Sjogrens specialists Sussex

Hi guys, for those of you who suffer with Sjogrens and are based in Sussex, who do you see and what are your views about your specialist?

My current rheumatologist is of the view that there's nothing that can be done about Sjogrens but drink water and same treatment as lupus. But we all know it's not that simple. Just thought I'd explore other possibilities.

Thank you

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  • That does seem a trifle simplistic to me!

  • Yep. My blood tests show nothing resembling Sjogrens but then they don't show lupus either. Rheumy said that it looks like I may have incipient Sjogrens through symptoms but then went on to say that I don't need to do anything else but take the same treatment.

    But he's sending me to a haematologist to check a swelling in front of my neck, in case it's lymphoma. Errr, so I shouldn't worry about Sjogrens then...

  • Well I guess he has a point about Sjogren's - as yet there are no targeted treatments and the increased risk of Lymphoma for those with primary Sjogren's (especially seropositive) increases still further with immunesuppression, so it's a catch 22 for us.

    Of course there are a great range of topical treatments for eyes, mouth, GI system and Pilocarpine works well for some if the Sjogren's is caught soon enough before permanent damage to salivary glands has occurred.

    But it's a systemic autoimmune disease so a far greater awareness needs to take place amongst the old school type of rheumatologist I think - and more clinical trials done and new targeted treatment options found.

    For those like me who's Sjögren's manifests in the nervous system primarily - the only treatment options haven't been shown to help many in the way that Methotrexate and Biologics help those with RA and Lupus. In the US this kind of inflammatory neuropathy is known to respond well to IViG but here in the UK there's little talk of it as a treatment option. It's ab extremely scarce resource.

    The BSSA says that Sjögren's neuro involvement is often self limiting. But this isn't thought to be the case at all in the international rheumatology and neurology circles, where it is treated as an immune mediated inflammatory neuropthy which can and often does progress to do serious and irreversible damage if not caught in time.

    Only today I read forum discussion posts between two people who's Sjogren's had been misdiagnosed as MS. Many more describe not being able to hold newborn grandchildren because of the lack of sensation on their arms. Mycophenolate can help but isn't offered that often - again because of the increased Lymphoma risk.

    Dr Elizabeth Price is the UK's Sjogren's expert and she's meant to be very good indeed. She's based in Swindon and takes private patients too.

  • Good to know all that, thank you!

  • Hello purple top

    Lovely seeing you back on forum but so sorry you have a lump to worry about now!. There's always something with us isn't there?. Whilst I can't help with specialists in Sussex I just wanted to say which area as I used to live in East Grinstead near the Queen Victoria Hospital?. Don't know what it's like these days, it's a smaller hospital!.

    Do hope you get a good recommendation and you get good news. Keep us posted. X

  • Hi Purpletop

    Where abouts are you in Sussex?

    Jenny

  • Around East Grinstead but I'm willing to travel for a decent rheumy with Sjogren interest

  • I will PM you

  • Hello...Typed out a reply to your post but it disappeared into the ether. I only type with one finger ! But the gist of it was to say that Elizabeth Price in Swindon is my Rheumatologist and I can't recommend her enough. She is very patient and thorough. It's worth asking your GP to refer you if you can get there.

  • Thank you, I'll check her out!

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