Sjogruns disease

Does anyone else have sjogruns which I believe I associated with RA. I have all the symptoms, dry mouth, hoarse voice, itchy eyes etc..

[sylvi]

Yes i have Sjorgens and it affects my eyes badly and i have a very dry mouth as well.xx

[Jillyanne]

Yes unfortunately I have it aswell,difficulties in eating because of the dry mouth Ect and really sore eyes BUT I am on a bio drug called Rituximab and most of my symptoms have gone 👍👍👍

It’s worth asking your nurse if you are not on a bio drug because seriously it has helped

[Georgiab123 in reply to Jillyanne]

Did you get it from hospital cause I’m having terrible trouble eating my weight is one other problem

[Jillyanne in reply to Georgiab123]

are You on a biological drug for your RA

[Georgiab123 in reply to Jillyanne]

No just methotrexate and gabapentin , iv got eye drops n ointment for eyes , spays for mouth

[Jillyanne in reply to Georgiab123]

all that makes no difference, it was the Biological drug that helped my sjorgens, still have a few little problems but nothing like before .

It’s worth asking your Rhuemy nurse about Rituximab bio drug

[Georgiab123 in reply to Jillyanne]

I’m seeing consultant on 24th il mention them to her

[Hidden in reply to Jillyanne]

No just inject 17.5 mg methtrexate

[Jillyanne in reply to Hidden]

I came off that , evil drug 😢😢

[K3-2]

Me too 😐 I have Lacrilube ointment and Hyabak drops. On HXQ and Leflunomide. Also have hay fever eyes atm. 😣

[juneann]

Sjorgens Syndrome is a dreadful condition where some days the eyes can feel so gritty and sore, whilst the mouth is so dry it can prove almost impossible to swallow and fluids always have to be available. I have found it to be some what easier since being put onto Rituiximab, however I still get bad days such as today. I find that when I'm having a particularly bad day no amount of drops help, but I personally get some relief from cool pads or cloths from the freezer laid across my eyelids. Lubricating eye drops are absolutely essential and something I only ever used when I felt the need, however an optician once told me that they need to be used throughout the day every day to keep the eye healthy. Chewing gum is good for keeping the salivary glands active, thereby maintaining oral health. Always keep up to date on opticians and dentists appointments, so important especially for eyes if on Hydroxychloroquine Sulphate (Plaquenil). Hope this has helped.

[Hidden]

I also have this although when I had a biopsy on my tongue they said it was more something called Sicca Syndrome, but in any case what I have is exactly like Sjorgens. My eyes are always dry and sore and I have to use Hylo Forte drops at least six times daily and more if they are particularly bad and also Clinitas Gel four times daily as well as Vitapos A at night time.Despite that I often have to visit the eye clinic for various other reasons, for instance, I have had ititis and ulcers in my eyes and have had many burst blood vessels in my eyes.

My mouth, tongue and throat get so dry that I can't speak properly and I feel as the inside of my lips are stuck to my gums etc. I get hoarse a lot and have to keep clearing my throat which can be embarrassing. I also get dry in other places of mucus membranes. It is horrible and yet another condition to cope with on top of all my arthritic conditions. I have often asked about being put onto a biologic but there is always an excuse about why they don't think I am suitable for it.

[Hidden]

Many of us have it. I would suggest that your go to the Sjogren's site and research it there. You will find loads of information there: healthunlocked.com/sjogrens...

[Hidden]

Thank you for replying to my question about Sjogrens. I realise now I have the symptoms I mentioned for years but only just found out it is a separate incurable disease,! How depressing! My rheumatologist has never mentioned it I had to ask about it. The medication I have, methotrexate. Is ineffective against Sjorgens.

[Trish1006]

Yes! I do too! Right now I am fighting an infection in one of my salivary glands in my mouth. I always take good care of my teeth and mouth. I use Biotene products which is toothpaste, mouthwash and mouth spray. It isn't fun dealing with this and don't wish it on anyone. Going back to the ENT next week. After a 10 days on antibiotics it is returning and swelling again. I just want to cry but don't.

[Hidden]

Thank you all for responding to my question o Sjogrens. Hadn’t realised it was so common. Looked at their website, so scary,!

[Flatstanley]

Yes I have sjogrens. It has badly affected my eyes. The constant dryness and inflammation has caused corneal scarring and macular odema. My eyes are very sensitive to light and I wear prescription dark glasses most of the time, I have wide side arms to help keep the light out. I have had injections into the eyes during the last year and it has helped a little bit. I find good old fashioned optrex eye wash soothing, and I have three different eye drops on prescription. A good sunhat is useful too. Dry mouth and nose is also a problem to me, I find difficulty swallowing dry foods etc. I see eye consultant twice per year.

[Hidden]

Thank you very much for your reply. It really is a horrible disease especially on top of RA which is bed enough.

[53alfriston]

Is anyone aware that dry mouth is the minor end of sjogrens In comparison to what it can do. For the mouth part, and I am not being unsympatic to what your saying. my eyes are so bad that more days then not,I can't do much. I have sjorgerms and for me the nightmare has been unbieable . Sjogrens has the ability to be far more aggressive. I have had a kidney transplant, auto kidney transplant and a nephectemy, and 2 heart attachs' RA, Osteraporis {i'm 2 ins shorter} and I have had 18 kidney stones, loin pain hemacuria syndrom, pernisus anemia, vasqulitis, and the list goes on. I am not complaining, but we have to educate more family doctors of this diease,and with tha the awareness that this disease will kill you; two years ago the last kidney startied to fail and I was told to put my affairs in order. 1 month later when I was as the renal ward, about to start dialics when the doctor came in and in told me that my creatin levels were back up to 46. 3 weeks later, we did an so tests that i couldnw's keep up, bottom line was I had abseses in my intestines, and even when it gets real bad I can't take anti inflamitories drugs because of the kidney. Thats when I found out that severe case the sjogrens attacts the organs to, all of them, thats the reason my bowel doesn't work, I have had 2 heartattachs, and a strok. all caused by sjogrens, I have no recourse, when the kidney, or the heart are affected again I have decided not to go through with any more sugurys simplely because they wil never give me a kidney from a new donor. this not a pity party but a wish that the doctors and nurses would get it together and stop thinging that were all a bunch hyporcondiac . My life has been a nightmare for 31 of my 62 years. I have become a bit {OK, a lot} cynical}, and not much fun. So all I have now doesn't seem so great, but I try not to live with regret and why me's, I try to spend as much of my time left living in the moment. Guys, thanks for allowing me to vent. Good luck, and I sincerily hope they find the reason and non of you or yours ever have to do what I did. Again no pity party just wanting you to be aware of just what this syndrom ca do.

thats again

broken in bedford

[helixhelix in reply to 53alfriston]

You sound as if you have had a very rough ride. I hope that things stabilise for you and you can continue in peace.

I'm certainly aware that Sjogrens can be nasty, and you really seem to have an awful one. All of these systemic diseases have the ability to go anywhere in your body, and it is the most frightening thing to me. My sjogrens is secondary to the RA, and seems to have responded to the drugs alongside the RA symptoms.

But a good reminder that we don't take these drugs for nothing.

[Imom in reply to 53alfriston]

Sending warm, gentle hugs and wishing you a good day.

[Nuttree]

It was suggested at my last RA appointment that I might have it also. I see her again next Thursday, so I hope to get the answer. FIngers crossed if I can still cross them!