Diagnosed with Thrush and Scared

[amk922]

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

[Meld256]

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

[season]

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.

[Linda196]

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..

[LizPetillo]

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

[irish]

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

[jazzlover]

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. 

[irish]

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

[LizPetillo]

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 ....

[Linda196]

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

[jazzlover]

--editing to add-- I just reread what Liz wrote .. I saw NOTHING wrong with what she said. 

-
I agree with you Liz!

[Narablueeyes]

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.

[A66eyroad]

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.

[Narablueeyes]

Well said, Abbey!!  Well said!