Aa
Aa
A
A
A
Close
Avatar universal

Should I Be Concerned?

My mouth sores are spreading to my cheeks and lips. I have lost most of my voice. I have used every over the counter oral healer I can find, plus 3 scripts. I have what looks like the beginning of an infection on my finger.

Right now I am off the riba because of the mouth sores.

Are these still all normal sides? At what point do you get concerned? At what point do you say "enough?"
22 Responses
Sort by: Helpful Oldest Newest
Avatar universal
LOL I laughed so hard at you two's postings!! I love it "Pull up your big girl panties".  Yep thats what it is all about "get a grip" haha and I thought I can do this and pull up my big girl panties!  I might have several wedgies at times but hey...thats ok!  Audrey..I pray your sides let up to give you a much needed break so you will be ready to go for any more new whirl winds! You are in my prayers!
Helpful - 0
Avatar universal
I know that Busbar is not an AD; it is an antianxiety drug; the only one I know of that is not a tranquilizer. I found it to be quite nasty; and it did not help me. Wellbutrin is only one of many good antidepressants - and what is good for one person is not always good for another.

Some of the most common that work for people I know are, zoloft, prozac, effexor, paxil, or one of the newest - lexapro.  Please ask your doc about trying one of these - and if it does not begin to help in a few weeks, trying a different one. I was on 3 before I found that zoloft works best for me.
Helpful - 0
Avatar universal
Its been awhile but I've been sick and am not even on tx yet, because of insurance. Anxiety or something is getting the best of me. I feel as thought about 4 months ago ms. Patients got up and walked out of my body and who ever replaced her, I don't even like! My GI wants to get  me lined  up with  a psychastist (bad spelling)he feels I need mental attention before starting tx and I've never had anything like this before!  They tried AD but I went in the opposite direction and became very angry and short tempered, so they stopped the Wellbutrin and put me on buspar. I've only been on it about 2 wks, feeling less angry very arguemental. Man does anyone know what going on? Or am I just worried.
really confused and scared in NC
Helpful - 0
Avatar universal
You two posted some very powerful messages today.  What a wonderful support group this place is.  Thank you.

Jamie
Helpful - 0
Avatar universal
I am still chuckling. Nope, as a recovering addict, and an aging hippie, I pray I never lose the hardcore humor of my generation. Sex, drugs and rock and roll got me where I am today; the least I can do is pull up my big girl panties and take another step forward.

This is particularly funny to me, because after shot number 2, I did not pull up my big girl panties in time!!

(if there were an old thread with a title, I would name this one "accidents,"
Helpful - 0
Avatar universal
On the contrary, I was hoping I did not come off too harsh. No, your honestly as well as support is much appreciated.

This is a terrible shock to me. I expected certain things, fatigue, pain, achiness ... I did not expect this wild and painful soreness in my mouth, to where the only food that did not cause pain is whipped cream.(or in my case, lite cool whip)Today is a bit better. But even toast feels harsh against my sore tongue. And the adjustment to this new "life" is also a shock. Wanting to run, but barely able to walk. Needing to pull myself up a few stairs. Having to rest while changing the sheets. Giving myself 3 cheers for making it to the grocery store.

Not to mention my new volatile personality. It is a lot like having teenage emotions again. Fine one minute, sad or hurt or mad the next. Then expalining to my 11 year old grandson, who I am raising, that it is NOT him, it is the medications, but would he PLEASE try to coopperate on Monday morning because gramma cannot stand to fight every frigging Monday about him going to school. And trying to explain to him that he is NOT singled out to suffer, we all had to go thru school, not just him. (we do this many times a week - lately it does not amuse me)

I am afraid to say all this in a way, I do not want to scare people away from doing this. It is most certainly worth a try, and not everyones sides are this bad. It is a very individual and personal thing and for each of us our olerance to certain sides is different.

Ah, sometimes you just have to get all of this out. Thanks for letting me vent.
Helpful - 0
Avatar universal
You're doing great to hang in there, girl!  I can't imagine myself having all the sides you do.  We are shot buddies in that I did #7 last night.  I'm so proud of you that you have stuck through it so far and I just know if you can get to the next minute, hour, day, that you will eventually get through the horrible sides and things will start to look up for you.

