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Avatar universal

shot # 4 doctor my eyes.....

had shot 4 tuesday. my eyes are startin to bother me a bit like last month when i was on tx, but so far, not as bad.  my eyes are sore and sensitive to light. i see the eye doc tommorow and hope its nothin that will make them stop tx.  i also have a sore throat and my doctor checked me out and noticed my neck glands are a bit swollen, but she thinks it may be a virus cause my daughter is sick. other than that i get some nausea off and on and back pain, but its no way near as bad as last month before they stopped my tx. has nyone had this eye thing? is it somethin that may go away?  well, i hope your all doin well and welcome to all the newbies i missed.
GODBLESS
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Avatar universal
ral
Thanks for all your advice.
downthisroad
raheem
Willing
susan400
mikesimon

I have calmed down

Bob
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Avatar universal
Bob I just read your last post. Do you have to go down that low? From 1200 to 600 seems a bit much if you just recently are showing low rbcs. I don't know the frequency of your labs but if this is recent I'd try to go down to 1000 or 800 if Procrit is not an option. If the low rbcs are not real low a more modest reduction may work for you. Just an opinion. Mike
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Avatar universal
if you're down to 150lbs you probably were doing  one pill too many even before this reduction. One pill makes a difference: I also weigh 180 and recently increased to 1200 after 36 weeks of 1000 and boy have I noticed a difference... From the thread above it sounds like you've got a good plan in place- doing the rest of your tx at 600 wouldn't be so great but cutting back for a week is just noise. We've got to trust our Drs - the point of getting background information is mostly to be able to understand why they're doing what they're doing and to understand how much their judgment differs from "consensus" opinion. Enjoy your riba vacation!
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Avatar universal
ral
Hi willing

O.K. when I started tx I was about 180lbs now I am 150lbs so that would mean a 1000. 5 pills but what do? Dr wants me at 600 and check me next week I don't feel I want to fight this guy to hard because I think he is on top of it and does not want me to stop tx, period? He just came back from a lecture at University Hospital in Denver and he realizes a Dr there might treat 1000 cases where he only treats a 100. But I do feel he stays on top of tx. He just talked to me about protease pros and cons. So this guy is not lazy, he is interested and thanks to you guys on this site I have made him earn his money when I come in with all my questions and facts.

Thanks

Bob
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Avatar universal
Hi Bob, sorry I wasn't clear. Take your weight (in lbs) and multiply it by 6.25 - that's the 'optimal' dose of riba (in mg) you should be taking according to the following recent <a href="http://www.abstractsonline.com/viewer/viewAbstract.asp?CKey={36E90257-8816-41F3-870A-664EE3F924AF}&MKey={201E3AB1-B366-4CFC-879B-196DF41D3A21}&AKey={704CF973-D8A8-4909-A16B-9F7D9FB76BC7}&SKey={B95B7700-4CCE-45A4-8AB0-70F91E33D429}">study</a>.
Each pill is 200 mg. As Mike points out, going from 1200 (6 pills) to  600(3 pills) is pretty drastic. Better choices would be to stay at  the optimal dose and add procrit to control the anemia or start with a smaller reduction and see if your hemoglobin comes up.
Best wishes.
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Avatar universal
ral
Yeah a vacation right on! Also I am going to my son's wedding in L.A. thanks to all the people's support.

Anyway willing I do agree with you you have to trust someone and just go for it.

So I will take a little break here and I do belive that my counts will come up.

Take care

Bob
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Avatar universal
I just want to echo what willing and the others have said. I'd try for Procrit rather than reduce ribavirin. Good luck. Mike
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Avatar universal
Dear Bob,

I'm so sorry that you're having to deal with your wife's illness on top of your own.  You are really going through quite a test right now.  Keep your faith and I'll say a prayer for you.
Susan400
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Avatar universal
ral
Hi downthisroad, I take it you are in the Denver Area? I am in Basalt near Aspen?

Willing, so you are saying; On the other hand there's a *lot* of data showing riba dosage matters - 6.25 mg/lb seems to be the best dose. I am taking 1200 6 a day are you or the article saying I would be o.k. with the 3 pills a day?

Thanks

Bob
Helpful - 0
Avatar universal
Hi Bob. There's no bad news here just the usual ups and downs of tx . As far as the tests go you're in the same spot many of us are. You definitely got your 2-log drop by 12 which is the criterion for continuing standard (48-week) tx. You didn't show undetectable at week 12 but used a sensitive test. Others, like me, showed undetectable but used a rough (600 iu) test. How much does it matter ? According to the recent Davis study your odds of SVR go from about 83% down to 21% depending on whether you were or weren't undectable on a 100 copy (about 35 iu) test. Your VL was low enough that you're presumably closer to the 83 than to the 21 but that study won't tell you how close. You might want to talk to you Dr. about doing more than 48  - though he'll probably tell you there's no data that confirms it'll do any good.

