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9/2 Triple Treatment  Incivek,  Pegintron, Riba

Sep 03, 2011 - 17 comments
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started incivek pegintron

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tx started

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fever chills

,

riba

,

incivek



I was very afraid and nervous yesterday I took my first pegintron shot at 12:30 pm, started to feel a little groggy about 5 hours later.  Went to bed about 7, woke at midnight with a fever of 102, terrible shivers, aching all over, was so cold.  My first thought was to take ibuprofen.  My husband reminded me about how much my blood levels fell the last time.  So, I am going to try tylenol for fever and reserve ibuprofen for really bad times.  Last night was bad,  I only took two ibuprofen vs the 4 I usually take.  My hemo said that aspirin paralyzes the platelets for a week while ibuprofen does the same for a few days.
I was going to take  the pills out and put them in a pill box with a timer.  The nurse from Vertex told me to keep them in their containers as they would stay fresh that way.  Oh well, I will come up with a better way.  I tried to set a timer last night but it was on pm instead of AM, oh well :)

I just woke  (9/3) feeling a little achey, going to take my incivek and riba at 7, 11, and incivek at 3.   The training person was nice but did not know much about the mental side effects of interferon or riba rage; which is my biggest concern,   Oh well, I guess there is a difference between having it and knowing and being a trainer.  She said it must have been my trial drug that made me anxious, irritable, unable to remember words hah.  
5 hours ago I took the Incivek, riba and went back to bed with some tylenol PM.  Seems to have helped me sleep, I pray that the sides won't be too awful.
Dee

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1477908 tn?1349567710
by paen53, Sep 04, 2011
Hope you're feeling better now, Dee. I could only take Tylenol during tx because of my cirrhosis - up to 2000 mg/day. I took a Tylenol PM every shot night just out of precaution, and can't remember a bad shot night - either the TPM worked or sheer luck - or post tx denial. ;-). Other sxs, oh yeah, but great for shot night anyway. Started on Celexa about three months into tx, not so much irritable, more being on an emotional roller coaster. Seemed to balance me out. LOL, I went into tx determined to be a minimalist as far as other meds, but soon changed me tune to, "I do whatever it takes and take whatever I need" to get me thru the 72 of SOC. Hang in there! Pam

317787 tn?1473358451
by Dee1956, Sep 04, 2011
Pam thanks so much for the encouraging words.  Like you said, the last time I tx'd I was told to do whatever I had to do to get through tx.  I am very groggy and running fevers at night, wake shaking really bad.  I hope it will slowly get better.  I am not supposed to take ibuprofen either but when the pain is really bad I will.  Right now just using one 500mg tylenol and at night taking tylenol PM  I am hoping that I won't get too sick but I seem to remember that it took the riba 3 to 4 weeks to really start doing a number on me.
I really appreciate the support
Oh, did you get any red blotches on your skin?  I woke to my neck having blotches all around my neck.  My husband said it could be my cross necklace so I took it off.  Even though I have been wearing for years the meds do make the skin more sensitive.  How are you doing?  Are you SVR?
Thanks again
DEe

1477908 tn?1349567710
by paen53, Sep 04, 2011
I can't remember any red blotches except for the ones on my legs from the cryoglobulinemia that seemed to get redder early on, then began to fade late in tx when, I suppose, the cryo issue began to disappear. You're right tho, skin becomes more sensitive on the meds. I really had to avoid sun on tx, even for a while afterwards. Even sunscreen didn't help.

Yes, did reach SVR in December of 2010, though I count my 1 year post (May 2011) as the real clincher. Once I hit that point, I felt I could breathe easier, mostly because of the Stage 4 status. Seems there's always disclaimers for us, "except for Stage 4", "unless you have cirrhosis"......

Keeping my fingers crossed for an RVR for ya, Pam

1654058 tn?1407159066
by crossroadsec, Sep 04, 2011
Sry you're getting the sides. A lot of them come n go. Rarely do I have them all at once now. So take heart dear one.
I get the red blotches, but only if I'm outdoors n don't wear sunscreen. Nothing really helps tho. I stay inside as much as possible and am really looking forward to cooler weather. I'm doing the groggy fever thing too and decided it the fever may make skin itchier.
Talk to me girls. I'm stage 4 and was told I could take tylenol or ibuprofen. I chose children's dose of Motrin. It does keep fever n aches down. But my platelets are dropping. I'm so accustomed to NOT taking tylenol. Is there something I don't know?  hmmm.
I too keep my pills in original containers except I carry Riba, vitamins, and nausea meds w/ me in the little pill thing. Just a days worth.
It's a mess some days. I really feel the body settles into a rhythm. Maybe it's just that we get used to feeling lousy. lol Take care honey...
Pam, you're our hero... Truly. :D Karen

