My wife is currently on the long and winding road that will hopefully lead to us finding out whether she has Sjögrens or not. She’s ticked almost all of the boxes and had various tests and scans, seen Max-Fax, ENT and Rheumatology consultants and is just waiting for the dreaded lip biopsy now! One consultant (Max-Fax) laughed and told her that she ‘didn’t want Sjögrens!’ (to which she replied, being a retired nurse and having no fear of doctors, “no, but if I do have it then I want to know so that I can deal with it!). He also put her dry mouth, loss of taste, loss of smell, difficulty swallowing etc down to the medication she was taking and told her that things would improve if she stopped taking them. The fact that she is on blood pressure, cholesterol and thyroid medication seems to have gone right over his head! Another doctor told her that her latest round of blood tests showed that she only had Sjögrens ‘slightly’ and that she shouldn’t worry about it (imagine telling someone that they are only ‘slightly’ pregnant or that they are only ‘slightly’ dead!). Her rheumatologist has told her that, whilst he thinks that she probably does have Sjögrens, he can’t actually give her anything by way of treatment until there is a firm diagnosis.
As frustrating as it is for me, seeing the person that I love going through all of this, I can’t begin to imagine how much stress and anxiety she must be going through.
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Grandy1962
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You are a lovely chap for being so considerate towards your wife and I hope getting all this on paper will help you as well.
I think thyroid disease is an autoimmune disease (I am sure someone will correct me if that is not the case) when you have one autoimmune disease it is not uncommon to get another not that I would wish any autoimmune on anyone I agree with your wife once you know what you have then you can get on and deal with it and the comments about doctors is a common thread which runs through so many help pages such as these.
it is always a long frustrating journey before you get to the end result. supportive family and friends as well as forums where people understand can be a tremendous help.my rheumatologist’s famous words are ‘its nothing to worry about’ before I received my diagnosis, I was constantly told it was all in my head or it was anxiety or stress. which i did have, caused by the Doctors that i saw!
Hopefully your wife wont have much longer for her lip biopsy and then get the medication that will begin to help alleviate her difficulties. 😊
Tell her not to give up. My bloods were negative for sjogren disease but my symptoms were overwhelming sjogren disease so I was diagnosed as having it, as it happened my only positive blood test was for lupus so I got that diagnosis along with with the sjogren disease. Honestly its a relief to know what you have and you get medication (hydroxychloroquine and pilocarpine along with eye drops etc) which do help ease symptoms. She can visit an ophthalmologist to get eye scans and drops etc. and buy products like oralieve and xylimelts to help with dry mouth. See Lupus UK or BSSA for hints and tips. My other tip is find an autoimmune specialist rheumatologist (some Rheumotologists are no good at all and only deal with joint problems and are just not interested in autoimmune). Pay if you can for a single appointment and know for sure from an expert what they think. Take her notes and get her to keep a diary of symptoms. The London lupus centre is great. I went to a sjogrens expert (Dr Elizabeth Price at Swindon Hospital) Rough cost about £150 and she sees people from all over the country. I then transferred back to nhs afterwards but requested a specific consultant. I am now at Bath hospital which is a lupus centre of excellence. There are a few centres of excellence throughout the country, hunt them down and see if there is one near you. Lupus and Sjogren disease along with many other conditions often go hand in hand. It took 10 years for me to get diagnosed. Just let her know you can even get diagnosed with negative bloods if you have the right consultant. A lip biopsy should confirm though. Don't give up but unfortunately most of us had had to fight to be diagnosed for many years, so be prepared. Hope all goes well.
How brilliant that you are being so supportive. I have found my husband’s support invaluable, especially when medics, friends and colleagues don’t understand and put me in the ‘neurotic/anxious/lazy’ box. Initially diagnosed in 2016 via lip biopsy I have only just received a weakly positive ANA result. About 40% of Sjögrens patients don’t test positive on blood tests, but sadly no one seems to have told many rheumatologists.
All good wishes to you both for a speedy diagnosis and treatment.
I hope your wife gets a definitive diagnosis, but understand that some never get a definitive diagnosis. Like many others, I likely have seronegative Sjogren’s. I have all the classic signs and symptoms (dry mouth, dry eyes, flares during which parotid glands swell and get sore) but did not test positive for SS antibodies. My ANA score is 1:132 speckled pattern. I also have Hashimoto’s thyroiditis and interstitial cystitis (both can be associate with Sjogren’s).
My lip biopsy was negative. I learned that a negative finding does not rule out Sjogren’s. False negative results may occur due to problems with the biopsy sample, the reading of the sample, or an inadequate number of representative glands. Early in the disease, inflammation may not have developed into clusters of cells that qualify as foci. Late in the disease, atrophy and scarring may predominate.
I suspect in my case, the lip biopsy was done late in the disease, thus the latter occurred resulting in a false negative result.
Some rheumatologists will diagnosis a patient with Sjogren’s based on clinical signs and symptoms. I have been to two lousy rheumatologists who were not out-of-the box thinkers and who showed their ignorance. I learned it’s hard to find a rheumatologist well-versed on Sjogren’s. The two I went to were condescending and quick to say “there’s nothing one can do about Sjorgren’s regardless, so a diagnosis does one no good any way.” I am going to stereotype here (sorry) based on my own experiences and experiences of others I’ve run across: I believe rheumatologists are an odd sort, not adequately trained on Sjorgren’s. I’ve learned to look out for myself and not rely on any doctor claiming to be an expert. I am on hydroxychloriquine but it was not prescribed by a rheumatologist. Also, look into low dose naltrexone (LDN). If you can find someone to prescribe it, it is potentially very benedicial for both hashimoto's and Sjorgren’s. Don’t count on that person being a rheumatologist though.
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