Good luck with your 12 wk post treatment viral load test, I don`t think you need to be worried though after you`ve responded so well!
My mother had alzheimer`s too when in the last years of her life, and I sympathise with what you`ve been going through with your father-in-law, it is indeed tragic to see a family member affected with such a distressing disease.
I`m sure you have better days ahead of you, and we`re looking forward to celebrating your SVR very soon!
wmlj1960 said
May 2, 2016
justvlm wrote:
I'll be back with happy news next week.
Yes you will and we'll have our shined-up shoes on and I'll be asking for a dance.
Linuxter said
May 2, 2016
Hi Vanessa,
Wonderful to hear from you, it's been a while now ...
Congrats on taking the EOT+12 test(s) ... I'm not too far behind you, my EOT+12 will be in July.
You finally got there ... Congrats!
Keep us posted on your labs and not to worry, you are SVR and we both know it ... LOL
Talk to ya soon,
Dave
justvlm said
May 2, 2016
Hello warriors. I've been away due to job and dealing with an elderly alzheimer's father-in-law. Such a tragedy. Update on me... Submitted the post 12 week test today. I had put this on the back burner, with silent prayers that my 4.week test of NOT DETECTED will prove true at this milestone. I'll be back with happy news next week.
wmlj1960 said
Dec 29, 2015
No more need to worry. You are rolling. Keep up the good work Vanessa!
Tig said
Dec 29, 2015
Hi Vanessa,
WOOHOO!! That's great news, congratulations! I hear your Dragon is headed for the hills, especially after this. Keep moving forward, hydrate and stay positive. It's looking very good to me.
I hope you got some relief after the Riba reduction. Have you any current labs? You should have some good improvements in addition to the undetected. Thanks for sharing!
The heart pounding episodes sound scary. I had my riba reduced when I was on it as mine went below ten. I remember well being anemic, tired and out of breath. RIBA is an add on for these new treatments and not a huge player in SVR results, so I'd not worry too much. Your still taking enough To handle the strays, and if your hg comes back up, you can increase again.
justvlm said
Dec 10, 2015
Pharmacy called with my refill information. The ribavirin my last rx has is being discontinued and I'll receive ribasphere, same medicine but will look different. My OCD is going to go in overtime is this keeps up. LOL
justvlm said
Dec 10, 2015
Thanks, Scruffy. I did tell them the sx were not unbearable. I didn't want to make too much noise as I really feel good about this team.... Had a few over the years - not so much.
And hey, I was the one resisting riba since the Sovaldi / Riba tx came out. Determined to wait for the magic one pill. Here I am freaking out on the reduction...LOL.
As dear husband would say ' Women - Go figure'.
So, I'll keep this thread updated for future information.
justvlm said
Dec 10, 2015
Thanks Tig. I did press a little on maybe just dropping to 800 riba, but she stuck to " no worries, we'll reevaluate after the next labs.
Scruffy said
Dec 10, 2015
Hi Justvlm
While your hb still looks good your Doc is probably looking at the drop along with your complaints after taking your riba. All to common side effects of the riba. With the old tx's a riba drop was a worry for us but with the new drugs it doesn't seem to play as much. Don't sweat it Doc knows best :)
Best wishes
wmlj1960 said
Dec 10, 2015
"due to significant drop in some Hgb".
Maybe your doctor is looking at the rate of drop more than at the present level.
When I was taking Sofosbuvir / riba 1000mg for 24 wks last year my Hgb got down to 7.9 g/dl with no reduction in riba dosage nor addition of Procrit ordered by my hepatologist. It didn't seem doable some days but I survived. You will too. Hang in there Vanessa.
EDIT: deleted redundant information question.
-- Edited by wmlj1960 on Friday 11th of December 2015 02:17:26 AM
Tig said
Dec 10, 2015
Hi Vanessa,
I remember the fatigue and shortness of breath all too well. Unfortunately it's part of the whole process and it requires real effort some days to just get through it. Ribavirin causes the anemia you speak of and while there are signs that you're heading that way, it's not too bad yet.
Your results are still pretty good in my opinion. The increase in platelets is good, and the decrease in Hgb, Hct and RBC is expected while on Ribavirin. We used to strive to stay on 80% of the original dose of Ribavirin throughout treatment, which would be 800 mg in your case. They often reduce the Riba dose for low Hgb, but usually not until it dropped below 10. Mine dropped to 9 and they kept me on 1200mg for 28 weeks. It wasn't easy, but doable. You might discuss this with your healthcare team and see what their thought is on this. I would want to be on the largest dose I could safely tolerate.
justvlm said
Dec 10, 2015
Hello all,
Doctor's NP called yesterday with 2 week CBC. They are are a GI office, but consult with a Hep doctor when needed. Based on my pre-tx and 2 week labs they had me reduce my Riba from 1000 / day to 600 / per day due to significant drop in some Hgb, while not anemic - she wants to get ahead of this. We talked about the infrequent tight chest, heart pounding episodes after the evening Riba (almost exactly 4 hrs later) and I am getting very out-of-breath. So now I'm only taking the 1) Sovaldi and 3) 200 m Riba in the mornings. NP said this would not affect my tx or SVR.
I'm wondering if anyone has seen this before? I know the treatment is relatively new, but..... this kind of freaks me out so soon into tx.
