help start tx

[denigreg]

Not doin good. took shot 11am and pills a little after 12pm thurs. took tylenol little bit later. slept on and off all afternoon. temp up to 100. went to son's family night at school. almost killed me. came home freaked out on my husband long story. called pegasys nurse told me to take xanax and not to take pills that nite. calmed down. slept on and of all nite. took pills at 8am fri fever again by afternoon up to 101. severe back pain. called dr because couldn't get fever down w/tylenol. he told me not to take pills. and they don't work that way? asked if something else was going on. cause i also had a cough. he told me to call my reg doc mon/tues if not better and to call him on tues. WTF? Help!! I feel so confused. hard to breathe my lower back and legs hurt and also my lower belly. now what? today is sat and i only did shot thurs and 1 set of pills, and am fri pills now still feeling really sick can't call doc till tues or call and get a dif doc on call. did this ever happen to any0ne else?  

[charm27]

Hang on Im checking...Havent been here for awhile and my icon for notes is gone..but have received messages...
hmmmm....i will return !

[Bill1954]

Hi Charm,

I tried to send three messages, and somehow I'm blocked; I'm trying to respond to the nice message you sent. Maybe you could check in your profile settings to see if you blocked me? I just wanted to catch up on old times...

Bill

[flcyclist]

Yes, unfortunately geno 1, but good results at 4 week - UND.  I have requested the more sensitive, Heptimax test in July, so hope for the same for those results.  I am cautiously optimistic.  Although 48 weeks sounds like forever, I'm almost at 8 weeks already, so time does click by.  

Family support is important, but do understand they can only do so much to make you feel better.  My doc explained to my wife today, that I deserve a mulligan every so often, since some days, things get to me much more than they should.  

Best wishes.

[charm27]

Bill-

Hi My notes are not there. However you can send me a message.. I have been getting messages.
I sent you one...

Charm

[denigreg]

Thank you! Hope you are doing well. Yes I am trying very hard to take it one day/week at a time. It is very frustating sometimes ie: family has no clue how I feel. They are trying though.
I see you have 42 wks are you geno 1?

[Bill1954]

It’s good that all this isn’t further complicated by reduced red blood cells (anemia) or neutropenia; you at least have that going for you right now. Good luck going forward and also good work for getting back on track. Keep us posted as to your progress--

--Bill

[FlGuy]

Based on what you wrote in separate posts in this thread, it looks like you did first shot on a Thursday the second on a Wednesday and you aee about to do #3 tonight (Wednesday).  Consistency, especially early in treatment is very imporatnt.  There's probably no big deal in doing the Peg only six days apart but more than a week apart could be a a large issue - if you get so tempted.  But, skipping riba is not good at all, even though it may make you feel better.  

[Bill1954]

Charm, you're a difficult person to contact! Hmm... I'm not sure how to reach you...

Bill

[flcyclist]

Good to hear you are back on track and most importantly, continuing with trt.  Each week will bring new challenges, so try to take things in stride.  Hope things settle down for you some, sounds like they are.  I'm only in week 7 of 42, but during the firstfew weeks, it takes some time to accept the reality of what we're going through.  Pretty overwhelming, but you can do it.

Best of luck.  We are rooting for you... :)

[denigreg]

Thank you ;-)

[charm27]

First of all I wanted to say good luck in treating. I had no reaction at all to treatment until around shot 5 or 6...Was extremely hard for me and I had to keep telling myself one day ay a time.Just take  minute at a time. I treated for 55 weeks and it was a bad ride but am so glad I did. I would do it again if I had to. Drink as much fluids as you can and just tell yourself it will be over. Very difficult almost impossible situation for most and yet some people have no sides at all. Hang in there and keep the faith if you can. The forum is a great place for support , there are many of us who have en thru what you are going thru. SOme people here have treated a multiple of times. Keep your chin up, its worth the trip if you get well...Your liver deserves it! and so do you. You can do it.

[denigreg]

I'm back not sure if I should start a new post or continue. Oh well my brain is on overload. Can't sleep but I'm really tired. Get breathless just by walking and talking. missed riba a few days did 2nd shot last weds evening. Doc just lowered riba from 3 pills in am to 2 in am. So it's 2 200 in the morning and 3 at night. Everything was ok at dr app on Monday.  just got cbc today doc said it's good and to do  shot tonight. I'm much better than the first week. Just have to stay out of heat. Try to ignore my messy home and not worry so much about my family. I think I'll try yoga? I'm loosing weight which is a good thing. Can't stand diiner only like dessert.
Thanks again for all the great advise. Love and health to all! xoxo
Deni

[can-do-man]

Well this is definitely not a good way to begin tx. Being your a geno 3 the first 4 weeks are really inportant. Not being und at week 4 could mean having to extend tx from 24 weeks, hope things work out for you soon. Have to say to me it sounds like what others have said, a first shot reaction........... Good luck with your doctors appointment.

[Proactive]

First shot is the hardest- it definitely was for me..I think I had to get a chest x-ray prior to treatment, as well as an eye exam..
Hoping you're feeling better today

[Trish77]

How do they or you know it was the riba and not a continuation of the effects of the interferon?  

Good that you are under doctor's care and hopefully this lung issue you mention is not a problem.  

