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First 4 weeks on Telaprevir
Renee here...going on my 5th week on Telaprevir txt. Got all the ususal things I expected going on...the rash, fatigue, dizzy and short breath. But hanging in here for the end result. I just started feeling a bit short tempered and irritable, which scares me. I am just not used to being sick, especially for this long. I still get up every day and run my business but it is harder and harder. I guess what I am wondering is: I keep reading that many people on here that were cleared from this txt, were cleared by week 4. While the doc told me my liver enzymes are half of what they were when starting 4 weeks ago....I am not cleared of the virus. In fact they told me I wld not know anything until week 12, that the drug company did not release the info to even them until then. Does this mean anything? Is there anyone else out there that it took longer than 4 weeks for your enzymes to drop? I can see this is going to get rough....already tired of feeling like this....but trying....
What's a Quest heptimax? is that the PCR test?
Hang in there Renee - all days are different! And yes, this trial is great because it's open label and I heard that the whole treatment will be up to $100K! So yes we are fortunate we can get them for free before they come out.
Hang in there Renee - all days are different! And yes, this trial is great because it's open label and I heard that the whole treatment will be up to $100K! So yes we are fortunate we can get them for free before they come out.
Before I started my trial, I had asked my primary doc on several different occasions give me an Rx for a Quest Heptimax. I stockpiled them and once I started my trial, I used them at week 1, week 3 and week 4. Once my primary doc figured out what I had done, she was kinda mad, but forgave me, thank goodness. I never knew being in a blinded trial would make me so sneaky.
I don't know if I could have handled the stress of not knowing. I'm very glad I did because I fully expected to be stopped at week 24, but was extended to 48 weeks. If I hadn't known I was UND by day 21, I'd have flipped out. Of course I didn't share my status with my center and I continued the course of treatment they recommended.
Here in FL, the test costs about 440.00. Maybe you could get just one done at the 12 week point?
It's a great trial to be in. We thought about screening my daughter for it, but I just can't wrap my head around her being in a trial, As a mother, I thank you for participating in it so that my daughter and others will have the best dosing protocol.
And as a sister lab rat, I can tell you to try to maintain nutrition and hydration...it will help even tho your taste buds are changing. For a while I was addicted to rasberry and watermelon liccorice, lol. I started anti-d's around week 7 (Zoloft) and it helped with the mood and the 'tude., Schedule rest periods during the work day if possible.
Good luck to you! Hang in there!!
Isobella
I don't know if I could have handled the stress of not knowing. I'm very glad I did because I fully expected to be stopped at week 24, but was extended to 48 weeks. If I hadn't known I was UND by day 21, I'd have flipped out. Of course I didn't share my status with my center and I continued the course of treatment they recommended.
Here in FL, the test costs about 440.00. Maybe you could get just one done at the 12 week point?
It's a great trial to be in. We thought about screening my daughter for it, but I just can't wrap my head around her being in a trial, As a mother, I thank you for participating in it so that my daughter and others will have the best dosing protocol.
And as a sister lab rat, I can tell you to try to maintain nutrition and hydration...it will help even tho your taste buds are changing. For a while I was addicted to rasberry and watermelon liccorice, lol. I started anti-d's around week 7 (Zoloft) and it helped with the mood and the 'tude., Schedule rest periods during the work day if possible.
Good luck to you! Hang in there!!
Isobella
I believe the trough levels that are showing up in the twice daily dosing will prove it as effective as 3 times daily, but only your trial will prove it.
I was randomized into 24 weeks of Telaprevir and proved that 24 weeks is unnecessary - LOL. I can laugh about it now, but 24 weeks was a bit much, especially when followed by another 24 of SOC.
I was randomized into 24 weeks of Telaprevir and proved that 24 weeks is unnecessary - LOL. I can laugh about it now, but 24 weeks was a bit much, especially when followed by another 24 of SOC.
I am glad I was able to get in on this last phase 3 because they told me they are not sure how the insurance companies are going to handle this once approved. It is very expensive and they are not sure how much the ins co. will actually pay. I do not have insurance (pre-exisiting cond..hepc) so this was my chance.This final phase is testing the dosing times. Twice a day vs three times a day. I do mine at 6:30, 2;30 & 10;30. The Riba is in the a.m. and afternoon. I usually just go ahead and take it with the Tela...makes it easier to remember. I also take Advil, 1/4 nausea pill and Benadryl...so that's a lot of flippin pills to take. I have also found my appetite changing to the more bland. I eat several little plates of food a day. Cannot handle a lot of food at once. I wish I could indulge in choc ice cream but sugar really is too sweet and I can't eat it. I bought boxes of all fruit pop cycles.
Well here's my hope for today: It's a new day here (just rained) and I hope it's better than yesterday. :-)
Thx All....Rene
Well here's my hope for today: It's a new day here (just rained) and I hope it's better than yesterday. :-)
Thx All....Rene
I also found the late night dose difficult. Vertex is testing twice daily dosing and I was hoping this is the trial you are in.
I treated myself to a large dish of Dove Unconditional Chocolate ice cream to make the evening dose more palatable :). It is difficult to take it 3 times 8 hours apart.
I think all the aids PIs started at three times daily and now are one or two times daily. I am confident the HCV drugs will do the same eventually.
