Primary Sjogren's Syndrome

[sazzyb]

Is there anybody on meds for it, eg Plaquenil? Or any recommendations for a particular med? I'm off to see my GP later in the week because I'm fed up of the severe fatigue / joint pain, but I'd rather go armed with a suggestion or two rather than just the usual blank expression on my face.

[jayfer]

Hi, Is SS sjorgrens ( unsure of spelling)syndrome? If so I was told medication is same as for Lupus ie plaquenil. I have mild lupus and sjorgrens and am on it, plus eye drops. Sorry can't be of more help, hope you get sorted at GPs

[sazzyb in reply to jayfer]

Hi jayfer, it is, sorry. I don't know why I put SS - senior moment I think! ( I've changed it now.) Yea, I've got the eye drops too, and painkillers, that's about it. I've struggled for years with this awful fatigue but am fed up now and need to get some help. Thanks for replying, hope you're doing okay? x

[Shadows-walker]

Hi I have sjogrens was on hydrocholquinne and it made the fatigue go away ,and was brilliant and was on amitriptyline ,and folic acid , but was taken off everything in jan except folic acid , became very breathless. And my eyes are bone dry so the rummie took me off the lot . He's now started me on duloxtine which has helped with the pain am waiting to go back on hydrocholquinne or one like it but have to see the eye specialist first , amitriyline is a great muscle relaxant and great help with the sleep issues we all seem to have ,but it drys us out ,so that no good for me , but I haven't had a full night sleep since I came off it I hope ,the tingling pain we have is much improved as are the headaches , I am also on eye drops and mouth spray , don't use mouth wash as it can damage your teeth ,also I have been told I should have tear ducks blocked ,hope this helps Chris x

[sazzyb in reply to Shadows-walker]

Hi Chris, interesting post, thank you. My eyes are worse than my mouth, they drive me bonkers, same as yours bone dry, so painful and always tired. I've been on amitriptyline before when I had carpal tunnel but it made me too groggy in the mornings (damn - I'd pinned my hopes on it for some decent kip, lol). I wondered about the tingling, wasn't sure if it was low VitB12 or SS, or could even be both. The dentist told me to use only Pro-Namel mouthwash and toothpaste, it's more expensive but worth it I suppose. Re your tear ducts, isn't it amazing how opinions differ, the eye doc advised me not the have it done but I never thought to ask why at the time. x

[behappy1]

I take plaquenil, plus herbs from an autoimmune specialist in Brighton. Look up Avicenna, Mazin.

My rheumy and GP gave me saliva gum drops, hypermellous & liquid gel, saline nose spray and vaginal moisturiser. However none of these products took the edge of my symptoms. Only very temporary relief. My eyes and mouth dryness literally happened over night. It was seriously affecting my quality of life.

The herbs helped enormously and I can now go days without sensing any dryness.

I think the other things to check are vit D levels, RA levels -also try drinking oils. Coconut, or flaxseed. That has helped me.

Best of luck x

[sazzyb in reply to behappy1]

Hi behappy, has the plaquenil improved your fatigue at all? I'm ok with my mouth at the mo, (fingers crossed it'll continue) during the daytime, I chew gum to keep the salvia flowing, but gradually overnight it has become bone dry. My eyes are a nightmare, I've got blepharaitis as well so they're always dry as a bone, painful and burning, every single day. I get burning rashes on my face, body and legs along with painful joints. I've put up with it for some years but now I'm fed up and want some help. Funnily enough I've just ordered some Vit D, but flaxseed I can't take, it cripples my gut and leaves me doubled up with pain and nausea. I have no idea why, the woman in the health shop was puzzled too, so I take pure fish oil instead. I'm always interested in herbs so thanks for the tip re Avicenna, Mazin, I'll have a read up on them. x

[behappy1 in reply to sazzyb]

I think the plaquenil does help with the fatigue over time. Needs to build up though. However, it didn't prevent the dryness. for me the dryness started about 3 years after I'd been on plaquenil.

I'm sorry to hear your having a rough time. I really sympathise. For me the eye dryness was very bothersome.

Glad your taking fish oils. That should help. Another alternative to add is coconut oil, if you're able to your diet. These all moisturise the tear and sweat glands.

Also, you may want to get the dryness in your eyes tested by the optician. You'll then get a referral to hospital who might give some advice. I know in the US you can get better drops which last all day. X

[behappy1]

Ps. I forgot to mention that there is another drug that you can be given - something like pilcarin??? But apparently it makes you sweat a lot and edgy. Also I was told if my eyes got dryer, they could put plugs to retain moisture longer. However I never tried any of these as the herbs did the trick.