sjogrens: Hi, I have RA. and Sjögren’s syndrome was... - NRAS

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sjogrens

Swanfull profile image
39 Replies

Hi, I have RA. and Sjögren’s syndrome was wondering if anyone is taking any medication for this, mainly dry mouth , I read somewhere that Hydroxychloroquine helps, any advise would be grateful , thankyou x

39 Replies
Deeb1764 profile image
Deeb1764

if you have been told RA and Sojerns then I am surprised you are not On medication was there a reason you were told by consultant that you would not be given medication as all on here with RA I believe are On meds to stop Progression.

Not a doctor but think you need to speak to your RA team for more info.

KittyJ profile image
KittyJ in reply to Deeb1764

I think swanfull is asking about medication for their dry mouth, that’s how I read it but I may be wrong 😊

Deeb1764 profile image
Deeb1764 in reply to KittyJ

yes I just re read it too!fatigue brain misread it all!

KittyJ profile image
KittyJ in reply to Deeb1764

I read it more than once to be sure 🤣🤣

Lizard28 profile image
Lizard28

hi, I’m on hydroxy but not for Sjögrens , the only thing that’s helps my dry mouth is Salivax pastilles, I get them on prescription, my dentist says sucking ice cubes is betting than drinking water, that’s not always handy to put in my bag lol. My Rheumy was never helpful when I kept mentioning my dry mouth.

Sheila_G profile image
Sheila_G in reply to Lizard28

You have answered a problem for me by answering Swanfull. I have problems with swallowing dry food and have had some very scary moments getting food stuck. Although I have suspected Sjogrens for years I have never told anyone because I know there is no cure. I am going to try Salivax pastilles. Thank you

Lizard28 profile image
Lizard28 in reply to Sheila_G

I hope they help, I used to choke because my mouth was so dry and I couldn’t speak. I stuck one to the roof of my mouth during a biopsy in my neck and I couldn’t move or have a drink. I couldn’t have coped without my little salivax. I always pop one in going to see a doctor as well as I hate keeping sipping my water bottle. I hope they help.

Sheila_G profile image
Sheila_G in reply to Lizard28

It's horrible. I'll definitely try them. Thank you

Knip profile image
Knip in reply to Sheila_G

In my case I have very dry eyes as well as a dry mouth. My RA consultant prescribed eye drops, Clinitas Multi 0.4%, and suggested chewing gum. He was going to discuss the possiblily that it was Sjrogens at my next appointment, but was not available to do so, having been called away on an emergency that morning. That was three years. I then had a change of consultant so it was never brought up again. I am debating about discussing it with my new consultant. I use the drops to good effect and have been sipping water re the dry mouth. The chewing gum did work but gave me awful flatulence, which was embarrassing. I will give the Salivax pastilles a try. The xylimelts sound good too, as mentioned by Riasibad below. Take care, K.

Sheila_G profile image
Sheila_G in reply to Knip

I have had eye drops, eyebag and Blephasol lotion for many years now. I have permanent blepharitis too. I abought a small humidifier last winter because the central heating makes things worse.

Knip profile image
Knip in reply to Sheila_G

Oh Sheila, things are much worse for you than for me! Mine is worse in the evening, but I hadn't connected that with the room being considerably warmer, so thanks for that, We have a dehumidifier, so it will be worth a try with the need for central heating upon us. Thank you.

Sheila_G profile image
Sheila_G in reply to Knip

It's a humidifier you need to put moisure into the air. Good luck

Knip profile image
Knip in reply to Sheila_G

Durrh! Point taken Sheila. Of course...I wish it was a typo but it isn't...I just wasn't thinking it through. Is yours electrical? Take care, Knip.

Sheila_G profile image
Sheila_G in reply to Knip

Easy done. Yes. It is a globe, you fill it with water, plug it in and it sends a fine mist into the air. I always sit right next to it and it makes you feel cold but it certainly helps the eyes.

Jig-saw profile image
Jig-saw in reply to Sheila_G

my daughter has achalasia, linked to acid reflux which causes food to get stuck too

Sheila_G profile image
Sheila_G in reply to Jig-saw

I haven't actually heard of that. Interesting. Thank you.

madme1 profile image
madme1 in reply to Lizard28

Same here, i still keep mentiong it but no joy. Throat feels so dry at times it feels cracked!

ATVMWF profile image
ATVMWF in reply to Lizard28

HI Lizard28,

I have tried various pills and potions but find Sula sugar free sweets, which are also GF, quite good (available from Morrisons , online and some chemists) and Xylimelts are OK for bedtime as they attach to inside of mouth to stop swallowing when asleep.

Helpful to always have water/sugar free juice available when eating. I have had Biotene mouth gel on prescription before but find that really gloopy. and I don't think it lasts that long. I haven't tried Salivax pastilles before but might ask my G.P. about them. and give them a go.

Hope this helps,

ATVMWF

madme1 profile image
madme1 in reply to Lizard28

same here, still stuck with no treatment gor that, but may get some pastilles.

Sheila_G profile image
Sheila_G

Sorry I can't help but I have same problems as you. I am going to try the pastilles.

Riaisbad profile image
Riaisbad

I also have RA & sjoegrens. I’ve had RA for 30+ years but the sjoegrens for maybe 5. I tried everything as my daughter a dental hugienist and the reps have forwarded her many sprays/gels/mouth rinses etc. however, my lifesavers are from Amazon ‘Xylimelts’ I put one against my gum at night to sleep and during the day if I’m talking a lot I use one. They’re fantastic and something I can’t function without. Try them see if they work for you xx

Ascidian profile image
Ascidian in reply to Riaisbad

Another vote for xylimelts from me -the only thing that gets me through the night. Small sips of coconut water also help during the day. I don't have sjogrens, but suffered extreme dry mouth and eyes during the menopause, and still have both (but much milder now).

