Side effects of combo therapy

[Ella Mackenzie]

Hello everyone,
This is my second day of peg. + copeg therapy. I have Hep C type 3A with a 3 mill viral load. I started on Wed. evening.

I was so anxious about giving myself the shot but it was not as bad as I had anticipated. I took Tylenol and fell asleep right away only to wake to severe chills. I thought my body had gone into shock. This lasted for around an hour and then I fell back to sleep. Yesterday, I felt mildly ill but nothing like I had anticipated. Today, I feel pretty much the same. A little achy and not quite my normal self but manageable.

Am I being overly optimistic in thinking this is as bad as it will get?? I had anticipated much much worse. Does the medicine build on itself so that over time, it gets worse?

My doctor said if the symptoms get too severe, he will put me on disability. Is this common?

I am so glad to have found this site and I appreciate any input, suggestions or comments.

Thank you,

Ella

[Indiana]

Waiting months is not a problem.....waiting YEARS can be. HCV moves slowly....at first. A few more months won't matter.
Gives you time to prepare. Get the hep A & B vaccinations while you're waiting. Tha B is a series and takes a few months to complete. You can start that ball rolling now while you're waiting.........   Do NOT let them talk you out of them either. You should ALL have them if you're gonna do tx.

[MajNeni]

Hello, and welcome.  Sorry you're eligible for membership.
HepC moves slowly.  The six months' wait should not be a great problem, on its face, especially since your other tests are coming in normal or very close to normal. Your viral load is still fairly low, as well.
Most doctors require a biopsy to determine how much liver damage has occurred; that is characterized in Stages 1-4 (from very mild to moderate fibrosis to cirrhosis) and Grade 1-4 (level of inflammatory activity).  (If these numbers are low, you have more time.)  You also need to get a (blood) test to determine your Genotype, because that will affect the particular dosing and length of treatment: genotype 1 and 4 have higher doses and typically treat for 48 weeks; genotypes 2 and 3 treat for 24 weeks and have lower doses of Ribavirin.  
Perhaps your local physicians can arrange to have these tests performed sooner.  These results will help Dr.Shiff's team make decisions sooner, and they may set your mind at ease in the meantime.
I'm sorry you've had so many problems.  If I were in your place, I'd also choose to be treated by the UM team.  Dr.Shiff is a big "HCV star", and may be less accessible than other members of his team... so you may be handed off often.  I'd rather be dealing with the same caretaker consistently... just a thought.
Maj Neni

[Xenigma]

Thank you for your input.  I'm gonna wait to see what my doc says about the wait for my first appt. and then make a decision from there.  I think I would feel better going to someone that was on Schiffs team.  I'll get back to you when I hear something.  Have a wonderful weekend!!!
Hugs,
Enigma

[Martee]

I live in South Florida, and yes you are absolutely right about the UM hepatologists team.
Dr. Schiff is very well known, and many swear by him.
However, if you choose not to wait until August you might want to make an appointment with my doctor. He used to work on the same team with Dr. Schiff, and he is excellent and very well spoke of.
If you're interested, email me at sk4914. :)

[Xenigma]

Hi everyone. Happy Valentine's Day!!
I'm new to the forum, having been reading the post's for the past couple of weeks while waiting on my labs to come back. I give each and everyone of you a big pat on the back! Keep up the positive attitude and those injections. I hope to be able to take them soon too. On to my dilemma.. I'll try to make a long story short ( yuh-right! LOL) 22 years ago I was diagnosed with HepB and was hospitalized for a few days.(I was quite ill and dehydrated) Since then I went on with my life and 11 years ago starting having RA symptoms.(Achy joints, fluid in the knees etc) Went to the Rheumatologist and he did tests for Hepatitis.  It came back the I had A, B, & C!  YIKES!  He told me I was lucky that since I live in Ft. Lauderdale I'm very close to best Hep Dr's in the country which are at U of Miami.  He told me to make an appointment with them which I never did.
They weren't on my plan at the time and when I told my PCP about my symptoms and how they are a residual from the Hep he looked at me funny as did my cardiologist. So... I felt well and life goes on....and so did the RA symptoms.
Raynauds came next, Sjogrens a little while later and the Fibro has been getting worse.  Here I am 11 years later and went to a new Rheumatologist 3 weeks ago who did testing.  (BTW my RA has been high on my bloodwork these past 6 years.) Apparently, I beat the B and it is no longer an issue, but with the C coming back repeatedly reactive he then ordered a RNA PCR.  My viral load is 1,370,000 but all other test were normal. ALT-AST-Urine etc..all normal. He told me to make an appt. with the docs at the U of Miami (Dr. Schiff and his team) I called yesterday and the 1st appt available is the end of August. I took it but am wondering if that is too long to wait? I want to see the best and am willing to wait but will it be detrimentel to the disease and treatment? I put a call in to my doc to see what he thinks but you guys have been through this, and I value your opinion. With my labs coming back good (except for the viral load) maybe it will be OK? I'm curious about the Milk Thistle also.  Maybe I should try that until the summer and see if it really does help.  I appreciate you taking the time to read and respond.  Thank you!!
Enigma

