Have been told they think I probably have Sjogrens but blood test not conclusive!

Allergies, blood and immune system
1

I suffer really badly from dry eyes and been told to have puncual plugs, do they work?  I now also have very dry lips inside and out and constantly using lip salve and sucking chewing gum, any other suggestions? Does anybody else have leg cramps associated with this? D

Also does anybody suffer insomnia too?  Sorry lots of questions but new to this and not sure what symptoms to expect or just nothing to do with Sjogrens. Thanks

2

Hi Amanda,

Yes the plugs do help. I had my 1st set put in when I was 29. Then last year my eyes started to play up again at age 55. Went and had my eyes checked and plugs had come out. Since had them replaced again. I personally would no be without them.

Mandy x

3

Hi  That was quick.  I didnt realise they lasted so long and sounds like they definitely helped so will have a go I think as really affecting my eyesight nothing is clearly defined even with new glasses! Thanks

4

I also suffer from insomnia though I'm not positive it's related to the SS.

As far as punctual plugs, I was also offered them but decided against it since from what I've read if you have inflammation issues as well that affect your eyes (as I and many SS sufferers do) it can make matters worse as the toxic tears just remain in contact with your eyes longer. Additionally, I've read the plugs make dry throat and nose matters worse as well as the tears can't drain to those areas.  

9

5

i take half valium   i suffer so much with my dry mouth...So sllep ineed  i want salivaa pills  are theyok??????

6

Hi - I'm being tested for sjogrens also. I have very, very dry mouth, sore lips & my lips split on each side sometimes. Also my tongue hurts quite often & other places inside of my mouth. My eyes are only a little dry, but my vision has changed & I have appt. to see about them. My doctor prescribed Cevimeline for my dry mouth & it helps (take 3 daily). I also use Biotene toothpaste, mouthwash, gel & spray. Act also has these. This helps also.

RVlady45

7

Thank you that is really helpful.  I am seeing the Dr shortly so will ask about it and look out for the toothpaste. My vision is not good at all and awaiting appt for consultant re the plugs.  Is your vision blurry nothing is clearly defined most of the time even with glasses.?  Does it at times make you feel sort of lightheaded by any chance too?

8

cant release mucous panick dy mouth please helpxxxxx

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Amanda- dry eyes can cause blurry vision from what the eye docs told me. I have this as well. Good luck with the plugs, let us know if they help.

10

After double cataract operations I went to the optician yesterday to have my sight tested for new glasses.  The Sjogren's has been a lot worse since the operations and my usual drops not very effective.She thinks I am probably allergic to the antibiotic drops prescribed at the hospital - very helpful!  I asked what eye drops would be best to help the intense dryness and was told that tears are made up of water and oil so you really need a viscosity test to be able to choose the most suitable ones.  I have been referred back to ophthalmology but meanwhile will try one of several that were suggested.   

11

Have you been diagnosed with Sjogrens? If so, how were you diagnosed?

The Rheumatologist I see is not all he should be. He's only taken blood work. I have very, very dry mouth & tongue burns so I use the Biotene products & it helps. I also rinse with Nystatin. The only helpful thing this doctor has done for me is putting me on Cevimeline to help me with  saliva - it helps a little. Hope you get help.

Celia

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Hi Celia,

My was done by a blood test only.

Regards,

Mandy

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Thank uou AMand  what is cemimeline?Is itfor saliva  are  are ther any side affects????It helps ????The diagnosis is blood tests i need more  i sdont trust the first ones 2 month ago and i have gotten worse..I do not understand why it takes sometimes 2 years for positive results.. I looked up. My throat is not good with mucous and dryness....The biotene I use all products and seem  it does not work all the time.. Can you advise me how to gain weight lost 12 lbs and im thin//////////Do you eat meat??or sweet potatoes? I was eating a lot of mayonaise in fish.   maybe mucous????  thnk you my friend

 

14

Hi Celia

​does Sjogren also give a burning tongue? I tested positive for sjogrens ..was on Plaquenil and after 6 weeks my nose wouldnt stop running and I had excess saliva (would spit it out as swallowing made my reflux bad)...so I stopped the Plaq....however my burning tongue ( 24/7) never goes away..the Rheum didnt tell me this was due to sjogren's...neither did the ENT or the gastroenterlogist I have been seeing since April... The Rheum had muttered previously something about nerves being affected and needing more blood tests...Do the Biotene  products get rid of the burning tongue totally? 

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Not totally with just the Biotene, I also swish with Nystatin (this is a script & works well). Also - my mouth is so dry my Rheum has me on Cevimeline to help me have more saliva & it helps some. This is a script of tabs.

How were you tested positive for Sjogrens & how long did it take to get a diagnosis? Did they do a bottom lip biopsy? Thanks for responding to my post. Celia

16

I'm sorry suncat - the only way I know to gain weight is eating & drinking things with a lot of calories! Yes, I eat chicken, beef steak, pork & fish. Yes, I also eat sweet potatoes & baked potatoes. I'm thin also because I have chronic diarrhea from losing my ileum when I had 2 emergency colon resections in 2007 & almost died. I use the prescription of Questran (it's a powder you mix into something to eat, but I still have a lot of diarrhea.)  My weight goes back & forth every day - depending on how many bouts of diarrhea I have each day. I'm at 107 lbs. right now - but have been down to 100 lbs.

The Cevimeline is a script - it's tabs - I take 3 a day.

 

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I was getting swollen wrists,knuckles , and also1 of my elbows...got reffered to a rheum who said ..only reactive arthritis and gave me Arcoxia...when i developed skin lesions he said only mild reaction...i stopped med but the lesions spread..(later dignosed as Pityriasis Rosea)..i was also seeing a pulmonologist on a different matter who on seeing my skin reffered to another rheum ,who at my 1st consultation said I had Sjogren's...blood tests confirmed..he also wanted a lip biopsy but I chickened out and after 6 weeks my saliva was back to normal anyway,so i stopped the Plaq.Now left with burning tongue and desperately trying to find something to get rid of it..I will try the Biotene and Nystatin...thanks

18

Why do so many of us seem to suffer from burning tongue?

How is this related to the Sjogren's?

19

Hi Shirs,

My tongue is always burning, and if I use mouth wash even though it is alcohol free it still burns. I use the biotene mouth rinse.

Regards

Mandy

20

But why exactly does this happen?