I treated myself to a large dish of Dove Unconditional Chocolate ice cream to make the evening dose more palatable :). It is difficult to take it 3 times 8 hours apart.
I think all the aids PIs started at three times daily and now are one or two times daily. I am confident the HCV drugs will do the same eventually.
All the symptoms you mention as the same as I had on SOC. I am concerned about your dosing for the tela. as I am looking at tx soon, What times of day do you need to dose the tela. Or, question what time in-between each dose is needed. Do you need to take riba at the same time or different? I know the riba is 2x day. I didn't know they were still doing trials with drug being offered so soon to the public.
I am in the 3x dosing. Can't wait to be over the Telaprevir...that last dosing at 10:30 is hard, cuz you have to eat too and I am so ready for bed by 9:30-10:00.
Yes, I may get the PCR if I can, but I know it is expensive...so may just wait.
Trying to think positive and plan on it being cleared anyway :-)
I have my good days and not so good days....but nothing I can't handle..so far. But long ways to go....thanks to eveyone. I'm going thru this alone and it's great to know I can get on this forum for help. I have already got so much good advice and encouragement.
Yes, I may get the PCR if I can, but I know it is expensive...so may just wait.
Trying to think positive and plan on it being cleared anyway :-)
I have my good days and not so good days....but nothing I can't handle..so far. But long ways to go....thanks to eveyone. I'm going thru this alone and it's great to know I can get on this forum for help. I have already got so much good advice and encouragement.
Hi Renee,
Sorry to hear that you are starting to get some sides. Hang in there!
My BF has just started. Rough 2 days after the first shot but today hes out and about.
About the results, did you consider going to your regular dr. at week 4 and order a PCR test to know if you're UND? That's what I think we'll be doing. 12 weeks is a long time to wait, I agree!
Keep us posted!
Sorry to hear that you are starting to get some sides. Hang in there!
My BF has just started. Rough 2 days after the first shot but today hes out and about.
About the results, did you consider going to your regular dr. at week 4 and order a PCR test to know if you're UND? That's what I think we'll be doing. 12 weeks is a long time to wait, I agree!
Keep us posted!
What trial are you in? It this the trial testing twice daily dosing?
In 2007 I was in the Vertex Prove 3 trial and cleared the virus between week 1-2 and remain that way today.
I wouldn't worry about your liver enzymes fluctuating. My fluctuated also during tx; there's a lot going on inside your body right now. I have no idea what trial you are in....do you know that you are taking Telaprevir and not a placebo? Also the data I've read says it's critical to be taking Ribivirin in combination with INF and Telaprevir.
I hear you about running a business during tx. My business has me flying 1-3 times per week and my energy level and focus was shot. Ask your doc to prescribe Provigil. It's for narcolepsy but my doc gave me a script and it really helped with the mental fog and boosted my energy.
Hang in there. It's tough but after you SVR you'll look back on this as a bump in the road. Really.
miked
I wouldn't worry about your liver enzymes fluctuating. My fluctuated also during tx; there's a lot going on inside your body right now. I have no idea what trial you are in....do you know that you are taking Telaprevir and not a placebo? Also the data I've read says it's critical to be taking Ribivirin in combination with INF and Telaprevir.
I hear you about running a business during tx. My business has me flying 1-3 times per week and my energy level and focus was shot. Ask your doc to prescribe Provigil. It's for narcolepsy but my doc gave me a script and it really helped with the mental fog and boosted my energy.
Hang in there. It's tough but after you SVR you'll look back on this as a bump in the road. Really.
miked
Renee, like you I am in a trial that doesn't reveal VL before week 12. And, I won't get another VL result until the end of therapy at week 24. The trials all have their own criterion or protocols. I hope that you can hang on until your 12 week results let you know how you are doing. Best of luck.
Get some AD's for the rage, they helped me a lot.
Hi Renne. It seems all trials are run with different protocols. Many keep the viral load blinded from the participant and even the doctor for the first 12 weeks,and others reveal viral load right from week 2 or 4 and as you go along.
Like I said don"t worry too much about liver enzymes ,as they can fluctuate.
Make sure you drink plenty of water everyday to try to minimize your side effects, and keep fighting the good fight.
If side effects come up ,ask questions here ,as someone who has been through it before may be able to give you some thoughts on how to deal with it.
Good luck..
Will
Yes, I was talking about my liver enzymes being half. They said they wld not know my viral load or how I was doing until week 12, when the drug company tells them. That was exactly what I wanted to know if I cld base what my viral load may be as a result of my liver enzymes. How did people find out they were cleared at week 4, if they don't release results until week 12? Maybe a different study lets you know sooner? A little hope wld go along way....thanks Will, I appreciate the input very much. Renee
Also don"t put too much stock in what your viral load may be based on the on the result of your liver enzymes. They often flucuate quite a bit while on treatment.
Hang in there...
Will
I am not sure what trial you are in, but you will probably not be able to treat for the short term - 24 weeks if you were not clear at 4. However that does not mean you will not clear and reach SVR. You will just have to do the 48. But it all depends on your trial criteria.
Frijole
Frijole
I am a little confused by your post Rennee..you say you are not clear of the virus at week 4 ,however you also say that you won"t know your viral load until week 12.,so how do you know.you aren"t clear?
Will
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