not sure if to post it on this site

[anbuma]

having optician tell me i have lupus yesterday ,am beginning to think it could be sjogrens from symptoms of sjogrens.just read that sjogrens can start in the eyes ,to the mouth and neck.optician said dry sore eyes.still have oral thrush-tongue swollen -and neck -tightness and hoarseness-painful cant wear polo neck sweaters,and lumpy.or is it all thyroid related

[LouiseRoberts]

Hi

Do you have thyroid antibodies?

Many people who have one auto-immune disease also develop another.

This is not to say that your symptoms are definitely NOT thyroid related, it is possible that they are. But it is also worth exploring other avenues.

There is a Lupus group on here:

healthunlocked.com/lupusuk

Louise

x

[anbuma in reply to LouiseRoberts]

hi louise my dr says I don't have any auto immune diseases but original gp diagnosed them,i know there are sero negative blood tests .that is why I am on here to try and get answers as my dr doesn't make any diagnosises-definitely have symptoms of lupus/.query thyroid and/or sjogrens.he doesn't like me going on the internet but what am I supposed to do when they dismiss you its where I get my support from

[Jackie]

Hi I agree it sounds like Sjogrens, a lot of ignorance about it. It is similar family to Lupus. not so dangerous.Opticians , even a good one are not the people to see about this. You need to see an eye surgeon, for Sjogrens elsewhere a specialist Rheumy.. There is treatment either topical or drugs ( strong).

Both are autoimmune so common with thyroid disease if it is autoimmune too

Best wishes,

Jackie.

[Fruitandnutcase]

I agree, if someone has told you that you probably have Lupus then your next step is to go off and get a doctor who can treat it because an optician can't.

It might show up in your eyes but even if you fix the dry eyes symptoms you aren't fixing your Lupus because it affects other parts of your body too. I imagine it is it would be the same with Sjorgens you need to see a specialist.

I worked with someone who has Lupus and she attends hospital regularly, although she does go to the optician to keep a check on her eyes as well - think something to do with the drugs she takes, mostly she keeps well but every now and again she gets quite ill. Don't know what meds she is taking though.

[Hidden]

Hi - it is very confusing I agree. Not sure about the lumpy neck but swollen lymph glands are common in Lupus and Sjogrens.

I will tell you what I know from the perspective of someone who has a diagnosis of RA and a more longstanding one of hypothyroidism with positive antibodies for TPA (thyroid).

Although I started a few years ago with a lot of joint pain in places that are considered classic RA - wrists, knuckles, ankles, toes and knees - which then spread to shoulders and neck later- I now only have very itchy skin everywhere with pink spots around my face that sting like nettle rash, and a gnawing sensation in my upper gut, extremely dry eyes, itchy scalp with parasthesia all over, wet mushy sensation in legs and fingers and toes that go bright white when slightly cold. Oh yes and huge amounts of fatigue.

So I'm expecting to be told by my rheumatologist that I'm fine because of lack of swelling and tenderness in my joints in ten days time. After months of being on only the most mild of disease modifying drugs I feel totally rubbish but not with RA in its classic form. I've pestered my gps about my thyroid thinking that it must be the cause but my TSH is 0.2, FT4 is 15 and my FT3 is 5 something - well within normal range on 100mcg of Levo.

They refered me to a dermatologist but the clinic has been cancelled so this won't be for a while. So yesteday I phoned the Sjogrens Association helpline and asked if this could be primary or secondary Sjogrens and she was almost convinced it might be primary Sjogrens. She said I need my LA and RO antibodies testing. My ANA was negative 7 months ago so this almost ruled out Lupus. But the RO and LA are more specific for Sjogrens - although if they too are negative then a biopsy can be taken from my lip to show Sjogrens .

Primary Sjogrens is more serious than secondary (its the other way round with Raynauds) and treatment is the same as Lupus and RA with disease modifiers. Lupus is more complex disease because it can go for your renal system and lungs. Most people with Lupus have Sjogrens and Raynauds too.

Sjogrens attacks your moisture producing glands which means dry eyes, mouth and vagina as well as stomach problems. It is diagnosed by a rheumatologist.

Rosacea is a skin disease that can cause flushing and a butterfly rash too and not everyone who has Lupus has a discoid rash. It is diagnosed by a rheumatologist (not an optician!) usually with a positive ANA and kidney or lung problens along with skin issues, raise inflammatory markers and Sjogrens and Raynauds symptoms with joint pain. Hope this

helps.

The drug I presently take is called Hydroxichloraquine - an anti malarial drug originally - and it does require regular eye testing because it can very occasionally cause retinal problems. It is a first line drug for Lupus and Sjogrens and for mild RA. Before that I was on methotrexate injections - a first line drug for RA which is a chemo drug.

[Trudes]

Not sure you should how you should respond to an opticians 'diagnosis' of lupus. Sounds like you should take the info and go to your GP and request a referral to a rheumatologist. I have lupus and sjrogens and am hypothyroid and speaking from experience its important you get correct diagnosis in the hope the symptoms can be best managed (almost irrelevant of what is causing them). Try to be patient though lupus diagnosis can take time.

[anbuma in reply to Trudes]

hi there it was a routine check up at the opticians.i m not taking his word as gospel but it does tie in with other symptoms-facial rash ,scalp condition,and sores on hands.am seeing a rheumatologist on 15th.lets hope this time he doesn't dismiss what I tell him and gives me the chance to tell him my symptoms.

[Trudes]

Good luck with the appointment why not write all symptoms down together with how long you have had them and when you notice any flares? Hopefully they will check urine and bloods and repeat in another 6 months as my ANA's are frequently negative despite a kidney biopsy confirming kidney disease grade 3 & 5 caused by lupus.

[anbuma in reply to Trudes]

will do I have kept a "diary " of when each symptom started going back to sept 2011

[Hidden]

Hi. I have Lupus, so perhaps can spread some light. Lupus, RA and a lot of the auto-immune diseases are not completely cut and dry when it comes to diagnosis. There are a list of criteria and you need to have 4 or 5 of them in order to get a diagnosis. Here's a good website. Sounds like you have some of them and maybe you need further blood tests from a rheumatologist.

rheumatology.org/practice/c...

I had the rash and a biopsy came back as positive for discoid lupus, then later on SLE. I'm also having hypothyroid symptoms for past year and a new goitre with nodules but they are trying to tell me my new symptoms are lupus because of a normal TSH. I know they're not Lupus related...but its an uphill battle...

Sjogrens (I have that too) is common with Lupus so you should definitely see a rheum for a diagnosis. Don't think an optician should be diagnosing you : (

Good luck and I hope you start to feel better soon x

[Hidden]

I agree about the Opticians diagnosis, it's completely outside there expertise to even suggest such a thing! An optician is a good port of call for testing the tear film in suspected sjogrens cases, as that is a routine test that they can carry out which is a strong indicator, where the dye does not dissipate at a normal rate, that you can go armed with to your GP if you feel he is dismissing your symptoms. An optician certainly can't go any further than that. Did they perform the tear film test? If so, get the written results and take them to your GP or Rheumatologist. Good Luck xx