Sjorgrens Syndrome Fao Sqad

[kvalidir]

Hi Sqad, you asked me to update you via a new thread regarding the Sjorgrens Syndrome, and he's now had a positive lip biopsy result. He's due to see the consultant when he comes back sometimes next week as he's away til after the weekend, but any thoughts on anything he should ask etc or observations very welcome. Thanks x

[Sqad]

Hi! Kval.....I was thinking about you BF yesterday and wondering about the biopsy.
That has confirmed the diagnosis and he will be looked after in the U.S of A and now you know the diagnosis the www. will help.
I have little more to add other than that I appreciate the feedback.

If he is offered methotrexate then tell him to take it......once a week injections or tablets once a week.
Th americans kno what they are doing.

[LadyCG]

Two complications of Sjogren's are xerostomia (dry mouth) and xerophthalmia (dry eyes). Artificial tears and saliva can both be prescribed in the UK, so presumably this is the same in the US.

[kvalidir]

Thank you Sqad, he's pretty freaked about it but he's good at doing what he's told when he doesn't understand something by people who know better than him, so fingers crossed we'll know more next week about what they're planning and I'll keep you up to speed about things.
Out of interest since he has this auto-immune disorder and I have Diabetes and Hashimotos, if we ever decided to have children would that indicate that they might have a higher predisposition to auto-immune disorders or is it unlikely to make any odds?
Thanks for all your help x

[kvalidir]

Thanks NoM, it's his eyes and the lump in his throat that is mainly shpwing itself, weirdly his mouth doesn't seem that dry he says, but he also has arthritis in his wrists and hands.

[Sqad]

LOL...sorry Kval you would have to discuss this with a Geneticist, as I cannot answer you clear concern.

[kvalidir]

Thought not Sqad but worth and ask lol, I've been able to find out nothing about that online at all :) x

[LadyCG]

Kval, a child has slightly more chance of inheriting Type 1 diabetes from its mother than its father. Autoimmune disease can run in families, so yes, a slightly increased risk of your child inheriting an autoimmune condition.

Referral to a Clinical Geneticist will give you more specific info.

[kvalidir]

Thanks NoM, I knew about the increased risk with type 1 diabetes, that's one of the reasons I originally had decided not to have children amongst other things, but the Sjorgrens puts a slightly different complexion on it again, so I wondered if that increased it still more. x

[ethandron]

I believe it’s the other way round, Lady CG, more of a chance of inheriting it from the father than the mother, but I stand to be corrected.
Kval, one of my ‘almost’ daughter in laws has Sjögrens. Once your chap has got his head round it, he’ll find , hopefully, that it doesn’t have much impact on his day to day life, there are lots of things available to reduce the impact of the symptoms.
We also have type 1, crohns, ulcerative colitis, and hashimotos in the family,it’s a wonder any of us are still relatively healthy! My cousins daughter, who has crohns, and her husband who has hashimotos, have failed to conceive despite three rounds of IVF and are now about to become adoptive parents of two lovely little ones.
There’s always a light at the end of a sometimes gloomy tunnel :)

[kvalidir]

Thank you Ethandron, that's great to hear. I've got a very firm handle normally on my Diabetes but I get ridiculously tired very easily and he does too with the Sjorgrens, we could very easily sleep our way through life I think and never see one another. He doesn't seem too symptomatic except his eyes swell up, which everyone had put down to allergies including him, his hands and wrists hurt a lot with arthritis and so does his back and he has this lump in his neck/throat, so we'll keep our fingers crossed they can manage those symptoms.
Congratulations on the littlies, how lovely! My lovely ex was adopted and his family and are just super fabulous, it works so, so well xxx

[Eve]

I'm assuming he's had the joy of sitting with strips of special paper stuck out of his eyelids? :)

I have Sjogrens (and other autoimmune stuff including Rheumatoid Arthritis). I had issues with my eyes for quite a while before my mouth got worse. I'm on a biologic drug for RA, which I self inject, so that helps treat the Sjogrens too.

I have preservative free eyedrops (Hyloforte) and eye lubricant (Lacrilube) and have had special ductal plugs put in my tear ducts to try and keep more moisture on my eyes. The plugs have been really good so far.

A close eye needs to be kept for any eye infections which may need prompt treatment. I had some issues with Episcleritis.

If he needs glasses (I had to give up contacts, my eyes are too dry and they would just suck the moisture out of the lenses and it wasn't very pleasant) then make sure that he tells the person doing his eye test that he has Sjogrens and, if needed, makes sure his eyes are properly lubricated with drops first. Took me a lot of confusion over a number of eye tests with different results before an optician cracked it in that the dryness could affect the tests.

I'm on Pilocarpine tablets which are brilliant. More-so for dry mouth symptoms though. I'll cover things generally here (for me) and he can always refer back to stuff. Pilocarpine prompts saliva production, which may sound gross but it's not at all. Feels more natural. I've never been overly keen on the fake saliva (which is more gross for me) and never found the pastilles much help but everyone's different. I use over the counter dry mouth spray (Boots do a good one) but it's quite fleeting in effect.

