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630100 tn?1222456507

Is treatment like antibiotics - I have missed many doses of telaprevir & Ribavirin

HI,

I hate to ask a question about every little worry, but I read that heppers are worried about becoming resistant, or mutations. I had a rough first 3 days and managed somehow to only take one dose (rather than three) of Telaprevir per day on average.
I think this has a lot to do with some kind of 'brain fog' because I swore that I had taken my telaprevir pills 3Xs a day, but when I looked at the pill box, I had only popped out 2 pills x3 over 3 days.
This is an average of once a day!
If telaprevir works like antibiotics, then you take them 3Xs a day to keep up the level in your blood and to not do that, well, thats what leads to resistance and mutations.

I know 3 days isn't forever, but I  read that someone had a viral load of 8 million and got it down to 30 in the first week!?!
If this is the case, it would seem that messing up my first three days could be important.

I'm not irresponsible, I was really in a fog after my Interferon injection, and after staying awake for 48hrs, I passed out for 24hrs, not taking ANY meds that day.

I am going to do my best, best, best to get everything smooth and on track, but I just want to know if anyone thinks that taking the telaprevir or the Ribavirin only once or twice a day for three days could effect the chance that it attacks the virus straight from the get-go?

Please don't think me indifferent by not taking the meds, I really believed I had taken them, and even wrote down that I had, but when I looked, the pills were still there.
I am feeling more coherent now (3days after Interferon) so I hope this doesn't happen again next shot I take.

btw, I know you should have some support, like family or something, but I live in Paris and I only have one person who can even help me, and they will not come to my house, just call by phone (whihc I *hallucinated was someone singing when it rang)

*I know hallucinating sounds severe, but it was a half-asleep while in this confused state, not a 'waking hallucination'

Thanks for any input, I hope I'm making sense when I write :)
39 Responses
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Avatar universal
Hey if you think thats bad...... I missed 3 months of ribavirin, because of forgetting. I never forgot the interferon, i always poked myself on fridays, sometimes, i'd be away from home and have to take it saturday or even thursday. I'm horrible with pills. always have been. no alarm clocks worked for me, cuz i would just shut it off when it'd go off. I'm SVR and have been for a year. So don't worry about explaining yourself to everyone. I am a nurse and every liver and every body is different. Everyone has a different viral load, and some are sicker than others. Some lead a "fast" kind of life and therefore cannot seem to maintain svr. I got Hep C from grabbing my biker dads razor when i had to shave my legs before goin out on a date. NICE DAD. LEAVE YOUR RAZOR OUT SO YOUR TEEN DAUGHER CAN USE IT AND GET A DISEASE AT 18 YEARS OLD. Can you tell i'm bitter. 9 years later i find out i have hep c and asked if i shared razors or toothbrushes. yup, only did with my dad that one time!!!! I had an 8million viral load at 27, and now at 29 i'm a nurse, and i'm free so far. Dont worry about it. If your SVR your good to go for now. It was hard for me to remember all those meds. I worked full time, went to school full time, was a wife and mother. I was gone 89 hours a week, going thru the horrible side affects while working, going to school, being a mom, being sick, losing my hair, being a wife, studying, sleeping, and hating everyone. Just take your meds as soon as you remember, never double dose, and ur fine.
Helpful - 0
Avatar universal
dear melonliver ,please ,please, do not be a fool, i did three and of half years
of standard interferon+riba, peg-intron+riba, double doses of peg-intron for 6
months, all kinds of supplaments (dr. approved) like amandadine, i injected
a inch long needle almost to the bone full of vitamin c for awhile.. the lowest
my viral load at the end was 160,000, they did not have telepravir then....telepravirs
first clinical trial cleared the virus in two to three days, don't worry everybody hallusinate's
(see's thing's that are not there) DO EXACTLY WHAT THEY SAY UNLESS YOU WANT  TO WAIT FOR A LIVER TRANSPLANT, DON'T WHINE YOU HAVE A BETTER
CHANCE THAN ANYONE TO CLEAR IT, if you can't sleep get your doc to give you some ambian you will get a good buzz when you sleep, but ambian IS ADDICTIVE             hang in there you don't have so bad.....GONZORENO
Helpful - 0
524608 tn?1244418161
Really? you must be an Ohio State fan.
Helpful - 0
476246 tn?1418870914
Are you alright?

