Aa
20 week PCR
Hello Everyone;
I will be taking my 20 week PCR tomorrow and hoping and believing to be clear. I need to completely clear by week 24 or I will be taken off tx.
Pre-tx viral load was 55,967,000 and cryo levels of 4%
12 week PCR 18,000
16 week PCR 1600 and ZERO cryos! My cryo levels are now undetectable. Doc says that since the cryo is in remission, I have a good chance of clearing the Hep C.
For those of you just starting or contemplating tx, it's not as bad as I thought it would be. I was the nutritional, herbal, exercise nut that wouldn't even take a tylenol, let alone inject this poison. I maintained a great regiment of alternative tx's for 3 years. But the cryo caught up with me and allowed the Hep to mutate like crazy. That is why I chose to treat.
To say I was scared of the first shot was an understatement. It was not as bad as I had imagined. During this tx journey, I have had a few really rough days ( especially in the beginning ) But about 80-90% of the time, I feel OK and function quite well. ( my sides are mainly feeling weak, nauseated, and joint pain )
I have 2 girls on a swim team, lots of practice & meets. I also stlll cook & clean and maintain my home. It's totally doable and on the bad days, I take vicodin. But it's all worth it to be rid of this virus and the cryo, so I can move forward with my life. I know good things are coming from this trial and I have grown closer to God as a result of this tx. Yes, it's been a battle and at times very difficult, but in saying that > so many blessings have come from doing tx.
((((( Sue))))))
I will be taking my 20 week PCR tomorrow and hoping and believing to be clear. I need to completely clear by week 24 or I will be taken off tx.
Pre-tx viral load was 55,967,000 and cryo levels of 4%
12 week PCR 18,000
16 week PCR 1600 and ZERO cryos! My cryo levels are now undetectable. Doc says that since the cryo is in remission, I have a good chance of clearing the Hep C.
For those of you just starting or contemplating tx, it's not as bad as I thought it would be. I was the nutritional, herbal, exercise nut that wouldn't even take a tylenol, let alone inject this poison. I maintained a great regiment of alternative tx's for 3 years. But the cryo caught up with me and allowed the Hep to mutate like crazy. That is why I chose to treat.
To say I was scared of the first shot was an understatement. It was not as bad as I had imagined. During this tx journey, I have had a few really rough days ( especially in the beginning ) But about 80-90% of the time, I feel OK and function quite well. ( my sides are mainly feeling weak, nauseated, and joint pain )
I have 2 girls on a swim team, lots of practice & meets. I also stlll cook & clean and maintain my home. It's totally doable and on the bad days, I take vicodin. But it's all worth it to be rid of this virus and the cryo, so I can move forward with my life. I know good things are coming from this trial and I have grown closer to God as a result of this tx. Yes, it's been a battle and at times very difficult, but in saying that > so many blessings have come from doing tx.
((((( Sue))))))
Dear Ina;
I am really sorry to hear about your insurance. I can only imagine the stress you feel. Try to get some rest. It is not good to stay up that long. I know this has got to be hard.
Pegasus gives free meds to patients that qualify. I am not sure though, what the finacial qualifications are. But you can call the main number and ask about their " free " program.
Call 1-877-734-2797. I'll be praying you get your meds free!
(((((( Sue )))))))
I am really sorry to hear about your insurance. I can only imagine the stress you feel. Try to get some rest. It is not good to stay up that long. I know this has got to be hard.
Pegasus gives free meds to patients that qualify. I am not sure though, what the finacial qualifications are. But you can call the main number and ask about their " free " program.
Call 1-877-734-2797. I'll be praying you get your meds free!
(((((( Sue )))))))
Hey Ina;
One more thing about my cryo being negative, while I still show 1600 in my viral load at week #16.
If you read my original post, I had a 55,967,000 PCR as a starting point. Prior to tx, I've seen three experts all from Standford. They said the same thing about the viral load. It does not correlate with liver damage. But when it skyrockets like mine did, it triggers autoimmune stuff and can further complicate things.
