Hi Everyone!
I'm new to "Sjogrens World" - but not new to Sjogrens. I've had the experience of 30 years dealing with this autoimmune disorder. And, it has been quite a battle. It started with Interstitial Cystitis and grew from there. I have dry eyes, mouth, nose, erythromelaglia, raynauds, migraines, trigeminal neuralgia, fibromyalgia...well you know the whole gammat of Sjogrens.
I'm so glad that I found this forum. It has brought more light to my disease as I see so many suffer from the same things that I do.
Today, I was diagnosed with my worst fear....MOUTH THRUSH! I had taken an antibiotic at the beginning of the month for a sinus infection and this happened. I first thought it had reared the burning mouth syndrome (idiopathic in nature) that I've had for 5 years. But, as the days progressed, my tongue which is pasty white has become very white and scary.
So, we went to the ER on this lovely Thanksgiving day to get the diagnosis and Diflucan.
I have read so many horror stories on the internet and such about how hard it is to eradicate. As well as on this forum. I know many people don't post their success stories about this - but I really need to some reassurance that th 14 day Diflucan and my religious oral hygeine utilizing all Biotene products (which by the way have been a godsend!) and eating healthy as I do, that this TOO SHALL PASS.
Comforting words and reassurance is what I need from Sjogrens World.
Thanks so much for listening.
I hope someone responds.
MNCJL
I am sorry that you have thrush and on the holiday too. Thrush is so common in these autoimmune diseases. I have some chronic thrush because I have low t-cells and because I take antibiotics so much. Maybe 7-8 times a year on antibiotics.
The best thing you can do is to eat yogurt (a little each day---not a pint) to help balance the bacteria in your body. Also, cut down on the sugar, etc and carbs. Make sure to rinse your mouth after eating to keep the bacteria from fungus from feasting on the food in your mouth.
Yeast can be miserable but with common sense and treatment it should be able to at least calm it down. If you look in your mouth and see some hemmorrhagic or reddish areas on the top of your mouth and the back of your throat off and on, this is most likely a chronic thrush that is just sitting there enjoying the scenery.
Thrust does not have to be your worst fear, cause it is something that can be treated---often we get it over and over again---though not in the acute form. The main thing is to be aware of it and keep ahead of it. My DIL is a nurse and had one patient who had yogurt nasal rinses ordered for sinus yeast. I would assume that the sugar free greek yeasts would be the ones that would work the best, and I would want to have an ENT or doc tell me how, why and where to do this. It sounds promising to me though. IRish ;D
I will start off by stating I have never to my knowledge had oral thrush , But I work with a population who have it often!
I am a nurse co-ordinating pre and postnatal programs and babies get oral thrush frequently.
What seems to have happened to antibiotics over the years has occurred with anti-fungal as well. Over time the nasties learn to thrive d and mutate to survive the onslaught of pharmaceuticals! What has worked really well for moms and babies for some time now is a very OLD treatment that you can get over the counter at drug stores or at most health food stores. It is called gentian violet and like the name suggests is a beautiful indigo colour( careful it STAINS!) wash that can be applied to any areas thrush is invading. You will appear very blue in the lips ( yes people will inquire about apnea!) but it seems to knock the nastiest virulent strains of yeast flat.
Sorry you are dealing with this- hope you get relief soon!
My mother, wife and daughters swear by gentian violet. We have also used tones to treat fungus in other locations.
Thrush: http://www.chakraforce.com/Tonations.html#16.
Candidia: http://www.chakraforce.com/Tonations.html#324.
You did the right thing to seek medical help.
Thrush and I are good friends, good old 'Candida' invaded my body 20 years ago after 4 years of steroids and it seems to be lying low level in my body and flares up.
I have had a GP tell me it is 'Psycho Sexual' - how patronising!
Anyway, now I have been diagnosed with Sjogrens, it all makes sense to me, in fact I might change my name to 'Candida' - some doctor suggested boric acid pessaries for 'down below', do any of you girls know anything about that?
There is a new medicine for oral thrush called Oravig. It is a tablet that you put between your cheek and gum and it stays there for the day slowly dissolving. I think the course is 7 days. It is actually the same medicine used for vaginal yeast infections (monostat). It works great....with one exception. With the dry mouth it takes much longer for the tablet to dissolve. But it still works. Definitely worth asking about.
I have had some severe thrush and I was up the creek for a while. The dr gave me diflucan but my saliva was so low I didn't have enough saliva for it to work. Liquid diflucan solved the oroblem but it would build up again.
No amount of gentian violet or anything would budge it.
