Does anybody suffer with recurrent oral thrush and is it a Lupus related problem?

Hi there everyone. I keep getting thrush in my mouth and have had it quite often over the past few years, both before and after methotrexate. My Rheumy insists it is Methotrexate related (he never listens) so even telling him that it has been a problem for a long while makes no difference to him! This is driving me crazy at the moment and I am contemplating another visit to the GP even though i know it is a minor problem and I feel a bit of a fraud wasting an appointment.

18 Replies

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  • Hi Tich .... thrush ... ick.

    I have had problems with this in the past as I have been on steroids forever! A round of antibiotics send it crazy!

    Have you had a dentist look at it to eliminate any problem in that department?

    Don't dismiss this as a minor problem!

    I looked into it from a holistic view and made a adjustments to my diet. It took a while but the problem seems to be under control. I have to be careful with sugars, yeasts and fungi so try to remain aware and not consume them. I also try to have pro-biotic (live) yoghurt cultures every day as it does help the gut.

    Good Luck!

    Fruitloop x

  • Hello Tich

    Do not let anybody tell you it's not Lupus related1 I was diagnosed with Systemic Lupus 15 yrs ago- had been on cortisone , methotextrate etc etc etc for the whole period until I stopped all these immune suppressants in April 2010. Since then(since I stopped cortisone) I have had the thrush in my mouth and yes it is because I don't have the steroids in my system anymore to suppress it. My experience is that there is nothing you can do except rinsing your mouth with a anti fungal antiseptic mouthwash. I f you are on cortisone, quinine or methotextrate it will eventually get better. I however had to stop all treatment suppressing Lupus because of the damage to my eyes and muscles & skelet. I had to have 4 back surgeries for collapsed disks, one neck surgery for the same reason and 2 knee replacements- all due to the prolonged treatment with these medications. So it might be a good thing to keep in mind that damage to your body can be fatal and or/debilitating with the prolonged treatment with these medications. As long as your dr keep an eye on you and monitors your whole system every 6 months, you may be fine .... wish you well

  • Hi, thought it might be of interest to you, i have just had a recent check up, and have been diagnosed with sjgens (dont think it is spelt like that) it effects the bodies linings, dry eyes, mouth, stomache,etc I have been getting oral thrush and have never had it before, and apparently it can be linked to this, which in turn is also linked to Lupus.

    I hope this info may be of help.

  • Thank you all for taking the time to reply to my question. I am due to see the Rheumy in March so I will try and bring it up with him again then.

    Take care

  • When I got ill it was sore throats and thrust all the time. Antibiotics will mess up the balance of yeasts, bacteria and virus which normally live in and on the body. And so will the dryness caused by Sjogrens which is a common accompaniment to lupus. dont be fobbed off.

  • Get the best and strongest probitotic you can, take it with cold water and keep in fridge: xx

  • I'm new on here and just seen that you live close to me! I have the same problem with thrush and my GP prescribed me Nystatin which is what they give to babies with thrush. Just told my Rheumy nurse that he'd prescribed it and they were fine about it. GP has prescribed a few things which the Rheumy didn't suggest!

  • Hi Becky, so we live near each other :), have you joined the plymouth support group yet? it took me 18 months to pluck up the courage to both accept the fact I am a 'lupie' and to begin to seek support from others like us. It truly helps. Please email me if you are still in the 'alone' frame of mind. I wonder if we share the same Rheumy because mine suggests nothing! and simply puts everything down to the meds even though the thrush has been a problem for years before diagnosis!!. Yes I am prescribed the same and have decided it is just another pain in the rear :). Take care and I do hope you are in good health at the moment.

  • Hi I would like to share my problems with you. Firstly I was diagnosed with systemic lupus 22years ago since then Ive been diagnosed Raynauds Syndrome, Sjogrens, Fibromyalgia all of which are related to the lupus. About 3 years ago I noticed a duscusting loose skin that would form in my mouth the doctors told me it was thrush of the mouth. I've tried everything and it won't go I have good days and bad days with it. But since I was diagnosed with Sjogrens that's when the thrush appeared so I am now putting it down to again a mixture of these connective tissue disorders. I can confirm that over the years I have not passed it on to anyone as I was concerned that it would be highly contagious! I'm 40 years old and control my illness with hydro chloroquine and the occasional depro steroid injection. My pain is controlled by Pethidine on a daily basis as this is the only drug that actually works being a muscle relaxant and anti spasm drug. If anyone would like to email me regarding there problems I have 20+ years of experience and as for doctors and rhumatologist they really are crap as they don't suffer it and don't really know what to do with us. Feel free to chat ill help if I can with any questions Sam x

  • Hey! I am a 22 year old male. My episodes started a few years ago. I seem to get an outbreak every 4-6 months. I've been hospitalized twice. No one seems to know what's going on and why. I've been tested for hiv, and my body seems strong and fine.