317787 tn?1473358451
by Dee1956, Sep 04, 2011
Karen, thanks for much or the nice post.  Well ibuprofen isn't good for the liver, especially i you have cirrhosis, it can lower your platelets and like my husband said I don't need that this time.  The doctor advised me to take up to 2,000 grm of Tylenol per day but no more than that.  Right now I am using 500 mg Tylenol or Tylenol pm and that seems to be working for the aches pain fever.  The blotchy skin kinda freaked me out, it is just on my neck. right now but it is really red..
During training the pharma rep said to worry about the rash unless it gets blistery, bleeding and/or painful.  The thinking is to nip it asap so it doesn't get worse.
You are right in that we get used to this new lousy way of feeling, then every once in a while (just before the shot) you will start to feel better and then it is time to take the shot.  The sx seems different this time though it has only been two days and I know it will tak 4 to 4 weeks for the Riba to reach its peak.  
Thank you for posting I am getting groggy again, gotta go  I will take groggy and out of it over vomiting, the runs charlie horse cramp any day of the week.  I am sure my family is happy that I am being quiet for a change ha ha
more tomorrow
D

789911 tn?1368636783
by his3707, Sep 04, 2011
hey Dee, sorry your not feeling well right now.  Hopefully your sx wont get too intense.  Im glad for you that you have started treating.  That part of the wait is now over.   I used some strong prescription strength cortisteroid creme for the rash.  Just keep on top of it.  Praying that you start feeling better soon!   Lydia

1735424 tn?1357433558
by Lifenet62, Sep 05, 2011
sending a message of love....we all love you and thank you for sharing your experiences....stay the course!!

317787 tn?1473358451
by Dee1956, Sep 05, 2011
Hello all thanks for your encouraging words.  It is almost comical, I was so afraid of the new tx and how it would affect me.  (KNOCK ON WOOD) it doesn't seem as bad as the first time, well at least not yet.  I do wake every night with fever aching chills, take one Tylenol and that seems to help.  I also have cyroglobulinemia which has not broken out on my skin since April.  I do get pain and have hoped that the tx will help that.  It helped me the last time.  I had the cyro's (red to purple spots which are bleeding under the skin) right before I tx'd in 2008.  I went to 3 doctors about it and no one seemed to know what it was and they said not to worry about it.  During my last tx the spots stopped and did not return until the night I relapsed, I went from a 0 vl to 4M and the spots covered my entire body, it was pretty bad. It felt like my skin was on fire.  Just this year I was tested and found that I  have cyroglobulinemia.  I pray I am strong enough to get through this tx.  I did it before and worked the entire time though not as well.  Once I relapsed the pain in my legs from the cyroglobulins was intense and I could only work 6 hours a day.
Again, thank you for your support, I would love to hear how you are doing or have done on tx and what you did to help you.  The red splotches on my neck are almost gone.  I started using hydrocortizone cream.  

419309 tn?1326503291
by eureka254, Sep 05, 2011
Hi Dee...
Hey, at least you sort of know what to expect, not being a virgin at treatment and all ;).  I hope you get through this hump quickly, and definitely, if you get virus suppression, it should help with your cryo.  It's unfortunate that lots of physicians are not familiar with it as one of the extra-hepatic manifestations of hcv -- I'll keep my fingers crossed that this treatment will get rid of both the hcv and the cryo for you!!
The meds definitely made my husband's skin more sensitive... the few pieces of jewelry (even his wedding ring) he did wear would make him break out, and he just didn't wear any through most of his treatment -- good thing that he didn't have the energy to run around ;).  He was tested for cryo but never had it... when he got those spotty breakouts and rashes, he'd take the Tylenol PM (has benadryl), and use a hydrocortisone cream which helped a lot.  It ended up being just too much a couple of months in, and he was given a prescription for Atarax, which was great for him.
And definitely, stick with the Tylenol instead of the ibuprofen... all the NSAIDs: aspirin, Motrin, Advil, etc... have the potential to complicate the situation for cirrhotics on treatment... definitely a no-no if your platelets are below normal... glad to hear that hubby's helping with things! You take care, feel better soon.  Sending prayers and hugs your way. ~eureka

317787 tn?1473358451
by Dee1956, Sep 06, 2011
Hi Paen, thank you for sharing your experience with cryoglobulinemia.
I have not had a flare/break out since April, yesterday I noticed that the red spots are coming back and it scared me.  The last time I was on tx I did not have any red spots.  When I relapsed they came back with a vengeance, red, purple, huge not tiny, my legs swelled and burned, the skin was so tight aI thought it would rip and it felt like my ankles were broken..  Anytime I start to see the spots I start to panic.  I am glad to know it is possible to see them when first starting tx.  

