Hep C Discussion Forum

Kellie · Senior Member

RE: Good bye big funky rash - hello nausea & chipmunk face???

hepCFREEwanab · Veteran Member

KELLIE, I just read your posts which made me see why you are so understanding and helpful on the subject of NAUSEA and other SX!

I am so sorry you had to go through that plus the rash and other nasty SX, but I am so glad that the " End justified the means"! You sound like you are in a much better place right now and that the worst is behind you.

I am so glad I am part of this group, I don't know any of you, yet I already feel a connection to many of you.

I look forward to logging in and either sharing or learning something helpful.

Thank you!

MENA

Dillo · Senior Member

Kellie wrote:
Dillo, couldn't do it bro - had to discontinue 10 days early - even standing on my head. Yuk for fat. You got that right. I never ever want to use it again. grrrrrrrr. I'll be lucky to even drink another protein smoothie this year; or PB; or almond butter. blecchhhhh! Thanks for the vote of confidence. It;s just now I'm feeling better enough to respond to your post.
The Waltons aren't so bad. My husband and I are just finishing up the whole 9 seasons of xfiles this month. It's taken about a year and 1/2 to watch them all - I never watched it when it was on primetime.
Maybe Friday the 13th the Series - eh?
Thanks D Kel

Hey you went through the rash..cleared it and was still keeping on so anything over 8 weeks was icing on the cake.

I think that even though the Peg and Riba has it's moments...(like those long moments when you know you still have weeks to go ;) ) ....hopefully it will be better on you.

All them shows are old to me...no offense...I can barely watch a movie more than once...lets try something a little newer...I only have the first season of Fringe...got any newer? ;)

Take care

Kellie · Senior Member

Thanks ckncali - I've never thought I could forge relationships like this online - WOW! - Kel

Kellie · Senior Member

Dillo, couldn't do it bro - had to discontinue 10 days early - even standing on my head. Yuk for fat. You got that right. I never ever want to use it again. grrrrrrrr. I'll be lucky to even drink another protein smoothie this year; or PB; or almond butter. blecchhhhh! Thanks for the vote of confidence. It;s just now I'm feeling better enough to respond to your post.

The Waltons aren't so bad. My husband and I are just finishing up the whole 9 seasons of xfiles this month. It's taken about a year and 1/2 to watch them all - I never watched it when it was on primetime.

Maybe Friday the 13th the Series - eh?

Thanks D Kel

Ckncali · Veteran Member

Hi Kellie, I just want to tell you that I am so sorry you have gone through such a difficult time. It sounds like the worst part is over and you are starting to feel better. You are such a strong person to have gotten yourself through this difficult time. You should be so proud of yourself. Rest and get your strength back and know the worst is behind you. After getting through this you can do anything. Take care and sending you Hugs and good wishes.

Kellie · Senior Member

hi Sandi, really, I did not know that. I'm only 5'1 and 125 lbs. No wonder. keep on truckin' makes me think of the poster my brother had in the 70's lol...feeling a little bit better this a.m. was able to sleep pretty good. Stomach and elimination is still a mess though. Will start a small dose of Triphala today. Slow going.... Feeling grateful about feeling better.....have a fab day k? K

ucbgal · Senior Member

kellie,

thank goodness you're home and can post. it's a sign that you're a survivor!!! we are women and are taking the same amt of meds who weigh

up 2 2x's our weight. for example body builders or overweight men. i personally have a slight build,thus i'm more suspectable to any/every side effect. keep on truckin......

sandy,ucbgal

Kellie · Senior Member

Ps. I already feel 60% more better. My husband is actually making me laugh. Maybe that why my cheeks are fat. Not enough smiling. biggrin

Kellie · Senior Member

Tig, thank you friend. K

Tig · Admin

Hey Kellie, so happy to hear you're on the path to a better place! I've been concerned about you as well, plenty of people have been pulling for you Rest well and know I'm saying a prayer for your continued improvement and happiness! Best, Tig

Kellie · Senior Member

Hi ucb gal, thank you for your message of kindness. I wanted to tell you the rainbow analogy was funny. It made me think of puppies and rainbows..lol