[cindee]

Don't know what happened there...sorry it posted 2x and it was such a longggggggggggggg post. I'm gonna re-boot. This computer is really messing up. Sorry again for using up so much space. Cindee

[cindee]

Ella, HI and welcome! I too will not sugar coat my sx (side effects). I am a little over 3 months post tx.(treatment). My first shot wasn't too bad. My husband went w/ me to my counslor, who talked w/ us for about 2 hrs. and then he gave me my 1st shot. It was during an ice storm. We went to eat afterwards. Then we decided to get a few things from the grocery. About 2 or 3 hrs had passed since shot, driving home was slow due to weather. We got about 10 mins. into shopping....store was running on a generator, I had to hold onto the shopping cart, I got very weak and felt sick on my stomach. We hurried home @ I went to bed. I was pretty sick all week-end. The first 7 wks were a breeze. I thought gee...this is gonna be a "walk in the park"! WRONG!!!! I was able to work until Jan. 27th @ we had been out of work for 5 days due to snow. I had rested all 5 days. My co. @ co-workers knew it was just a matter of time, before I would have to stop work. I had spent a lot of work time in the bathrm. sick. So I didn't go back to work. I was hoping I could stay home a couple of wks @ then return to work, but I was so fatiqued, I had to go on disability @ I am still on disability. I was recently diagnosed w/ fibromyalgia which is trauma related. I went thru a rough time on tx. @ I have had alot of family problems too. I see a pain specialist Tues. I wish for you an easy tx. time. ALWAYS REMEMBER...EVERYONE'S SX. ARE DIFFERENT. Just hang in there, we will be here to help. Much love @ many prayers, Cindee

TnHepGuy.....You go!!!! You are on your way!!!! "Kill the dragon"!!! prayers, Cindee

fubarcat...I know exactly what ya mean about the fatique!!!!! I too had red spots @ injection site...they stayed so long that I could count them!! The red spots became a "map" to me, so to know where to inject next time!!!! LOL In about the 5th month they stopped. I hope yous will stop as well. Hang in there and keep us posted! Luv, Cindee

hph...just wanted to say I am glad you are feeling good. Keep up the great spirits!!! prayers to all, Cindee

marichandra, YOU ARE ALMOST THERE!!!!! yeahhhhhhhhhh, Cindee

downthisroad, I felt the same way about wanting to quit, but don't you dare!!!! Many times I wanted to stomp my meds and throw in the towel, but I made it @ you can too! Cindee

revenire....I was just waiting for someone to look @ me wrong @ I was ready to "let them have it too". Take care...ps get rid of the AX !!!!!LOL
Hats off to you on the 58!!!Cindee

Audrey, hey girl. Get a prescription for MAJIC MOUTH..it's the best thing since chocolate...but not because of the taste!!! YUK!!!I PROMISE it will work, I used 2 bottles during tx....ask for some diflocan also...one tablet will work for wks. I couln't eat hardly anything because of my mouth. You're primary care doctor will give you these things to help. Don't go off the meds!!!! Let me know when you get the meds for your mouth!
And eat YOGURT everyday!!!! love ya gal, Cindee

debbiedo, shortness of breathe was one of my bad sx. It was hard to get a full sentence out, w/o gasping for breathe, but it went away, when I finished my 48. Best of luck @ prayers, Cindee

Harley Dude, Just my thoughts...your doctor is being very smart, he wants you to be SVR all the way!!!!! Good Luck, Cindee

[cindee]

Ella, HI and welcome! I too will not sugar coat my sx (side effects). I am a little over 3 months post tx.(treatment). My first shot wasn't too bad. My husband went w/ me to my counslor, who talked w/ us for about 2 hrs. and then he gave me my 1st shot. It was during an ice storm. We went to eat afterwards. Then we decided to get a few things from the grocery. About 2 or 3 hrs had passed since shot, driving home was slow due to weather. We got about 10 mins. into shopping....store was running on a generator, I had to hold onto the shopping cart, I got very weak and felt sick on my stomach. We hurried home @ I went to bed. I was pretty sick all week-end. The first 7 wks were a breeze. I thought gee...this is gonna be a "walk in the park"! WRONG!!!! I was able to work until Jan. 27th @ we had been out of work for 5 days due to snow. I had rested all 5 days. My co. @ co-workers knew it was just a matter of time, before I would have to stop work. I had spent a lot of work time in the bathrm. sick. So I didn't go back to work. I was hoping I could stay home a couple of wks @ then return to work, but I was so fatiqued, I had to go on disability @ I am still on disability. I was recently diagnosed w/ fibromyalgia which is trauma related. I went thru a rough time on tx. @ I have had alot of family problems too. I see a pain specialist Tues. I wish for you an easy tx. time. ALWAYS REMEMBER...EVERYONE'S SX. ARE DIFFERENT. Just hang in there, we will be here to help. Much love @ many prayers, Cindee