317787 tn?1473358451
by Dee1956, Sep 06, 2011
Eureka, thank so much for your encouragement it means more than words can say.  I did not even think about the ibuprofen lowering my platelets the last time.  I might not have thought of it this time but my husband reminded me that the last time my platelets went to 50 and I was in danger of being pulled from tx..  This time I started out with platelets around 130, last time they were under 100 so I do feel I am starting out in a better place than the last time.
I realize that I need to do whatever is necessary to stay on this tx.  I know they say no ibuprofen however there are times the pain is so bad that there isn't anything else.  BUT, this time I will do without since I know it could make or break me.
Thank you again for being there for me.  God Bless you

God Bless you all.  I do not know what AI would do without all of the support I have received here since 2007.  My family does not understand.  When I am too tired to go to dinner with them my sister gets mad and tells my husband "this is family time"  It is as if they have no idea that this could kill me and don't care enough to even eo any research.  If it were not for my husband I would be completely alone right now.  My husband has been my rock through all of this

Thank you gain
Dee

317787 tn?1473358451
by Dee1956, Sep 14, 2011
Hello, I was wondering if this triple (incivek, Riba, Peg) will act like the old SOC.  Back then I was told it would take me 4 to to 6 weeks or so to get used to feeling sick.  I know it is a little early has anyone experienced any improvement of symptoms since stopping the Incivek?  I guess I am grasping at straws right now.  Praying that  ill get better and won't get worse.  I am so weak, can't do much but eat, take pills shots and sleep.  I would really appreciate hearing from anyone a little further down the road than I am
Oh, I called the doc about nausea and back pain, he put me on an anti - nausea and told me to take ibuprofen or aleve as the pain is a side effect ( I am guess the Incivek) as I don't remember back pain before.  Sorry if this is disjointed, the meds are taking over pretty quickly.  I can see a day when I won't be able to type anything coherent :)
God Bless you all
Dee

1253246 tn?1332073310
by EyesofBlue55, Sep 15, 2011
What did you dr give you for nausea????Hope you feel better soon !!! cindy

317787 tn?1473358451
by Dee1956, Sep 16, 2011
Hi it is something called Promethazine (sp?)
Also at the store they have a liquid called Emetrol which has helped in the past but did not help this time.
Thank you
D

Avatar universal
by HopeBeyondHope, Sep 21, 2011
I am on week 6 and have had the rash come and go on my neck, arms and now on my breasts,. I take warm showers but while I am still wet I rub on baby oil and then some baby lotion or coco butter lotion, it works good. I have had to use some over the counter cortizone cream and I am good with that so far. I have experienced some waves of nausea but they pass quickly however I have had the flu like symptoms which only last for a day. It is good to have a support system that understands even if it one person, that can take alot of stress out of all this, I am a high energy person who has a lot of irons in the fire but lately I have just been coming home and falling into bed, I had my first labs drawn on Monday and am very hopeful, I have not had any of the mental health stuff (depression, mood swings, thoughts of harming myself) but it is hard to wait for the results. Keep the faith--I sincerely believe that this is the treatment chronic suffers needed

317787 tn?1473358451
by Dee1956, Sep 22, 2011
Hi , thanks so much for your post.  I feel awful but then I hear of other sx's that I don't have (yet) and feel that I am lucky.  All I want to do is sleep so I don't feel so bad.  Friday will be my 4th shot.  My doctor wants to see me next week, I guess just to see me but it could be a scheduled appt and I would not know.  After I started tx I found I was the first patient to start the Incivek, yeah, nothing like being the first one.  I would have waited if I had the luxury.  I don't like to be the first at anything as I feel like they test out their theories with the first's :)
The heartburn is bad I think that started nausea.  I am sorry to hear about the rash.  Mine has calmed down for now.  I just try to take it one day at a time and tell myself that I can make it to 12 weeks, then I hope to feel a little better.  I know I am rambling, woke at 2AM could not go back to sleep.  Feeling sick, will probably fall asleep around 7.  I am normally very busy, now care barely take care of myself, much less anyone else. :)
Hate having my days and nights up, it will all be worth it when I can say I am UND then SVR
Thanks so much for sharing with me.
More soon
D

Avatar universal
by Tina197804, Mar 09, 2012
Hello everyone,
I am on my shot 8 Pegintron and us well incivek.ribabirin I thought my medication does not work because I did not get any side effects bit my virus is undetected. I wish everyone good luck on this treatment.

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