Humidifiers can help a bit and I find some mints and sucky sweets can help a little for a quick fix. Lemon sherberts are good due to the fizzy bit inside. Glacier mints (more the fruit ones for me) too and I like the Trebor peppermint soft mints.

Obviously need to keep sweet stuff in check though for the sugar and impact on teeth. That's another thing, if there are dry mouth symptoms then he should speak to his dentist and let them know about the Sjogrens and have regular check ups.

I'd never even had a filling before I got a complex cavity late last year which the dentist linked to the Sjorgrens. It kept getting infected and had to be referred to oral surgery for it to be taken out. It was really miserable, including having to be off my immunosuppressant meds a lot (including six weeks to cover the extraction) which played havoc with the RA and other things.

I'm on special prescription toothpaste now to help give some extra protection for my teeth as the dryness takes away a lot of the natural protection that saliva gives your teeth. I know he hasn't got a dry mouth at the moment but it's well worth considering to try and prevent problems occurring.

Drinks can help a little but I can drink a large bottle of water and my mouth can still feel completely dry after. Mouth wise, how you sleep can have an impact. Sleeping with your mouth open if you have bad dry mouth symptoms can be an issue. I've woken up many a time with no moisture in my mouth and breathing funny as my mouth is so dry. Good to have a drink and dry mouth stuff on standby.

I also get some issues with facial swelling. My eyes are often really swollen and puffy when I wake up but go down. I get an uncomfortable swollen cheek sometimes with trapped stones in the ducts, I think, I'm sure Sqad will correct me if I'm wrong.

I hope this makes sense, I'm seriously sleepy and about to nod off on the sofa so I apologise if it's a bit rambling!

[anneasquith]

Eve, an excellent informative and articulate post, thank you . ( better than any medical publication ) .

[kvalidir]

Eve thank you so much, so much first hand information which I'm sure will be so helpful.
He's had swollen eyes for about the last 3 years, and has found his contacts uncomfortable but he ha to wear them sometimes as he's an actor but does have glasses for at home. Everyone said that he had 'allergies' and he has issues with his face anyway because he had some reconstructive surgery and had some rear teeth pulled when he was modelling years ago, but he gets issues with his teeth quite a bit as well. I took that at face value until I noticed a large lump in his neck / throat and asked Sqad for advice then nagged him to get himself looked at properly and thus the diagnosis.
He's got arthritis in his hands and wrists possibly I think in his shoulders and back too but hard to say as what he's doing at the moment is very physical and aches and hurts are to be expected. He's tired ALL the time but doesn't sleep well. He's always drinking water so I'm wondering if the dry mouth might be masked? more than anything it's his throat and eyes though he looks occasionally as if he's been stung by bees around his eyes but it does go up and down and sometimes he looks more or less fine.
I'll get back to you if that's okay once he's seen the consultant after he comes back as until then we don't really know anything but thank you once again I don't think I could have wished for a more thorough helpful post xxx

[LadyCG]

https://www.google.com/amp/s/medicalxpress.com/news/2016-05-role-mother-diabetes.amp

[Sqad]

CG....that is type2 diabetes........Kvali is talking about Type 1 autoimmune.

[LadyCG]

Sorry, wrong link. I think my eyesight is failing.

http://www.diabetes.org/diabetes-basics/genetics-of-diabetes.html

[ethandron]

It seems I was correct then, more likely to develope type 1 if your father has it. I thought I was as our youngest son is type 1 and it’s something we’ve looked into, especially as he’s at the stage in his life when he and his partner are thinking about starting a family.
Interesting that type 2 is the opposite though.
That’s a great post Eve, gives me more insight into what M, our almost daughter in law, has to put up with. She also uses the preservative free eye drops, I’m always finding the empty small plastic vials when they’ve been for a visit. We had to buy a new mattress to accommodate her painful back, and a pile of feather pillows, not that we minded in the least, she needs to be as comfortable as we can make it when she’s here.

[kvalidir]

Hi thank you both, that pretty much backs up what I was told that any child of mine would have a 1 in 2 chance of getting polyglandular autoimmune syndrome / Type 1 diabetes. I was just hoping that the addition of a father with Sjorgrens syndrome wouldn't make some sort of auto-immune disorder almost a inevitability :/ x

[AuntLydia]

kvaladir Has your partner had blood test for Rheumatoid factor? Is his arthritis rheumatoid or osteo? I have mild sjogren's due to RA which seemed to be made worse by methotrexate. When I started on a biological treatment for RA the sjogrens went into remission. It is a horrible thing especially the dry mouth. If his rheumatoid factor is elevated he should be on a DMARD + methotrexate. Prednisone would also help initially. PS I'm not a doctor just personal experience.

[ethandron]

Kval, maybe some advice from your diabetes team who may know a bit more about the whole genetics thing including Sjögrens? Would it put you off having a child if you knew the child would stand a good chance of developing both or either?