It's has been really rough the last 3 days. The worst of my life (if that is possible) I finally had to go to the hospital this morning as I couldn't hold any water or the medication for 2 days. It was time. I couldn't stay hydrated and the nausea was out of control. It was spiraling quickly down. They wanted to admit me and start the lactated ringers (saline). I was sooooooo uncomfortable. So my NP is out of town, so I get a special visit from the Guru Dr. Pakros. Kindly gentleman, we discussed what was going on - he didn't like the chipmunk cheeks and thought it might be the ribaviran. I think it's the Incivik. So we decided to discontinue the Incivik 10 days early. He said it really wouldn't make too much difference as I cleared vl at 4 weeks. As an added bonus - medication vacation this weekend. No riba until Monday and only if my cheeks deflate. I'll wait to continue the interferon and riba on Weds if that is the case.

Bring on the detox teas. Just hearing that from him made me feel almost 50% better immediately. Traded in the compinzine suppositories for Zofran sublingels. I wasn't admitted and my husband drove me home and I took a 3 hour nap. So we'll see what happens. My life is in the arms of a Power greater than myself. I've done my best. I'll continue with the riba and interferon next week and the next 12 weeks. To others on this stuff or getting ready to start, don't worry. All sx are different. I've always been a thrower upper. Good news all my vitals look good. They wonder why I have no anemia. have a fab day and no worries, I'll be answering all you other kindly folks a bit later. gotta lay down again.k

ucbgal · Senior Member

kellie,

we haven't heard from you and i hope and pray the nausea has subsided. how's your fave doing? please keep yourself well hydrated. not only do i drink coconut h20 but make smoothies with the 20 grams of coconut oil. why don't you give that a try? also i buy those boxes of emergency which are full of wonderful vitamins and potassium as well.

the dosage reduction i suggested is what my dr will suggest when the side effects get too severe. i had severe side effects 10 years ago on soc.

whenever i get really upset i find comfort in the old classics,i love lucy,gilligans island, and of course the sound of music.

sandy,ucbgal

Tig · Admin

Dillo, thanks for posting those links. It's not only interesting to read those comments from the professional's involved, it can give those of us going through treatment more reason to continue. It's important to know the information that supports the proper administration and duration of these complex drugs. Obviously from this report and others I've read recently, this virus has an uncanny ability to outsmart these medications when the patient deviates from the prescribed instructions. It's hard to believe that a virus is intelligent but we've all witnessed it in the HCV virus. Thanks again for sharing those reports and I hope anyone with such valuable information will share it with us.

Dillo · Senior Member

Good your getting rid of the oil. I don't know about you but my handout said "Food" with 20 gms of fat ;) Your most likely going to get sick of foods with 20 gms of fat also. I did... strangely enough Peanut Butter sandwich crackers are a life saver still to this day.

You might also try the 3 dosing times instead of two. Less Incivek a time to digest. (Check 2nd article below)

Two reason to stay on triple

1. SVR

2. Duration

the last weeks you can do standing on your head. The Walton's however would even even me nauseated after a while.

You can renounce the fat...after treatment is over.

Tig · Admin

Hey Kellie, so sorry to hear about the rough patch. Your desire to keep your treatment the most important item in your life is impressive, and it reminds me of the seriousness of sticking with it. It's so important to remember the value you placed on completing the treatment when you started it. It helps others to actually see what some of those side effects will or can be and the strength it takes to stick with it. Your strength now will help countless others in the future. If and when we experience the same bumps in the road, we'll be able to rely on the strength we learned from you. What you're doing now will help not only you, it will serve as a guide to those going through the same thing.

These are the lessons I came here to learn. They're the lessons only you can help us with. It's so valuable to share these problems when you have them, because there must be others either going through them or concerned about what to do when or if it happens to them. In the process it gives those that have gone through it the opportunity to help you hopefully! Your strength helps us help you in a round about way. There is nothing more important to me right now than to help you find some comfort! Right now I can try to bring you the knowledge that your strength is helping me heal and those positive thoughts can hopefully give you the strength to continue! You were the first friend I met here and you offered me help that resolved the worst throat pain I ever imagined. If there is anything I can do for you, just say the word :)

Kellie · Senior Member

Hi checking in, I started this letter yesterday (Wednesday), but felt so bad I'm completing it now Thursday.

