Sjogren's/Lupus?

[Rosa1]

Hi so as well as hypothyroidism I have positive anti nuclear antibodies which I have been told indicates Sjogren's/Lupus? I sometimes get dry eyes and dry mouth. Is this something my GP should be treating? Thanks

[ITYFIALMCTT]

A lot will depend on whether you have Primary or Secondary Sjogren's or Lupus and those are typically a diagnosis made by a rheumatologist or specialist endocrinologist (there's a very specialist unit in Guy's iirc).

It might be useful for you to have a read through of posts by Hidden and Hyponanna . E.g.,: healthunlocked.com/thyroidu...

[Rosa1 in reply to ITYFIALMCTT]

Ok thanks for this. My previous endo ordered the autoimmune profile which showed I had positive antinuclear antibodies but she didn't tell me about them. I haven't been to a rheumatologist because I had negative rheumatoid factor.

[AZWobbly]

Sorry to say that your GP will probably not have a clue how to effectively treat them. I've had the same symptoms, and the BEST help for dry mouth is coconut pulling. Get yourself some organic coconut oil in a jar. Every time after you brush your teeth, take a tablespoon of coconut oil and swish in mouth for as long as you can -- up to 5 minutes if possible. This will cleanse and moisture your mouth more than any OTC stuff out there like Biotene. I also use sugar free lozenges when I feel particularly dry in between. Although feeling dry can also mean that you need more water. There are moisturizing eye drops you can buy almost anywhere. Don't get the kind that "take the red out" as they have an antihistamine in them which will further dry your eyes. I have not had the problems with dry eye for awhile, so do not remember directions, but would use as directed, or try asking your doctor about them as to how often. Let me know how it goes. It will be interesting to know what the doc has to say about that. They will not like the coconut as that is too natural for most of them. Drugs!! NOT!!

Good luck!!

[boo16 in reply to AZWobbly]

I use Biotene at night and it lasts a good 5 or 6 hours, gets me through most of the night so not true for all that it is ineffective.

During the day I use Glandosane spray. Get on prescription. Excellent for carrying when you cannot continually sip water.

[AZWobbly]

P.S. Coconut oil is also much cheaper in the long run, and more effective than Biotene or any other dry mouth products out there. Also, on the eye drops: it just occurred to me that ones for contact lens wearers may be even more moisturizing than others as I used to wear the lenses. Check labels. At least that has been my experience.

[Puska]

Having positive ANA’s doesn’t mean you have systemic issues but on the other hand a negative rhueumatoid antibody test doesn’t mean you might not have other systemic issues happening but it doesn’t seem like you have advanced symptoms. That’s a rheumatologist s job and they treat many other issues not just outright rheumatic stuff.

[Rosa1 in reply to Puska]

Ok I have been told by a GP I have advanced symptoms but endo dismissed it

[Puska in reply to Rosa1]

Sure. Get a referral to a rheumatologist. Endos don’t treat ‘rheumatology’ issues.

[Hidden]

Products are fine, coconut pulling may work well for some. But untreated sicca can cause severe cavities and scarring on the eye surface so it’s important to get good preservative free topical treatments from your GP regardless of whether this is Sjögren’s or not.

The sicca is just the tip of iceberg for me. My nervous system is shot from Sjögren’s.

The more specific panel of antibody tests for Lupus and Sjogren’s is known as ENA. If your ANA or Rheumatoid Factor are strongly positive but not your ENA panel then Sjögren’s is much more likely than Lupus - but you would still need a lip biopsy to confirm.

Otherwise, if all that’s wrong with you is dry eyes and mouth, then your GP can prescribe Hyloforte drops to use four times a day and some nighttime gel if your optician confirms you need it. Heat pads and massaging your lids daily is good too. For dry mouth then ask for salivex pastels and you should avoid sugar, keep good oral hygiene and try to breathe through your mouth rather than nose.

There isn’t really any effective treatment for Sjogren’s anyway unless it attacks your organs - and even then...! Lupus is a slightly different disease but both can present differently in each sufferer - definitely not just sicca or butterfly rashes for me though.

