Sjorgrens: Has anyone had any experience with drugs... - NRAS

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Sjorgrens

Callabag64
Callabag64
17 Replies

Has anyone had any experience with drugs that increase tear production. Have recently seen that there are drugs called Pilocarpine and Cevimeline, and am desperate to get something that helps.

17 Replies
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J1707

There are so many tear drops . It’s trial and error. sno tears are good. What works for me is a warm damp cloth on the eyes then tear drops them petroleum jelly (vaseline this is what made the real difference for me)

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KittyJ

Have you spoken to your doctor about this Callabag? They are the best ones to advise you on what would be best for you. I hope you get some relief soon.

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Callabag64
Callabag64
in reply to KittyJ

Been to opthamologist at hospital5 times since May. Not much has changed

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KittyJ
KittyJ
in reply to Callabag64

Have they not told you what to use?

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Callabag64
Callabag64
in reply to KittyJ

Yes KittyJ been using cellovisc drops, theoluz duo drops, vitapos at night, heat pad, bathing eyes, you name it, I have done it.

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Nsmith13

Hylo forte and vita Pos

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Callabag64
Callabag64
in reply to Nsmith13

Got them

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hedgehog45

I have this too so sympathise as it’s very uncomfortable. I have tiny silicon plugs put into the year duct every 3/4 months to help keep tears in and it does help. Maybe speak to your doctor about it. In addition I still use hyloforte drops during the day (several times) and xailin gel at night, both on prescription. Without using these every day it would be awful. Hope this helps

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Callabag64

I already have tear duct plugs and using vita pos, thealoz duo drops heat mask etc

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hedgehog45

Sorry that should have said tear not year!

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juneann

Don't use vaseline on eyes, there is a similar gel meant for purpose to be used at bedtime, speak to your GP.

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Redrooster

So pleased that it’s not just me. I thought it was fumes from make up bouncing off my glasses into my eyes. Will take all this information to GP.

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puffyface

I use hyloforte...and hot compresses...but my eyes still hurt. Rheumy suggested Pilocarpine...but it increases ALL. fluid so apparently sweat a lot too! I haven’t gone down that route...but 2 weeks ago had to see eye doctor because of taking hydroxy for so long and he put eye plugs in...I think they last for a few months. It’s been amazing! Can’t think why nobody suggested it before now!

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Callabag64

Already got tear duct plugs

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poemsgalore1

Iasked about Pilocarpine and the rheumatology registrar said they caused more problems than they are worth. He suggested Punctal plugs, but I didn't bother. Visit the British Sjogrens Syndrome Association. BSSA (https://www.bssa.uk.net/) You can call their helpline for advice. To contact BSSA please complete the small contact form below, alternatively call the office on 0121 478 0222 between 9am and 2pm Monday to Thursday.

The helpline is open 9.30am – 4.00pm Monday to Wednesday and 9.30am - 8.00pm Thursday and Friday. The helpline telephone number is 0121 478 1133. Please note, the helpline is for help and support only, for all other enquiries please call the BSSA office on 0121 478 0222.

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RAreyna

The only thing that works for me is serum tears. I tried drops, gels, and duct plugs, but still couldn't produce tears on my own.

Years and many doctors after I was first diagnosed with Sjogren's Syndrome, an eye doc asked if I was willing to try serum tears.

I get 4-6 tubes of blood drawn and it's sent to a specially lab that spins it down and makes six months worth of serum tears out of it, with other ingredients. Because my eye recognizes the serum as my own DNA, the tears are absorbed, instead of just forming a barrier against air.

The serum tears have to be kept frozen until used, then kept in the refrigerator. They're used like any other eyedrops and I can now produce tears of my own and my eyes are no longer red and painful. I'm in the US, and they're paid for by my insurance.

Hope this helps! They've been somewhat of a miracle for me.

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Callabag64
Callabag64
in reply to RAreyna

That’s very interesting, but doubt very much that that would be available here in the uk.

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