Newly diagnosed...

[Toodlepip]

Hi, I do hope you all don't mind me joining you as I am in the UK but have recently been diagnosed with Sjögren's and been trying to find a bit more information. This is my 3rd autoimmune illness and I was diagnosed following a positive ANA with speckled pattern, positive anti Ro and anti La autoantibodies and various other tests and physical examinations. Am being treated with hydroxychloroquine for joint pain and taking it from there... is anyone else taking hydroxychloroquine and found it to be effective?

[SjogiBear]

Hello Toodlepip and sorry to hear that you have been diagnosed with Sjogrens. Have you been directed towards the British Sjogrens Syndrome Association bssa.uk.net ? There is some information on there but you have to become a member to access it fully - they do have a very good Helpline though which anybody can call.

I have been taking hydroxychloroquine for just over a year and to be honest I'm not too sure what effect it really has but then I don't have problems with joint pain as some people do. On the plus side it hasn't had any bad side effects for me either.

Generally the doctors can only really treat us symptomatically. You mention joint pain - what other Sjogrens symptoms do you have?

[Toodlepip in reply to SjogiBear]

Hi and thank you for your reply. Other symptoms are exhausting fatigue and fuzzy brain and I do have eye problems but everything is slightly clouded because I have graves disease and thyroid eye disease symptoms ( diagnosed in the last 3 months) and it was through the tests to diagnose that that this was found. I have always had joint pains but put up with them! Am being treated by a great endocrinologist for the graves/thyroid problems and a great rheumatologist for the sjogren's but I think there is probably some overlap in symptoms and knowing which they are attributed to. I also have coeliac disease. I have been told that if you have one autoimmune illness you are more likely to get others! Had chest and hip x rays last week and got a shoulder scan booked for next month. Follow up in August. They think it is Sjogrens rather than lupus based on my bloods and physical presentation. I do have a dry mouth - but not dreadfully. At least I am being well looked after by the NHS!

[SjogiBear in reply to Toodlepip]

Goodness me - sounds like you have a full-house there with autoimmune problems. I have APS alongside as well and have problems with gluten although am not actually coeliac. Did you know that there is a very strong correlation between coeliac and sjogrens? About 15% of people with Sjogrens will also be diagnosed with coeliac (against less than 1% of the population at large) - an even greater number will show signs of gluten intolerance. I have slightly dry eyes and mouth too and they fluctuate in the extent to which they cause problems - I use Hyloforte eye drops and VitA-Pos ointment at night which I find very good (I don't use them all the time I must admit). You can get these on prescription. I know some people use special toothpaste and mouth gels but I never have done as yet.

I have the brain fog and inability to concentrate well but I'm not sure what we can do to alleviate that! I also have problems with insomnia (which seems strange when we often get so tired) as well as digestive problems (IBS-C) and problems with muscles/tendons etc (difficult to get an exact diagnosis but this affects things such as my shoulders which don't seem to be able to stay in place properly as well as gut motility, swallowing etc). I've also previously had other internal problems such as pericarditis and kidney and liver failure (although that was as a teen not long after the disease set in - I'm 49 now.)

It sounds very encouraging that you have some good specialists on side - that is SO important. My rheumatologist is also excellent but unfortunately I don't think there is the same level of care at GP level and I find it hard work getting referrals onwards.

There are a few groups for Sjogrens on Facebook if you use that at all - it's quite nice to be able to chat to other people who understand what you are talking about!

[Toodlepip in reply to SjogiBear]

Sounds like you have had a rough time - glad you have got a good rheumatologist too. They did bloods for liver and kidney function last week. My dad has autoimmune hepatitis so it is all in the gene pool I think! It seems to be a very person specific illness in that, although there are similar features, everyone is affected differently. I guess that is what makes a treatment plan and regime difficult to get right - especially when new symptoms start appearing. I am 40 now but been coeliac for 20 years. I had put a lot of it down to getting older!! Thank you for all your advice it is much appreciated ☺

[Anna284]

Toodlepip

I was diagnosed with lupus 6 years ago although had dry throat, eyes, mouth and joint pains for many years. Also under active thyroid forever! Was aware that I needed more sleep than most but only developed CFS following the inner ear infection which triggered lupus. I managed to control the joint pains with panadol. However when overseas last year contracted a severe lung infection which triggered a massive lupus flare! I haven't been the same person since! I'd say for sure that you have LUPUS! Sadly my good Dr left the area as did the original Rheumatologist. I will have to find another who understands lupus. I'm 80 so doing okay! Thanks to many vitamins, healthy food and good genes apart from the auto immune ones! Wishing you health!

[Toodlepip]

Thank you for your comments and kind wishes - I did ask about lupus and the rheumatologist said it was less likely but the initial treatment would be the same so we will see! I go back next week for follow up and review. Wishing you well ☺