Lupus v sjorgrens: Hi everyone i have had no end of... - LUPUS UK

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Lupus v sjorgrens

julie1234 profile image
8 Replies

Hi everyone i have had no end of problems over the years with my bowels, bladder, unexplained seizures etc. I am at the end of my tether with it all, finally i saw a reumatologist who was looking along the lines of sle i had a positive ana and ro blood test, finally i thought i had the answer and everything had fallen into place i started medication. Then i saw another one who said he thought it was sjogrens syndrome I wish they would make up their minds i think i am going mad please help.

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LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Hi julie1234,

Lupus and Sjogren's syndrome are both autoimmune disorders and have very similar symptoms. Although they can both stand alone as separate conditions, they can also be as a result of one another too. This can occur in about 1 in 5 patients with lupus.

Would you like me to send you an information pack? I can include our factsheet 'Lupus and Associated Conditions' which explains about sjogren's and other associated/overlapping conditions to lupus. Just send me a private message, or an email, and i will pop one in the post for you. hayley@lupusuk.org.uk

Best wishes,

Hayley

LUPUS UK

patientpat profile image
patientpat in reply toLupusAdmin3

Hello Hayley,

Like Julie 1234, I have been diagnosed with Sjogrens and Lupus by two different doctors at St Thomas's hospital. Prior to that I had received a diagnosis from another Doctor of UCTD.They don't seem to see this as too much of a problem medically as the treatment they have offered me in all three cases is Hydroxychlorroquine.

As we know there can be a huge overlap of symptoms of these three conditions and it is not always easy to differentiate and can take several years as in my case.

Please could you send me any information you have on Lupus and overlapping conditions.It is all so confusing and the last thing anyone wants is to be given the wrong diagnosis.

Many thanks

patientpat

LupusAdmin3 profile image
LupusAdmin3LUPUS UK in reply topatientpat

Hi patientpat,

I'd be more than happy to send an information pack along with our factsheet 'Lupus and Associated Conditions' to you. Just send me your full name and address either by private message or email and i will post one out to you. hayley@lupusuk.org.uk

Best wishes,

Hayley

LUPUS UK

Chris21 profile image
Chris21

Hi Julie,

I had pancreatis twice before they finally got their act together. I was told lupus then they added sticky blood, then sjogrens, then Raynaulds as well as arthritis lol don't despair they are all under auto immune diseases and as Hayley says they can all have similar symptoms or cause a stand alone problem. When I'm not feeling great, Its a guessing game as to what is causing it. Hang in there, they will sort out which medication is best and hopefully you will begin to feel better. X

Lupylass profile image
Lupylass

Hi there.

When I was going through diagnosis my rheumatologist had the same dilemma before deciding I had both SLE and Sjogren's (amongst others). However for me, the main treatments are the same (hydroxychloriquine and methotrexate) and so the diagnosis in some way wasn't the most important thing.

Sometimes it takes a while for the full picture to develop but you are in the right hands. Keep a diary and communicate with your medical team. Hopefully soon you will get the final diagnosis. X

Many of us have multiple autoimmune conditions or at least they present so similarly that they are believed to be one, then more symptoms offer another idea. I'm on my fouth condition now, many overlap and I'm not sure what name to give each symptom but the treatments seem similar. Good luck

I wouldn't worry too much - both Sjogrens and Lupus are connective tissue diseases and the drugs and symptoms overlap. You can have one or the other as your main disease or sometimes both together.

You are lucky at least to have positive antibodies for them as some of us don't and this is when things get more tricky and disturbing and some doctors dismiss our symptoms as being psychosomatic.

Cjgj profile image
Cjgj

Me too don't think any ones knows how to help you feel it's a waste of time think they think shut up and put up

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