They also mentioned that they have never seen a viral load go up that high in all their years of tx ( unless it was from a transplant person on immune suppression drugs ) So, maybe I still have the virus lingering because it was so out of control. I dont know. There's really no rhyme or reason to this little bugger. They are constantly learning everyday.
((((( Sue ))))))
One more thing about my cryo being negative, while I still show 1600 in my viral load at week #16.
If you read my original post, I had a 55,967,000 PCR as a starting point. Prior to tx, I've seen three experts all from Standford. They said the same thing about the viral load. It does not correlate with liver damage. But when it skyrockets like mine did, it triggers autoimmune stuff and can further complicate things.
They also mentioned that they have never seen a viral load go up that high in all their years of tx ( unless it was from a transplant person on immune suppression drugs ) So, maybe I still have the virus lingering because it was so out of control. I dont know. There's really no rhyme or reason to this little bugger. They are constantly learning everyday.
((((( Sue ))))))
Hello Ina;
I'd be glad to answer any questions you have. But, I do think that Dave ( Twotells ) is much more knowledgeable with cryo stuff. He actually treated for 2 years & has cleared the Hep C & the cryo.
I only got diagnosed with cryo last July. I have known about my Hep C for over three years. So I do know a little bit more about the Hep. I am just sort of learning about cryo, as I go along with tx.
I will be going to the Beach tomorrow with all of my daughters. It will be my fist time this year. I am hoping to last at least a few hours. I plan on bringing the umbrella and lots of sunscreen. It will be about 80* perfect weather.
Anyway, I will be around most of the weekend, just not on Friday. Talk to you soon : )
((((( Sue ))))))
I'd be glad to answer any questions you have. But, I do think that Dave ( Twotells ) is much more knowledgeable with cryo stuff. He actually treated for 2 years & has cleared the Hep C & the cryo.
I only got diagnosed with cryo last July. I have known about my Hep C for over three years. So I do know a little bit more about the Hep. I am just sort of learning about cryo, as I go along with tx.
I will be going to the Beach tomorrow with all of my daughters. It will be my fist time this year. I am hoping to last at least a few hours. I plan on bringing the umbrella and lots of sunscreen. It will be about 80* perfect weather.
Anyway, I will be around most of the weekend, just not on Friday. Talk to you soon : )
((((( Sue ))))))
Gr8faith;
Thank you for the prayers. I really do need them. I must clear by 24 weeks or be dropped from tx. I believe I will clear. Congrads on finishing tx. Good for you! I'm glad it was doable for you too. The newbies need to hear these things. Thanks again.
((((( Sue ))))))
Hi Scott;
Glad I can encourage the newbies, they need it. TX is a **** shoot, sometimes it's horrible, but most often it is very doable, as so many others have mentioned.
Yes, we are almost on the same start time for tx shots and I even began the procrit at week # 3 ( just like you! ) Possibly you are my missing twin that lives on the other side of the world? Keep in touch and let me know how your tx goes. ((((( Sue )))))
Hello Ina;
Yes, I was told I would clear the HCV 1st and then the cryo would clear at about 6 or more into tx. It happened the other way around. But then again, I've never been typical, normal or have done things the conventional way. So, why would my tx be predictable. ha!
I think they could have possibly tested me as a false negative on the cryos. I understand that this test is very sensitive and needs special instructions. My doctor called down to the Quest lab and gave specific directions on how to handle my blood samples. I watched the tech put it in a container to keep it warm. I am pretty sure it was done properly, but ya never know.
I will definately retest again > even with the negative result. My Rheumy said not to get too excited about testing negative so soon. She said that when the interferon is stopped, sometimes the levels just go right back up. She also said that cryo levels can flucuate up & down, just like the viral loads do. She is currently treating three other patients with cryoglobulemia and very knowledgeable.