Oh you guys, I feel so loved....yesterday has so far been the worst day since treatment. I've been on the couch watching reruns of the Walton's and other things, unable to move much. Actually I hate the TV. But when I'm on the couch feeling like this, tv is better than the show going on in my head.

I did my 10th shot Tuesday night and hello migraine, heartburn, more nausea along with fat face. I been fortunate these last 9 weeks to have so few sx the day after the shot. Those lovely days are over, my NP's nurse, Mora, told me today.

I hate the protein shake with Udo's Oil now. I'm just doing 2 tbls. of PButter the last few days. My wonderful husband went on a fat finding expedition last night - cream cheese, keifer, cottage cheese, Cheetos - I'm really gonna do it up now - ugggg.......Just the though of fat is killin' me. I did get some compazine suppositories for the nausea. So I'll be able to take the medicine. How you folks could do it 3 times a day freakin mystifies me.

Huge Thank U Tig for the heads up with the dentist. I didn't even think about that. I check with Np yesterday and she is ok with the cleaning, as long as there's no deep stuff. I have a mouth full of crowns that get irritable when they don't see Bles (my hygienist) at least every 6 months. I keep my mouth so clean, she jokes that she is only pretending to clean. I wish she would only pretend to bill me too. But I had to cancel this morning as I'm still too sick to leave the house.

Dillo, I love your dry sense of humor. Thank you for making me smile - keep the checkbook handy smile I called the nurse today and she assured me I am not dying(at least not yesterday), even though I feel like it.

Joanne & Ranelle, thanks for the vote of confidence. If I have to get through this last 2 weeks heavily medicated and drowsy, so be it.

UBCgal, hey thank you for the suggestion of lowering the dose for a few days. That's a big NO NO. If I was the queen of my world I'd be doing just that.

You guys are great. Thank you for being there for me. I'll check in sooner than later I hope. Still have the migraine.

I hope you all have a wonderful day. K

ucbgal · Senior Member

kellie,

you're a very strong woman and i know you can do this. have you tried warm compresses with a soothing classical/meditational cd? of course you've tried ice by now. i hate to even say this but how about a reduction in your incivek dose for a day/two? the meds are way too toxic for some of us.

remember everyday you complete a dose of pills is a special "somewhere over the rainbow day!" smile

sandy,ucbgal

Dillo · Senior Member

We can all rant and rave. It's accepted.

Kelly you have done great with all you've been through. To me the last couple of weeks were the hardest with Incivek. Lots of toxic buildup by now as I'm sure you know. At the risk of getting in trouble ..."no never read anything about chipmunk face ;)"

If you can finish don't throw in the towel now. You still have 12 weeks of just Peg and Riba to do. It will have it's problems also.

Forget about ION 3. Your not doing it but if you quit it might be the only option you have left in 2015 or so. No long term results in yet for that. With your Rapid response you shouldn't have any problem getting your SVR if you stay the course. There are some (at least) long term reports in for this.

As they say in the old country..."and there it is"

I can't complain (but sometimes still do) You can hurt me and make me write bad checks later.

JoAnneh · Guru

My gums were too sore to consider
A teeth cleaning. And I had mouth ulcers.
I remember reading that
Malcolm went regularly.
I cancelled teeth cleaning
till the end of my treatment.

Tig · Admin

Interesting news on the dental appt Kellie. I'm scheduled for a cleaning and exam on July 05. I mentioned that to my doctor today and he told me in no uncertain terms to cancel it. He said the only way he would approve it would be if I had an abscess or broken tooth. The chance of problems is evidently quite high he said. I did read that recently which prompted my asking him. Will cancel it tomorrow.