What was happening was my mouth would get so dry that at night it would flare up. The dr prescribed me nystatin truches which are sugar free and it only took a week or two of nighttime ones to get it solved. Nystatin truches work by slowly dossolving. i highly recommend them. Our city is small and we have one compounding pharmacy. They worked with the dr to compound the truches and then worked with me to make sure they were sugar free and a flavour I could stand (lol) which was mint. Liquid Nystatin doesn't seem to work at all. The truches did.
Oh and i got a sixty dollar critical care probiotic. This was really super important because the diflucan and nystatin were wiping it all out, and I needed to replace them. Mine has 100billion strains or something. Worked like a charm.
good luck.
You may want to try a probiotic such as acidophilus. It helps to balance the bacteria in the body. Antibiotics not only kill the bad bacteria, but the good ones also - causing a yeast infection.
Duchess
All I can say is Thrush, yes.
That is, yes, I've had it, four or five years ago. I went to the doctor and did what she said. It got better, and didn't come back, probably due to lack of antibiotics afterwards, and diet high in vegetables.
I had an adviser once, a large man, who would rumble deep in his chest "You'll be fine!" It was somehow very reassuring. Now I'm rumbling a deep John Wayne sort of "You'll be fine," from the height of 5'0" standing tall.
Welcome to the forum,
Soycoffee
Thank you Soy coffee!
Those are the kinds of reassuring words that I need to hear! Over and over again!
Please send more!
Thanks for being so very kind!
MNCJL
Quote from: mncjl on November 24, 2011, 11:05:36 AM
Today, I was diagnosed with my worst fear....MOUTH THRUSH!
That's my worst fear as well.
18 months ago I was MISdiagnosed with it. They gave me all the antifungals .. one after another .. to try to get rid of 'it' ... of course 'it' never went away because 'it' wasn't thrush. But anyways, every antifungal I took was awful ... bad side effects ... PAINFUL throat and it felt like I was being strangled when I took the diflucan ... even just one pill of it. And swallowing the nystatin made my lungs suddenly suck in and wheeze for hours ...
I'm scared to death to get thrush for real.
I don't know what I'd do .... have a mental breakdown I guess.
It's my greatest fear at this time .... something so 'small' as thrush ...
Liz,
Your response was NOT very helpful. In fact, it is exactly why I knew I should sign up for a forum. I was seeing some good in this one. But, it looks like everyone has their own opinion. And, no one can be nice and give positive feedback for someone who is scared and searching.
Your response only put more fear into my mind. What was she misdiagnosed with? Could that be me? What terrible side effects this medicine gave her. Will it give them to me too?
Thanks to everyone. I will be dropping my subscription to sjogrens world. Best of luck to all.
MNCJL
MNCJL, I hope you reconsider and stay with us, as you said everyone has their own opinion, and please remember that not everyone responds in the same way to treatment...for thrush or anything else for that matter.
I'm unsure as to why anyone would treat with antifungals without a positive fungal culture, but that may only be standard practice where I live. Here, systemic antifungals are reserved for very advanced fungal infections, infections that have proven unresponsive to every other form of treatment, or when the infection focuses on vital organs like the heart or brain, and this is a rare occurrence.
Remember that you have the final say in any medical decision, and if systemic antifungals are suggested before you've had a positive culture, you have the right to ask for the culture and refuse the medication until it's need is clinically proven.
Not sure what you expected, but you certainly got helpful input/advise from several members. ALL responses were nice and offered positive feedback in one way or another. Frankly, the only negative post was yours, and hopefully it will be pulled by the moderators.
Linda.. if a person has thrush, it's a fungus.
---
notes...
..The real fear is systemic yeast. I have it really bad and just this week the thrush got bad. I am so bummed. I have the Orivig and have been afraid to try it because I've had severe stomach pain this week (due to the yeast.)
Now I have hope that it won't kill my stomach??
...I never heard of Diflucan or Nystatin killing good bacteria??????
...Liquid nystatin contains sugar.. so that is why it doesn't work very well.
...Get HIGH QUALITY probiotics....several strains. Good ones are the Critical Care (Ultimate Flora), Theralac, and VSL#3.
...I avoid yogurt like the plague and now I have to avoid stevia. I can't take ANY form of "sugar".
mncjl...I hope you find what works for you!! Let us know how you're doing next week!
MNCJL,
I hope you haven'y given up on the sjogrensworld forum. I have found TONS of great information and advice here. There are a few users that I don't always agree with...this is normal. We all have had different experiences and different symptoms from Sjogren's. Many of us have other conditions in additions to Sjogren's so it is important to take some advice with a grain of salt. You may not have the same illnesses, and therefore the same reactions or problems with some things.