[pedro007]

  Hi.... From time to time, while I was on Tx, I had horrible side affects. Shacked and shivered, big time body ache, headache, nausea, mental capacities reduced, anger. You are not unique or alone in your suffering.
  
I took my meds every day, after eating something and my shot every week. I would sing Lenord Cohen's song "Closing time" when popping pills, except change the words to "Poison Time"
  
I put my faith in the lab work, Nurse and Doctor to monitor me to make sure the adverse affects of Tx were within safe ranges.  It wasn't easy for me. Our main goal is to be rid of HCV. and sometimes it's hard to cope with it all.  I'm 11 weeks post Tx. Und at last PCR, and feeling pretty good.
      
    Hang in there and be good to yourself. .

                         Take Care, Pedro

[Aaron57]

Sorry to hear your Tx reaction is causing discomfort ... I would guess 80% of folks treating have some kind of discomfort ....

1 point of interest.

After reading your post ... I am curious .. you said

"I drank my 140  ounces of water... insanity ... while draining it i started spinning kinda like when you get drunk for the first time" ...

If I am not mistaken ... depending on your body weight ... that should be your Daily Intake of water .. divided into however many glasses and drunk over the period of time you are awake ...

Not a once a day drowning ! !

Are you really drinking 140 oz at one time ?

[denigreg]

Hello all. spoke to doc on call he told to me to go to hospital. just got back was there 5 hours. the shot didn't make me that sick. it was the riba. they did blood work, cbc was good. took blood and tested for infections. something showed up with my lungs. took xray then cat scan of my lungs. was told not to take riba till i see doc. I got real sick and had fever after taking riba. I also had planned on taking shot at night but took first one at dr's with a nurse. goin to sleep now. thanks again. still c onfused.

[meakea]

I would suggest that you consider changing the timing of your shots (with your doc's permission, of course).  I think most people take their shots in the evening and then are able to sleep through most of the bad stuff.  (Or at least try to sleep).  I took my shots on Friday night and I kept my weekends as free as I could so that I did nothing but take care of myself and get feeling better so I could go back to work on Monday.  

What "pills" were you told not to take?  Riba?

[spectda]

My first shot my fever went to 104 and I was very sick for about two days, my second shot I had a fever of about 102. After that I didn't have fever or bad flu like symptoms. I kind of expected it might be bad and just slept a lot and took tylenol.

I had bad back pain and leg pain for several weeks that woke me several times and used a heating pad and used pillows under my knees and back which helped a little.

Treatment ***** for some of us. I expected it to be a bad year, and sometimes it was, sometimes it wasn't. I never stopped taking any pills or interferon although they were reduced at times because of my blood levels.

I hope your treatment get's better. I expect the interferon reaction will not be as severe after a while. If you are fearful or anxious it may also be affecting your breathing also and make the symptoms even worse. Maybe they can prescribe an anti anxiety med if you feel you could use it. I took klonopin ocassionaly when I was struggling.

Good luck to you,
Dave

I am

[ribman]

im gonna repost my earlier post i had very similar reaction.while it was bad ive had the flu that was worse

here is my honest assesment of how it hit me,spent three hours talking to daughter and son- in -law on back porch.i felt slightly tired untill they left then immediately started having chills very similar to running a fever.12 midnight .piled on some blankets and finally dozed off after about an hour.woke up at 4 am to ****(i drank my 140  ounces of water... insanity...)while draining it i started spinning kinda like when you get drunk for the first time.i dove for the couch and left a nice trail of urine.awoke at 8am took 3 riba pills and woke up and felt better for about three hours.decided to go pick up a load of 60 boxes for my wifes business.was fine till i spent 30 minutes in the sun.drove home with the flu crawled in bed for three hours.got up at 7 pm and took two more riba pills now kinda feel better.seems the riba pills actually bring me out of the funk.oh well hope thats not too much drama.

[Trish77]

When you say your nurse told you "not to take pills that nite" and the doctor told you "not to take pills" - what pills are you referring to? The tylenol, the ribavirin or something else?

What you seem to be experiencing is the flu-like symptoms some get from their first shot.  Some people have a really rough weekend and worry that it's going to be like this the whole time.  It usually isn't and if your first shot is really bad, it gets better from there and it doesn't last all week til the next shot.  So try to treat this like you have the flu, drink lots of water, take your tylenol for your headaches and just rest up and ride it out.   Lots have gone through this.  You're not the first and you won't be the last.   Just hang in there and ride it out.

[Anne1717]

OMG and how could I forget the worst of it - HEADACHE - blinding, unrelenting HEADACHE.

Like June - the Riba brought a different set of problems after about 2 weeks of being on it.  But all in all, I got used to it and it no longer seems like such a blow.

[Junebug812]

My sx from the interferon were very much similar to Anne's. My first shot was by far the most difficult. It became easier as time went along. Once the Riba kicked in, that was another set of problems. It is concerning that you're missing Riba doses now. I'm not a doctor, so I don't know how skipping Riba will effect the overall outcome, but I'd have a good talk with my doc about that one.

Try not to panic and get too anxious. You may be like a lot of people here who have a hard time the first shot but then the interferon sx lessen with each shot. I too took my shot on Friday nights before bedtime so I could sleep through most of it.

Don't give up and keep posting here and getting help. I wish you the best.

June