When all is said & done, I choose to believe the cryo is gone for good. And my next PCR will be zero, as well! ((((( Sue)))))
PS- what % of cryos do you have? Just curious. There are several people on Janis & friends that you will find with cryo. Docs say that it's not very common, but I just think that most hep docs don't test for it, so that is why it's considered rare. I think it's a bit more common than most think.
Good luck on your tx journey. Keep us posted
Thank you for the prayers. I really do need them. I must clear by 24 weeks or be dropped from tx. I believe I will clear. Congrads on finishing tx. Good for you! I'm glad it was doable for you too. The newbies need to hear these things. Thanks again.
((((( Sue ))))))
Hi Scott;
Glad I can encourage the newbies, they need it. TX is a **** shoot, sometimes it's horrible, but most often it is very doable, as so many others have mentioned.
Yes, we are almost on the same start time for tx shots and I even began the procrit at week # 3 ( just like you! ) Possibly you are my missing twin that lives on the other side of the world? Keep in touch and let me know how your tx goes. ((((( Sue )))))
Hello Ina;
Yes, I was told I would clear the HCV 1st and then the cryo would clear at about 6 or more into tx. It happened the other way around. But then again, I've never been typical, normal or have done things the conventional way. So, why would my tx be predictable. ha!
I think they could have possibly tested me as a false negative on the cryos. I understand that this test is very sensitive and needs special instructions. My doctor called down to the Quest lab and gave specific directions on how to handle my blood samples. I watched the tech put it in a container to keep it warm. I am pretty sure it was done properly, but ya never know.
I will definately retest again > even with the negative result. My Rheumy said not to get too excited about testing negative so soon. She said that when the interferon is stopped, sometimes the levels just go right back up. She also said that cryo levels can flucuate up & down, just like the viral loads do. She is currently treating three other patients with cryoglobulemia and very knowledgeable.
When all is said & done, I choose to believe the cryo is gone for good. And my next PCR will be zero, as well! ((((( Sue)))))
PS- what % of cryos do you have? Just curious. There are several people on Janis & friends that you will find with cryo. Docs say that it's not very common, but I just think that most hep docs don't test for it, so that is why it's considered rare. I think it's a bit more common than most think.
Good luck on your tx journey. Keep us posted
Thank you for putting me in your prayers. I do appreciate it. I need all the prayers I can get right now. 24 weeks is right around the corner. But I know I will make it!
I've always seen the glass half full and always have a sense of hunor about things. I enjoy life and laugh a lot, even on tx. I am glad that I can help the newbies and at least encourage them to consider the tx ( if it is needed )
I think that most people do shy away from considering the tx because they hear so many bad stories.
I try to focus on all the good that has come from having Hep C. It has really been the silver lining in this whole journey. Many people at my church are being touched & encouraged by my testimony. Thanks again, Chevygal. God Bless, Sue
I've always seen the glass half full and always have a sense of hunor about things. I enjoy life and laugh a lot, even on tx. I am glad that I can help the newbies and at least encourage them to consider the tx ( if it is needed )
I think that most people do shy away from considering the tx because they hear so many bad stories.
I try to focus on all the good that has come from having Hep C. It has really been the silver lining in this whole journey. Many people at my church are being touched & encouraged by my testimony. Thanks again, Chevygal. God Bless, Sue
Scruffy and Friole thanks for the encouragement. I appreciate all the positive thoughts & well wishes. I have had HCV probably 25-27 years. I have stage 0/1 damage. But, I developed cryoglobulemia and it has done a lot of damage to my blood vessels. I recently had my eyes checked and the opthomologist said I have some small infractions ( scarring behind my eye) from loss of blood flow through some of the vessels in there.
My ankles & legs are a mess. There's been ongoing damage there for years.( neuropathy, pain, swelling and purple ankles ) Just recently, I developed Raynauld's syndrone because of the cryo. If it weren't for the cryo, I would wait to tx. But things were getting really bad. Thanks again for your well wishes. I will beat this thing.
