Sjogrens treatment : Hi all, I’m new to... - The Australian Sj...

The Australian Sjögren's Syndrome Association
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Sjogrens treatment

rosserk
rosserk

Hi all, I’m new to posting on this forum. I’ve been posting on thyroid UK for a while.

I have hashimotos, ehlers danlos and sjogrens. I’m really struggling with the sjogrens and think it could be responsible for my residual symptoms. Hashimotos and Sjogrens have some common symptoms and I think I’ve wrongly assumed all my symptoms were Hashimotos instead of Sjogrens.

I don’t take any medication for Sjogrens other than tear drops and mouth gel. I’m wondering if some type of immune suppressant might help. Does anyone have any experience with Hydroxychloroquine (Plaquenil) ? I’ve had an abnormal liver test and I’m wondering if Sjogrens is the cause.

My symptoms are extremely dry mouth and throat to the point were my tongue feels as if it’s been burned and I have difficulty swallowing. Sore itchy eyes, burning pain across my back (feels like my lungs). Coughing up mucus, an itchy rash which can appear anywhere on body and last week I was diagnosed with vasculitis. I’ve read that Sjogrens can cause an abnormal liver panel and vasculitis so I’m wondering if an immune suppressant would stop/slow down any antibodies which are possible on the attack.

I would really appreciate some advice if any one can spare the time to reply.

Kind regards 💐

10 Replies
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Hidden
Hidden

Hi there. I have same combination as you but I rarely use the Thyroid UK site as I tend to think Hashis is easily controlled if the Levothyroxine is at the right dose. I know if it isn’t because I become more sluggish and very stiff.

I was initially misdiagnosed with RA and my presentation of Sjögren’s is very like MS. But I have tried 5 immunesuppressants over 7 years and very bad reactions to 4. The one I have tolerated best is Mycophenolate but my rheum took me off it as they weren’t convinced it was benefiting me much.

However many people do well on Hydroxichloraquine so don’t let my experience put you off. Sjögren’s is such a complex disease and presents differently for each of us. I think this may well be time to focus on your Sjögren’s because of the medication options still available to you. For me it seems to involve most of my body’s systems one way or another. Ugh. X

rosserk
rosserk
in reply to Hidden

Thanks TwitchyToes, I have an appointment this week so need some information before I try and persuade my very reluctant doctor to prescribe Hydroxychloroquine.

I think I’m likely on the right dose of Levo and it’s only because I have reappearing symptoms that I’m questioning the sjogrens. It seems illogical that my symptoms could be thyroid related because I feel really well apart from the back pain, abnormal liver panel and the vasculitis which all point to sjogrens.

It’s the burning pain in my lungs at the back that’s most concerning, if I stay sat down all day and do nothing I feel fine but if I’m up and about they really start hurting. Have you had this type of pain as well as abnormal liver panel? It’s really stressing me out, it’s one step forward ten back! 😭😭

Hidden
Hidden
in reply to rosserk

Yes I would never have considered my Hashis as culprit for liver problems and Vasculitis. It’s not a systemic disease like Sjögren’s or Vasculitis.

I had very raised liver function tests when I was on Methotrexate but they came right down again as long as I didn’t touch any alcohol at all.

Then I had my gallbladder removed 3 years ago - it had apparently become attached to my liver (EDS?) so this caused a post op wound sepsis and it took my liver about 8 months to settle back down after that.

It’s fine now although occasionally my LFTs soar - mainly if I’m ill and have used a lot of paracetamol.

If your diagnosis of Sjögren’s and Vasculitis are both established then I would be surprised if your rheumatologist didn’t want you to take some kind of disease modifying anti-rheumatic drug - unless you have PBC which might mean this needs discussing with a liver specialist as well.

Do you have oesophageal reflux as if this goes untreated it can cause chest pain? Sjögren’s can cause GORD and the dryness can impact on the lungs so definitely get this checked. Otherwise it might be chostrondritis or gallbladder - depending how high up it is. I haven’t experienced this kind of problem myself. Most of my active problems are in my nerves, pelvis, IBS-c and extremities including mouth - small fibre neuropathy plus recurring UTIs.

rosserk
rosserk
in reply to Hidden

Sounds like you’ve been through the mill, hope things are better for you now?

