Aa
Alt, Ast go over 3x from when tx begins ,
I will be told to stop tx. This is what nurse told me today-- as they are still rising quickly. They want me to come in 2x a month, instead of monthly to check my liver enzymes. I have never heard of this before and it will be devastating for me if I am told to stop because of this.
Is this normal for trials to do this?
To: portann
I did stop all OTC meds for around a month and it did not help--there goes our theory.
Is this normal for trials to do this?
To: portann
I did stop all OTC meds for around a month and it did not help--there goes our theory.
I weigh 130something and am on 800mgs riba which according to my study is the correct weight based dose.
just saw this thread for first time. It was a cliffhanger read. So glad to see a good resolve. Carry on to svrville.
To my birding guru:
You know how much I'm smiling to hear your news. Congratulations. Maybe it was your beautiful new garden that turned that ALT around. (I just saw it and will comment.)
I'm not going to say whoopee-do about the 1000 because it will likely be tougher on you. That's what I'd do, though. I was on 17.5 mg of riba per kilo (125 pounds) and I lived to tell about it. And that's small compared to some other people here, like Trin, who weighs between 100 - 110 and is also on 1000.
Great news for you and all of us.
TTYL
You know how much I'm smiling to hear your news. Congratulations. Maybe it was your beautiful new garden that turned that ALT around. (I just saw it and will comment.)
I'm not going to say whoopee-do about the 1000 because it will likely be tougher on you. That's what I'd do, though. I was on 17.5 mg of riba per kilo (125 pounds) and I lived to tell about it. And that's small compared to some other people here, like Trin, who weighs between 100 - 110 and is also on 1000.
Great news for you and all of us.
TTYL
Good new is right Tippy!! Glad for you!
your 132 pounds converts to 60 kg. So 1000 mg of riba divided by 60 kg is: 16.7 for your riba ratio.
Keep up the great progress!!
your 132 pounds converts to 60 kg. So 1000 mg of riba divided by 60 kg is: 16.7 for your riba ratio.
Keep up the great progress!!
Good news for once. Alt 49 and Ast 51--finally came down and I can stop worrying about that. Hgb up to 10.6 and they increased my pills. I think it may be too much though, 132 lbs and 1000mg Riba. I don't know how to calculate weight based.
What a rollercoast ride it was just reading this, I can only imagine what it was like for you Tippy but I'm sure the UND news did help. Great news!!!!!
Yipee! I have been thinking about you ALL day. I am glad you got to talk directly with your doc and got all your questions answered. All the way to UND!!!!! And you will hit SVR.
Hugs
Cath
Hugs
Cath
I'm so glad for you that this is all over... what a scare you had. Silly nurse!!!
What super news for me to come home to. Wow, like day and night.
I was yakking away about your situation to my husband last night as he was trying to go to sleep (maybe was asleep). It seemed so drastic what the nurse said but I remembered how suddenly Trish got pulled, right after she started neupogen.
Gee, what a miscommunication. And costly to your equilibrium.
Relieved the doc knew his stuff. The upside is the nurse's blunder may have prompted him to patch things up by telling you about your UND. So how does that feel? You could change your name from Tippyclubb to TippyclUND.
Isn't this great news? I was feeling so bad. My husband says to try the string.
I was yakking away about your situation to my husband last night as he was trying to go to sleep (maybe was asleep). It seemed so drastic what the nurse said but I remembered how suddenly Trish got pulled, right after she started neupogen.
Gee, what a miscommunication. And costly to your equilibrium.
Relieved the doc knew his stuff. The upside is the nurse's blunder may have prompted him to patch things up by telling you about your UND. So how does that feel? You could change your name from Tippyclubb to TippyclUND.
Isn't this great news? I was feeling so bad. My husband says to try the string.
P.S.
I forgot to add he also told me I was UND. Very interesting, seeing as I am not suppose to know that until the 25th week. I figure he did this so I would not stop the trail and to ease my mind about liver damage.
I forgot to add he also told me I was UND. Very interesting, seeing as I am not suppose to know that until the 25th week. I figure he did this so I would not stop the trail and to ease my mind about liver damage.
Whew! I’m happy for you; it sounds like it was more of a communication problem with the nurse then huh? What a relief; and it sounds like there’s very little concern regarding autoimmune issues. It sounds like you can relax now, and enjoy the rest of your treatment. Not that that’s possible, but you know what I mean :o).
