Possible sjogrens

[Nellies47]

Hi.

I'm not sure if I can post about this here.

I have autoimmune liver disease, PBC, AMA positive. And autoimmune inflammatory arthritis.

My rheumatologist feels I may have sjogren's. I have dry eyes and mouth, sore ears, sore jaw and swollen glands under my jaw, painful joints in hands , feet, ankle and wrist, muscles aches and weakness/numbness in lower limbs.

Also debilitating fatigue, which I know is part of my PBC.

I'm serum negative for sjogren's, I had a wedge lip biopsy 3 weeks ago. My ENT dr. phoned and left a message that it has shown atrophy of salivary glands and insignificant inflammation. He sent the results to rheumatologist and I'm waiting to hear what that means.

I'm on plaquenil and a months corse of steroids at present and feel a bit better.

Do any of you know if the biopsy result is sjogren's.

Thank you

[hatshepsut]

No idea, but I do have sjorgrens, and hope that you get the help that you need. Good luck! x

[Nellies47 in reply to hatshepsut]

Hi .Thank you.

Do you mind if 8 ask what treatment your on and if our symptoms are similar.

Thank you

[hatshepsut in reply to Nellies47]

I am on hydroxychloroquine, plus MTX and Upfacitininb for RD. I have hyloforte eyedrops daytime, and xailin night gel for night time. Have used various mouth gels and sprays. I always carry a drink with me.It can affect any parts of the gastric system, and organs.

But don't worry unduly, most things can be mitigated with the right treatment. Take care x

[Nellies47 in reply to hatshepsut]

Hi.Thank you. Lovely to hear that.

Yes I'm worried at moment, I'm off work for past month and and will be for another while. I'm hoping the increase in plaquenil and now steroids will give me a break from the joint pain.

Take care.

Nelly

[Hidden]

I’m not technically knowledgeable enough to know about your biopsy results but I also have Sjogrens. It affects my eyes & all mucus producing areas of my body, particularly the nose, mouth, throat & salivary glands. I take 5 different types of eye drops/lubricants (3 day time & 2 night time) & am never without a bottle of water. There are sweets/pastilles that you can use which are supposed to help with lubricating the mouth but they didn’t work for me. Haven’t yet tried any of the sprays as yet. If my mouth gets too dry it affects my speech & I can’t eat anything without having some sort of drink as I am unable to swallow without the extra liquid in my mouth. I have found that caffeine aggravates the Sjogrens terribly so have switched to caffeine-free drinks. Hasn’t solved the dry mouth issue but it has made a noticeable difference.

I also get Parotitis fairly regularly (once or twice a year) which presents with symptoms identical to mumps but without the underlying infection that causes mumps. It’s purely caused by inflammation in the large salivary gland (Parotid) just in front of & below your ear. Hurts an awful lot & whilst it will go away on it’s own, treatment with anti inflammatories such as NSAIDS or steroids which bring the inflammation down a bit quicker. Hope you get a diagnosis sorted out ASAP x

[Nellies47 in reply to Hidden]

Hi.Thanks so much for the reply.

I've had the ear pain, very painful.

I'm on 3 different eye drops. Some days I feel the drops actually make my eyes feel worse.

It's interesting re caffeine, I probably should try without.

Does it affect your stomach and bowel.

I am having a lots of problems with mine.

[Missjosefina in reply to Nellies47]

Hi Nellies47

I'm not sure if you've had an update about your diagnosis but wanted to reply to this particular question...

I'm literally days away from hearing back from my Rheumatologist. I rang the secretarial team with an interesting discovery that delayed my letter being sent out this week. Essentially I found a GI summary about the colon and sigmoid biopsy I had in Nov 2015. It included an incidental note about elevated IgA deposits than normal limits but that it had no significance to his Gastroenterology considerations.

Turns out it was nearly twice the normal limit. Instead of offering any suggestion to have this investigated by another specialist, he said it was probably IBS-D. I've spent the last 6 years managing this with FODMAP...until now! Even the foods I used to be able to tolerate now upset my stomach. Along with the other symptoms I suffer with a flare up, I'm also bloating and swelling (does anyone remember the 1990s X-Men film when the senator bloated up with water, before exploding? I feel like that!).

Even though I met the GI consultant in May 2015, i remember being very upset after my first appointment, when he said it was 'impossible' for me to be suffering with almost constant diarrhoea flare ups for 6 months and yet be gaining weight. I also found his summary from that first consultation where he referenced the referral notes of pain in the sternal area and accompanying reflux. No scans - or even clinical assessments - were made then to see what may be causing the sternal pain. However, now I'm waiting for an ultrasound appointment to confirm that my spleen is currently enlarged (the same time I'm waiting confirmation of either Sjogren's / Lupus or IgA Vasculitis)

So, I'm glad that your salivary gland biopsy has been forwarded to the Rheumatologist.

Wishing you well!

Jo

[Hidden]

Oh no, that’s a shame 😔 Thankfully my stomach & bowel seem to tolerate most drugs. In the 20 years that I’ve had RA and it’s associated ‘gifts’ there’s only been one antibiotic that has given me a poorly tummy. I’ve had a few minor side effects when starting new drugs (headaches & the like), but they only usually last for a few weeks & then my body adjusts to the drugs. I’m very fortunate to have a constitution that can withstand nuclear war!

[Nellies47 in reply to Hidden]

Hi.Thank you for the reply.

Nelly