What’s PBC? Sorry I have no idea...

No I don’t have any reflux.

I was diagnosed with vasculitis after a sudden rash appeared on my legs. They suspected sepsis at first but settled on vasculitis. The rash was there for about 7-10 days so not sure if that classes my vasculitis as established. My rheumatologist never mentioned any drugs but then she was aware of the vasculitis and the raised liver panel. I was thinking of asking my Doctor to contact her and see if she’d see me again. She said at my last visit she didn’t need to see me for 12 months. Not sure I will get my doctor to prescribe anything without the rheumatologists approval.

Hidden
Hidden
in reply to rosserk

PBC = Primary biliary cholangitis (a disease of the liver).

Bearing in mind that I’m in UK - I’m unsure why your rheum thinks annual visits are enough if the systemic side of Sjögren’s is out of control? But if you want this appointment expedited then I would certainly push for this by phoning her personal secretary - or ask GP to ask your rheumy if Hydroxichloraquine would be suitable, bearing your new symptoms in mind.

The only thing your rheum might be considering is your liver I expect as all these anti rheumatic meds can have a negative impact on the liver. Otherwise I can’t see why she wouldn’t be treating your Sjögren’s if it’s been confirmed. Hydroxichloraquine / Plaquenil is the gold standard treatment for Lupus and Sjögren’s and mild RA.

Regarding reflux - you may have silent reflux ie with no other symptoms. I would definitely get this symptom checked out sooner rather than later - you could ask for a chest x-ray perhaps?

rosserk
rosserk
in reply to Hidden

TwitchyToes I’m in the UK too, in the West Midlands. My rheumatologist doesn’t know about my liver function or the vasculitis. The Vasculitis appeared about 14 days ago, which prompted my doctor to do a complete liver panel, it was those results that came back abnormal. I had a second test done a week ago because they wanted to repeat it and haven’t been given the results.

I’ve got an appointment tomorrow with my doctor and I will discuss the results and ask about treatment and contacting my rheumatologist.

Thanks for your advice really appreciate it 💐💐

Hidden
Hidden
in reply to rosserk

That is reassuring but just keep bearing in mind that lots of rheumatologists and GPs don’t actually know much about Sjögren’s.

You may want to contact the BSSA helpline by phone now and see if your rheum is listed as having a special interest. They are extremely helpful to speak to regardless. Well worth joining as a charity if you haven’t already. ‭Their helpline is 0121 478 1133‬ and you don’t need to be a member to use it.

Also worth doing is getting actual copies off your GP of all blood test results so you know which LFTs are raised and by how much. 😊

rosserk
rosserk
in reply to Hidden

Thanks for the brilliant advice. I will ask for my results at the doctors tomorrow. My rheumatologist is brilliant and very switched on she was the one who found Sjögrens. When she said about seeing me again in 12 months I think she thought I was managing the symptoms which to be fair weren’t my overriding cincetn at the time. I’m going to ring her Secretary after my appointment tomorrow and see if I can get an earlier appointment. Kindest regards 💐💐

Hidden
Hidden

This all sounds really good. I can see how you perhaps didn’t make a connection with your Sjögren’s and what you thought were Hashi’s symptoms as the two overlap. In fact although I was diagnosed with Hashis many years ago I never knew it was autoimmune until my RA symptoms started! And on the TUK HU there are those who will attribute anything and everything to Hashis. But over the years I’ve come to realise that my Sjögren’s probably caused my Hashis and is the much more serious disease - for me anyway.

Best of luck and do keep us updated. X

rosserk
rosserk
in reply to Hidden

Funny you should say that but I’ve been thinking exactly the same thing. My Sjögrens was diagnosed before my Hashimotos and I seem to have rid myself of numerous symptoms that I can definitely attribute to my thyroid with Levothyroxine. The residual symptoms I’m convinced are sjogrens so I’m hoping an auto immune suppressant might help. I think the Sjögren may be responsible for the thyroid problems and I think it’s probably the cause of the liver issue and the vasculitis, indeed I’ve read some information online that states these issues can be a complication of sjogrens. I’m 80% better than I was so fingers crossed treatment for sjogrens gives me the other 29%! Lol 😜

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