diagnosed? I would have thought six months would be more normal. Some of us do have a very neurological presentation of Sjögren’s but it tends to be the Ro negative ones. Here is a link that may help:

hopkinssjogrens.org/disease...

[Bebe76 in reply to Nikkipool]

I agree a year is a long time for newly diagnosed. Don't be hesitant to ask for more tests or a second opinion. Considering you have several other health issues, it would seem logical to see if one or more of these are connected. AI disease are complex and the many of us on this forum can tell you from experience that doctors don't always get it right the first time!

[Nikkipool in reply to Bebe76]

I have found out the phone number for my epilepsy nurse and will ask her to see me as soon as possible. Maybe they may have a rethink on what's happened in the past concerning my health issues. Thanks everyone you are definitely very supportive and caring.

[Hidden in reply to Nikkipool]

Found this if it helps?

epilepsy.com/sjogrens-syndrome

[Nikkipool in reply to Hidden]

Very interesting read. Thank you