thrush

[alexanderlonda]

Just wanting some input on this.  I seem to have flare ups every 3-5 weeks, starts with my eyes being dryer than normal, sandy and itchy feeling.  My lips start to burn along with the inside of my mouth and my tongue.  My lips actually get a scalded look and hurt something awful.  The inside of my lips get a blistery feel, then my tongue starts getting signs of thrush and within just a few days I have full blown thrush all over again.  Painful, uncomfortable, and very stressfull.

They give me medication but whenever I'm taking it they want blood tests once a month to keep track of my liver.  There's also a mouthwash, but it doesn't work alone. 

I guess I'm writing this because this whole thing gets to me after a while.  Always I end up with some sort of sore on my lips when these flare ups occur, it takes a long time for it all to go way and heal, and then several weeks later it starts all over.  I have other symptoms also, but the thrush is the one that gets me down the most.  That and being tired alot.

My rhuemy prescribed me vaginal yeast infection tablets, the ones you insert into your vagina, and told me to suck on them when the thrush occurs.  Has anyone ever tried sucking on one of these things.  It was the worst thing I've ever put in my mouth.

I also take ambien for sleeping and lexapro for anxiety.  My husband doesn't seem to understand.  Just tells me to take another pill, that I seem to take one for every small thing that goes wrong.

When you look up SJS it only says the person has dry eyes and mouth, unless you really click on several places in the articles, no one would really know the extent of what is going on with the person who is dealing with Sjogrens.  Can anyone give me advice there to help make him understand a bit better.  He is a good caring man, just doesn't get it.

Thanks for listening and thanks for any responses. 

[Linda196]

Sorry to hear you've had so much trouble with thrush, but the vaginal tablets as lozenges is an old remedy that usually works. If you're also taking an appropriate systemic antifungal (something like amphotericin or fluconazole) you should be having better, longer lasting results. Either the medication isn't effective against the particular strain of fungus you have, or you are being reinfected. Can you ask your doctor if your husband should be treated, too?

Speaking of your husband, he's most welcome to explore this site with you, or you could find posts that explain how you feel, and print them for him. It's a difficult disease to understand, and the concept that his wife is experiencing a problem that he can't fix, is very hard for many men to accept.

[Abbasgirl]

I'm so sorry you keep having to go to war with thrush. I've never had it but have battled with yeast infections at the other end. It does sound like you need to be on something systemic like Linda mentions. Something stronger and she's seems right about getting your hubby checked too. You may have to push the doc to do that. It sounds like you're getting reinfected or you're just not getting it under control with what they're treating it with. Is there anything that you can use along with the "lozenges" treatment that will make it taste better? Sometihng that won't take away the effectiveness of it but help witht he taste?

I wish I had more to offer but you've already gotten some great advice from Linda and I'm sure more is on its way. Hang in there. That would get anyone down after a while. ((((hugs))))

As for your hubby's education about Sjogren's...there are some great books he could read that will help that are specifically about Sjogren's. Do you think he would read them or maybe you could both read them together? The articles on this website are awesome too.

[Scottietottie]

Hi 

I had recurring bouts of thrush when I was in my late 30s. I was given flagyl, which helped but then it recurred again. It wasn't until my husband was also treated that I got a bit of a break from it.

Take care - Scottie 

[alexanderlonda]

Diflucan is the one that works the best for me.  Clears it up the fastest and seems to keep it away the longest.  This has been way over a year battle.  They say due to SJS that I could battle it forever, that my body just can't fight it.  With the Diflucan I have to have a blood test once a month.  Even with insurance it gets a bit spendy after a while.

I appreciate your input, just talking is a big help.  I will try different things with the hubby.  He's a smart man, maybe he knows and doesn't want to think about it.

Thanks, Londa

[Chico]

I  began taking the vaginal suppositories by mouth in Oct. after about 7 months of thrush problems.  Quickly worked very well and cleared up mouth and throat. Still take one a day as a preventative. Was quite a relief.

Chico

[gurs]

Sounds like you need a systemic yeast medication like diflucan, sporanox, lasimil, etc..I have chronic yeast  all over my body, ears, mouth, stomach, vagina. Ive been taking 100mg diflucan every other day and its still doesnt clear it up. Yeast is the hardest to get rid of. My rheumatologist is the one who prescribes it because other doctors just dont get that it will take more than 1 pill, especially with our immune systems and having sjogrens. I also try and stick to an anti-candida diet with no sugar, low carbs, etc..i know sugar just makes it
100 times worse. I also take a very good probiotic that my doc gives me...some garlic supplements..

gursie

[HL in NY]

It's funny, I was just looking on PubMed and I saw something about this.

It's a paper on treating SS by Dr. Vivino, who is the director of the PENN Sjogren's Center. Here's the link: http://www.medscape.com/viewarticle/493493_1 The stuff about Thrush is on page three. In it, he states that you need Difulcan tabs, once a day for 3 weeks, as well as the vaginal tabs as lozenges.

It might be something you want to print out and share with your doctor. It sounds like maybe you're being under-medicated.

Hope this helps,

Heather

[gurs]

I know hormone inbalance is also a major factor. As soon as I had my total hysterectomy, a month later I had yeast in my esophagus, nails, ears, stomach..just about everywhere, and Im still dealing with after 2 years. I think its from the low estrogen and the dryness in the mucus membranes, prob why some of us sjogrens gals have such a hard time with it to begin with.

[Dolly Dimples]

   Hi Alexanderlondo,    I don't think SS alone is responsible for the thrush, as there are many things that can cause it such as Meds, etc'..

Sugar, I think is a no- no, especially while one has the thrush, because we have little or no saliva, our mouths do not get the cleaning that saliva produces..

     I brush my tongue gently with Aloe sensitive toothpaste from Health shops , after each meal, and morning and night.. I do NOT use any mouthwashes..

   Someone else suggests Bio yoghurts (sugar free) which are good.. I also believe that pure Pineapple juice is great for helping to keep the mouth and digestion right...  and of course good old water!    However our dryness does make the mouth very sensitive and prone to sores and ulcers.. which is the pits!