Kellie · Senior Member

thanks tig, no, no dental problem - I'm pretty meticulous about my teeth, but coincidentally I have a teeth cleaning appt. on Thursday. I'll have her take an extra long look to make sure. I'll let you know. I hope your day is going good. I really appreciate the reply. I'm feeling a bit better today. I took a bcomplex today. I've been slacking on the vits lately

Joanne and Ranelle, thank you for letting me rant and validating what I'm going through. It means a lot. K

nurschic · Senior Member

You can do it Kellie! You kicked a$$ for 10 weeks, you can do another 2!

Tig · Admin

Hi Kellie, I also wondered right away if you may be experiencing some type of dental problem. Is there a possibility of that? That nasty taste is a giveaway of the Vic but who knows, could be treatment in general. I hope your day is better and the discomfort improving!

JoAnneh · Guru

Girl you got this! And it's okay to rant
With us. We been there, that's a blessing
Of this forum

Kellie · Senior Member

Hi Joanne and Ranelle, thanks for the support last night. I was quite uncomfortable - especially in my head. My hubby even had to leave for awhile last night while I spun out. furious

I'll continue for the next 2 weeks to make it an even 12. My NP doesn't seem too concerned about the swelling and she said it would be my choice to stop the Incivik early and I could if I wanted. I'll just chalk it up to a really bad day yesterday. This stuff really does a job on my brain chemicals. Funny, I'm doing all the things suggested for mental health and still feel just WACKED Ok I will do this, I will finish the Incivik..... I will finish the Incivik..... I will finish the Incivik..... I will finish the Incivik..... thanks for listening....

oh Ranelle, everyone is different with the sx - some folks just sail through. Don't worry, k? I have always been a bit of a drama queen...

JoAnneh · Guru

Kellie, Do you have a tooth ache that
Could cause the swelling?
Nurschic, Dont worry about no real
Side effects. We all react differently

nurschic · Senior Member

Have you had your thyroid checked lately? Try to stay strong and push on...your so close to the end of Incivek!

When do you start having side effects? Right away or weeks down the road? Im worried that I have no real side effects and I am in week 4, guess I will know if its really working next week with my lab work.

JoAnneh · Guru

Keep us posted, glad you reported
Your symptom to the NP.

Kellie · Senior Member

Once or twice when I had the rash w/o success-

It doesn't really look or feel like an allergic rash - no redness, heat, pain. Just gross disfigurement of my face. I know I maybe or maybe not freaking out about this - it may not be as gross as I am perceiving it- I sent an email to the NP about this tonight - see what she says. It just looks and feels like my blood, liver and kidneys have reached the max with this toxic stuff. I just can't drink enough water to wash this ^&^& out. agggghhh,,

JoAnneh · Guru

Have you taken Benadryl??

Kellie · Senior Member

Thanks Biggyb, I would just like to be sure it's not hurting me more at this point than helping. The subject sounds funny, but I feel like my body has reached my limit with the Incivik, as far as toxicity. I think I'll have a talk with the NP soon to discuss the SVR ratios of 10 or 11 weeks vs. 12. Has anybody heard anything about stopping the incivik just a teeny bit early with a sucessful SVR?

Biggyb · Guru

Try your best to finish the incivik. As long as you can live with some side effects. (can't live without a liver)..Best of Luck !!

Kellie · Senior Member

Hey out there Buds- starting week 10 tomorrow. The good news is the Incivik rash, along with the itch is gone. Now for about a week. I still have 2 weeks to take it, to make it an even 12 weeks. I just have a lot of nausea when I take it now. My face is even puffy now too. Not rashy puffy. Just like chipmunk puffy. The doc has seen it and says my kidneys are fine. She says it may be a symptom of the Incivik. Any takers on this one? Jeez, I hope it goes away. I think my body has had enough of the Incivik. Oh you ION3 peeps, I'm so jealous chipmunk - K

JoAnneh · Guru

Kellie,
I felt the same way while on Invicek.
It was awful but I refused to stop early.
If I don't achieve SVR, at least I know
I did everything possible.

Gotta be all in to get as most
Of a chance to beat Hep C and save our
Liver. We can't live without it.
I know it's hard, but you can do it!

-- Edited by JoAnneh on Tuesday 25th of June 2013 03:41:27 AM

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