I also know it's hard when you have a Monday morning "I don't want to go to school" kid on your hands.  I have an 8 year old and EVERY morning is like that (he has slight learning disabilities, so what should come easy for most 8 year olds - spelling, writing - are extremely difficult for my son) and he HATES going to school, although he is an A/B student.  

I saw a sign in a gift shop in St. Augustine, Florida one day that cracked me up.  Please don't be offended, but I think of this saying every now and then and it gets me going for the rest of the day, "Pull up your big girl panties and deal with it!"  Sometimes I have to tell myself that over and over and over just to get through the day.  I only meant that in humor so I hope you take it that way.

Hang tough for your grandson.  He may be a handful now, but with all that lovin' your giving him, he'll turn out to be a wonderful young man soon.  Hope things lighten up for you any minute!
Helpful - 0
Avatar universal
I hope that I didn't come off too harsh with my post, that was not my intention. I just know that when I was on week 8 - 12, it seemed to me to be the hardest of all.  I just want you to give yourself a fair chance to remain on these medicines and keep going for as long as you can.  These medicines are brutal, to say the least but this is all we have right now in order to give ourselves a chance to rid ourselves of this disease, possibly forever.

Most of the side effects are at that time, becoming full blown.  You have a few here and there and then whammy, all hit at once.  I was so overwhelmed with even the thought of doing this medicine for 48 weeks or long.  I am with you, I am where you are now. Minute by minute, hour by hour and then those hours turn out to be days, months and then wella.......44 weeks for me.

I wanted to stop my medicines and this treatment so many, many times. My mind was reeling.  I had to make drastic changes in my lifestyle. I had to figure out what I was to do all day to keep myself and my mind busy.  I had to figure out what to do to get through this time that I needed to allow myself.

I had it the hardest with having to take time off of work.  I put in my leave of absense a couple of weeks before beginning my medicines.  My boss didn't know that I was going to do the treatment and doesn't know that I had hepC.  He had a hard time dealing with my absense and didn't take it well at all when I told him that I needed to disappear for a while and do somethings for just me.  It was very very difficult for me to do that.  I worked for a large company and assisted a CEO who had a very high profile lifestyle and I did things all the way from making sure his children were safe while he travelled all over the world to directing his staff and constantly being under pressure to make sure that they completed tasks, to purchasing homes for him in different cities (which he didn't even see by the way) we conversed over the telephone and he said 'buy it'.  All that was lost when I decided to start my treatment.  I didn't care about my job, I didn't care about his children and I didn't care about his 'high profile sometimes good and sometimes bad' life.  I cared about me.  I knew that I wouldn't be able to work at my present position and pull it off at all.  I knew that I had to concentrate on me and on me only.  I have done just that for 44 weeks now.

By no means are you to do this or remain on these medications if it is life threatening, but to hear me talk from about week 8 to week 20 I absolutely told my GI and my other physician and my husband that I couldn't continue this way.  I couldn't keep taking these medicines, they were making me so sick. I remember saying to myself over and over, I can't believe someone can feel this bad and still be walking around or at times, even existing.

I know it is so hard. I know that you are on a minute by minute basis now.  I pray for you that things will let up a little for you right now and that you can keep going.

You can cry. It is all so normal and such a shock to our bodies and minds that you have to let it out in your own way.  You can cry.  I am crying right now as I type this to you. I know you are miserable and in pain.  It WILL get better.  You will get some relief.

Helpful - 0
Avatar universal
For sure my doc is the one who took me off the riba for a week; after trying a variety of stuff to help. Much as these meds are rough, I would not presume to take myself PARTIALLY off. If I stopped myself, it would be everything.

I am doing shot 8 tomorrow. And I can't even take it a day at a time anymore - its an hour or a minute. And I will do my best to stick with this, but I will not do this "no matter what." I have read of things that would certainly stop me, needing blood transfusions, heart problems, sucidal and homicidal thoughts, mouth sores that keep getting worse. I NEED to allow myself the possibility that if it becomes unbearable I can stop. At only 8 weeks,  any other way of thinking would be too much. So far, I can take it - but only for another hour, and another one, and maybe one more.

Doing this, I have been clean and sober for 18 years.

Forgive me, I needed to get this out. It is so rough for me right now I could cry.
Helpful - 0
Avatar universal
Audrey, I am so sorry to hear of your problem. I will pray for you.


