My big discovery. Sjogren’s UCTD Fibro…

[IsleofWight1]

in my constant quest for understanding so I can help myself I have made a big discovery. About 5 years ago I was diagnosed with Sjogren’s and I understood to be Raynauds, and dry eyes, mouth and vagina. This never sat comfortably with me, it didn’t cover my symptoms. I’m still struggling a lot with aches pains and massive fatigue at the moment and it’s taking a toll my ability to cope, but

to day I came across the US Sjogren’s Foundation, Sjogren’s.org, and I was amazed to see: it described me! Such a relief. I kind of feel validated.

I’ve also been diagnose with UCTD / lupus. I realise these autoimmune disorders have a lot of overlap and undefined edges but I’m actually relieved to find something I can really relate to. I’ve now got s o me w

[OldTed60]

I have both Sjogren’s and systemic sclerosis but was diagnosed with Sjogren’s 8 years ago and more recently the scleroderma. Prior to this I was misdiagnosed with RA but my sudden onset Raynauds was ignored by rheumatology 13 years ago.

Having long read up I have been dismayed over the years at the way my various rheumatologists have ignored Sjogren’s or view it as a minor inconvenience compared to RA, Lupus etc. Although now I have Scleroderma I admit all these others seem relatively minor to me because of the rapid way my systemic sclerosis has progressed compared to them - which seemed to stabilise. My Sjogren’s has gone from being classed as primary to secondary/ associated which makes no sense really because I have both. My Sjogren’s usually bites me if I get complacent about it and forget to use oestrogen pessaries or eye drops as much or I need time off mycophenolate and my sinuses dry up horribly and I get really dry below and this has knock on effect. Sjogren’s is a systemic autoimmune disease and just as bad as all the others and we and our doctors forget this at our peril so I’ve learnt! Glad you feel more validated. Sjogren’s UK (former BSSA) is a good resource with an excellent helpline. bssa.uk.net/

[BonnyB in reply to OldTed60]

Can I ask please is the mycophenolate for sjogrens? I seeing rheumatologist next week so getting geared up for that . Thank you x

[OldTed60 in reply to BonnyB]

Mycophenolate is an immunosuppressant originally used for patients to prevent rejection following kidney transplant. So it’s relatively big gun and I wasn’t prescribed it until I was antibody positive for systemic sclerosis. The first line and often the only systemic medications Sjogren’s patients are offered is hydroxichloraquine. I didn’t tolerate this or others from same family of disease modifiers but Mycophenolate has been a game changer for me.

[BonnyB in reply to OldTed60]

Oh ok, that's interesting. I'm on hydroxychloquine for lupus, sjogrens was diagnosed later. Thank you x

[OldTed60 in reply to BonnyB]

I think for many of us with overlaps, Sjogren’s becomes interchangeable symptomatically. I noticed when I was here on the Lupus community more that many blame everything on their Lupus, same with RA. Less so perhaps where Sjogren’s and scleroderma often come together. I think perhaps Sjogren’s is taken more seriously with scleroderma and often brings secondary Raynauds. For me I can distinguish which is which mostly by neurological issues being Sjogren’s and my more severe vascular and fibrotic issues being scleroderma. But having a disease causing fibrotic/ scarring internally and out as well as a disease causing various nervous systems not to work properly is the pits. I count myself as lucky to qualify for Mycophenolate now because I do feel it’s prevented more systemic damage from both

[BonnyB in reply to OldTed60]

Good to hear ypu are on the correc treatment. It must be terrible. Yes, I agree, it's hard to distinguish what's lupus/sjogrens. I'm getting better at ot though x

[BonnyB]

I absolutely agree with both of you. Sjogrens is a vile disease to live with. It impacts my life so much on a daily basis. When ENT diagnosed me he was astounded the rheumatologist hadn't diagnosed it. Telling it really is a horrible thing to have, as it affects every orifice in your body.

The medication I use several times a day is tedious and relentless , having to carry it round with me is annoying., items downstairs, in bathroom, bedroom. My routine to get ready in a morning lengthy. Eyedropper, mouth spray, mouth pastilles, mouth gel,nostril spray, vaginal moisturiser, estrogen suppositories, laxatives....

The consequences of missing these routines are, eyes glued together, blurred vision which gives headache, unable to breath through nose, dry ears, they bleed, mouth so sore and dry and painful( every bit of mouth, cheeks Tonge gums, throat) , unable to eat , can only manage yogurts, custard etc as I choke on food. Now the area people don't want to discuss but I must. The dryness of vagina inside and out, sore on the outside, burning, friction just to sit down and walk hurt. Cystitis and infections. Intimacy with my husband. Constipation, feeling bloated, and finally the amount of fluid intake means I'm constantly needing the loo so always have that in my mind when I'm going anywhere, planning and prepping all the time, it's draining. I feel like all the spontaneity has gone from my life.

Of course I know there are people with far worse diagnosis than me. But this is my life that's affected and changed and I'm so bitter about it.

Don't let it be dismissed. It's a truly awful thing to live with xxx

[MrsMarigold]

Hi IsleofWight. I have lupus, Dysautonomia Erythremyalgia and sjogrens. The overlap of it all ( also neurological problems due to damaged cervical spine) —the overlap is exhausting to treat. I’m glad for you that you have found validation of your diagnosis as this helps acceptance and self love. It stinks to live with these issues but the way I see it is most of us eventually “get” something AND more friends and acquaintances that I know have died in this decade of my sixties. I’m grateful to enjoy every day. Even if it’s in my bathrobe!😂MM

[IsleofWight1]

Once again thank you for all the replies. I don’t know how you keep on top of what is going on with your body and why.

I feel quite sobered after reading your stories. Although life changing, my symptoms seem like nothing compared to many of you. So, 2 things I take from your stories on this site,

1. So many people suffer so much from these diseases. It’s almost like it’s hidden though. Mention Lupus, Sjogren’s, UCTD and the myriad of other diseases and most people don’t know what you are talking about.

2. I’m only just starting out on this journey that we didn’t want to take, and I find all that I’m learning is just too overwhelming and scarey. I think I have to come off of here for a while