Plaquenil and dry mouth: Plaquenil is helping some... - LUPUS UK

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Plaquenil and dry mouth

loopy4me profile image
29 Replies

Plaquenil is helping some of my lupus and mctd symptoms, but it seemed to trigger dry mouth. I need to have glass of water to sip on in the middle of the night. Has anybody else experienced this side effect of plaquenil? Or could it possibly be Sjögrens?

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loopy4me profile image
loopy4me
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29 Replies
CecilyParsley profile image
CecilyParsley

Hi, yes I drunk at least 10-12 glasses of water daily on Hydroxychloroquine. Since I was taken off it I note that I am now drinking half that amount. It is strange I never considered this before you posted .

loopy4me profile image
loopy4me in reply toCecilyParsley

I’ll talk to my dr next month. I’ll inform you my findings

CecilyParsley profile image
CecilyParsley in reply toloopy4me

Thank you

maggielee profile image
maggielee

Loopy could be sjogrens too...I find many of my lupus group have sjogrens symptoms, I have been diagnosed with both & know it's not just hydroxy...

Helps to know, especially if it involves other areas of moisture producing glands...ml

loopy4me profile image
loopy4me in reply tomaggielee

Well oddly enough, I am not urinating near as much either. I thought I had a swollen prostate but maybe the mctd or lupus was causing it to swell! Regardless, my dry mouth seemed to start a few weeks after taking plaquenil. The same time my frequent urination subsided. I am happy as a lark with this medicine despite cotton mouth. Pretty sure Sjögrens not causing it because all my other lupus symptoms are better. I am pretty certain it is the plaquenil causing the cottonmouth for some reason. Cotton mouth not listed as a side effect though

maggielee profile image
maggielee in reply toloopy4me

Hey Loop though I was diagnosed with lupus (SCLE) 1st, sjogrens was simmering in the background which did get worse as SCLE rash & some of the other symptoms improved or calmed with hydroxy meds..but there are overlaps of course between both diseases, fatigue etc.

I felt much better with the hydroxy for quite a while, but then more symptoms arose & fatigue, including dry mouth etc..

I am also now on mycophenolate now & an array of other meds including pilocarpine to improve moisture production.. never know whats next...

hope you get to the bottom of it... ML

loopy4me profile image
loopy4me in reply tomaggielee

Thanks Maggie. This autoimmune stuff just seems to float around just crashing whatever is in its way whenever it wants to. Then periodically changes it’s looks

Hi Loopy, I’ve been waking up for sips in the middle of the night and carrying water with me at all times for about 10 years. I’ve been using the Plaquenil for about two months now. So, it could be the Plaquenil or it could be symptoms🤷🏻‍♀️ of what you have.

loopy4me profile image
loopy4me in reply to

I guess the Sjögrens isn’t out of question. It’s just a new symptom that seemed to come along strangely as all other symptoms improved

in reply toloopy4me

Looney, it’s all so very confusing (these diseases). If only we knew what to expect and when. It serious is ridiculous how fast things come and go without any pattern to them.

loopy4me profile image
loopy4me in reply to

Yes. I am trying to figure this stuff out. Strange things happen to the body when it doesn’t like itself

in reply toloopy4me

So true!

in reply toloopy4me

Loopy! I just can’t seem to have it right! Yikes.

loopy4me profile image
loopy4me in reply to

Btw. It’s loopy not looney. Lol. I got a kick out of that

in reply toloopy4me

I’m so sorry. I know it’s Loopey, my phone autocorrects a lot. I catch most of them, but, sometimes things get through. I’m very sorry.☹️

jayfer profile image
jayfer

I was sent to dental hospital for dry mouth. I also have dry eyes but they say it's not sjogrens. I have a toothpaste prescribed by dentist, a mouth wash, gel and spray for my dry mouth(bioxtra). They do help to some extent, maybe worth a try to see if they can be prescribed.

Good luck, hope you get it sorted

loopy4me profile image
loopy4me in reply tojayfer

Thanks Jayfer. Did they say what it was causing the dry eyes and mouth?

jayfer profile image
jayfer in reply toloopy4me

Hi, no they haven't. I had a few tests at dental hospital and it was obvious I had a dry mouth, sore too. My lips become sore so have a cream for lips too that was prescribed! I use them all regularly . I have drops and gel for my eyes too. I don't have any answers sorry, only ways to help the symptoms .

Lizziequink profile image
Lizziequink in reply tojayfer

Hi Jeyfer, what your describing are symptoms of Sjogren's as they were described to me when I was diagnosed with it. I'm not sure that dentists are as aware of the condition as they need to be. I know mine isn't. Hope you get the answers soon :)

Georgiab123 profile image
Georgiab123 in reply tojayfer

Iv got Sjögren’s and get same things you get also drops and cream for dry eyes

jayfer profile image
jayfer in reply toGeorgiab123

I think they are not too concerned as I'm on medication for lupus, rheumatologist said it's the same medication for sjogrens. My dentist is extremely good as I've also had a biopsy on bottom of mouth ( goes back from when I smoked!)

As long as I get the correct meds to help with symptoms I'm not too worried.

I hope everyone gets sorted x

Lizziequink profile image
Lizziequink

It may well be caused by Sjogren's. I was prescribed Glandosane Synthetic Saliva to alleviate the dry mouth as it's common with the condition. Certainly with me it's not caused by Plaquenil as I can't tolerate it. Don't know if that helps at all. Take care x

loopy4me profile image
loopy4me in reply toLizziequink

Thanks Lizzie. I think I refuse to admit I additional problems when I think I am mostly in remission with lupus.

Lizziequink profile image
Lizziequink in reply toloopy4me

I suspect we're all guilty of that Loopy :)

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi loopy4me,

Dry mouth can come under Sjögren's syndrome. We published a blog article on coping with dry eyes and mouth which you may find useful to read at lupusuk.org.uk/dry-eyes-and...

For more information, you can visit the BSSA (British Sjögren’s Syndrome Association) website here: bssa.uk.net/

It is best to discuss this symptom with your doctor, to see what he/she suggests :).

Please let us know how you get on, best wishes!

loopy4me profile image
loopy4me in reply toChanpreet_Walia

Thanks. Xylomelt and Biotene will be on my Christmas wish list this year. A few months ago I couldn’t spell Sjögrens. Now I am afraid I am one! Lol

Cas70 profile image
Cas70

Try Xylimelts from mouthulcers.co.uk - stick one on your gum at night and they slowly dissolve - I don’t wake up thirsty now. They have great stuff for dry mouths on this website. Good luck.

Georgiab123 profile image
Georgiab123

Sounds like Sjögren’s take care

loopy4me profile image
loopy4me in reply toGeorgiab123

Thanks Georgia. I’m afraid your correct

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