On the other hand there's a *lot* of data showing  riba dosage matters -  6.25 mg/lb seems to be the best dose. As Raheem and DTR said, make sure your Dr. explains exactly why he's choosing to reduce dosage rather than prescribe procrit. And on and on we go... hang in there - you've got a great attitude.
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Avatar universal
Hi ral. Your medicine is working well to bring down the virus, regardless of what any of the clearing stats show.  You should be positive about clearing and know that you have your illness on the run. I was given a vl test on week 6 in order to see if the meds were working because my rbc dropped then, so drastically low.  My meds were indeed working as well.
I went from 440,000 down to 32,400. It wasn't a 2 log drop, but I kept moving forward at the advice of my doctor. I am now clear, down to 50. The pcr test at my 24 week point showed clear. My doc said although we don't have the 12 week stats in front of us, we are continuing on with my treatment.  I could have cleared in week 7, I could have cleared in week 24.
My GI is taking the approach to treat my 1a longer than the 48 weeks usual duration.
I'm listening to his recommendations and moving forward day by day.  Not sure what my length of extended medicines will be, but will be within 6 to 8 weeks.  I'll worry about that, when I get there.
Everything that my doctor told me about these meds and treatment has come true so far.  I'm letting him guide me through this process so that I have a chance of beating this finally. My GI is very aggressive with treatment of chronic liver diseases. He is one of the heads with Rocky Mountain Gastro and works with CU Medical Center for treatment of chronic hepatitis C.
Keep strong ral.  You are doing and have done well with your treatment.  Give yourself a lot of credit for being very strong. Talk to your doctor about extended treatment if you can take a few extra weeks on the medication.




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Avatar universal
My eyes are extremely sensitive to light and only started a couple of months ago. The last few times I sat outside or was out in the sun, I literally couldn't keep my eyes open.  Dry and scratchy is how they have felt since beginning of tx.

I'm happy to know that your medicines are being a little more friendly this time around. Just keep going, make the time to take nice walks and concentrate on doing and finishing your treatment.  You can do it!  Stay strong!
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Avatar universal
ral
Hey mrbill you sound like your right in there.

Hang tough!

Hey Gang got my vl it HCV QUANTASURE PLU (is that the most accurate)? Anyway good and bad news not undetectable but down to 140 IU/ml which is in the right direction. This was done at 14 wks we are now at 16 wks. Dr feels I would be undetectable now but we agreed to wait till 24 wks to test again. Anyway anyone have some thoughts on my drop. I am 1b started out at 1.5 million dropped to 4300 in 8 wks.What does it mean when the virus still hangs on like this? I know it is almost gone but are my % for clearing droping with this outcome?

He is watching my blood also.

It kind of thru me because I thought I would be undetectable so am a little down but I still have hope.


Thanks for your help

GOD BLESS
Bob

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Avatar universal
ral
I meant threw me, not thru

Bob
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Avatar universal
ral
Just got a call from my Dr., another bump in the road. He said my Hemoglobin is down wants me to drop Riba to 600 for about a week to see if I stabalize or maybe put me on procrit. Man, I don't want to do that. What do you guys think about that?


Thanks Bob
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Avatar universal
My eyes were sensitive to light right after I started tx, now either I don't notice it or it went away.  I didn't even want to sit in the sun or put the overhead light on over the table when we'd eat.  The sore throat thing I've had pretty much all along, 22 weeks now, no infection, dry throat, dry sinus, dry eyes.
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Avatar universal
I was posting to you at the same time you were writing your most recent post.  I was prescribed 1,200mg riba daily from the start of treatment.  At week 7 and 8, my rbc dropped quickly. In order to stay on the treatment meds, I had to start taking Procrit. I had to also decrease my riba down to 800 daily for 2 weeks.
I have been back on my inital dose of 1,200 from week 9. The Procrit made me feel much better and continue on with treatment. It didn't effect my chance at an undetectable stage.

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Avatar universal
Go with the procrit or epogen, I had a HCT down to 26 and feeling poorly, my doc put me on epogen and within 2 weeks my HCT was up to 31 and feeling better. I'm a 1b guy and it is very important to stay at 1000mg of ribavirin if possible.  Epogen is about $400-$500 a shot, if you are in an HMO, the doc might be trying to go the cheap route and cut back ribavirin. Ask him, in a cozy way of course! You have to watch these guys.
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Avatar universal
ral
Thanks so much for responding. My wife is dealing with inside two possibly breast cancer so we are both dealing with a whole bunch of stress plus she has ARVD which is a very rare heart disorder which made her almost pass 3 times but thank GOD she is here. She is strong as an ox and beatiful as a butterfly and tough (she'd have to be to deal with me). So we need some prayers. I kind, No not kinda, I did have the RIBA RAGE tonight I guess not clearing and wanting to take care of her my business and our grandson who lives with us and then all this other news was just to much.

Anyway I really have grown to love you guys. This disease really has brought us together for a reason

GOD BLESS
Bob
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Avatar universal
I noticed the light sensitivity and dry eyes. Eyedoctor said to wear sunglasses and use liquid tears--there wasn't anything to worry about. She said that the expensive liquid tears really were better--no preservatives and better formulations.
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Avatar universal
I've been using an eye mask when I rest. I find the light a little more distracting then the past.

Also,if I remember right you're taking Olanzapan {Zyprexa}.My doctor just prescribed it for me.

Is anybody else here taking it?

I don't have any bi-polar problems which is what it's generally used for. My doc says it might help with tx.
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Avatar universal
There is a product by Alcon called Tears Naturale P.M. Eye Ointment that is great for use at night.  It is a preservative free lubricant that works great.  I found it halfway thru tx and it helped tremendously (there are other nighttime ointments too, of course)
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Avatar universal
During tx my eyes and nose were both dry. Fortunately, there are many non perescription remedies available to help with symptoms. At times I could not focus at any distance and my natural reaction to rub my dry eyes made things worse. About two months after I completed the course of treatment I no longer needed glasses to watch tv or a movie. I am typing this message without my glasses which I would never have been able to do a year ago.
Helpful - 0
Avatar universal
During tx my eyes and nose were both dry. Fortunately, there are many non perescription remedies available to help with symptoms. At times I could not focus at any distance and my natural reaction to rub my dry eyes made things worse. About two months after I completed the course of treatment I no longer needed glasses to watch tv or a movie. I am typing this message without my glasses which I would never have been able to do a year ago.
Helpful - 0
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