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579125 tn?1251576265

Thinking Ahead

I haven't posted in a while but I always find this to be a place of experienced input. I am Geno1 stage 2 starting vl 5mil -  I started the Telaprivir trial on Dec. 26, 2008 and have gone through treatment fairly well. I was getting PCRs on the side to track my progress since the trial is blinded. According to my PCRs I was UND by the 4th week and stayed that way till the 24th week when I did my last PCR, my test were done at Lab corp.

I recieved results from the trail nurse on Tuesday telling me that I was UND at 24wks but  tested <25 at 28wks asking me to come in to retest on the 21st... I wasn't due back till Sep. 4th for 36wk visit. She told me that if the retest comes back detectable again I would immediatly have to stop tx and return for post tx which I believe is just to return the meds I have left.

My questions are many and  I am hoping for the best but planning accordingly. If the test comes back detectable again what would be a good course of action.
Try to continue on with SOC with my doctor?
Just wait for new drugs to be released? Are there options I have that I am not aware of?
I believe I have read on this forum in the past that I would not be able to tx with Telaprevir again... is this right?

I know these are what if question but I am thinking out loud and don't have answers. Maybe some of you have been here and done this and could shed some light.

Thanks in advance.
19 Responses
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264121 tn?1313029456
I never have heard that strenous workouts might be bad on the heart while on tx. Do you have any info you can post on this that I can read up on.
---------------------------------------------
I think it may depend on your blood count.  If your blood count is very low due to treatment, then it is harder on your heart if you are also causing exertion via exercise.
Helpful - 0
Avatar universal
I worked out tru TX,and i used very light weights and i only did it every about once a month.I tried to lifgt more but it was impossible,im back up to pumping 130 on the barbells.,on TX all could do was 40 lbs
Helpful - 0
Avatar universal
it clearly states on the interferon 'indications' sheet that the body has a reduced ability to replicate muscle tissue and that if you're attempting to build muscle, it might be wise to wait until the treatment is over.

at least work out easier
Helpful - 0
579125 tn?1251576265
I never have heard that strenous workouts might be bad on the heart while on tx. Do you have any info you can post on this that I can read up on.

Thanks
Helpful - 0
Avatar universal
Be careful doing strenous workout while on TX,it may damage you heart,just workout light
Helpful - 0
579125 tn?1251576265
I started the protein to recover from workouts because with tx it just is vary taxing but I don't want to decrease my workouts... it is my way of processing things. I can go without the whey or the melatonin and it might be what is best for now.

I don't like taking drugs... I haven't taken anything other than Tylenol all through tx and I don't want to start now... not that I didn't spend most of my life in a pharmaceutical self study program!

Yea I like to fish the eastern Sierra's here in California. My 11 year old goes with me and we hike up into the mountains and fish the lakes. That fish in the picture was a 10lb trout I caught last year.

Anyway thanks for responding to my post with some good info.
Helpful - 0
Avatar universal
LOL...i just looked at the pic in your profile.looks like you love your fish.
Helpful - 0
Avatar universal
BTW...if you want to get excellent protein and you dont want to eat fish or commercial meats ,eat organic eggs organic chickens in place of the whey if you are concerned...im still taking my whey beause in my last TX i didnt take it and i turned into a broom handle
Helpful - 0
Avatar universal
I was worried about taking the whey my self ,but my doc said it was ok,but not to take anything else and try to eat simple wholesome healty foods.Well i went UD at week 2 im lucky so far.Its hard to prove certian foods and supplements affect the TX drugs,this why we have to keep the diet simple.I would take a break from the protien and the MEL for now at see what your next test will be.If ya cant sllep ,maybe get a few knock out pills until your next test./again,just trying to help and this is my opinion
Helpful - 0
Avatar universal
Can you take protease enzymes when taking prescription “protease inhibitors”?



More often than not, the term “protease” that describes proteolytic enzymes is used in very general terms. There are many metabolic proteases in our body, each with many different functions. The medications that are designed as protease inhibitors are targeting a very specific viral protease. The supplemental digestive proteases are very different and will not interfere with the medication. In fact, oral supplemental digestive enzymes such as PureZyme can be very supportive to those patients with auto-immune disorders. [back to top]


http://www.enzymeessentials.com/HTML/faq.html#13
Helpful - 0
579125 tn?1251576265
Rocker -
I don't have any health problems... I work out 6 days a week and have stayed with that most of tx. I did get the melatonin approved before taking it. I never get to talk to or see the trail doctor so everything goes through the trail nurse... she said it was no problem. But I do wonder about it. I started taking it because my sleep was so bad, I was like a zombee from the time I got up in the morning through the day... hard time thinking, concentrating and focusing. You might be right it might be good to stop taking it for now.

annieCinMD -
To tell you the truth I don't want to think about having to retreat that's why I was asking about trying to continue on with SOC if the test comes back positive. But I am with you ... lets pray neither of us has to do it.

Helpful - 0
751342 tn?1534360021
I was OK with the option of retreating with polymerase inhibitors should I not clear this time around. I don't think my doctor would have given me the OK to stop early if he thought the polymerase inhibitors were bad in any way. I'm thinking they are probably at least as good as the protease inhibitors. Let's hope neither of us need to go that route, but it is available. My doctor does all kinds of studies, so I feel confident he can get me in another one if I need it.
Helpful - 0
Avatar universal
If you have any of the following health problems, consult your doctor before using melatonin: disorders of immune system, liver or kidney disease, stroke, depression, epilepsy, diabetes.


http://www.medicinenet.com/melatonin-oral/article.htm
Helpful - 0
Avatar universal
In individuals with auto-immune disorders, there is concern that melatonin supplementation may ameliorate or exacerbate symptoms due to immunomodulation.[80][81]

An immunomodulator is a substance (e. g. a drug) which has an effect on the immune system. There are two types of such substances:

Immunosuppressants
Immunostimulants



http://en.wikipedia.org/wiki/Melatonin
Helpful - 0
Avatar universal
What did your doctor say about taking the supplement Melatonin ? Its know to affect interferon levels,not trying to post bad news ,but i would stop taking those pills and see whta happens at you next test,just trying to help

melatonin may enhance cytokine production,Basically, the term "cytokine" has been used to refer to the immunomodulating agents (interleukins, interferons, etc.).
Helpful - 0
579125 tn?1251576265
I am hoping for the best but trying to plan ahead, if there is even a way to do that. I thought I had read that you can not treat with Teleprevir again, but I am hearing good things about the polymerase inhibitors

I will let you know what happens on the 21st. Have to run to Costco.

Thanks
Helpful - 0
751342 tn?1534360021
To answer your question about retreating with Teleprevir or any other protease inhibitor, the answer is no you can't retreat with a protease inhibitor. BUT you can treat with a polymerase inhibitor. These are being studied now, and I'm sure there are trials. I got this from my doctor because I heard the same thing on this forum and wanted to quit the trial early due to bad side effects. I asked him this question so I could make an informed decision about stopping early. They did talk me into completing up to the end of the study drug (another protease inhibitor), and stopping then. Let's just hope you got a false positive on that test. I've seen that sort of thing pop up around here, too. Keep us posted when you get the retest back.
Helpful - 0
683664 tn?1330966324
I am answering you by pm.  Please look for a message from me.

Lapis
Helpful - 0
579125 tn?1251576265
I might add that the only thing I have changed in the past month is I started taking a Whey protein drink once a day and Melatonin at night.
Helpful - 0
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