I have SJS and Fibromyalgia. I have had oral thrush a few times, mostly when taking prednisone. The first time, I was appalled. I thought it was gross and embarrassing. My rheumy prescribed an oral antifungal med that took about 10 days to work. I can't remember the drug, but it was a tablet I had to dissolve under my tongue 4 times a day. I didn't like it.
A few years later, I had a chronic vag. yeast infection issue and my Gyno prescribed Diflucan. Much better!...since it is a 1-time pill. I had many refills and tried it for a suspected thrush case when I was on prednisone a few months later and it worked like a charm. I don't worry about thrush at all any more. Diflucan seems to work great for me.
Best of luck.I hope you find some good information here.
AMK
MNCJL,
I want to welcome you to the site! ;) I apologize that I am late in doing that.
I've also read through all the posts here, and want to say that I hope you continue to give us a further chance. Most of us here do try our best to be reassuring and give support and comfort.
Anytime a question is asked, you may receive a wide variety of answers. Some you may feel are very helpful, and some not so much for you in particular.
My personal experience with thrush in my mouth was last winter. It was annoying, and it hurt. After a couple of rounds of Diflucan and a few rounds of Nystatin mouth rinse, it finally cleared. I don't believe most people have a serious case of it, but that is only my personal opinion.
I hope that you continue to post here, feel welcome and comfortable asking anything, and receive information and support you find helpful. ;)
Take care,
Melinda
I have "thrush" now from taking antibiotics and it is truly horrible not to mention painful. I use a peroxide rinse and salt water which takes a while to clear up. If it is not better by Monday, I will call the doctor for diflucan.
I hope you feel better soon and you find something that works for you.
I'm here because I truly want to know how everyone is doing which helps me manage this disease. I value anything that anyone has to offer. I may not treat my symptoms as someone else does but I learn so much from them too. We are here because we are all fighting the same battle.
Jazzlover, I'm aware that thrush = fungus, but the comment was made that Thrush was misdiagnosed, which couldn't happen if there was a positive fungal culture.
In the absence of a culture result, the symptoms of Thrush could be a number of other things, including but not limited to: •Leukoplakia •Lichen planus •Dysplasia •Geographic tongue •Herpes simplex •Erythema multiforme •Pemphigus •Oral hairy leukoplakia
None of these conditions respond to antifungals, and even documented oral fungus (Thrush) responds better to topical application than to systemic dosing, in most cases.
At this point, since mncjl has unfortunately left the forum, I'd like to see this topic ended, and if need be it will be locked. Since it contains information pertaining to diagnosis and treatment of Thrush, I will not remove it at this time..
Quote from: Linda196 on November 26, 2011, 03:51:46 AM
the comment was made that Thrush was misdiagnosed, which couldn't happen if there was a positive fungal culture.
More of the story - My tongue suddenly overnight turned kindof crusty white and full of ulcers and pain. The PCP assumed it was thrush and started me on antifungals (nystatin) ... after two or three weeks on that there was no change so I asked for Diflucan tablets - which I had read about on the internet. She gave me ONE (not the usual course of treatment). Had a bad reaction to that (severe pain in the throat, felt like it was closing, couldn't swallow hardly) and she gave up on it and said ... and I quote ... 'drink lots of water and take asprin' ... >:( .... So I got ticked and went to an ENT ... he gave me the losenges. Obviously they didn't work and I had a reaction to those as well (my mouth puffed up, everything swelled). So he sent me to a infectious disease doctor. He FINALLY ran the culture but at the same time put me on a horrid drug called ANCOBON. Two weeks on that ... hallucinations, couldn't swallow, anxiety attacks, (found out ANCOBON crosses the blood barrier line in the brain) then the tests come back negative for thrush ... so his INTERN did blood work and found the sjogrens.
Here I am 18 months later .. much smarter. Back then I'd never heard of thrush or Sjogrens. Now I know enough to have a culture run before taking any thrush drugs. The doctors should have known better. I ended up educating myself on the internet ....
The thought of thrush is still my greatest fear with this sjogrens.
I've said it before on here ... I don't know what I'd do if I ever got it for real.
I had such a bad time with the drugs before ...
I eat a bunch of yogurt now ... not having any sugar either ...