Veggiedip, having a positive attitude does help and of course being close to God is the main reason I am able to go through this. I wanted to share my experience because so many times, I think people are scared off of starting tx because they only hear the horror stories. Sure my tx hasn't been a picnic, had some very bad days, needed Procrit at week # 3, but as I said it is very doable and I am going to be putting this all behind me very soon.
Cigaso, you are so right, having a strong relationship with our Creator certainly goes a long way during tx. HE is the main reason I able to get up every morning, even on those days where my legs won't work for me, I still push through the pain and somehow get to the next shot. One shot at a time. God is good and He's given me much Grace in this battle.
HepCinLA, I was thinking of you when I posted my tx experience. I can only imagine how you feel having small children. Mine are 10 & almost 12 now, so they can fend for themselves when I am down. But you know, you might not even have any side effects. I have come across some people that have nothing more than a headache & fatigue all during tx. ( unusual, but possible )
I can't remember the status of your liver, but if you have no damage, you certainly can wait to tx. I say if you are a geno 2 or 3 just go for it, regardless of your biopsy results.
One more thing, something that really helped me in my decision to start tx > My nurse told me that I should just try the tx. If it gets too unbearable and the sides are horrific, then I can choose to stop the tx at any time.
So remember, just because you decide to treat, doesn't mean you are locked into finishing. Some people can not function ( literally ) and have to quit tx. But that is very rare. Most people are like me. It's hard at the start, but then things settle down and you just get through it. I take it one shot at a time and it's hard to believe I am into week # 20. Good luck in your decision. Hope this helps.
(((((( Sue ))))))
My ankles & legs are a mess. There's been ongoing damage there for years.( neuropathy, pain, swelling and purple ankles ) Just recently, I developed Raynauld's syndrone because of the cryo. If it weren't for the cryo, I would wait to tx. But things were getting really bad. Thanks again for your well wishes. I will beat this thing.
Veggiedip, having a positive attitude does help and of course being close to God is the main reason I am able to go through this. I wanted to share my experience because so many times, I think people are scared off of starting tx because they only hear the horror stories. Sure my tx hasn't been a picnic, had some very bad days, needed Procrit at week # 3, but as I said it is very doable and I am going to be putting this all behind me very soon.
Cigaso, you are so right, having a strong relationship with our Creator certainly goes a long way during tx. HE is the main reason I able to get up every morning, even on those days where my legs won't work for me, I still push through the pain and somehow get to the next shot. One shot at a time. God is good and He's given me much Grace in this battle.
HepCinLA, I was thinking of you when I posted my tx experience. I can only imagine how you feel having small children. Mine are 10 & almost 12 now, so they can fend for themselves when I am down. But you know, you might not even have any side effects. I have come across some people that have nothing more than a headache & fatigue all during tx. ( unusual, but possible )
I can't remember the status of your liver, but if you have no damage, you certainly can wait to tx. I say if you are a geno 2 or 3 just go for it, regardless of your biopsy results.
One more thing, something that really helped me in my decision to start tx > My nurse told me that I should just try the tx. If it gets too unbearable and the sides are horrific, then I can choose to stop the tx at any time.
So remember, just because you decide to treat, doesn't mean you are locked into finishing. Some people can not function ( literally ) and have to quit tx. But that is very rare. Most people are like me. It's hard at the start, but then things settle down and you just get through it. I take it one shot at a time and it's hard to believe I am into week # 20. Good luck in your decision. Hope this helps.
(((((( Sue ))))))
I wish you the best results. You have been going through some tuff stuff. Hang in there. I'll be watching for you ubdetectable post! Gotta run I am late for work.LL
Sue, Thanks so much for posting. I am thinking of treating and have signed up for a study. I'm really scared b/c I have two small children and am worried about sides; however, your post was encouraging. I'm now viewing my treatment as short term pain vs. long term gain. Congratulations on your bloodwork to date and please keep us all posted on your progress.
