Raw Mouth & Tongue

[19Dragon52]

(((((Hi Folks!)))))

On & off (mostly on) the tissue in my mouth & my tongue will be so raw that I can barely eat or drink.  I have inhalers for my Asthma and I must rinse before & after taking a dose.  I believe the side effects of TX are making the condition worse.  Does anyone experience this and/or does anybody know of a gentle mouth rinse that might help protect the raw tissue or cut down on the soreness.  It can really become painful in a burning sense.

~I Hope You All Have A Terrific Weekend~

God's Blessings!.......

[robin]

Hi Joyce...you might check and see if you would benefit from some swish and spit nystatin and I've heard Biotine is beneficial. This may sound crazy but when I had a mouth ulcer, I would dab a bit of carafate (for gastritis) on the individual ulcer and that helped with pain and to clear it up. Best of luck and lay off spicy foods for a while. I think you can't get any better or cheaper than one of the instant breakfasts mixed with skim milk and a scoop of ice cream when your mouth is sore. Keep your spirits high...robin 

[willy]

Jovce:  Sorry to hear of it.  I once had a condition like it and was miserable.

It's a medical problem with a possible medical solution.  The solution is probably dependant on the cause, which I'm not sure we know (viral, bacterial, a side effect of TX?).  Things that I used; salt water rinses, hydrogen peroxides rinses.  Ultimately, I think I had my problem because I was so run down.  I think my own body fought off whatever it was moreso than any drug I was given.  Don't underestimate the value of sleep, freedom from stress, and good nutrition. 

best,
willy

[19Dragon52]

(((((Good Morning Folks)))))

Thank You for taking the time to reply to my plea.  I so appreciate it,

Robin...is Nystatin a prescription?  I have heard of Biotene helping my situation and it may be worth a try.  I used to take Carafate but not anymore.  I already take enough medications that for something like this I am pretty sure I can rely on an alternative.  As for spicey foods...I hardly touch them due to GERDS.  I must confess I do LOVE spaghetti sauce,  but there would be no way I would attempt putting it into my mouth when that rawness is present!  Ahhhhhhhhhhhhhh!    I do keep cold yummies in the freezer, though.

Willy...Stress?    Now you know me better than that!    I do believe my condition is activated by my Asthma inhaler and Nebulizer.  I also had a front tooth on the bottom of my mouth shift a bit and my tongue kept getting snagged.  It must have shifted back because that isn't bothering me, now.  I went to my cauldron the other night and mixed sea salt with warm water and added just a small splash of antiseptic mouthwash...not a bad result.    I also sprayed the inside of my mouth with Aloe Vera juice, sucked some water and swished & gargled...also not a bad result.  I have heard of using Hydrogen Peroxide but wasn't too sure about the soundness of that...I don't know why but I thought it would be too harsh.  I have some in the house so will try diluting that a bit and give it a swirl.

Today my mouth isn't bothering me.  I think I really need to be extra concientious about rinsing before & after my Asthma medications which I use 6 times a day.  The ideas you have both given me seem sound so I will work with a few of them, alternately.  Again...Thanks for your time & input.

~May You Both Have A Blessed Day~
Joyce..............

[viper]

Hey Joyce,

It is frustrating to say the least for all that can come about in side effects from treatment. But know that all that we may experience while going through TX is not always directly related to the TX. The only true means to diagnose your condition is to go to your doctor. With that said I will commence with my personal experiences with inner mouth problems while doing TX.

I experienced what is known as "Thrush" our simplely a yeast infection in my mouth about 3 months into TX. This is known to occur with patients undergoing treatment.
My doctor prescribed me "NYSTATIN ORAL SUSPENSION USP" which I gargled with 1 teaspoonful and then swallowed 4 times a day. I did this for 4 days and the condition was cleared.

Bear in mined that NYSTATIN is very exspensive a 1 pint bottle costs around $150.00. If insurance covers this that's is great, if it doesn't it can make a dent in ones wallet.

