Sjogrens

[Oidra]

I have had PBC since 2000 and coped well so it didn`t stop me doing anything I wanted to do. 10 years ago I was diagnosed with Sjogrens because of symptons I had at that time. 9 years passed without a worry but last year I started with Sjogren problems. It is now difficult to work out whether the issues I have are caused by PBC or Sjogrens. Is there any one else with the same problem?

[DonnaBoll Administrator]

Sjogrens Syndrome is one of the most common other autoimmune diseases that those with PBC have - along with osteoarthritis. Most with Sjogrens experience those symptoms of dry eye and mouth. Joint pain and stiffness can be a side effect as well. Do you see a rheumatologist for your Sjogrens? They may have some new drug that might help. You might find it helpful to join or at least research what the Sjogrens Foundation has to offer in the way of support and new treatments perhaps. sjogrens.org

I know how hard it is to accept that our mobility isn't what it used to be. For all of us, what is most important is that we keep moving. I hope you get some other responses from members who may have similar experiences.

[kingsnorth]

l also have sjogrens and in fact sjogrens causes me more problems than PBC. I have dry eyes, constant sinus infections, joint pain and nasal drip. I try to work through it as l know there will be good days. Exercising has helped a lot

[Dibbles2023]

I have had PBC, Hypothyroid and Sjogrens for 20 years. I first got the high ALP and GGT start in 2003/4, crusty eyes, dry eyes etc. Ignored by Bournemouth NHS. Then I got so ill it was thought I might have Lupus and was diagnosed Lupus & Vasculitis. Then in 2008, new Dr at Bournemouth dismissed Lupus and said Fibromyalgia. Ignoring the M2 antibodies, and everything else. Around the same time I had a lip biopsy which was inconclusive for Sjogrens’s, so even though they told me they thought I had it, I wasn’t given any help. I was later given basic eye drops. Pastilles were prescribed and taken away in short measure. Around the same time, and even though I had a TSH which averaged 8, and all the severe symptoms of Hypothyroid, I was told, ‘we don’t treat hypothyroid until you consistently have TSH over 10 and antibodies. (Despite the BMA saying a TSH over 3.3 should initiate a trial of levothyroxine)

Since then in 2009, and over the following ten years, I asked repeatedly whether i had PBC due to fatigue, hair falling out, M2 antibodies, high ALP and GGT, cold allergy etc. I was told right up until 2019 I did not have PBC, and the Sjgren’s was nothing. I finally got referred back to the Liver clinic in Bournemouth hospital and they said, ‘we think you have PBC, we thought you had it in 2009, but your M2 antibodies were coming and going. Even then, 10 years on from my first having M2 antibodies, (which was some 6 years after having high ALP and GGT, in 2003/4, which should have initiated a diagnosis and URsodiol) they just said ‘we don’t think you need medications yet’. So still no URsodiol. It was only a new young GP at my surgery, who after several months more, put me on Ursodiol.

2021, immediately after the covid jab, the Sjogren’s kicked up a gear, with severe dry eyes, dry nose, mouth, and keratoconjunctivitis and uveitis, within 10 hours. The Sjogren’s seemed to be accelerated by the Covid jab, and has steadily worsened since. I have no spleen, after being hit by a drunk driver outside school at age 10. I think the Covid jab, screwed up what immune system I do have, due to splenectomy. I’m pretty sure the Sjogren’s causes dryness throughout my digestive system too, causing extreme problems. But still nothing, from Bournemouth hospital.

The triad of Sjogrens, hypothyroid and PBC are impacted one on the other.

Good luck getting help. I’m not under anyone at Bournemouth hospital for PBC or Sjogren’s. I’ve not seen anyone in the liver clinic since finally being diagnosed PBC in 2019, and as for the Sjogren’s, I’ve not been seen since 2007/8. As for the hypothyroid, I had to go private in 2010, to get diagnosis and medication. I hope it’s different in your case, I sincerely hope so. It is a nightmare trying to juggle it all. May the god’s bless you.

[Oidra]

Thank you for your imput, so interesting. Dibbles has really had a tough time and reading it I realise my problems are to a lesser degree. Mainly chronic sialadenitis and other things caused by the dry mouth syndrome(burning mouth disease is one. ) I have joined the BSSA and today was with the local Sjogrens group who have given me a lot of information. I am waiting to see Dr Fisher at the RheumatologyClinic at the Queen Elizabeth in Birmingham in November . He is the only person in my area interested in Sjogrens I also go to that hospital for check ups every 6 months for PBC

Perhaps the BSSA office 0121 478 0222 could tell you if there is a Sjogrens group,not too far away you could join. They have been more help to me than my doctor or dentist.

[Artsy123]

if I’m being honest I have a hard time differentiating the fatigue from pbc and sjogren. Constant dryness back in my throat, hoarseness and on a bad day varying degrees of sob. Muscle stiffness at times. Some twitching and waiting for neurology to see what’s what. Having covid and the jabs also flared symptoms. Hard to know what doctor to report what to. Seeing a hepatologist in November hoping they may have some answers.

[Skypony]

Hi Oidra

Not being clear which autoimmune disorder is causing our symptoms - yep I bet that’s common. I have the same combo. I feel treating the symptoms is what matters because, as you imply, it’s doing life unimpeded that’s key.

Best wishes

[butterflyEi]

I was diagnosed 2006/7 but had symptoms a good 10 years prior so took a while for a diagnosis. I also have continued life much as normal but more recently (probably the last 5-6 years) I have dry eyes and have to eat moist foods due to a lack of saliva for chewing. I believe (no diagnosis) that I have a dry syndrome rather than Sjorgrens. I use a warm eye pad and eye drops I have also recently been advised by the optician to use OccuSoft in the mornings. I am interested to read about the burning sensation in the mouth as I often have a burning tongue which I have not mentioned to a doctor as yet but with your information will investigate further. thank you.

[tessiecat]

hi Oidra

I have pbc 11 yrs and was diagnosed with pbc related sjogrens 2 years ago atm i am having flare up of pbc symptoms having adding obeticholic acid 3 mths ago developed itch ( 1st time for me ) chronic fatigue and terrible muscle pains my eyes get tired and sore but as suggested i put drops in 4 times a day which helps they've stopped obeticholic now awaiting to see if i can try something else along urso to help as my alk phos is higher than ever and crp raised have finally had to take break from work to concentrate on health for a bit so feeling pretty down xx

[Oidra]

It seems we all have the same problem, what causes what?

If I discover anything interesting or helpful after going to Queen Elizabeth in November I will pass it on. But I have to say I am not very hopeful. Touching wood I can say I am having a good spell at the moment but I am always wondering what next!