Aa
TX just stopped working?
I was on tx for 6 days taking shots every day prior to a blood test in which viral load went down from 800,000 to 8,000. I then got a call from the doctor to stop taking tx immediately due to low platelets and rbc. I was put on Nupogin once a week shot and procrit once a week shot. I was off treatment for 4 weeks and went back up to 98,000 which is where I was when I started tx again. After 6 weeks of every day shot back on treatment my labs came back saying I was actually at 100,000. How could I actually go up when I was responding so well initially? I still take the nupogin and procrit once a week each while on tx. Are the meds not reacting well together? Am I doing something wrong?
I guess it's more like 23 or 24 weeks of treatment so far, including the suspension and waiting for the PCR results (sorry about the earlier miscount).
You didn't get a two log drop at week 12 and actually went up from week 8 to week 12.
So the question is, what does your doctor say? Stop treatment? Continue? Week 24 is a benchmark decision time.
Now that you're coming up to week 24 on a winding path, is it time to rethink and regroup?
I don't know anything about 'maintenance dose' (I'm not even sure if it's GAAP, generally accepted treating practice) but maybe others do.
It sure makes it very important to be in the hands of a great doc to plan your next move.
Many members on this board empathize with your situation first-hand. Like you, they have not responded to the meds the first time or even many times around. If the meds let you down, it's the inadequacy of the meds.
The answer for you may lie in the new adjunct drugs called protease and polymerase inhibitors, set to be released in 2010 or 2011.
Here's an interesting old thread started by MKAndrew that you may want to look at:
http://www.medhelp.org/posts/Hepatitis-C/SOCS3-Gene-Insulin-Resistance--IFN-resistance/show/677145?personal_page_id=40169&post_id=post_3625488
You didn't get a two log drop at week 12 and actually went up from week 8 to week 12.
So the question is, what does your doctor say? Stop treatment? Continue? Week 24 is a benchmark decision time.
Now that you're coming up to week 24 on a winding path, is it time to rethink and regroup?
I don't know anything about 'maintenance dose' (I'm not even sure if it's GAAP, generally accepted treating practice) but maybe others do.
It sure makes it very important to be in the hands of a great doc to plan your next move.
Many members on this board empathize with your situation first-hand. Like you, they have not responded to the meds the first time or even many times around. If the meds let you down, it's the inadequacy of the meds.
The answer for you may lie in the new adjunct drugs called protease and polymerase inhibitors, set to be released in 2010 or 2011.
Here's an interesting old thread started by MKAndrew that you may want to look at:
http://www.medhelp.org/posts/Hepatitis-C/SOCS3-Gene-Insulin-Resistance--IFN-resistance/show/677145?personal_page_id=40169&post_id=post_3625488
nygirl - The way that was worded, I read it as you did. We are all just trying to help.
Sounds like you suspended meds at week 13, is that right? Are you in about week 33 now, including the four weeks off meds?
Several members here, some of whom are/were also stage four, had unusual and aggressive treatments, managed by specialists such as Dr. Gish. I can't remember exactly who, but possibly Willing, Proactive, Hector, Magnum, JennyPenny, justme53, MikeSimon and Bill.
Are you by any chance with CPMC? I believe Dr. Gish runs several locations and treats stage fours aggressively. I would have thought if you had breakthrough, though, you might be put on a 'maintenance' dose as a stage four but not continue on such a high dose, now that the numbers are in for week 33.
I'm sorry I don't know anything about this but I want to send you my best wishes and hope that people who know more will continue to lend you a hand. You've put in such a good fight so far. Please keep your spirits up.
Several members here, some of whom are/were also stage four, had unusual and aggressive treatments, managed by specialists such as Dr. Gish. I can't remember exactly who, but possibly Willing, Proactive, Hector, Magnum, JennyPenny, justme53, MikeSimon and Bill.
Are you by any chance with CPMC? I believe Dr. Gish runs several locations and treats stage fours aggressively. I would have thought if you had breakthrough, though, you might be put on a 'maintenance' dose as a stage four but not continue on such a high dose, now that the numbers are in for week 33.
I'm sorry I don't know anything about this but I want to send you my best wishes and hope that people who know more will continue to lend you a hand. You've put in such a good fight so far. Please keep your spirits up.