I had another doctor (a friend) I had conversed with tell me of an easy home remedy for thrush which he suggests all the time do to the high cost of NYSTATIN, and which contains the 2 main ingredients found in NYSTATIN. He advised to mix a 50/50 solution of the over the counter products  "Kaopectate" and "Hydrogenperoxide" and to gargle with this solution twice a day BUT DO NOT SWALLOW. I have tried this home remedy method and found it to work as well as the NYSTATIN in clearing the "Thrush" and was a lot less costly.

Again these are solutions which worked well for my diagnosis of "Thrush". I would suggest having your doctor check your condition and determine the cause before implementing any type of home remedies. Your condition may not be "Thrush" and could require a completely different method of treatment.

Hope this has been of some help.

Viper

[19Dragon52]

(((((Viper)))))

Yes you have been of some help...Thanks for the reply to my post.    Between the suggestions I have gotten from you, Robin and Willy plus whatever I come up with gives me plenty of concoctions to try and also alternate.

I am not going to go there with the Nystatin unless I'm absolutely needful ($chi-ching).  I have enough health conditions going on aside from non-detectable Hep C (since 3rd month) & TX that take me down the Yellow Brick Road of Doctors, 2 Insurance Premiums, Co-pays on a wealth of medication and a lot of Lab Work & X-rays on a constant basis.    My husband tells me I am medically High Maintenance and he's right.  That's one of the reasons I will take others' suggestions and my mixtures to come up with (often with more than one or two) positive results from Home Remedies.  Your suggestion about Kaopectate & Hydrogen Peroxide sounds very soothing.   I use my inhalers & Nebulizer combined 6 times a day so that's 12 "Swishings."    Your combo sounds like it would be great for the beginning of the day & the end of the day.  I will be giving that a try probably tomorrow night...and don't worry...I won't be swallowing.

~Have A Great Week~
Thanks Again...........

[robin]

Joyce...since you are already rinsing after using your inhalers, maybe your treating doctor could prescribe something where you didn't have to use it as often...then it would decrease the incidence of exposure to your asthma meds. Seems like there is never an easy solution to anything. Good luck and keep your spirits high...robin

[19Dragon52]

((((( Hey Folks)))))

I went to my PCP yesterday and she told me I have a fungus...ICK!    She gave me a prescription for the Nystatin which my Insurance does cover.  Now, I don't know how she diagnosed me with a fungus...she never looked in my mouth and only saw a crack on the corner of my mouth that I think most of us have gotten at one time of another due to dryness.  And I certainly didn't see a microscope!  If I am sounding a bit sarcastic it may be due to the fact that I also caught the prescription that they gave me for my Thyroid to be a different dosage than what I am suppose to have.  I even called the doctor I had in CA today just to verify.  When I first moved here I gave them a total list of my meds & dosage amounts.  A good lesson for me about assuming!  They have been giving me .05 mg of Synthroid instead of .075.    That could have a lot to do with my tiredness since I got here and the weight gain I was dealing with.  Like Viper said, sometimes it's hard to distinguish between TX side effects and other medical conditions.  Since my TX started last late October I have lost 30 lbs and now that I have the correct dosage of Thyroid it shouldl help me get back or close to my regular weight.  Needless to say, I will be looking for a new PCP.  Intern/MD's...not a good way to go!     I was referred to them during an emergency situation when I first arrived.  I would report them to the "AMA" but most all of  the doctors in this town are intertwined and I would just create a situation for myself where I probably would be black-balled and end up with no doctor accepting me.    So, "Buyer Beware" turns out to be good advice.

I still have all of your advice and will probably be working with those combinations until or if I have another flare-up.  I am leaving myself open to change my mind at a given moment.  I'm pretty much going to play it by need.    I already know but have fudged at times that I need to be rinsing before and after the inhalers & Nebulizer.  So, that's where I will start from because now I am using both more times through the day than ever before.