Knip profile image
Knip in reply to Riaisbad

Riaisbad, Do the the Xylimelts contain xylitol instead of sugar? If so, although I'm not diabetic, they would be good for those who are K.

Riaisbad profile image
Riaisbad in reply to Knip

yes they do which is really good for diabetics

hbowling profile image
hbowling

hello there. I too have RA and Sjogrens . My consultant , who was my new RA consultant immediately told me about Sjogrens, and diagnosed me on the spot. She put me on 3 new meds. I’ve got eye drops, eye cream for use at night, and a tube of fairly unpleasant gel which creates saliva. I still have very gritty eyes which are also itchy and dry. I have to take a big bottle of water when I go out, and I’m drinking about 5 pints of water a day at home. Good luck.

Swanfull profile image
Swanfull

thank you all for your helpful comments. Sorry it wasn’t very clear lol. I am on Benapali for my RA was on Mtx but my white cells are out so had to come off it. I will definitely try Salivax and the others mentioned. always carry water around sipping continuously. Dr gave me Glandosane spray which helped but not for long 😕 can I ask does anyone suffer with a sore tongue which I seem to have developed since having Sjogrens? Thank again for your help 😘

chif profile image
chif in reply to Swanfull

yes, I get sore toungue, dry throat, have to eat with water. I drink water all day and night. My eye dr started me on plasma drops. Because my eyes are so dry ive lost 90 precent of glands due to sjrogrens. nothing helps.

puffyface profile image
puffyface

Yes, sore tongue happens intermittently. I use lots of gel and suck Salisax pastilles and it eventually calms down. It’s quite uncomfortable. Keep drinking water, chew gum and suck no sugar sweets.

Brushwork profile image
Brushwork

My meds are primarily for the RA, there is little else can added for Sjogrens. I have eye drops, and take anti-inflammatory meds when it flares up.

I find that sugar and dairy products make the Sjogrens worse, so now steer clear of them. They also cause migraines, so it’s a good choice for me.

Windy days and very sunny days also cause my Sjogrens to flare. However, the RA is pretty well controlled with Tocilizumab.

Go gently

AgedCrone profile image
AgedCrone

I’ve had Sjögrens secondary to RA since 2007 & recently my consultant wrote to my GP after we had discussed the dry mouth symptom, saying as it didn’t trouble me too much he did not think adding medication was clinically advised. Mine hasn’t got worse in 15 years..so as long as I have a bottle of water by my bed at night….I honestly forget I’ve got it.The only downside was I had to stop wearing contact lenses because of dry eyes….but my eyes cause no problem now.

My present rheumy is a very conservative prescriber…..as was the rheumy I had between 1997-2006. Both believe adding another drug ‘just in case’ was not the way for me……& it seems to have been successful…but we are all different.

J1707- profile image
J1707-

my go yo is orlalieve . My hygienist recommended it as it what patients having cancer treatment.

You can buy direct but I get the spray on prescription. I love the mouth wash and toothpaste too.

Jig-saw profile image
Jig-saw

hi, I take salivix pastilles and cellulose eye drops, I have just been prescribed pilocarpine tablets but haven’t started as it may cause side effects and I am due an operation next week. I also take methotrexate and hydroxychloroquine but they are for systemic lupus and skin lupus, I used to have a mouth spray but it didn’t help much, there is a chewing gum as well which I didn’t want to use due to dental condition, I often have a husky weak voice with no soreness.

Hope you get some relief from this.

Brychni profile image
Brychni

Hi Swanfull

I get really dry mouth too but sporadically. It gets so bad that I get a nasty needle pain by the side of my windpipe. I too have the pastilles mentioned in other replies. In addition you could try hyaluronic supplements (high strength from Bulk) which I initially took for dry skin and then discovered that people often take them for dry eyes and for after eye surgery. I have dry eye too and I've noticed a difference since I started taking them. and I really notice the difference when I run out.

I hadn't known that taking it as a supplement was an actual thing but apparently there is good scientific evidence. Whether or not it can help with the dry mouth thing, I don't know but it may be a good additional measure.

Devonshirelass profile image
Devonshirelass

Hi Swanful, I to also have RA and Sjorgrens and also Osteoarthritis. I was advised that chewing gum helps with a dry mouth but my worst symptoms is the extreme dry and scratchy eyes. I use Hycosan eye drops during the day and the cream at night which gives a lovely relief. I hope you can find some relief as it’s yet another nasty condition which can go hand in hand with RA. Take care.

Calla2712 profile image
Calla2712

I have Sjorgrens but it mainly affects my eyes, I do get dry mouth etc but don’t take anything for it.

Swanfull profile image
Swanfull

thank you again for all the replies 🤗 it really helps to know not suffering alone. 🤗

Angels54 profile image
Angels54

Hi All , It seems this obviously has something to do with RA , or meds we on , I also have Sjorgen’s and take liquid paraffin gel on a night , drops through day , also inject Benapali.😟

chif profile image
chif

Ive had RA and Sjogrens over 20 years. I take cevimeline 30 mg 2 x a day. It stimulates saliva. Its the wonder drug to help. I'm in spain now and its not available here. So I pay a lot to get it in usa.

Only other drug similar is pilocarpine. But cevimeline is superior. I also have severe dry eyes. The cevilamine helps that a little also. Sjogrens is autoimmune. There are meds to help like the RA.

Kels1974 profile image
Kels1974

i have sjogrens I've been on hydroxychloroqine chlorine around 10 months now and it's helped a lot with my joint pain,it hasn't helped my fatigue at all though.I also get eye gel and artificial saliva spray.

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