Hello Vanessa, good to hear from you again.
Good luck with your 12 wk post treatment viral load test, I don`t think you need to be worried though after you`ve responded so well!
My mother had alzheimer`s too when in the last years of her life, and I sympathise with what you`ve been going through with your father-in-law, it is indeed tragic to see a family member affected with such a distressing disease.
I`m sure you have better days ahead of you, and we`re looking forward to celebrating your SVR very soon!
Yes you will and we'll have our shined-up shoes on and I'll be asking for a dance.
Hi Vanessa,
Wonderful to hear from you, it's been a while now ...
Congrats on taking the EOT+12 test(s) ... I'm not too far behind you, my EOT+12 will be in July.
You finally got there ... Congrats!
Keep us posted on your labs and not to worry, you are SVR and we both know it ... LOL
Talk to ya soon,
Dave
Hello warriors. I've been away due to job and dealing with an elderly alzheimer's father-in-law. Such a tragedy. Update on me... Submitted the post 12 week test today. I had put this on the back burner, with silent prayers that my 4.week test of NOT DETECTED will prove true at this milestone. I'll be back with happy news next week.
No more need to worry. You are rolling. Keep up the good work Vanessa!
Hi Vanessa,
WOOHOO!! That's great news, congratulations! I hear your Dragon is headed for the hills, especially after this. Keep moving forward, hydrate and stay positive. It's looking very good to me.
I hope you got some relief after the Riba reduction. Have you any current labs? You should have some good improvements in addition to the undetected. Thanks for sharing!
I am virtually speechless....
4 week PCR...... NOT DETECTED ! !
I was so worried with the early Riba reduction.
Thanks for all the support here.
The heart pounding episodes sound scary. I had my riba reduced when I was on it as mine went below ten. I remember well being anemic, tired and out of breath. RIBA is an add on for these new treatments and not a huge player in SVR results, so I'd not worry too much. Your still taking enough To handle the strays, and if your hg comes back up, you can increase again.
Pharmacy called with my refill information. The ribavirin my last rx has is being discontinued and I'll receive ribasphere, same medicine but will look different. My OCD is going to go in overtime is this keeps up. LOL
Thanks, Scruffy. I did tell them the sx were not unbearable. I didn't want to make too much noise as I really feel good about this team.... Had a few over the years - not so much.
And hey, I was the one resisting riba since the Sovaldi / Riba tx came out. Determined to wait for the magic one pill. Here I am freaking out on the reduction...LOL.
As dear husband would say ' Women - Go figure'.
So, I'll keep this thread updated for future information.
Thanks Tig. I did press a little on maybe just dropping to 800 riba, but she stuck to " no worries, we'll reevaluate after the next labs.
Hi Justvlm
While your hb still looks good your Doc is probably looking at the drop along with your complaints after taking your riba. All to common side effects of the riba. With the old tx's a riba drop was a worry for us but with the new drugs it doesn't seem to play as much. Don't sweat it Doc knows best :)
Best wishes
"due to significant drop in some Hgb".
Maybe your doctor is looking at the rate of drop more than at the present level.
When I was taking Sofosbuvir / riba 1000mg for 24 wks last year my Hgb got down to 7.9 g/dl with no reduction in riba dosage nor addition of Procrit ordered by my hepatologist. It didn't seem doable some days but I survived. You will too. Hang in there Vanessa.
EDIT: deleted redundant information question.
-- Edited by wmlj1960 on Friday 11th of December 2015 02:17:26 AM
Hi Vanessa,
I remember the fatigue and shortness of breath all too well. Unfortunately it's part of the whole process and it requires real effort some days to just get through it. Ribavirin causes the anemia you speak of and while there are signs that you're heading that way, it's not too bad yet.
Your results are still pretty good in my opinion. The increase in platelets is good, and the decrease in Hgb, Hct and RBC is expected while on Ribavirin. We used to strive to stay on 80% of the original dose of Ribavirin throughout treatment, which would be 800 mg in your case. They often reduce the Riba dose for low Hgb, but usually not until it dropped below 10. Mine dropped to 9 and they kept me on 1200mg for 28 weeks. It wasn't easy, but doable. You might discuss this with your healthcare team and see what their thought is on this. I would want to be on the largest dose I could safely tolerate.
Hello all,
Doctor's NP called yesterday with 2 week CBC. They are are a GI office, but consult with a Hep doctor when needed. Based on my pre-tx and 2 week labs they had me reduce my Riba from 1000 / day to 600 / per day due to significant drop in some Hgb, while not anemic - she wants to get ahead of this. We talked about the infrequent tight chest, heart pounding episodes after the evening Riba (almost exactly 4 hrs later) and I am getting very out-of-breath. So now I'm only taking the 1) Sovaldi and 3) 200 m Riba in the mornings. NP said this would not affect my tx or SVR.
I'm wondering if anyone has seen this before? I know the treatment is relatively new, but..... this kind of freaks me out so soon into tx.
Labs 9/8/15 vs 12/9/15. Begin tx 11/20/15.
Platelet: 227 / 297 (up is good?)
RBC: 4.37 / 3.44
WBC: 9.5 / 11.7
Hgb: 14.4 / 11.5
Hematocrit: 43.7 / 34.7