Well, I wanted all of you to know what seemingly is up since you all took the time to respond with many good suggestions, thoughts, advice and support.... Thank goodness we all have each other's back!

~Here's To Having A Good Day~

Prayers & God's Blessings To All............    

[robin]

Joyce...not meaning to make light of your situation...it happens more frequently than one would realize. Every time I go to the doctor I take a print out of exactly what I take, the amount, frequentcy, diagnosis for taking it and prescribing doctor and things still get mixed up at times. I'll be more than happy to donate about 10 pounds of fat towards your loss if you are willing. Will have it Fed Ex'd over night. I am glad you got something for your raw mouth and if it is yeast (fungus) try eating live culture yogurt...it will feel good on your mouth and help replace the good bacteria. Do I sound like a broken record? Keep yours pirit shigh..robin

[Ella]

Hope your mouth and tongue are improving Joyce.  My mother had a similar thing years ago, also with a crack at the corner of her mouth, and her doctor told her it was probably a vitamin B deficiency.  Lots of medications (including alcohol) can deplete this vitamin.  One shot of vitamin B (don't know if it was a B complex or B12) and the whole thing cleared up permanently.  I agree that your doc was jumping the gun a bit by making a diagnosis without even looking in your mouth!

[19Dragon52]

(((((Robin)))))

No dear, I don't think you are taking it too lightly it's just that I am a Rebel so I have to have a cause!    When I lived here over 28 years ago my PCP almost killed me because of my Bronchial Asthma & Allergies.  He didn't have a clue so I found my own Respiratory/Pulmonary doctor when I got to the point where I couldn't even get off the couch.  He had my condition under control almost immediately.  You're on the right track keeping a list...my sister does that but I know if I took a list into this place the Intern/MD would shush it off and tell me she already has my info.  Robin, I swear that Tuesday she was talking right through me and also in a rush.  I don't feel like paying extremely high Insurance Policies for a doctor whom is inept.    I lived in CA for 28 years and NEVER had this happen so please try to understand my frustration.  Lastly, if so many people experience this why isn't something being done...are we cattle?!   I gave this doctor a complete  medication list along with the phone # to my doctor in CA from the beginning and I have never seen her look at it to change anything or show it to me to verify that it is updated.  All my other doctors (specialists) go over my list to record any changes which I know by heart but sometimes will take the bottles just to be sure as it can get confusing.  Okay, I'm done preaching...my Soap Box is collapsing!    I have made the decision to get another PCP and I will record to my Insurance Companies the reasons.  Once another PCP is in place I can let go of my current feelings and pay more attention from now on.  

Oh Goodness!  I'm not complaining about my weight.    I lost 30 pounds as I have mentioned since TX started.  I will probably lose more now that I have the right dosage for my Thyroid.  Hypothyroidism will cause you to gain weight for what seems like no reason if you are not on the proper dosage of Synthroid.  It will also make you a bit more on the lethargic side without or with less than appropriate dosages.  That's how my PCP in CA found it.   I have had radioactive Cancer tests for my thyroid from the beginning so I am a bit protective about this condition.  I better shut up as I was at least given the Nystatin when I walked out of there!    Yeast...Fungus...YUCK!  I do make a healthy concoction of a super charged Fruit Smoothie and you can bet it is the natural Yogurt!

I do appreciate any input you have given me.  After all you cared enough to post and we can always learn from others.  Oh Yeah!  Please keep your extra ten pounds...I know the thought is there to help but I am totally cool with what I have lost and hope that now it will be a constant of a  little more (in a healthy sense of course).   Even with what I have lost since TX started in Oct. it leaves me still on the over-weight chart.

~Thank You So Very Much~
May God Watch Over You With Many Blessings.....