[Rosa1 in reply to Hidden]

Thanks I have been told by GP I have advanced symptoms of Lupus/Sjogrens and my optician has said I have crusting of the backs of my eyes

[Hidden in reply to Rosa1]

It is up to your GP to refer you to rheumatologist in that case - nothing to do with your endo - they can’t diagnose Sjögren’s or Lupus. Only a consultant Rheumatologist can.

Crusting at back of your eye? Is that scar tissue or anterior blepharitis? If the surface of your eyes is scarred (corneal melt) you should be referred to an oththamogist.

There are usually three types of eye disease going on with Sjögren’s to a greater or lesser degree. I use Hyloforte drops, Artelac Gel and I treat my mybomean gland dysfunction (anterior blepharitis) using heated eyepads for 15 minutes and a strange looking massage tool afterwards. I’ve just had punctal plugs put in my tear ducts - seems to help a bit with the dryness.

They would only offer you Disease modifying Antirheumatic Drugs if you had the systemic type of Sjögren’s where it affects all of you - like flu with chronic fatigue, RA, IBS etc. But dry eyes and mouth still need a good GP, dentist and optician.

[Rosa1 in reply to Hidden]

Thanks I think it is anterior blepharitis

[Hidden in reply to Rosa1]

Okay this is MGD. Did your optician not recommend heated eyepads everyday then? If not they should have. After heat pads you should massage eyelids gently after GI ger Meibomian glands working. This is not the same as Sjögren’s, although most with Sjögren’s have it - plenty of those with MGD don’t have Sjögren’s - same with dry eyes - it’s common and there are many reasons including vitamin deficiencies, ageing, medications and Hypothyroidism.

[Kipsy in reply to Hidden]

Hi Hidden

I too use a heated eye pad ('Eyebag') recommended by my optician but I then manually massage. If you have time, I'd love to hear about your massage tool & see if I could find one. Thank you.

[Hidden in reply to Kipsy]

I think it’s called Blephogel? It looks a bit like a white silicone clitoris!!

[LH44 in reply to Kipsy]

My eyelid massager is from Eyepeace £30... eyepeace.org.uk/phone/purch... 👍

[Kipsy in reply to LH44]

Thank you SO much x

[Hidden in reply to LH44]

Yes that’s the one - although mine was a different brand but exactly the same thing!

[SlowDragon Administrator]

Dry eyes likely due to your thyroid hormones being stopped incorrectly and dire vitamin levels

Hypromellose eye drops on prescription will help.

[JanW]

Yes you need to see a rheumatologist who will then decide if you need to be tested for Sjogren's. I had a lip biopsy for it last week and await the results. Always best to know where you stand otherwise you're up in the air.

[klr31]

I have Hashimoto's and have had positive ANA but read that it's common to have these together and they don't necessarily mean anything. It just indicates that you are at risk of autoimmune diseases.

Karen

[Missd66]

I had really bad dry eyes and mouth but my Sjogren's test came back negative. I also had very low vit D and have found that since taking high doses of D3 along with vit K2 this has reduced considerably. ..Worth a try?

[milkwoman]

Please get referred to a rheumatologist for a full blood work up and urinalysis. If you do have lupus and/or Sjogrens, you need to be treated

I have lupus, Sjogrens and hypothyroidism. I am on Plaquenil (300 mg), split dose. I'm also on Xiidra for my dry eyes (life changing treatment). I also use OTC drops (Systane Ultra Preservative Free) and MGD Eyebag Treatment.

[Lorabelle in reply to milkwoman]

Hi milkwoman, I have researched my symptoms and they seem to point to a mix of Hypothyroid (but TSH is only 3.94 so GP not interested) Sjogrens and Lupus. I know about ANA test for Lupus which I'm about to order but could you tell me what tests are available for Sjogrens?

And if ANA is positive and I go back to GP, is it a rheumatologist I would ask to see? Or is there a list of tests I could ask GP to run? I'm not convinced they would know what to do with results but if it ruled things out or in it might be helpful.

Thanks

[milkwoman in reply to Lorabelle]

Hi Lorabelle -

I NEVER tested positive for hypothyroidism (GP was also not interested, despite my unexplained symptoms) so I sought out a functional medicine doctor (Dr. Blanchard) who took one look at me (and my lack of outer third of eyebrows, sparse eyelashes, slow reflexes) and just KNEW I was hypo. He started me on Levo based upon my symptoms. He saved my life and also, gave me the strength to continue my fight to find out why I was so very sick. My gut told me it was more that just hypoT.

