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Avatar universal

Great news yesterday, but some questions

I went to the dr. yesterday for my 4 week viral load results and they are undected!! She told me that most  people who are genotype 1a and go undected at 4wks and stay that way, have a 90% chance of clearing this for good. And she said that studies are showing that when this is the case, you can stop tx 2 months earlier. I was so happy I just cried and forgot everything I was going to ask her. I'm pretty sure most of the side effects are normal. I have the usual chills, aches, skin is getting dry and rough, hair as well, mouth sores etc. But this fatigue is unbearable. It just started getting really bad the past few days. She says I'm getting anemic and when I hit 11 she will start me on procrit. I was at 11.2 the week before , so I expect they will call today about yesterdays blood test. I have heart disease so getting anemic is a bad thing. My question is about procrit. Does it make you feel sick? Does it hurt? Where do you give yourself the shot at? My tummy is busy with other shots at the moment:P How long does it take for it to make this breathlessness and absolutely no energy go away? Also I can hear and feel my heart beat in my head and it's driving me nuts. Thanks for any advice or answers, you all are the best for helping with all these things that come up.
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223152 tn?1346978371
Most doctors will let you choose your PCR test.  The standard test has a sensitivity down to 50, so it is possible to have virons present and not know it.  You need to find out which lab you are using .  The main ones are Labcorp and Quest.   LabCorp's QuantaSure has a sensitivity of 2 and Quest's Heptimax has a sensitivity of 5.  There have been some studies where they have retested blood samples of relapsers who were UND at 12 weeks by tests that were not sensitive and there were virons present in a significant number of them when retested by sensitive test.  

Your 12 week result is critical, and Please ask the doctor for the one you want.  By the way, I would put my pitch in to get copies of every test -- every blood test, PCR and othere hepatitis related test.  My records are much better than my physician's.
frijole
ps - glad you are going the 48
Helpful - 0
Avatar universal
Congratulations on your 4 week UNDETECTABLE!! for us 1 A's that's a miracle!!
There are many out there that DO NOT go undetectable at 4 weeks--so count ourselves a blessing!
My recommendations is to go the 48 weeks! There is not enough data out there to support stopping early--and you DO NOT want to do this again if you do not have to!
As far as sides are concerned-- you're right where you should be if you are going to have sides-- sorry :(
Thank God for "rescue" drugs now--or a lot of us 1A's would have to stop treatment...
Procrit is a good drug for anemia-- I have had to do a couple of shots since starting treatment-- I just did my 16th shot--- I also am 1 A and went undetected at 4 wks and have many sides...ANEMIA-- LOW WBC-- "THRUSH" (mouth sores) dry skin--hair (hair starting to thin now) I take procrit when needed-- I have adjusted to the 11's RBC without procrit now-- I take neupogen shots every other week now... I take medicine for "thrush", I take "Zolfram" for nausea every day... I take Seroquel for sleep...
You can get through this---just knowing that we went from a 40-50% chance of clearing to a 90-95% chance when we 1st started!!
It's hard---but it's worth it!!
Good luck & God Bless...Dorsey
Helpful - 0
485138 tn?1222349319
Hi, I'm in week 3.  I've gotten a lot out of your notes, thanks for writing them.  I'm having a helluva time with exhaustion, dry metal mouth, dry bumpy skin, exhaustion.  I'm taking SloFe iron for the anemia, go to the Dr. next week for the 4 week update. Wish I could sleep..........Thanks again for your updates, it means a lot to me.
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Avatar universal
After thinking about this, I have decided I will go the entire 48 weeks. What's a few more weeks after that much time anyway! I don't know what sensitivity was. Didn't think to ask!
My HGB started at 14 and at week 6 was 11.2. I have yet to get the results back for this weeks labs, but I'm sure feeling different. Hopefully today I will get a response from the doctor so I can start to get this under control. Thank you so much for your response.
Helpful - 0
223152 tn?1346978371
Congratulations on your UND.  What was the test sensitivity? You are correct that your chances of clearing the virus when you are UND at week 4 are very good.  However, that is clearing with the standard 48 weeks.  I would not recommend quitting early - there are so many quasi species of geno 1a that can hide.  I was clear by sensitiby PCRs for 36 weeks, and still relapsed.  YOU DON'T WANT TO DO THIS TWICE!

With HGB of 11.6 I imagine you are feeling pretty bad.  I think the adjustment to this HGB is the hard part. Later on in treatment I think your body adjusts to the "11s" and it is not quite so difficult as it is when it is still dropping.   I began thinking procrit when my hgb was where yours was, and, in fact, started it at about 13 weeks when my hgb dropped under 11.  However even with procrit it never, except for those first couple of weeks after starting it, brought my hgb over 12.  Do you know what your start HGB was?  

As far as side effects, they are minimal.  Procrit burns some during the injection and it is helpful to let the vial stand at room temperature for a few minutes and to inject slowly.  I did not have any adverse side effects, and the benefits (to me) outweight any side effects.
Good luck
frijole
Helpful - 0
Avatar universal
Congratulations on going UND!  Thats a great way to begin.

Fatigue and anemia are the worst sx I've had (I'm in week 35 of 48).  The procrit helps.  I inject it in my thighs because it doesn't give me bad site reactions the way the peg does.  It doesn't hurt or make me sick or anything.
Helpful - 0
387294 tn?1207620185
I haven't heard of type 1a quitting early in any studies I have read, I am not a medical professional though.  From my take on all I have read, if your health permits, it would be preferable to complete 48 weeks to ensure SVR.  Mar
Helpful - 0
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