Does anyone know of a group for Sjogren's syndrome please?

[Plumcake]

I do not have schlerderma but do have Raynauds. Thanks for any help

[zenabb]

It seems to me that you must have more than Raynaud's. Who diagnosed you? Do you have a rheumatologist?

[Plumcake in reply to zenabb]

Yes I do have rhuematologist now, and it was him that diagnosed the Sjogren's as well as Raynauds.

But I also suffer from Fibromyalgia and have done most of my life I reckon, though it was only diagnosed in 2002 privately, as my GP refused to believe I had Fibromyalgia when I put it to him after researching on the net.

[Butterfly54 in reply to Plumcake]

Hi plumcake,just in case you didn`t find it,if you go to to of page and see "My communities"click on there and you will see site for Sjogrens,It`s Australian and not a lot on there but worth a try.

Love and hugs Butterfly54xxxxxxx

[Plumcake in reply to Butterfly54]

Hi butterfly54

Thank you I will take a look again. I can't even remember if I found it or not. I knew it was Australian though.

Love and hugs Plumcake xxx

[Anteater]

Hi plumcake

There is a site for Sjogrens on healthunlocked - hope you find it

[Plumcake in reply to Anteater]

Well I wish I could find it as I keep typing in but only find this page with Raynauds and scleroderma.

Maybe I will ask the moderators to help me find it.

[Plumcake in reply to Anteater]

I've found it but it's Australian. so drugs etc will be different but will join, and I see there is a forum on bssa.uk.net/ but can't for the life of me see how you join it. lol

Ahh I've just seen a membership download form £25 and £30 for overseas. mmm can't afford it ...typical.

[Pipsmum]

Hi Plumcake

There's a very active forum at Sjogren's World. It's an American site, but has people from many other countries too.

In the UK, there the British Sjogren's Syndrome Association (BSSA). They are based in BIrmingham, but don't have an online forum.

NIcwe to meet another Sjoggie!

Kathy

[Plumcake in reply to Pipsmum]

Hi Kathy

Thank you for that info.

I have seen that there is a site for this in the UK, as I have the leaflet, will take a look later.

nice to meet you too, but wish I didn't have to under these circumstances.

What medicatioon are on for this S's syndrome, if you donlt mind me asking. Are you in the UK?

I am on the anti malarial hydroxychloroquine sulphate.

Al the best

Annette

[Plumcake in reply to Pipsmum]

I've found the forum o here for Sjogren's but it's Australian, so drugs etc will be different but will join, and I see there is a forum on bssa.uk.net/ but can't for the life of me see how you join it. lol

Ahh I've just seen a membership download form £25 and £30 for overseas. mmm can't afford it ...typical.

[Maggs3petts]

Its good Sjogren's have an Association. I joined RSA and PBC ages ago and its always helpful to read about the experience of others. (

[Plumcake]

Yes, its good to know it exist but if you want to join in you have to pay £25 membership I just discovered.

Which is a lot if you have very little income.

[Maggs3petts in reply to Plumcake]

So true Plumcake - it is a lot when on limited income. (

[Pipsmum]

Plumcake

I don't think BSSA have a forum yet. The subscription is to vote at annual conference and receive the member's magazine. I'm a member, and do enjoy their conferences, as I'm in the UK too (W Yorkshire). But I'm sure they don't have a forum. That's why I joined Sjogren's World, which is a very supportive site.

Kathyx

[Plumcake]

Maybe not Kathy, it's a registry, i got it wrong

sjogrensregistry.org/index.php

see you on Sjogren's world, when i join that

Annette x

[Plumcake]

Hi folks

I've been really unwell, I did try and post a week or so ago what kind of a week I had but I lost the lot, and couldn't be asked to redo, and should have made a word document.

Basically I lost my DLA claim not a sausage offered, not one point.

Had to pay a parking fee as I forgot to put my blue badge up. This had happened twice since Feb, so they wouldn't cancel the fine.

Then I had a woman crash into me while driving and all that has stressed me out. Luckily no one was hurt and Ihad a witness who came forward who saw the whole episode.

Then I supposed to have an operation yesterday but cancelled it as I am not at all well. I just had a call from the hospital to say they had a slot at the weekend, but I knew nothing about it as the letter never arrived.

I've had to stop the anti malaria pills (Plaquenil) as they were making my eye sight worse and felt so weak and nauseous.

Saw a lovely new doctor on Friday and he said "You were right to stop them, and I want you have another eye sight test, also some blood tests, as you've been on the Plaquenil.You should start to feel better in a few days."

So I've been loafing in bed for a few days and I'm back to square 1 with treatment.

I am on Facebook, so I may have a look to see if there is group page for Sjogren's on there.

The weather has been mostly wet and miserable, but had some lovely sunny days when I went out in the garden and photographed a lovely butterfly. A Speckled Wood settle on my strawberry plant.

[andongp]

Try SjogrensSyndromeSupport.org, which is one of dozens of online communities for rare diseases built by BensFriends.org.

[lupie-Cathy]

Hi there is a British Sjogrens Syndrome Association Forum on the BASSA website also there is a BASSA page on facebook it's well worth joining the association they do a brilliant magazine and have local meetings all over the country hope this helps

[jessieAla]

Plumcake

I hope you find a forum for Sjogrens. I also have Sjogrens and I find HealthUnlocked to be helpful. From my experience, these autoimmune diseases overlap a lot. Even though Sjogrens ANA is the only one which shows positive on my blood tests, I have psoriatic arthritis and symptoms of Scleroderma as well. The doctors I've been seeing in the Southeast US don't seem to distinguish between the specific autoimmune diseases, but treat them more as a general autoimmune "family". Symptoms of the multiple specific diseases may be evident. That's also what I find in reading the postings on HealthUnlocked. The autoimmune world is confusing to me because I want any illness I have to have a definitive description with set treatments and expectations. I've had to accept that I've fallen into a future of strange and frustrating conditions and significant trial and error in treatments. It does help me to know that I'm not in this confusing world by myself. I wish you well my friend.