Marcia
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476246 tn?1418870914
So am I. I hope she will chime in soon.

marcia
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Avatar universal
The 24th of Sept? if so, the missed doses are not too much to be concerned about in that the interferon can be caulked up as a pre dose.

Thanks! was not sure how soon Melon started treatment. I am kind of cringing here given Melon’s reaction to her first INF shot after getting a glimpse here of her last shot. I know now this is not a normal reaction from my own experience and just a tad concerned here for her.

jasper
Helpful - 0
476246 tn?1418870914
FYI, Melon did her 1st shot on Wednesday the 24th. So she just started treatment a few days ago.

marcia
Helpful - 0
Avatar universal
Agree 100% if your in a trial, and am sure they will follow up very closely given the circumstances. In my case, I was not in a trial and treating with a GI doctor who was more interested in his female patient’s experiences than what I was trying to relate, my bad but live and learn.

jasper  
Helpful - 0
Avatar universal
"How do you explain that to the doc and even more so trying to get him to understand? "

I'm sure there's a way, jasper.  On a trial it's important to have adverse effects recorded, in my opinion.  Particularly if it identifies a trend. Certainly the rash issue with Telaprevir was identified that way.  I know my trial co-ordinator is meticulous about those things and it's definitely one of the considerations when evaluating whether one goes into a trial.  I personally feel there's a certain amount of responsibility on the part of trial participants when you sign on that line and it's knowing where to draw that line.  
Helpful - 0
Avatar universal
How do you feel now with taking your interferon? Don’t much care about what you missed but what is happening now. I went through a similar experience when first starting treatment with two shots in the same week and not much recollection of except it was Tuesday morning before being some what coherent again. It is very hard to explain what happened during that time; like being displaced in time between two worlds, although I didn’t pass out it sure felt like it. How do you explain that to the doc and even more so trying to get him to understand? That was the first and only time it happened during my treatment, good luck going forward and please consider taking Marcia up on her offer to keep contact with you and keep posting here it is a life line.

jasper
Helpful - 0
Avatar universal
Melon:
I was very much out of it and it could be a possible strong reaction coupled with some other factors that I don't want to drag out

We don't know all the facts  -  Melon is going to HAVE to talk with the study people if there are other things going on.
Helpful - 0
548668 tn?1394187222
Having experienced major sleep deprivation in my first week of txing, I can appreciate how 'out of it'; your were after your first shot.   I could hardly function and hardly think, I was fragile, exhausted and very stressed.

I've had slight brain fog since and feel a little 'once removed' occasionally, but nothing compared with how I was without sleep.   I was very pleased my partner and son were around or I wouldn't have known what I was doing.   Once I had some sleep meds everything improved to a level I could cope with.

I hope you can speak with your nurse who will be able to tell you statistically where you lie;  try not to stress, you CAN do this and CARRY on until you get advice from your medical team.   God bless..

JmJm/Marcia  -   You are speaking in 'third person' lol - did you notice??   I think 48 hours without sleep is more sleep deprivation than 'shot reaction'?....   I don't know whether mine was from the riba or because my thyroid jumped up (within limits but it did jump)... but the lack of quality sleep was an absolute killer for cognitive function for me....
Helpful - 0
Avatar universal
You absolutely should be reporting your reaction to your interferon to your trial team.  If you are in a fog that severe for a full 48 hours after the injection and then passing out for 24 hours and missing your dosage they need to be aware of it BEFORE you take your next dose so that they can work WITH you to take proactive measures or perhaps assess your suitability for these drugs.  Side effects and reactions to the drugs are monitored stringently on a trial and recorded and become part of the data.  Adherence to the dosages is also very important and your trial team needs to be aware of ALL of this.  It's not enough to hope that the next dose goes better.  The early stages of the trial are particularly critical both from a data, adherence and outcome perspective and I would inform your team and work with them on this.  They may have strategies that will help also.  My two cents worth.

Trish
Helpful - 0
476246 tn?1418870914
Well, let's hope she will not have the same reaction to the second shot. If not she could maybe ask the hospital to send a nurse or to be admitted for a few days after each shot, until they ease up. It is impossible to know how one will react, especially after the first shot.