Lolly, Take Audrey's advise...GET ANOTHER DOCTOR......You also will be in my prayers. Cindee
Helpful - 0
Avatar universal
Sorry you are going through this but honestly, there is more to come.  If I remember right, you are just starting your meds?  Audrey, is your doctor aware that you have stopped taking the riba. He/She is the only one who makes the decision if you stop treatment, decrease your medicines, take a break for a minute or so or jump off these meds completely.  If your doctor doesn't know that you stopped the riba, call immediately.  This is the doctors decision, not ours. If it were my decision to stop my meds, I would of stopped about 40 weeks ago.  I am on my 44 week now so I was definatly going to make the decision to stop around week 4 or 5.  I couldn't my doctor wouldn't allow it.  

The only time that you can stop is if it gets so bad that you can't lift your head up, literally and if your blood tests are coming back so wildly weird that you doctor can't control your numbers with assistance of other meds.  Talk to you doctor.

There are all types of normal sides on this treatment.  Some are mild and other are almost unbearable.  You have to do the treatment and take what ever it gives you on a daily basis.  That's why you started, to treat and to finish your treatment...right?

At what point do you get concerned? At what point do you say "enough you ask?  You don't.  You have to keep going.  This is what it is.

Be strong  - we are here to help you.  You will have good days ahead..not all bad.   You will see !!

Hugs!!!

Lolly
This is crazy that your husband's doc is taking this approach.  This doctor needs maybe to have some quiet time in his office for just himself and bring himself up to speed with these meds and the effects of these meds and how successful and unsuccessful this treatment can be.

I can't imaging being able to do this treatment without assistance of an AD. Some people do and have but I think it is unnecessary to take that approach.  Now that I know what I know about this whole deal at week 44, I would never consider or never do these combo treatment drugs without an AD/sleeper.

Sleep is the only time that this whole thing can somewhat block out of your mind.  If I wasn't able to sleep at night and let this go for a while, I would have gone stark raving mad.

Call your primary physician, he can help or refer your husband to a therapist who will be able to help and prescribe someting that will assist your husbands success.
Helpful - 0
Avatar universal
Hi, OHC,
I'd say as soon as THAT reading starts repeating the same ideas, it's time for some mystery, sci fi, or funny books... use diversionary tactics...
Please send us some sunshine!
Maj Neni - from the Far Side
Helpful - 0
Avatar universal
If money is a problem, Ambien is newer and more costly, I use (Restoril)Temazepam which is an older less expensive, but very effective sleeping pill.  Lolly, dont worry about going over your liver Dr, my liver doc wasnt helpful at all with my sides which hit me hard at first.  He got tired of me whining and said to go to my family/primary doc for any and all sides....who gave me exactly what I needed and wanted for so long!  I am coasting along okay, still depressed but seeing a counselor and reading books on how to manage/cope better.  OHC
Helpful - 0
Avatar universal
depression is a common side effect but that does not mean you should just shrug it off!  it is also a VERY TREATABLE side effect.  If your doctor isn't willing to prescribe anti-dep meds for your husband you need to consult with someone else.  Your doc should not only be concerned for your husband's well being and safety, but also compliance.  If your husband is depressed, he will be that much more likely to discontinue the meds.  His physician is behaving in a very irresponsible manner to say the least.  I would start by calling him and making another request to treat the depression.  Another alternative is to talk to the pharmacist where he gets his meds.  You can explain the side effects that your husband is experiencing &  I'm sure the pharmacist will call the doctor and tell him that there is a problem with the therapy.  Hang in there and good luck.
Helpful - 0
Avatar universal
There are no "boundries" when you are dealing with poor health care! Step HARD and LONG on any toes necessary when it comes to what your poor hubby might need. This is serious business and to hell with anyone who tells you otherwise, including and especially the doctors, remember, they are "praticing the "ART" of medicine". Your man is counting on YOU to get him through this and you shouldn't worry about making someone mad.......you need the attitude that THEY should worry about YOU getting mad. You gotta make them listen to you, whatever it takes. Some manage to get through these meds with no AD, some can't. Those that can't, need help from those of us that are trying our damnedest to help/support them survive this ride through hell. I am speaking from experience on this.....my hubby of 20 years is 3a doing his second round after relapse......3/48 tonight (cause the know it all docs screwed up). This is some tuff business and is sure isn't a game for sissys. Stand up for your man, he is in no position to do it for himself........from the sounds of your post, you love him dearly and it is up to you to get him the help he needs. I am sorry if it seems that I am rambling...but this is a very passionate subject for me and mine, and you have touched on a very very important issue, poor health care. Just remember, your husband is counting on you weather you or he realize it or not. Again, I am sorry for rambling on. I will keep you both in my prayers. GODS SPEED ALL!
Helpful - 0
Avatar universal
Lori, You said he cries at the drop of the hat and yes...I have noticed that I am very emotional lately and cry at all movies and just small things that I normally wouldn't cry at..I'm finding I am very emotional but...I'm not depressed..if that makes sense.  I know that is hard for alot of normal people to believe but this tx does make me emotional and I hate that at times I can't control it but think its just the medicine.
Helpful - 0
Avatar universal
Thanks for the advice.  I'm just trying to not make too much waves.  My hubby is very vulnerable right now.  I've been with him over 20 years and ever since tx he cries at a drop of a hat.  I feel so bad for him.  I will definitely call our family doc and see what he says.  I feel like I'm stepping over my boundries a little bit, but I just want him to not have one more issue along with the rash, itchiness, sore eyes, lack of appetite, etc...  <sigh>

