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Hi all, new member
HI all,
Im a new member, just saying hello-
Ive was diagnosed with having Hep-C (and had Hep-B but gone now) - I got it around 1999-2000 so ive had it about 10 years - im into week 38 of my Riba/INF treatment of which ive only been on 800mg since very early on (week 8) due to Anemia - I had a shaky start in the first 3-5 weeks, I have Genotype 1a and my Viral load was 3.8million before TX , 20,000 at week 4 , <15 at week 12 , UND at week 16 and UND at week 24.
I asked if I could extend to 72 weeks but my GP wouldn't let me which I was disappointed about (but also pleased I could also finish soon) his reason was that my week 12 result was tinkering on edge of UND and therefore didnt warrant the extra treatment - they are allowing me to extend to 52 weeks but that was arranged before due to shaky start - which I will do....
My ALT was 95 pre-tx and Liver Biopsy in 2006 showed Fib-2 / Inflamation-7 but then I was drinking and trying to blot out / ignore the problem - I stopped when i got the Biopsy result then 2 years later just before I started TX my Fibroscan was 3.3 - which is excellent and Ultrasound was normal - my ALT fluctuated early on but after getting UND at week 16 it steadily dropped from 70's to 55 and has stayed there for past 3 months which is just slightly raised and also another reason for my 72 weeks, but again I wasn't allowed...
I live in UK with my Partner who is clear and she works as a Mental-Health-Nurse at a Adolescence Psychiatric Ward and has really helped me turn my life around...
well thats all about me - look forward to posting on the forums...
Im a new member, just saying hello-
Ive was diagnosed with having Hep-C (and had Hep-B but gone now) - I got it around 1999-2000 so ive had it about 10 years - im into week 38 of my Riba/INF treatment of which ive only been on 800mg since very early on (week 8) due to Anemia - I had a shaky start in the first 3-5 weeks, I have Genotype 1a and my Viral load was 3.8million before TX , 20,000 at week 4 , <15 at week 12 , UND at week 16 and UND at week 24.
I asked if I could extend to 72 weeks but my GP wouldn't let me which I was disappointed about (but also pleased I could also finish soon) his reason was that my week 12 result was tinkering on edge of UND and therefore didnt warrant the extra treatment - they are allowing me to extend to 52 weeks but that was arranged before due to shaky start - which I will do....
My ALT was 95 pre-tx and Liver Biopsy in 2006 showed Fib-2 / Inflamation-7 but then I was drinking and trying to blot out / ignore the problem - I stopped when i got the Biopsy result then 2 years later just before I started TX my Fibroscan was 3.3 - which is excellent and Ultrasound was normal - my ALT fluctuated early on but after getting UND at week 16 it steadily dropped from 70's to 55 and has stayed there for past 3 months which is just slightly raised and also another reason for my 72 weeks, but again I wasn't allowed...
I live in UK with my Partner who is clear and she works as a Mental-Health-Nurse at a Adolescence Psychiatric Ward and has really helped me turn my life around...
well thats all about me - look forward to posting on the forums...
yeah im seeing the DR in just over 2 weeks about extending (again - last time he said no) but this time the nurse has mentioned it to him and i hoping he's gunna change his mind if he see's that Iam up to it (which Iam)
so fingers crossed
I managed to get UND on 800mg Riba but as you know its not good - it caused me to be a late responder
I think if they allow 72 weeks my nurse is gunna give me procrit for the remainder
so fingers crossed
I managed to get UND on 800mg Riba but as you know its not good - it caused me to be a late responder
I think if they allow 72 weeks my nurse is gunna give me procrit for the remainder
So anything new from the dr's on how long you will treat?
I think frijole was very direct about your week 4 numbers, and I agree, 20,000 is not good. Hopefully you'll be able to get the riba increased, get some rescue meds and continue on.
I know the thought of 72 weeks is hard, but relapsing is worse, I'm sure.
And I was not strong or brave during tx. I shouldn't preach to others since I quit early. But I was extremely fortunate in being und early on and geno type 2.
Good luck! Welcome!
Bug
I think frijole was very direct about your week 4 numbers, and I agree, 20,000 is not good. Hopefully you'll be able to get the riba increased, get some rescue meds and continue on.
I know the thought of 72 weeks is hard, but relapsing is worse, I'm sure.
And I was not strong or brave during tx. I shouldn't preach to others since I quit early. But I was extremely fortunate in being und early on and geno type 2.