[19Dragon52]

(((((Ella)))))

Thanks for telling me about the vitamin deficiency.  My priorities at this time have been staying constant with my Hep C TX.  I do have a schedule I follow for vitamins that I thoroughly researched and asked questions about but...I have to admit that I will get on a stupid path of taking them and not taking them.  I think "laziness" has a lot to do with it but then again I just get so tired of taking pills, pills and more pills.   Before we moved here my doctor always gave me a B-12 shot at the end of every appointment.  I have experienced this before, though.  Now that I am thinking about it...awhile back (more current than not) I was taking heavy-duty anti-biotics for my infected lung & sinus congestion...Duh   Me being negligent with making sure I swished & gargled before & after all my Asthma & AIlergy sprays probably hasn't helped.  In all fairness I thought that yeast infections only showed in our private parts which this has not. 

I am in recovery so there's no alcohol or illegal drugs being digested.  Today my mouth is burning without me even irritating it so I am going to go with the Nystatin and hopefully will get some relief soon...I think it takes a little while for that.  You also have reminded me that I need to stay the course on taking all my vitamins...thank you.

I know!  Let's blame it all on TX side effects then I won't have to do any thinking...

Willy had "words of wisdom" about how some of the symptons we acquire don't always have to be related to TX.  You have all been great helping me look at this from different angles.  I truly appreciate everything that has been posted.  I am usually not such a baby but with everyone on me about my decreased appetite and at least staying on small portions...this condition doesn't help.  I will live, after all.

Prayers & God's Blessings.........

[DjTurtle]

Joyce!
I am glad to hear you got some Nystatin, and hope it works as well and as quickly as it did for Viper. Viper agrees that you should look for a new PCP. I think that is bad, if the doc did not even look in your mouth and the prescription thing, I know is something important to your thyroid. I have thyroid problems as well and know how it can effect your energy and your weight. I hope you get to feeling more perky soon!! LOL

gain energy and walk that weight off fast,
DjTurtle



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[viper]

Hey Joyce,

Glad to see your on the right track in getting this issue taken care of. The NYSTATIN should clear it up for you.

Let me address the misnomer about "Yeast" infections however.
Though it is true that it is a very common ailment for women to contract this in their private area (can't rightly blame the little bacterium for choosing that area...LOL), it is not exclusive to that area nor just to women.

Infants contract this quite often during child birth from the mother in the form of "Thrush". Those little white specks that appear in their mouths. Men can contract it from their female partners during sex if, she has it down there, either on their genitals or their mouth...depending on which instrument they choose to please their partner with...LOL.  Unfortunately for us men it is a dead giveaway to the doctor what you were doing when you contracted it if we aren't on antibiotics or have a lowered immune system.

Certain antibiotics or a weakened immune system (which can occur during TX, and/or having Hep-C itself) can cause these bacterium to form.

Viper


Viper

[19Dragon52]

(((((Hi Folks)))))

Just wanted to check in and let you know of at least a couple of updates.  I saw my "Psych" yesterday and told him about all of the mishaps at my Tuesday appointment.  He immediately gave me the names of 2 PCPs'.  That will give me a starting point on Monday.   He is more in touch than even all my specialists. 

I have taken to making sure I get all my vitamins and will persevere to keep that schedule daily.  I am taking the Nystatin 4 times a day since the night I last posted.  In a short time my mouth was back to burning and being raw.    It's still sensitive but am hopeful that I just need more time taking the medication as prescribed.  For the couple times in between when I use my inhaler but it's not time for the medication I have found that a base of sea salt & water with a little dab of whatever I choose or Aloe Vera juice & water are the least irritating.  I am for the time being brushing my teeth with the tiniest bit of baking soda...I found that too much also irritates my mouth lining.

I want to Thank All Of You again for helping me get back on the road to being proactive with this crap.  Meanwhile here I sit, just took my weekly TX shot, waiting to go see Smokey Robinson which I was sure my husband told me began at 6:00 pm...it turns out to be starting at 8:00 pm.  He works for the Casino so we get the inside scoop on all the shows.

~May All Of You Have A Nice Weekend~
Love,
"Dragon Mouth"......