Thanks everyone,
Lori
Helpful - 0
Avatar universal
Did I read you right? His doc dismissed depression? And this is a leading Hep C doc?  Lori, the main concern of the medical people is the mental side effects of these drugs. I asked 2 different very knowledgeable medical people if any patients have died on this tx - they both said only from suicide.

PLEASE look into having your husband see another doc. This one sounds extremely unfeeling, to say the least.
Helpful - 0
Avatar universal
I know you are concerned about your hubby as anyone would be.  If it was me...I would just call my family dr and tell him that my husband was needing some sleeping pills and ad...only if needed.  The alt level coming down that much is wonderful!!  It shows that tx is working.
Helpful - 0
Avatar universal
Sorry to barge in on the post, but I'm looking for some advice.  My hubby just took 9/48.  His viral load at the start was 16 million and his ALT level was 1100.  He's a 1a/stage 3.  He just had his first check up with his hep doc since being on tx.  he had a list of questions but barely got to them because his doc is one of the leading hep docs here and was overbooked.  i REALLY wanted him to go on ad's because he is so depressed on the meds. But the doc dismissed it and said it was one of the side effects and it would pass.  I also told him to ask about Ambien since he can't sleep at night but the doc asked him a few questions and said "it's not that bad."  I was really upset but my hubby doesn't want to make waves since it was hard getting this doc and the doc just told him that his ALT level dropped down to 35 from 1100 and that it was a good sign.  Any advice????  Sorry this is so long.  After 20 years of living with my soulmate I KNOW when he's depressed!  

Thanks for listening,
Lori (wife of fellow hepper Nik)
Helpful - 0
Avatar universal
Audreywald, Prior to treatment I would get the occasional lip outbreak of Herpes Simplex type 1. All outbreaks would be on the outer lips. After treatment I got a very sore herpetic outbreak on the roof of my mouth. Never in the past had I had intraoral out breaks. That went away and I suffered from a low grade sorethroat for about 4 weeks. Then a few weeks ago I developed a viral oral stomatitis with an extremely sore uvulitis (red, swollen, pitted) and pharangitis. It was soooo sore I called my physician, got a few vicodin and waited this thing out. After a week of being on jello and ice cream it went away. That major nusance was gone. Gee can't wait for the next out break!!!

I pray this clears up for you. Yes I believe that with the immunosuppresive antineoplastic medication we take in the form of either Riba or Peg, or the combo, that we are succeptable to the oral viral outbreaks. Hang in there. There are antivirals in the form of famvir or others that may help but these are usually in the initial stages of developing the viral sores. You got to get in to see your doctor. The effect of the vicodin was dramatic in how it relieved my discomfort.

I will pray for you

Dale
Helpful - 0
Avatar universal
Have you gone in to see your doctor or just talked to him over the phone?  I would go in and have him run some tests to find out if it is related to the riba or other meds that you are on.  If you've lost your voice, there may be a possibility that it is traveling down your throat.  Please call TODAY and get an appointment for TODAY.  Don't take a chance with this.

Jamie
Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.