Do any of you have secondary Sjogrens?

I have this secondary to my scleroderma/PBC. My eyes are very dry and i use viscotears for them. My mouth is also a bit dry, and i have developed cracks on my tongue. I really now cannot eat spicy foods, and even salt/vinegar/mint can be sore. Does anyone else have this?

[Vickisu]

yes, and after having an EMG, I was diagnosed with mononeuritis multiplex also. So with the regular symptoms of sjogrens (dry mouth,eyes, sore joints) I am also numb in all four limbs...not just my fingers when they turn purple from raynauds. I think there's a lot to these autoimmune diseases that we just don't understand. I know I certainly do not.

[Anteater]

Yes, I also have Sjogrens secondary to scleroderma. Dry mouth, I stay away from spicy food and do not drink alcohol anymore as it makes me dry. I drink loads of water and use flouride toothpaste and a flouride mouthwash that I use once a week. Regular dental checkups and Hygiene is a must. My eyes were very dry and gritty, I use Hylo Tear drops during the day and Lacri-lube eye ointment at night. After my last visit to Moorfields I had plugs put into the tear ducts and these help the tears from draining from the eye. I must say that my eyes dont get so dry but I still have to use the drops. I also find that my nose is also very dry get very tired and really fed up with it all.

[Hidden]

I must admit i,m not getting on very well with alcohol, it makes me feel very dehydrated and dry in the mouth. Beer and cider are practically a no no now as they bring on such bad headaches.

[lynbw]

Hi inkedup , i have secondary sjogrens that affects my mouth more than my eye's . the dry mouth drives me up the wall .i cannot drink alcohol at all and have had a cracked tongue for years . my eye's in summer are worse than in winter .there are so many different illnesses connected with scleroderma they seem never ending , best wishes to you lyn bw

[creditcrunchie]

Hi inkedup - I too have secondary sjogrens and it isn't much fun. I use eye drops as and when I need too but my nightmare is when out of the blue I will suddenly get a hay fever type of attack (never been a hay fever sufferer but when some type of pollen is in the air with a windy day being the worst) I cannot see at all. I always carry sunglasses, anti histamines, pain killers as it is just so painful and it is scary when I can't see especially if I am driving. I too have the oral problems and it has caused loss of teeth, I find using oraltene toothpaste and in particular the mouth wash has helped enormously. The mouthwash used regularly and especially at night time seems to help keep the bacteria away and gives the mouth a chance to recover. Only problem is the products are expensive about £5 for toothpaste and £10 for the mouthwash.

[136824 in reply to creditcrunchie]

Hi I also have dry eyes & mouth but I am able to get toothpaste on prescription from my dentist & biotene mouth gel on prescription from my doctor.

[Pipsmum]

I have primary Sjogren's, as well as Raynauds and various other conditions. I am in the UK and just wanted tot ell you that you can get Biotene Oral Gel on prescription. It is only available for Sjogren's and cance patients, and it is really good.

Kathy

[Hidden]

Thanks everyone! Some good tips.

[creditcrunchie]

Hi again

Sorry I got the name wrong and Pipsmum is spot on with the correct name of Biotene

I am not one to wax lyrical but I have really found the mouth wash to be excellent and if you can get it on prescription then that is even better news.

CC

[MInerva]

Hi inkedup. I have Sjogren's and have Duraphat double fluoride toothpaste on prescription: this helps protact the mouth against bacteria. I use Celluvisc eye drops in unit doses( I usually manage to make one vial last a day) and simple eye ointment at night. Hope this helps!

[BIGI]

I have found that if I spray Biotene Mouth Spray in my mouth before I go to sleep, I sleep longer before needing it again.

[patsyb]

I have a very dry mouth especially at night, I have found a sugar free pastille put in the mouth just before going to bed helpful. They are called Salivix, you can get them on prescription. Best est wishes to all

[SheriFrost]

I have had it for a while now. Recently my doc said she is beginning to think it might actually be primary. Hw are y feeling?

[Hidden]

Difficult to tell what's causing what as i have PBC, Scleroderma and hypothyroidism, but with this i have very dry eyes, and a 'cracked' tongue and saliva gland trouble. I guess for primary you would be more likely to have antibodies too.

[Suze932]

Yes, I have secondary Sjogrens (probably drug induced as I take lots of meds) which affects taste and swallowing as well as eyes. I have viscotears morning and evening and Celluvisc single use drop vials for the rest of the day. Have had to change my eating habits as unable to swallow dry foods like biscuits and due to gut involvemrnt with Sclero I have to avoid spicy foods, chocolate and eating late. Pulpier foods are easier to get down but I also use a dry mouth spray and or dry mouth gel Biotene, prescribed by the dental hospital as also having dental problems!! Good luck in sorting out the dryness, it's a real pain!

[8whitetoes]

Omgosh 😱😖😖😵 Yes ....

My older sister had the ...,**most horrible split's and Cracks in her tongue 😢 .... And I believe All 9 siblings have **Sogernes** from mild to very bad !!! I'm #7 and all my elder siblings ..., Have Had **Extensive Dental Work** ..., And before age 50 EVERY ONE had TOO have all their teeth pulled ...., An either have implants or denture's... Some of my young nephews and nieces at age **15yrs** old .... Have Dental implants... One **Great Nephew** at 27yrs. Old, had TOO have all his teeth pulled !!!! Two yrs. ago ..., An **ALL** of his incisions ..., Had already been replaced with implants by the time he was 14 yrs. Old............

........ yes we have 3 generations ..., ALL positive for **Scleroderma** ....,

I take that back ..., Actually 4 generations ..., Now .... We have an Uncle that was diagnosed with **Scleroderma** back in 1940's...... By the time he was 45 yrs old ..., He was confined to a wheelchair....

(Just a little FYI ..., About family history..., And Scleroderma..... )

Now ...., How weird is all of that ???!!!???

I even have pictures .., of 6 generation Grate Grand parents ...., That appear to have *Scleroderma* {{of course it could be a bad case of **Rhematizem** ..., An it is Way way Back ..., (That would be pre-civil war) .....

Bless your heart....,

I know my sister had a difficult life..... She was alergic To so many foods TOO..., She Had too be VERY VERY careful, of what she eat on a *daily basis* ....