I was on one injection a week for 12 weeks and went down from 1M to 6000 but then jumped back up to about 100k when the doctor decided to put me on every day injections."
I dont think it was necessary to yell just because I found this entire post quite confusing and have repeatedly said so. What crawled up your hiney that you should be so superior today?
The last post I saw said the above and since I hadn't yet seen his latest post because we posted at the same time........I was responding to THAT. And still no need to yell about something like that sheesh.
I dont think it was necessary to yell just because I found this entire post quite confusing and have repeatedly said so. What crawled up your hiney that you should be so superior today?
The last post I saw said the above and since I hadn't yet seen his latest post because we posted at the same time........I was responding to THAT. And still no need to yell about something like that sheesh.
Read the info properly!
His viral load was already increasing before the switch to infergen and before the treatment was suspended.
His viral load was already increasing before the switch to infergen and before the treatment was suspended.
When interferon is introduced the virus mutates in order to survive.
You established a breakthrough pattern at week 12 with an increase in viral serum before you were switched to Infergen so it is not surprising that the subsequent treatment failed.
Your disease is quite resistant to interferon and it is highly unlikely that more of the same will do any good.
You should enquire about treating with a protease inhibitor added.
You established a breakthrough pattern at week 12 with an increase in viral serum before you were switched to Infergen so it is not surprising that the subsequent treatment failed.
Your disease is quite resistant to interferon and it is highly unlikely that more of the same will do any good.
You should enquire about treating with a protease inhibitor added.
As said earlier you must have developed an immunity to the meds when you stopped or the viral strain mutated and is now not being killed by the second round of treatment.
Stopping you for those 4 weeks was problem.
Stopping you for those 4 weeks was problem.
I started off on the Pegasys once a week and 1,200mg/day (600mg in morning and 600mg at night) of the ribivarin (I weigh about 190lbs). Viral Load at start was 450,000.
At Week 8, I was 6,000
At Week 12, I had gone up to 19,600.
At this point my doc decided to change my medication since I was not UND at week 12 and actually went up slightly. I then went on daily shots of Infergen at 15mcg/0.5ml a day and kept the ribivarin the same at 1,200mg/day.
6 days on the daily shots, I was down to 8,000. On day 7, the doc called and said my rbc and platelets were down significantly and it was dangerous to continue treatment and must temporarily stop. I went up nupogin and procrit once a week which I will continue for the remainder of the treatment but the doc did not want me to go back on until my levels went back up. I was off a total o 4 weeks.
When I started the infergen daily again I was at 98,000.
6 weeks later, I just got my results and am at 178,000. How could I have gone up?
98,000
178,000
At Week 8, I was 6,000
At Week 12, I had gone up to 19,600.
At this point my doc decided to change my medication since I was not UND at week 12 and actually went up slightly. I then went on daily shots of Infergen at 15mcg/0.5ml a day and kept the ribivarin the same at 1,200mg/day.
6 days on the daily shots, I was down to 8,000. On day 7, the doc called and said my rbc and platelets were down significantly and it was dangerous to continue treatment and must temporarily stop. I went up nupogin and procrit once a week which I will continue for the remainder of the treatment but the doc did not want me to go back on until my levels went back up. I was off a total o 4 weeks.
When I started the infergen daily again I was at 98,000.
6 weeks later, I just got my results and am at 178,000. How could I have gone up?
98,000
178,000
Did he give you Peg (meaning Pegasys or PegIntron) every day or did he change it to Infergen? Because if he gave you Peg daily then you better find another doctor.
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Hi. I'm sorry you are having so much trouble with treatment. My experience with viral load going up is this. I was in the original Intron A + Ribavirin trials. My viral load went from 1.6 million to 50,000, at 12 weeks. This wasn't even a 2 log drop but at the time no one was paying too much attention to log drops at 12 weeks. The trial ended and my doctor decided to take away the Intron A and put me on Infergen at 15mcg daily. Unfortunately, 12 weeks later my viral load had gone up to 60,000 and I didn't miss any injections. It is possible that you have built some resistance to the interferon. Some people actually get to undetected and then have the viral load come back before treatment ends. this is called breakthrough. I hope you can figure out what happened and get back on track. It is particularly difficult for us cirrhotic patients to clear although it certainly is not unheard of.