Blessings to you on the test, I will be praying for you. You have such a wonderful attitude and are an encouragement to us all. I found the tx (just finished up 24 wks) was really doable despite the "bad days" and it was so less scary in reality than I pegged it out to be before I started.
What a great encouraging post!...not only for newbies considering treatment but also those going through it. I was so happy to read your cryo is in remission!! Wonderful....that is 3/4 of your battle and the cause of so many of your problems pre-treatment. Now that Hep C's days are numbered for sure!
I didn't realize you and I started treatment so close to one another. I am at week 22/48. I too had to start Procrit at week 3 as I became very dangerously anemic very quickly. Your attitude is wonderful as so many above have stated...I KNOW this pos attitude is what is also getting me through the rough days when they come. (and excercise) People say to me.."how do you keep so postitive?"....and the answer is easy....THIS IS WORKING! I'm not afraid any longer....and to all those considering treatment but are frightened: I too agree that the fear of doing tx was far worse than what I've experienced so far. I was a nervous wreck before starting and now I look back over the past 22 weeks and realize it has been very DOABLE....yes, there are lousy days...but you get through them...and then the sun comes out again and you feel good...nothing last too long for me.(except fatigue). Sue, congratulations again on your continued success and we ALL look forward to getting your 20 week PCR results....You are an inspiration to many here. Thanks for helping others in their search to tx or not.
Scott
I didn't realize you and I started treatment so close to one another. I am at week 22/48. I too had to start Procrit at week 3 as I became very dangerously anemic very quickly. Your attitude is wonderful as so many above have stated...I KNOW this pos attitude is what is also getting me through the rough days when they come. (and excercise) People say to me.."how do you keep so postitive?"....and the answer is easy....THIS IS WORKING! I'm not afraid any longer....and to all those considering treatment but are frightened: I too agree that the fear of doing tx was far worse than what I've experienced so far. I was a nervous wreck before starting and now I look back over the past 22 weeks and realize it has been very DOABLE....yes, there are lousy days...but you get through them...and then the sun comes out again and you feel good...nothing last too long for me.(except fatigue). Sue, congratulations again on your continued success and we ALL look forward to getting your 20 week PCR results....You are an inspiration to many here. Thanks for helping others in their search to tx or not.
Scott
I think many of us ask why or why me? We may never know. But it does give some of us a chance to slow down and see what is really important. Having a stronger relationship with the Lord is definitely a huge help in tx. I also find this story helpful when I feel lousy.
I went to my family doctor about 20 years ago. This Doctor was great. He had been practicing medicine for over 40 years in Boston. He seemed to have seen everything. I asked the Doctor, "why do I have this ailment(not HCV something else)?" He said, "stop worrying you could always have something a lot worse!"
Glad to hear your sx's are very manageable.
I went to my family doctor about 20 years ago. This Doctor was great. He had been practicing medicine for over 40 years in Boston. He seemed to have seen everything. I asked the Doctor, "why do I have this ailment(not HCV something else)?" He said, "stop worrying you could always have something a lot worse!"
Glad to hear your sx's are very manageable.
Hi Su, thanks for that very inspiring thread....
It's so nice to hear something "positive" and helpful on here...It seems whenever I get on here lately it is mostly negative and scary...
I am very new to all this and I really wish I had read your message right from the start, it would of saved me a lot of sleepless and worrisome nights...
Best of luck to you ... I admire your attitude...
Beth
It's so nice to hear something "positive" and helpful on here...It seems whenever I get on here lately it is mostly negative and scary...
I am very new to all this and I really wish I had read your message right from the start, it would of saved me a lot of sleepless and worrisome nights...
Best of luck to you ... I admire your attitude...
Beth
Sounds VERY promising. AND it is encouraging for those of us who have not made the decision yet to know that the TX can be not so bad. Thanks for sharing. What was the state of your liver?
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