Treatment symptoms

[Laura764]

Just when I thought things couldn't get any worse, I am  now feeling light headed and have almost completely lost my taste for food.  I'm hoping that has something to do with the fact that my mouth is red and raw and burning all the time.  I called my doctor after getting some advice to request some magic mouthwash or anything that may help, but he hasn't deemed it necessary to return my call yet.  That's what you get when you deal with the VA.  Anyway, I take my  shots on Thursday and had gotten used to the fact that Thursday night and all of Friday are lost due to  flu-like symptoms.  But the light-headedness and lack of appetite and burning mouth are really starting to get me down.  I am only on week four of the treatment and I'm hoping there isn't much  more that may happen from here on.  Sorry to complain so much, but I don't know of anyone  else who can understand the way  you guys can.  Thanks for all your help.

[thegypsy9164]

Hello Laura,

I had horrible symptoms throughout treatment both times that I treated.  It was simply a part of the commitment to the medications as they produce many varied undesireable little yucky things.  I could list about 25 things that went on with me during treatment.  Here's the thing though.  As undesireable as the symptoms may be, if you can just do your best to keep your commitment to the treatment for as long as you possible can, then the meds may clear the virus and you'll never have to deal with it again.  Being alone *****.  I have kids but they didn't really understand the level of misery I went through so it was if I was alone dealing with things.  This site is filled with loving caring people who are going through the same thing as you and will be here for you any time you need.

God Bless
Joey

[Lynno711]

Laura - I Forgot to tell you.  The corners of my mouth were also splitting GROSS.
Dentist also told me Monistat (neosporin)

He also told me to take Vitamin E capsules, sounds weird, but it cleared it right up.

Again - Good Luck - Lynne

[14cheri]

I am into the 8th wk of tx. Everything had ben going great untill!!!!! I started getting very red in the corners of my mouth. I felt like I had been burned. I did get a few of thoes bumps you get on your tongue also. It also got sore like when we were kids and got thoes giant sweetarts and licked them til our tongue was sore LOL My dentist called in some magic mouthwash. It works ok, it taste nasty and it doesn;t last very long.Then I went in to see the dentist to get them cleaned.I said my mouth hurts in the corners he said you have a fungus---yeast infection.He said  I know this sounds gross but rub some monistat in the corners of your mouth. Believe or not it works.!!!!!!! The next day it was almost completely gone. I would have tried anything. Believe me it really does work

[Lynno711]

I also used Biotene, toothpaste, gel and gum.  Also gargled with 3% hydrogen peroxide soultion
Just a little advice - have your Dentist follow you, dry mouth is a playground for all kinds of Bacteria, spent lots of $$ on the Dentist, lots of cavities, due to dry mouth
As far as burning goes you may have to stay away from spicy foods for a while
I'm finished Txing now, one thing I've learned, no sx. lasts forever they come and go!
All that lasted with me was being tired, changed my lifestyle and got used to it

Good Luck - Lynne

[jdwithhcv]

The lightheaded feeling could be anemia.  At week 4 you are just getting to the place where many people have their hgb begin to crash.  Have you had a CBC recently?  Ask your doc to check, and if your hgb is dropping ask them for Procrit (if hgb goes below 10).  Hang in there, and good luck.

jd

[jonney4141]

i am same treatment i am on week 28 of 48 geno1b. oh no about the move to florida.  you will be ok, you will learn when to get out and make sure you wear shades and cover up that sun did a number on me in the beginning, if you start itching like crazy get some benadry and take care of it right away, it happened to me around 5th or 6th shot, got that under control now am experiencing the dizziness and may have to take something to get wbc up. hang in there it does get better, i am undetectable so this is worth it for me. everyones sides are different so you may not get what i had, but if it were not for this forum i would of probably flipped out and quit, everyone pretty much (and still do) guide me on what to expect or what to do and how to handle things. keep in touch
jonney

[Laura764]

Thanks for the advice.  I am scheduled for 48 weeks of treatment and just finished my 4th shot on Thursday.  I have an appointment for labs and renewal  of meds this Thursday and will know more then.  My doctor advised me to avoid the sun and here I just retired from Virginia to this lovely sunshine state of Florida!

[jonney4141]

Hi Laura, i went thru this too, i love spicey foods, but had to stop, i gargled with a little bit of hydrogen peroxide mixed with some warm water.(not gargled but swished it around in my mouth) and rinsed, i also took a cotton swab dipped in hydrogen peroxide to clean the sores on outside of mouth.Make sure you brush and especially before bed.for lightheadedness i walked and did things slowly, and did not go out into the sun. how long are you on treatment for? well we will be here if you have questions.
jonney

[Laura764]

Thanks for the advice.  I will buy some biotene tomorrow.  I'm determined to hang in there, but I live alone and sometimes you just need someone to bounce things off.

[tulsatime]

I too used Boitene during treatment. Hang in there, things do get better. The flu like symptoms do get better with time. I never had the buring thing but my mouth was dry all right. If they don't call back soon go buy some biotene mouth wash and use it several times a day. It produces your saliva glands to work better. At least for me it did.
Take care. You are not a complainer. We all need to get outside input and this is the place to come.

[skersj]

Boitene toothpaste and mouthwash helped me and staying away from crunchy, salty or spicy food. Ketchup feels like hot sauce to my mouth! Hang in there, as time goes on, you learn what works for you. Hope you feel better soon.