Aa
1 month relapse post tx
I just completed 48 wks of pegintron / rebatol and was nondetectable since week 12 of tx. I did not miss a dose and I do not drink, quit smoking 2 years ago and do not do drugs. I am geno 1b. I have relapsed my doc wants me to regain my strength as tx was very very hard on me and go see him on March 31st and do another viral load then. I understand sometimes 2nd round of tx can be a charm but in shock I do not know what to do or if I can stand another round I am a positive person and just need some advise. When do they normally start round etc. in advance thank you. New to this forum but not to hep c. Hope to make new friends.
Lola...maybe I'm offbase here, but 800mg of Rebetol for 155lbs seems low. I'm about same or slightly heavier than you and I've been prescribed 1400mg a day which is a little high but still quite a gap between what you've got and what I've got. I haven't started yet, btw...long story. but anyway, that's my prescribed dosage.
Again, I would get that second opinion Jim is talking about. I'm sorry you have to go through this.
Trish
Again, I would get that second opinion Jim is talking about. I'm sorry you have to go through this.
Trish
Did your doctor at shands give you any indication on what your chances are for svr this time around with extended treatment and has he had good success with other patients relapsing and then extending? Also were your lft numbers all normal during your first round? Hope your doing well?
Thank you so much iwill pray for you to do well at the end of your tx. I think it hit me hard cause in my mind my hope was skyrocketed and then my first viral load 1 month after tx it was back quess I was concentrating so hard on getting well at no cost it never occurred to me it would show its ugly face again. Good luck.
Lola
Lola
I am sorry to hear of your relapse and as a 1b my self this is very discouraging. I hope you will have a better outcome from peg and Riba if this is the route you take. But first, heal the body and enjoy life for awhile before deciding to retreat, you’ve been through a lot.
jasper
jasper
Dont mind at all my rebetol was weight based rebetol I took 800 mgs a day 2 in the am and 2 in pm. Ugly little medicine isn't it. Pegintron I would draw out 7 of the mixing solution put in the powder medicine vial then draw 5 to be injected. When i started tx I weighed 155 pounds gained due to quit smoking lol. At end of tx I weigh 118 pounds. You are right Jims advice was good got alot to think about.
Lola
Lola
I'm a geno 1a relapser and I am on my second round of treatment. I have advanced disease (Stage 3, Grade 3-4, bridging fibrosis and 50% necrosis). I had thought long and hard about what I would do if I had relapsed after my first round. I had made my mind up that I would give my body a 6 month recovery period and then get right back on the juice. Unfortunately I wound up with rheumatoid arthritis from the first round so I had a bit of delay getting back on. I was still back on treatment within 7 months of finishing my first round.
I was seen at a major teaching/research hospital (Dr. Nelson at Shands at the University of Florida) and they were of the opinion that I was not in a good position to "wait" because of my liver damage and aggressive treatment was my best recourse.
Anyway, that's just my story.
Mouse
I was seen at a major teaching/research hospital (Dr. Nelson at Shands at the University of Florida) and they were of the opinion that I was not in a good position to "wait" because of my liver damage and aggressive treatment was my best recourse.
Anyway, that's just my story.
Mouse
Lola, I'm so sorry to know of your relapse. I can only imagine how hard this is on you to get to this point in treatment and get this sort of news. I think Jim gives you good advice, as usual. I hope things work out for you as you continue to investigate your options.
I do have a question...I'm wondering if your Rebetol was weight-based and what your daily dosage was, if you don't mind me asking?
I do have a question...I'm wondering if your Rebetol was weight-based and what your daily dosage was, if you don't mind me asking?
I'm so sorry to hear your news. You must be devastated. I don't know much about retreatment except that you are a definite candidate because of your responder status. I know that some people on this forum have had success with retreatment, so I'm sure they will pipe up if they are around.
I'm a relative newbie too, I've only been around this forum since I started tx in early oct. I was und at 10 weeks and because of this forum I know that if I relapse, I will be able to try again ( I will of course be crushed).
If I relapse I'm going to look into retreating with SOC (standard of care, i.e pegasys or pegintron with ribavirin) WITH Alinia. I will also start taking PPC from the beginning ( I just started taking it ).
Stick around, you'll find this forum incredibly informative!
I'm a relative newbie too, I've only been around this forum since I started tx in early oct. I was und at 10 weeks and because of this forum I know that if I relapse, I will be able to try again ( I will of course be crushed).
If I relapse I'm going to look into retreating with SOC (standard of care, i.e pegasys or pegintron with ribavirin) WITH Alinia. I will also start taking PPC from the beginning ( I just started taking it ).
Stick around, you'll find this forum incredibly informative!
Very sorry about your relapse, geno 1's still only give 50-50 odds with SOC drugs.
Moving forward, first you want to decide whether to treat right away or perhaps wait for newer drugs or perhaps even enter a trial like Telaprevir for previous non-responders.
A lot will depend on how much liver damage you have (time to wait or not), how you handled side effects during tx, as well as an analysis of what actually went wrong last time as best as can be done.
You mentioned you took all the drugs as required, but were you on the correct doses, when did you become UND, how often did they test viral load, did your treatment team do all they could for you? Perhaps, you want a second opinion at this time to allow a new and objective medical team review your entire history and offer their recommendations. If you go this route, you would want to see a liver specialist (hepatologist).
-- Jim
Moving forward, first you want to decide whether to treat right away or perhaps wait for newer drugs or perhaps even enter a trial like Telaprevir for previous non-responders.
A lot will depend on how much liver damage you have (time to wait or not), how you handled side effects during tx, as well as an analysis of what actually went wrong last time as best as can be done.
You mentioned you took all the drugs as required, but were you on the correct doses, when did you become UND, how often did they test viral load, did your treatment team do all they could for you? Perhaps, you want a second opinion at this time to allow a new and objective medical team review your entire history and offer their recommendations. If you go this route, you would want to see a liver specialist (hepatologist).
-- Jim
Thanks for your encouragement. Where at in katrina country I am in Slidell we are somewhat coming back but still some messed up areas. Luv to all of you.
lola
lola
even if you have advanced liver damage i would wait for new drugs.
this is my personal opinion and i am not a doctor. odds of success go down quite a bit for multiple tries. you bought yourself some time with this 48 week treatment.
wait for the upcoming vertex phase 3 drug trial or fda release of new drugs.
this is my personal opinion and i am not a doctor. odds of success go down quite a bit for multiple tries. you bought yourself some time with this 48 week treatment.
wait for the upcoming vertex phase 3 drug trial or fda release of new drugs.
Thank you so much for your kind words I will pray you only have to this once. If you ever have questions about tx I am here for you I had many side effects and really bad ones it is always helpful relating to peopl;e who understand.
lola
lola
welcome, i too am from katrina country, sorry about the relapse, i know the stress about hep c and katrina. i continued tx and did 96 wks without stopping. svr now, i tolerated the meds pretty well. dont give up you were und at week 12 and u will be und again, maybe u just needed to tx a little longer. good luck and let me know how it goes.
SO sorry to hear that. Sorry to have no info on second round, I'm a geno 1a doing tx for the first (please God for the only) time. But you have found a good place, and lots of folks here can give you good information, laughs, sympathy and a shoulder to cry on.
For now, just do what it takes to get stronger, you've been thru hell. Be gentle with yourself.
jd
For now, just do what it takes to get stronger, you've been thru hell. Be gentle with yourself.
jd
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