    Results come back with nothing. Yet I still get mouth infections constantly. I'm just wondering who I could see or what I can do to make these episodes stop. I've heard I have to change my whole diet. No sugars, dairy, yeast, certain oils. I've tried but it's hard and expensive. Help! !

  • Hi,

    Just wondering if you ever got any answers from your doctor or otherwise. I also had a problem with mouth infections.

  • ive had thrush for 18 months and a feeling something is stuck in my throat ive had nystatin 3 times it is resistant to that dakatarin gel fluconazole 3 times nothing works im sick alot its so fustrating ive also finally had a endoscopy waiting biopsies anyone feeling same with oral thrush? also sick alot

  • Don't leave it, go to your GP. It's not minor!!!!

    Looks like you live close to me.:)

  • I'll never understand why unsweetened alcohol and fungi containing foods can't be consumed with a thrush infection. The yeast used in making alcohol is not the same yeast which causes thrush. Yeast in alcohol is fermented sugar and it can't revert back to sugar. As well, things like mushrooms are different. Sugar is a no no of course since yeast can thrive off of it.

  • Tich I get thrush in my mouth from taking steroids. The doctor gives me Nystatin oral suspension for it I also have psoriasis and psoriatic arthritis as well as COPD it works for me take care x

  • I get it loads haven't taken methotrexate since before May . Still get it so can't be related to methotrexate

  • I've now had oral THRUSH for 9 weeks. I gargled & swished Nystatin around my mouth 4 times a day for 7 weeks. It helped a little but not much. PC did a swab to culture & blood work to check for diabetes etc. - All tests came back negative as he told me I was in great health. Really? I was told to stop the Nystatin and take fluconazole. I barely tolerated it for three days and stopped because it did nothing but give me intense stomach cramps & diahhrea. The THRUSH remained. When I stopped that medication the cramps & diahhrea stopped. I was then told to Continue the Nystatin. All the while my PC said "it looks much better". At this 9 week point, I was told to stop all medications previously taken. Here comes the confusing part. So.... nothing was taking a cure past halfway and I was at a standstill. My PC tells me to gargle with Listerine in the morning, and with 20 ml Liquid adult Benadryl (Diphenhydramine HCI 50mg/20ml) in the evening. It seemed to be smoothing out the white junk on my tongue, but I still wake up in the morning with a white tongue and sores on the edges. They lessen during the course of the day, but are still there in the morning. Not as bad as say.... 7 or 8 weeks ago, but it's obvious that the THRUSH is not leaving without a MUCH stronger fight. I'm now using the mouthwash & Diphenhydramine gargles at the same time TWICE a day. Why should THRUSH be such a problem for so many? Allegedly, most people respond to either Nystatin or fluconazole within 2 weeks, tops.

    Do I just have a doctor who doesn't know what he's doing?

    By the way, he NEVER checks up on my. I simply make Appt's every week or so and just show up. It took him 7 weeks to even think of the oral culture and blood work. Now.... allergy medication & mouthwash?

    I don't get it and don't want to start running from doctor to doctor. I DID just make an appointment with an "Infectious Disease Specialist". Even though my insurance doesn't require a referral, the specialist did SO my PC knows I'm seeking another opinion. Trouble is, the earliest available appt is a month away. I made it anyway.

    Sorry this note is so long. I've read everyone else's notes and so many, including mine, seem to futile. Thoughts????

    Best to us all! I DO have faith that someone somewhere will help us all. Not a lot of faith but some!

  • I'm having my third time with thrush. I believe that Thieves, an essential oil, started my first and HUGE round with it two years ago, March 2015. The pills and mouthrinse I did back then seemed to finally clear it up. I had used Thieves in my mouth trying to get rid of a sore throat. Started eating better, kale/almond milk/mixed berries smoothie in morning, melon for snack before lunch, salad for lunch and lots of water. I got it again December 2016, I used some homemade chapstick with essential oils in it. Well, just got it again last week, but have not used any essential oils. I ordered grapefruit seed extract smile.amazon.com/gp/product... to see if that will help. I took the last pills yesterday and have just a little of the mouthrinse, Nystatin, left. Is still slightly white on my tongue. I don't have lupus, was just reading around on thrush. I have NO illnesses! Blood work all negative. Next step for me is also the infectious disease specialist if it doesn't go away. would be interested to hear what they tell you!

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