TnHepGuy.....You go!!!! You are on your way!!!! "Kill the dragon"!!! prayers, Cindee

fubarcat...I know exactly what ya mean about the fatique!!!!! I too had red spots @ injection site...they stayed so long that I could count them!! The red spots became a "map" to me, so to know where to inject next time!!!! LOL In about the 5th month they stopped. I hope yous will stop as well. Hang in there and keep us posted! Luv, Cindee

hph...just wanted to say I am glad you are feeling good. Keep up the great spirits!!! prayers to all, Cindee

marichandra, YOU ARE ALMOST THERE!!!!! yeahhhhhhhhhh, Cindee

downthisroad, I felt the same way about wanting to quit, but don't you dare!!!! Many times I wanted to stomp my meds and throw in the towel, but I made it @ you can too! Cindee

revenire....I was just waiting for someone to look @ me wrong @ I was ready to "let them have it too". Take care...ps get rid of the AX !!!!!LOL
Hats off to you on the 58!!!Cindee

Audrey, hey girl. Get a prescription for MAJIC MOUTH..it's the best thing since chocolate...but not because of the taste!!! YUK!!!I PROMISE it will work, I used 2 bottles during tx....ask for some diflocan also...one tablet will work for wks. I couln't eat hardly anything because of my mouth. You're primary care doctor will give you these things to help. Don't go off the meds!!!! Let me know when you get the meds for your mouth!
And eat YOGURT everyday!!!! love ya gal, Cindee

debbiedo, shortness of breathe was one of my bad sx. It was hard to get a full sentence out, w/o gasping for breathe, but it went away, when I finished my 48. Best of luck @ prayers, Cindee

Harley Dude, Just my thoughts...your doctor is being very smart, he wants you to be SVR all the way!!!!! Good Luck, Cindee

[harley dude]

Congrats on being at #42, I just did #35,  how do you feel about going longer, was it your idea to go longer or the GI's, and why, I guess I should remember your story, but it's hard to remember mine at times. Mine was suppose to be a quick 24 and go home(I was the lucky geno 2) though I thought I was lucky till the GI suggested to go another 24 not until I did # 23 he suggested to go on. I'll still have my doubts about that one. Well let me know why you are going longer and good luck-- HD

[reposyco]

i was having these big red welps at the injection site and saw on an earlier post to draw your shot mine 5cc and then draw 1cc of air .turn needle upside down needle down and tap air to the bottom and inject.i thought damn air i thought was bad but it worked and no more red welps and itching.....delores

[DebbieDo]

I, too, have occasional nose bleeds.......my nose is so dry and i have done everything.......i think i will get an antibotic from the doc to clear this sinus thing up........this is my worst side.........  :) day by day........sometimes while walking i get alittle short of breath......you have to concentrate on breathing........best of luck ....i do #8 Monday

[audreywald]

It seems that the truest thing about these meds is their  unpredictability. I have had much of what you all have mentioned and I have had hours of feeling good. My most troublesome side right now is horrendous mouth/tongue sores. I have red and white spots all over my mouth and it feels as if I burned it. My doc may take me off the riba for a week if the antiviral they gave me does not begin to work.

I am learning to expect the unexpected.

[Revenire]

It is very hard to predict how treatment will affect each person.

Everyone gets anemic from the ribavarin, that's a given -- so fatigue is something all of us feel to one extent or another. Luckily, there is Procrit to deal with that and it is VITAL to maintain your dose of ribavarin, especially during the first few months. I would not let the doctor reduce your dose of ribavarin but instead demand Procrit and back it up with some facts. Prove it to the doctor. Unless they are used to treating HCV many of them don't know how to tailor treatment for us -- surprising but very, very true.

I've heard of people in such pain they can't get out of bed. Those cases seem to be rare though.

Others seem to breeze through treatment without many serious sides. Those cases also seem to be rare. HA. Sorry ...

I am on week 58 and the first few months of treatment were pretty easy compared to the last few. It becomes a slog in the mud, up the mountain, whatever metaphor you want to use.