As for rheumy tests, I’d ask GP for ANA, ds-DNA, Complement Proteins (C3 and C4).

For Sjogrens, also ask for autoantibodies SS-A(Ro) and SS-B(la) as well as Rheumatoid Factor (RF).

If GP gives you a hard time, ask him/her: “what’s the harm?” I have found that simple phrase to be amazingly good at convincing doctors to do what I ask. After all, it’s just a blood test and they have not figured out why you are so unwell, so what’s the harm in ordering them for you?

If you are certain your symptoms point to lupus/Sjogrens, then I would push to go see a rheumatologist for a full workup. Many people are sero-negative for lupus but it doesn’t mean they don’t have it. Symptoms play a huge role and when not in a flare, blood results can be “normal”.

When my GP tested me, I showed a positive ANA, high ds-DNA and decreased C3/C4 proteins. That was enough to send me to a rheumatologist. I will tell you tho, the rheumy told me I didn’t have lupus (purely based upon looking at me - fit, active female with no butterfly rash), until 10 days later when the results of my blood work showed that I DID. I have never gotten the butterfly rash. Some of us just don’t. SLE diagnosis came first. Sjogrens came later when I saw that I had tested positive for SS-A(Ro) antibody. Ophthalmologist confirmed my dry eyes. Rheumy put me on Plaquenil (hydroxychloroquine).

Also, look into your family history. If there’s ANY history of rheumatological disorders in you the family, that builds a stronger case for you to be tested. I found out (after the fact) that there was a strong family history of rheumatological disorders. If I’d known earlier, getting diagnosed would have been much easier.

Good luck!

[Lorabelle in reply to milkwoman]

Thanks so much for that. I am going to ask for the tests you suggest. You certainly persevered to get to the bottom of your illness!

I was put in ME bin years ago but I want a diagnosis because my symptoms are getting worse and I think there may be some help out there for me.

Something has occurred to me though. I had gum disease which they thought was Pemphigoid. Their blood test (no idea what it was) was negative but they took a gum biopsy which did confirm it.

Two things worry me slightly - if their test was ANA, it may still be negative and also if I've got pemphigus (auto immune?) it might be a false negative and they'll say it's for that and doesnt prove Lupus.

It's such a minefield isn't it. I will definitely try your 'what harm can the tests do' approach!

[milkwoman in reply to Lorabelle]

You do have to persevere! Also. ALWAYS get copies of ALL tests (labs and procedures). Organization is key. I went back and got copies of everything and put a blood results into a spreadsheet. It helped me figure out what to research, what to speak to doctors about and where to go from there. I still record all my results - helps me to track how I’m doing.

A positive ANA doesn’t tell you which disorder you have but it does start pointing the way.

Anti-ds-DNA is primarily associated with lupus and the result will be listed as a “pattern” and a “titre”. “Speckled” pattern points to lupus, titre (like 1:1320) shows severity of inflammation.

The complement proteins show “disease activity”. If valued are low, then disease is active.

Your gum disease experience certainly could be a result of Sjögrens. I would make note of that when asking for tests (and also get copies of medical records re: that issue).

It’s time for you to get organized and educated on your health picture. I’ve been where you are - it’s not an easy task but you can do it!!

[Triplet54]

After having systemic Lupus for nearly 30 years a few months ago I was diagnosed with Sjogrens. On a rare visit to the GP (I have to know 6 weeks in advance if I'm going to be ill to see a GP - or get a telephone diagnosis) I mentioned that some times I choked on my food. Blood test later - was told over the phone Sjogrens - what can I do ? nothing !! 3 months ago saw Rheumatologist (first one in 20 years - arranged at my request) who arranged CT scan on thyroid and jaw - apparently he does this with all his new Lupus patients, plus extensive blood tests. Apparently blood results sent to my GP in August - heard nothing off them but get to see consultant early December, yay !! I was also diagnosed 2 years ago with hyperthyroidism - on carbimazol, then became coeliac. Artificial saliva only works for a few minutes. I just make sure I have a large drink handy when eating - especially meat !