Take care,
Bill
Take care,
Bill
Spoke with study doctor today and they did check for autoimmune diseases and results were negative right before tx started. He also stated if I started out negative its highly unlikely I would go positive during tx. These things don't just appear from the medicines unless you had underlying issues to begin with. Recently they have started treating people who test positive for autoimmune disease but they do monitor them more closely.
He did give some explanations for the rising enzymes, its fairly common for these to rise with Telaprevir. Also the fat in my liver could be causing these numbers to rise while on tx. He is not worried about this and would not be concerned until they reach several hundred or more, as he has seen this happen before. Nor does he think my liver is being damaged because of the meds. Although, how would he really know that with out a biopsy?
I asked about the trial and how high they would let them go and he has to get back with me on the protocol, but it is unusual for a trial to stop tx due to rising enzymes. Now this infuriates me the nurse giving me incorrect information. I am done with her, and any upcoming issues will be dealt with through my doctor only.
Such a relief not worrying about autoimmune disease. I did ask about doing another ANA test and he said they would, at my cost , but it was unnecessary.
Thanks to all for your post as it helped when writing down my list of questions. Very stressful 24 hours but its calm now. Well for the moment anyway. Lol!
He did give some explanations for the rising enzymes, its fairly common for these to rise with Telaprevir. Also the fat in my liver could be causing these numbers to rise while on tx. He is not worried about this and would not be concerned until they reach several hundred or more, as he has seen this happen before. Nor does he think my liver is being damaged because of the meds. Although, how would he really know that with out a biopsy?
I asked about the trial and how high they would let them go and he has to get back with me on the protocol, but it is unusual for a trial to stop tx due to rising enzymes. Now this infuriates me the nurse giving me incorrect information. I am done with her, and any upcoming issues will be dealt with through my doctor only.
Such a relief not worrying about autoimmune disease. I did ask about doing another ANA test and he said they would, at my cost , but it was unnecessary.
Thanks to all for your post as it helped when writing down my list of questions. Very stressful 24 hours but its calm now. Well for the moment anyway. Lol!
Settle down. I have heard many times that liver enzymes can jump around for some people, just like VL's jump around for some others. When everyone else in the study was going to 4 week visits I was still having bloodwork every week because I was crashing so bad. They just want you to be safe and a success because they anticipate good data from you. I always thought they did all the extra bloodwork on me so I wouldn't melt down and them have to report it as a trial drug result. They want you to make it.
Did I ever tell you my story about Aleve? It and other NSAID's can do great damage to people with liver disease. I lived with hep c for 37 yrs., no problem, then killed my liver by following the dosing for my back recommended by my back doctor. During that time I was just diagnosed and getting tons of regular bloodwork. I stopped the Aleve and my enzymes continued to rise dramatically for 3 whole weeks before my liver finally finished processing it. Then, (after 3 weeks!) they dropped down to 59 and 79 (from the 300's). You may not have let enough time go by to drop them back down. There is a way to "challenge" the liver by resupplying the suspected damager for a brief time and seeing if enzymes jump up. I never had any intent to do that, got too much to lose.
Spoke too soon about my blood stabilizing. Platelets at 36,000, look like a ghost. We are not going to worry about these setbacks. We'll get through. I love your attitude about having enough meds to get to the end of 28 wks. I do too. If we get bounced we will go back to our regular doctor to monitor the ending. I know we are clear; don't need statistics to tell me that.
Did I ever tell you my story about Aleve? It and other NSAID's can do great damage to people with liver disease. I lived with hep c for 37 yrs., no problem, then killed my liver by following the dosing for my back recommended by my back doctor. During that time I was just diagnosed and getting tons of regular bloodwork. I stopped the Aleve and my enzymes continued to rise dramatically for 3 whole weeks before my liver finally finished processing it. Then, (after 3 weeks!) they dropped down to 59 and 79 (from the 300's). You may not have let enough time go by to drop them back down. There is a way to "challenge" the liver by resupplying the suspected damager for a brief time and seeing if enzymes jump up. I never had any intent to do that, got too much to lose.
Spoke too soon about my blood stabilizing. Platelets at 36,000, look like a ghost. We are not going to worry about these setbacks. We'll get through. I love your attitude about having enough meds to get to the end of 28 wks. I do too. If we get bounced we will go back to our regular doctor to monitor the ending. I know we are clear; don't need statistics to tell me that.
I am in the Vertex trial and I did receive 12 weeks of Telaprevir. I am waiting for my study doctor to call me back and will post more after talking with him.