Good luck! Welcome!
Bug
Like the moniker.
Welcome to the forum. I read your numbers and my heart zings. I was 2820 at week 4 and 40 at week 12. I started out with a viral load similar to yours (if you are speaking in copies). I too talked my doctor into extending but didn't think I needed the 72. I figured 36 weeks after my first undetectable PCR by a very low test and that was week 20, so I treated for 56 weeks.
I relapsed.
Your week 4 numbers were not good. I would push for the 72 if I were you. You may have been almost there at week 12 but that only counts in horseshoes.
I guess you are not on any epogen for the anemia. Shame. The full dose ribavirin may do the job. Good luck to you.
frijole
Welcome to the forum. I read your numbers and my heart zings. I was 2820 at week 4 and 40 at week 12. I started out with a viral load similar to yours (if you are speaking in copies). I too talked my doctor into extending but didn't think I needed the 72. I figured 36 weeks after my first undetectable PCR by a very low test and that was week 20, so I treated for 56 weeks.
I relapsed.
Your week 4 numbers were not good. I would push for the 72 if I were you. You may have been almost there at week 12 but that only counts in horseshoes.
I guess you are not on any epogen for the anemia. Shame. The full dose ribavirin may do the job. Good luck to you.
frijole
Hello and wanted to let you know the people on here are amazing with their knowledge and their giving hearts.Where do you get better care ? You can't.Welcome and do keep us posted. Tammy
Wanted to say welcome to the forum. I like your peace sign. Sure brings back the good old days.
The very best of luck with your tx. WIsh you welll.
Keep us posted.
Charm
The very best of luck with your tx. WIsh you welll.
Keep us posted.
Charm
Welcome. You'll find lots of empathetic people here.
Good luck with your treatment
OH
Good luck with your treatment
OH
Snadge all the best with that. Please let me know how you get on with it all......
take care
Lindax
take care
Lindax
thanks
ive been to hospital today and the nurse is gunna try and sway the GP to let me do 72 weeks AND put me on rescue drugs for the reamainder.... so thats a plus
cheers
ive been to hospital today and the nurse is gunna try and sway the GP to let me do 72 weeks AND put me on rescue drugs for the reamainder.... so thats a plus
cheers
Greetings and welcome! I'm one week behind you in tx but going for the 72 (Dr's recommendation due to advanced liver disease) Half way there!
Best of luck on getting through the last weeks and fingers crossed for that all important SVR!
Pam
Best of luck on getting through the last weeks and fingers crossed for that all important SVR!
Pam
Welcome Snadge, you've hit gold here ;)
I was dx'd, bx'd and started tx all in a few mths time. It was a whirl wind and everyone here helped me thru every bit of it. More than any Dr. or nurse ever could have. You sound like you have great support at home also, but only those ON these drugs can relate totally. It can be a strain for any partner to deal with 'us' on tx.
While most would suggest you do that 72 wk. extension, it sounds like your Dr. has some valid reasons, and as you started out rough. 800 mg Riba is low for Geno 1's, so thats a red flag on how you'd tolerate the drugs. Do they give 'rescue drugs' in your treatment? Someone here will correct me if I am wrong but many try those before reducing Riba. Just pointing out some things here, seems like your pretty up on your tx.
Anything you need to know, any questions, you'll find here. A wealth of information and knowledge and advice here. And a HUGE wealth of support here.
Good luck in your next 14 wks. Seems like you've done well in the first 38!
LL
I was dx'd, bx'd and started tx all in a few mths time. It was a whirl wind and everyone here helped me thru every bit of it. More than any Dr. or nurse ever could have. You sound like you have great support at home also, but only those ON these drugs can relate totally. It can be a strain for any partner to deal with 'us' on tx.
While most would suggest you do that 72 wk. extension, it sounds like your Dr. has some valid reasons, and as you started out rough. 800 mg Riba is low for Geno 1's, so thats a red flag on how you'd tolerate the drugs. Do they give 'rescue drugs' in your treatment? Someone here will correct me if I am wrong but many try those before reducing Riba. Just pointing out some things here, seems like your pretty up on your tx.
Anything you need to know, any questions, you'll find here. A wealth of information and knowledge and advice here. And a HUGE wealth of support here.
Good luck in your next 14 wks. Seems like you've done well in the first 38!
LL
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