None of this sounds usual to me really - especially taking you off for 4 full weeks then putting you back on again.....if you were not UND by week 12 (as I was not) I was then UND at week 24 and I extended to week 72 but at no time did my doctor consider switching interferons and then stop me or anything. At week 12 with a VL in the thousands it seems like you might have later cleared and been ok....
With some of the blanks filled in it makes more sense now. At stage 4 the doc is trying everything to get to undetected with Infergen (I guess) given the fact that you did not get to undetected with Peg in the first 12 weeks. The gap of 4 weeks was unfortunate. My guess is that with stabilizing with Neup and Procrit you still have quite a way to go. Good luck.
Isn't it typical treatment that if you are not UND by 12 weeks that the doctor may become more aggressive with stage 4 patients which I am? I was responding to once a week but then I had gone up rather than down on my Week 12 test and VL still in the thousands so the doc put me on everyday shots instead. After 6 days on everyday shots my blood work showed low platelets and rbc where she suggested I stop till they come back and put me on the nupogin and procrit. Off 4 weeks, back on for 6 weeks daily injections and viral load has gone up slightly rather than down.
Which part of the treatment plan seems wrong?
Which part of the treatment plan seems wrong?
Yes something in here makes absolutely and totally no sense. I've never heard of someone who was responding to regular interferon to begin with get switched to daily infergen then back to regular interferon before.
Is this a reputable doctor who knows what he is doing something doesn't sound right at all.
Is this a reputable doctor who knows what he is doing something doesn't sound right at all.
If you were taking pegylated interferon daily it is not surprising that your white cells and platelets crashed.
It all sounds like a very odd treatment plan.
Is your doctor a hepatologist?
It all sounds like a very odd treatment plan.
Is your doctor a hepatologist?
Were you taking Infergen?
This is the only interferon designed to be taken daily.
Could you confirm that you were not taking Pegasys or Peg-Intron?
Also what dose and what dose of ribavirin..
Really need more info in order to comment.
This is the only interferon designed to be taken daily.
Could you confirm that you were not taking Pegasys or Peg-Intron?
Also what dose and what dose of ribavirin..
Really need more info in order to comment.
I was on one injection a week for 12 weeks and went down from 1M to 6000 but then jumped back up to about 100k when the doctor decided to put me on every day injections. I was on those every day injections for 6 days before the doctor called me and told me to stop immediately bc rbc and platelets were way too low. It took me a month to get them back up before she let me get back on. Been back on 6 weeks and no change in viral load, started at 98000 and she said last labs came back at little over 100k and not sure why the med is working this way when it was working initially.
You were on tx for six days then stopped for 4 weeks and then started again is that correct?
Unfortunately, sometimes people build up immunity to the meds or develop mutant strains of the virus that can't be fought by the meds. Interferon doesn't just kill the virus it also trains our immune system how to do it.......and going off then going back on seems to have put it out of whack for you in one respect or another.
it's too bad they took you off of treatment at all - generally we take procrit and neupogen so we don't have to go off treatment and just suffer a bit until it works. I do not know about low platelets at all or how low your hemoglobin or platelets went down but it's my GUESS that just starting and stopping was the wrong move.
The procrit or neup had nothing to do with it though.
I'm very sorry.
Unfortunately, sometimes people build up immunity to the meds or develop mutant strains of the virus that can't be fought by the meds. Interferon doesn't just kill the virus it also trains our immune system how to do it.......and going off then going back on seems to have put it out of whack for you in one respect or another.
it's too bad they took you off of treatment at all - generally we take procrit and neupogen so we don't have to go off treatment and just suffer a bit until it works. I do not know about low platelets at all or how low your hemoglobin or platelets went down but it's my GUESS that just starting and stopping was the wrong move.
The procrit or neup had nothing to do with it though.
I'm very sorry.
VL usually goes down as you treat but it's not guaranteed, especially at early part of TX. 6 days was not long enough to get interferon action well established in a pattern and stopping for a month after only 6 days TX put you back to day 1.
Who devised the TX of daily interferon? That sounds very aggressive and no wonder you crashed immediately. Glad you are tolerating it better now.
Who devised the TX of daily interferon? That sounds very aggressive and no wonder you crashed immediately. Glad you are tolerating it better now.
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