Hope that helps keep it away .... hope hope hope hope hope
First of all I want to just mention that Linda is a very qualified nurse who has worked in very high tech areas and "knows of which she speaks". She has been on this board for many years and brings her expertise to us and I, for one, am always very thankful. Just a note to let others know what her background is.
Also, I guess I have to add that, yes, yeast can be a bummer, but it is something that can come in many different forms and cause many different issues. There are many times when it isn't bad that a person can just cut out the sweets and watch their diet. Using unsweetened yogurt can help some--I think the new Greek yogurt is good---and remember that toothpaste has sugar in it. There are so many things we put in our mouth that can make yeast worse.
Because many of us have the chronic yeast we sort of learn to live with it and treat it before it gets too bad. Many times I will see it coming and just treat is myself with diet, mouth wash, etc.
When it comes to the medication remember that the important thing with these drugs it to avoid alcohol and drink plenty of fluids. I have taken diflucan for as long as 3 weeks and lived to tell about it. We have to learn to not be afraid of the infections that plague us and learn to get cultured prior to treatment of any infection. Sometimes we will have an entirely different infection that we thought.
I am not writing this to act like a smarty as I have low t-cells and have infections all the time. I just finished 3 weeks of doxycline and this is probably the 7th or 8th antibiotic I have taken this year. I have had MRSA more times than I can shake a stick at---and I don't mean I have had it cultured out of my throat. I mean I have had the gross, orange overwhelming amount of infection in my sinuses and throat that are beyond gross. I have also had a mycobacterium infection that can be fatal in my lungs, liver and spleen and was on 3 different, very strong antibiotics used only for special infections. These meds can cause severe liver damage and I had to take 8 tablets a day for one year. The only way I could survive that mentally was to place the care of my liver in God's hands and not worry.
Soooo, please know that infections are bothersome and annoying and dangerous, and whatever else we can think of to call them, but one must take them as they are and get treatment as needed. Generally, we get over them in good order. Also, remember that just because you had a bad experience with a med one time doesn't mean that the antibiotic will do it again the next time. Our bodies change and we learn how to take antibiotics in order to get the least amount of side effects. Remember, I am not speaking of allergic reactions, I am speaking of the other issues,ie stomach, etc.
To all of us with the yeast/fungus/mycobacterium/bacteria, etc I wish good luck. It ain't fun, but we survive the best we can. Irish ;D
I don't post enough to know who is who here or what their professions are. Sorry.
I hope the info can be left here.
PS.. I never did figure out why the poster left. Maybe the reason was deleted?
--editing to add-- I just reread what Liz wrote .. I saw NOTHING wrong with what she said. :o
Linda196, I was just going to remind the members of this forum that there is a list of each forum moderator, administrator, chat room moderators, etc. and I went to look for the name and info on each person. That section is not here now. Where did it go to. I can't find it. Have I totally, at last, lost my mind??? Irish ;D
Quote from: jazzlover on November 27, 2011, 05:25:39 PM
PS.. I never did figure out why the poster left. Maybe the reason was deleted?
Neither my post nor the other persons posts have been modified at all.
Nothing was deleted. It's a .... whatever. Who knows .... ??? Moving on ....
Irish, the staff page is still there, but the new format doesn't provide a link to the Sjogren's World home page. Thanks for the reminder, we should really address that and see how we can link.
If you sign in directly to the forum, you miss the homepage. www.sjogrensworld.org
The story of the site itself and the profiles of the staff are at:
http://www.sjogrensworld.org/about_us.htm
Quote from: jazzlover on November 27, 2011, 05:25:39 PM
--editing to add-- I just reread what Liz wrote .. I saw NOTHING wrong with what she said. :o
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I agree with you Liz! :)
I think she just had a severe case of misunderstanding and then when she realized it, she was too embarrassed to come back. Too bad...her loss. :'(
How sad that she misunderstood what Liz was saying. Liz seemed to be just offering her experiences, not making any suggestions. It seems to me the post was read wrong.
Hopefully she'll come back and, perhaps, use a different screen name. But even with her same screen name we'll still welcome her. Misunderstandings happen and we all sometimes have bad days. We all move on and nobody will hold a grudge.
I've said it before and I'll say it over and over --- this forum has been a lifesaver to me. I've laughed, I've cried, I've learned, and I've had a chance to lend a hand to others. And sometimes I think that the act of reaching out to my fellow sufferers has helped me more than anything.
As everyone probably knows about me, I'm not very smart, but I'm a great quoter of those who are. I remember that Ayn Rand wrote: "If you don't know, the thing to do is not to get scared but to learn." Hopefully, that's what we do here.
Well said, Abbey!! Well said!