Tippy
So you are at a bit more than 4 months? Maybe just maybe you will be one of the lucky ones and that will have been enough time (since you were RVR) and this is just a good thing happening so you can stop early :)
What trial are you on (sorry I'm not one who can ever remember everybody's details like some people can!).
I've read of peoples enzymes going up from Pegasys before but if they are really that high it seems to me they are damaging your liver more than the virus was. I hope to God that you had enough and just stay UND into SVR.
So you are at a bit more than 4 months? Maybe just maybe you will be one of the lucky ones and that will have been enough time (since you were RVR) and this is just a good thing happening so you can stop early :)
What trial are you on (sorry I'm not one who can ever remember everybody's details like some people can!).
I've read of peoples enzymes going up from Pegasys before but if they are really that high it seems to me they are damaging your liver more than the virus was. I hope to God that you had enough and just stay UND into SVR.
That’s true; we never want to develop FBLP while standing on a two-story roof; that’s why the MSP is offered as an option. Stay away from high places and sharp objects; call your trial nurse, and let us know what she says.
Take care, and stay in touch—
Bill
Take care, and stay in touch—
Bill
No no no, no running into doors, lol! Then you'll have to make an ER visit!
I was not on the forum yesterday so just found this post. I'm so sorry you're having this pop up now. You have gotten some good advice here, so I'll give you my little bit:
Take a deep breath. Now take another. : )
I know how frightening it can be to be presented with such news. Just hang in there, dear Tippy, and remember the posts of others who treated with the study drug and only completed 6 or 7 weeks total and still cleared. At least you know you're getting the TVR, so you should be good, even if you must stop early. We don't have any data to prove that yet (that's why we're in the studies) but we've read those anecdotal reports, and that has to be some comfort.
I know you'll keep us posted on the developments in this situation, so I'll be over here cheering for you, along with the others!
I was not on the forum yesterday so just found this post. I'm so sorry you're having this pop up now. You have gotten some good advice here, so I'll give you my little bit:
Take a deep breath. Now take another. : )
I know how frightening it can be to be presented with such news. Just hang in there, dear Tippy, and remember the posts of others who treated with the study drug and only completed 6 or 7 weeks total and still cleared. At least you know you're getting the TVR, so you should be good, even if you must stop early. We don't have any data to prove that yet (that's why we're in the studies) but we've read those anecdotal reports, and that has to be some comfort.
I know you'll keep us posted on the developments in this situation, so I'll be over here cheering for you, along with the others!
LOL! Modified Stationary Panic, or Full Bore Linear Panic :o)?
---------------------------------------------------------------------------------
I found this little excerpt --too funny
This brings up the tricky question of when to stop the full bore linear panic. Sometimes your terrain makes this decision for you. Things like dead end alleys and very high cliffs make continuing the FBLP physically impossible. Other stop events are things like "out of danger" and unconsciousness brought about sudden assisted halting (like running into solid lamp posts).
Anyway, as far as I can tell ANA for Lupis, and ASMA is for autoimmune hepatitis. Enough to scare me to death. Will keep you posted as I find out more.
Maybe I should run myself into the door wall ?
---------------------------------------------------------------------------------
I found this little excerpt --too funny
This brings up the tricky question of when to stop the full bore linear panic. Sometimes your terrain makes this decision for you. Things like dead end alleys and very high cliffs make continuing the FBLP physically impossible. Other stop events are things like "out of danger" and unconsciousness brought about sudden assisted halting (like running into solid lamp posts).
Anyway, as far as I can tell ANA for Lupis, and ASMA is for autoimmune hepatitis. Enough to scare me to death. Will keep you posted as I find out more.
Maybe I should run myself into the door wall ?
LOL! Modified Stationary Panic, or Full Bore Linear Panic :o)?
I don’t know if either of those tests are indicated for you or not; I do believe they’re some of the tests used to screen for AIH, though. Again, it’s very rare to develop it, but better safe than sorry. I wish I know more about this, but we don’t gather nearly as much knowledge if we don’t go through it ourselves, you know?
Hang in there; this is probably just extra caution on their part—
Bill
I don’t know if either of those tests are indicated for you or not; I do believe they’re some of the tests used to screen for AIH, though. Again, it’s very rare to develop it, but better safe than sorry. I wish I know more about this, but we don’t gather nearly as much knowledge if we don’t go through it ourselves, you know?
Hang in there; this is probably just extra caution on their part—
Bill
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