My main side was fatigue, feeling like &@^_ most of the time, and an emotional roller coaster ride with frequent 'outbursts'. I broke a few drinking glasses (tossing them at the fireplace) and one of my wife's ashtrays. I 'flipped' out more than once but I didn't take an ax to anyone or physically hurt anyone, other than with words -- and words hurt. (There was a cop one day doing his radar-speed-trap thing, I was on the way home from the hospital and I was really RIBA-RAGING out and speeding -- maybe going 45 in a 35 -- I looked at him, right at him, and in my mind I said 'Go ahead cop, just pull me over and I will give you a mouthful of hell that you will feel so sorry for me you won't give me the ticket.' He didn't pull me over and I got over my angry self-pity mood in a hour or so.) I don't mean to make light of this because it is pretty serious stuff we're taking here. I respect treatment a lot more after going through it.

The best advice I can give is take it a day at a time, drink your water, get something to help you sleep if you have trouble, and get an AD or something like Xanax to take the edge off of the tremendous anxiety this disease and the medicine we take for it causes. Keep on top of your doctor and nurse, your bloodwork, etc. I was the one that suggested Neupogen to my nurse ... he said "We don't do that here." Right.

[DownThisRoad]

You can't predict what these medicine will do, or will not do.  This not only holds true regarding the ill side effects they can/may cause but also hold true regarding if they work and clear out the virus. It sounds cruel, but that is just the way it is.  Having hepatitis C and treating this disease is not easy to the mind, body and soul but there are many success stories with clearing the virus and staying clear of this disease.

I'm on week 42 of 48 and looking at a possible extension of 6-8 weeks past my 48 week point.  There were days that I really, really wanted to stop my treatment, there were days that I didn't feel ill whatsoever and there were days that I didn't feel well at all.

You just have to keep going and cope and deal with whatever you will feel while on treatment.  So in other words, no matter if you feel so bad or you feel so good you just have to keep going and continue to take the medicines.

[MariChandra]

I so agree that this treatment can teach us patience and to live in the moment.  I had a very easy first 5 months. Few side effects - just some fevers and aches.  But be ready for anything at anytime.  I now am on disability - since mid November.  I can be at the grocery store at noon and in the emergency room with a killer nosebleed needing transfusions by 4:00.  My advice is to cherish the good days (or hours) and keep up with all your blood work (get copies and become an advocate for yourself).  
This forum helps you know that you are not in this alone and since others are on the same path - it keeps you from thinking you are crazy.
I am 40/48 or 52 and taking it day by day.
Happy Valentine's Day

[hph5477]

Same for me the 1st wk.  2nd wk was bad for me as well.  Got headaches really bad which turned into migraines but now take Imitrex for those which has helped tremendously.  My first 2 wks have by far been the worst for me.  Most wks now I just have mild sx; feel a little achy and draggy but I just try to rest and not overdo it day of shot and day after.  Hasn't kept me from doing anything that I really want to do.

Just did 18/48 this AM.  I always take 2 tylenol before I go to bed on shot day and didn't last wk so woke with the fever/chills which also seemed to drag me down some the next day as well.  Won't make that mistake again.  Feeling pretty good this afternoon so far.
    Good luck with your sx.  Hope they are minimal.

[Fubarcat]

I am a 1B on PegIntron/Riba, so a little different than you, but the side effects are different for everyone.  My first two injections made me feel like I had arthritis in my hips and wrists.  I never had chills, fevers, nausa and I still haven't.  I'm on #6 tonight.  From the beginning, I have had fatigue, some days so bad I can't get out of bed.  In the last 6 weeks, I have missed two days of work.  But, over the last week, I have noticed a definite improvement with the fatigue.  The last side I have is huge red welts at the injection site.  The first one has just finally disappeared.  I think the trick is to not "expect" anything and then just deal with what you get.  You may not get anything worse than you have, and then again, it may hit you a few weeks down the road.  Some people feel pretty much ok and find the sides manageable throughout the entire treatment and some people must go out on disability or quit work altogether.  My advice:  Try to have as positive an attitude as you can, think good thoughts, take Tylenol/Motrin/Aleve when you need to and just take things much easier with naps whenever needed.  If you feel like things are too severe, call your doctor and let him help you.  But don't expect the worst because then you will talk yourself right into it.  

Hang in there.  E-mail this board whenever you want, and you will always receive help, support and big hugs from us all!

[mrsklg67]

I have a question, went to dr.s yesterday, did blood work, and liver profile can back, everything was normal except the SGPT which were at 43 I know the normal limit is 40, does this mean the dragon came back I finished treatment Dec. 19, the dr. said let's see the rest of the #'s and we will go from there...any advice from anyone would be appreciated.....