Marcia
Helpful - 0
Avatar universal
I think the screaming meanie would have probably been the only thing which could have helped.
-------------------
Yes, it would have gotten her up but given all she said, only a person physically there would have made a difference. Phone support only works if the person at the other end both hears the phone, picks it up and processes the information properly. Missing the trial drug AND ribavirin for several days early in treatment is not a very good sign. She really needs someone physically around and if that is not possible then the real possiblity exists that treatment will fail.
Helpful - 0
476246 tn?1418870914
If you want me to call you, especially on days of your shot and afterward, I'll be glad to do so. I have skype and call all over the world with it. It costs nothing to call to France, US, and a whole bunch of other countries with skype. Cheaper than a local call for me here. So don't worry about that. And it won't be any trouble for me either, as I am at home all the time.  You can give me your meds schedule and I check up on you every 8 hours or more on those days you need it. We can pm each other about the details.

Marcia
Helpful - 0
476246 tn?1418870914
Jim,

The way I understood is that she missed her doses because she had such a strong reaction to the first shot, couldn't sleep for 48 hours, then crashed with her alarm next to her pillow and didn't wake up for 24 hours. Even when the phone rang, she thought someone was humming or singing. She was in a complete fog for 2 days or so. She also logged taking her meds, but somehow didn't take them.

I think the screaming meanie would have probably been the only thing which could have helped.

She is in a foreign country with no relatives at all and has only 1 person who is willing to check on her and that is ONLY by phone. And probably if it's convenient.That is practically like having no one at all.

It looks like she is alright now, but I am actually worried for what will happen after the next shot and I will ask her to give me her number if she wants to. We are in the same time zone and it will be nothing for me to call and be insisting... the friend calling in might not realize the importance of it.




Helpful - 0
Avatar universal
1. Tell your study coordinator
2. Come up with a different system as your current system is not working. Can you get help from a friend or family member? What about a log book? This is used by truck drivers and will wake the dead: http://www.the-perfect-present.com/Pages_SCRM/Screamin_Meanie.html
Helpful - 0
630100 tn?1222456507
To basically address all the responses:

Thanks for your input, and I get the message loud and clear that it is very important and serious when doses are missed.

Thats all I needed to know.

To this comment:
"If it is different in France, and you believe it will be alright, why are you asking for opinions on the mistake? "

I never said I 'know' it will be alright, I simply am saying that giving me the feedback that it's something to be concerned about is enough. I don't need it to be beaten over my head and told I should give up hope because there's no chance it could work for me now (and that was said, read the earlier posts)

So far from "knowing" it will be alright, I just am saying that with the fact that I can do nothing but my best to make sure I don't miss anymore doses, I would like to have positive attitude and "try to believe it will work out"
-- This is different than believing it will be fine as in I didn't want opinions - just trying to be a positive thinker since I can't turn back the clock.

The thing about France having a different idea was just an observation in response to someone saying they were told that a single missed dose will cause a mutation.
I simply said that the doctors and nurses here gave me a different impression.

I think I joined this group at an emotional time.

I appreciate the feedback, I asked because I wanted to know, I accept what was said, and now I am trying to make the best of the days ahead.

Thats all :)
Helpful - 0
Avatar universal
Hey gator girl get rid of the gator ****. It's very offensive!!! I don't care what pagan god  you worship.
Helpful - 0
212705 tn?1221620650
oops, that's Yvonne (lol)
Helpful - 0
212705 tn?1221620650
Hey...you made a mistake..now it's time to move on and catch up with your nurse. I hope all goes well.
I know little about the trials but I do know how these meds can mess with your head...it's real important to talk to the nurse about that too.
I also know how hard it is to do this tx alone..... though at the same time...I can't imagine having to deal with many people at this point.
God has gotten me through....alot...
it seems like I have been doing it forever, actually 19 mos.
Like Isobella, I feel for you...pm anytime.... I would like to help.
Yonne
Helpful - 0
412873 tn?1329174455
I know this has to be tough on you...being in another country without a strong support net.  

If ya get overwhelmed and need to talk...feel free to pm me anytime. I know there is a time difference between us, but I am usually lurking around somewhere.  

Do, please keep me updated.  :-)

Isobella
Helpful - 0
Avatar universal
My bad guys, Melon said she had a 48 HOUR period, not a 48 week period and she "cleared up"  not cleared the virus.  Please disregard my post -  Too much emotion flying around this forum lately -  I get confused.
Helpful - 0
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