NM283 Idenix Pharmaceuticals Valopicitabine NM283 Combined with Pegylated Interferon in Hepatitis C Patients
NM283 is another drug in trials that is showing some positive results with the hard to treat genotype 1 Hepatitis C. You know the drill, years away if ever but still worth keeping an eye on.
Idenix Pharmaceuticals announced 4-week data today from an ongoing phase IIb clinical trial demonstrating that treatment with valopicitabine NM 283 combined with pegylated interferon resulted in rapid and marked reduction in virus levels in genotype 1 hepatitis C patients. The mean reduction in virus levels was greater than or equal to 4 log10, or 99.99 percent, after 4 weeks of treatment among patients in the two dose groups that began on Day 1 with 800 mg doses of valopicitabin NM283.
January 30th, 2006 at 12:23 am
hi. just been diagnosed this week, had a pcr and they said even though i have slight scarring of the liver they want to apply for funding to start treatment, interferon program, literally just emigrated last year and discoverd this on return to the uk. so can anyone tell me where do we go from here, is the interferon the best way, i am 40, travelled all my life and probably contracted this in india, or my local cafe god knows..quite optimistically the consultant said well you have got 30 years!!! any views
sanyassi
January 30th, 2006 at 6:25 am
Hi sanyassi!
Well the interferon/ribavirin treatment is the best there is, in fact as regards killing the virus its the only game in town.
If I were you, bear in mind I am not a doctor, I would want to know genotype as this determines length of treatment and sucess rates and possibly the extent of liver damage via a biopsy. Do you know what genotype you are?
January 30th, 2006 at 1:59 pm
HI HCB,
my case history is as follows, was diagnosed in january 2005, via a blood test, and then went to hospital for a biopsy, which resulted in a meeting with my hep doctor who said that fortunately i have a very mild case and that 20% of such people can cure them selves, and she said to avoid the obvious ..beers, and to come back in 5 years for another scan etc, so i thought i would emigrate to the med, then i went to uk this christmas and whilst there went to see the consultant, who said errmmh….well actually we looked at the biopsy again and you have a bit more evident liver scarring,than 1st seen, and that she wanted to start a years treatment on the interferon, and that she has to apply for funding for this which is not a problem, and that they want to start treatment by august as it takes this long to get the funding issues. this sort of put me on the back foot, cos i got to come back to the uk for the treatment is it a monthly thing or what? also like a dick head, i am drinking a few pints each week of lager, maybe 7 a week, and how much does that screw the job up? it is a drinking place the med, and the locals dont think i have a problem compared to those who do 30 pints a night, but i need to know, finally i will ask for my genotype tomorrow i will ring them and reply, and if you can answer my q,s i wouldbe most appreciative,
sanyassi
January 30th, 2006 at 2:42 pm
Lots of questions there!
The simplest way to look at it is that the hep c virus attacks the liver and damages it. The great thing about the liver is that it repairs itself, which usually is good. The problem with that though is that the scars build up over time until eventually you liver becomes just a mass of scar tissue and stops working. So normal liver > scared liver [which they call fibrosis] > all scared liver [which they call Cirrhosis]. The doctors use a scale of damage and in the UK it is usually a 0-6 scale, with 0 being no damge and 6 being Cirrhosis, there is no 7 if you get my drift. If I were you I would want to know the damage I had on that scale.
As regards drinking I think the best way to think of it is pouring acid on an open wound. If you did go on treatment you would have to stop anyway as it stops the drugs working. If its any consolation I was a dickhead too :)
As for treatment being a monthly thing I suppose the answer is no, it really is somewhat of a big commitment. You will need to inject yourself once a week usually [in the belly] with the interferon and take ribavirin tablets twice a day. Normally during the first month or so you will need weekly blood tests usually at the hospital and monthly tests after that. As regards side effects they can vary, best case is that you will feel a bit rough.
With you saying a years treatment I would guess you are a genotype 1, that gives you a 50/50 chance of clearing the virus first round of treatment.
See how I gave you all the bad news first? The good news. Hep C won’t kill you, Cirrhosis however almost certainly will, the trick is to stop you getting to Cirrhosis. If you do that then you will live a normal life. The sure fire way to stop the liver damage in its tracks is to a) stop drinking and b) kill the virus, easy see :) Only about 30% of untreated people progess to Cirrhosis, problem is they have no way of telling if you would be in that 30% or not .
So down to brass tacks. You need to know the extent of liver damage you have, this will help you to decide to treat or not. In simple terms the nearer you are to 6 the more urgent is the need to treat. I can’t offer much advice as I was a 6 so the decision was easy for me, my guess is that I wouldn’t have treated on a 0 or 1, a 2 I would have thought about it and ended up treating, 3 and above is a no brainer. If the damage is light you have a tough decision to make, you have to balance the fact that new more effective drugs are being developed and *may* and I’ll say again, *may* offer better treatment, then again the younger you are the more effective current treatment is.
The main thing I would say is that I have a bias towards treating and think that it is wise to take a Doctors advice. You will find others with differing views so seek out more information. The other thing is that really treatment isn’t something you can do half arsed, you either commit and go for it or you don’t. One more thing, there is never a convieniant time to treat so I would try and get that out my head.
I don’t know if that sounds a bit negitive its not meant to be, its real simple kill the virus and everything will be cool :)
You can always shoot me an email if you wish, boy@hepcboy.com
I would also take a look here, I would say the guy is pro-treatment too so bear that in mind but a great site http://www.theboltons.plus.com/
January 30th, 2006 at 3:37 pm
in that last post i have t say that you made more sense than all the publications i have read about this, and i am sorry you started off at six, if i could i would give you 2 of mine if you know what i mean, i guess it was a long time between the arival of this and the discovery of it, i was screened as part of an op on a broken arm, they told me…your arm is fine but did you know…?? finally i actually know a good mate of yours and have done for a year it was only last week i told him that i was a carrier and he told me about your site, when i know you better i will answer the question you want to ask..like who is he?? anyway thanks for the obviuos efforts you have put into this site, and your hands on knowledge, and i will keep poting to you, as well as finding my genotype asap..
anyway..speak soon
sanyassi
February 9th, 2006 at 1:34 pm
I am in a clinical study right now for the combo treatment of nm283 and pegasys. Is there anybody out there doing the same study? I’m in week 10 and my viral load dropped from 18,000,000 to 2500 after 4 weeks of taking the pills and shots. Is anybody else out there doing this study and how is it going?
February 11th, 2006 at 2:08 pm
Hi Archie
I am in the clinical study with 800 mg NM283 with Pegasys. I have been in the study since March 2005. I am responding excellent. My viral load has been neg for 8 months. I am geno type 1 and I have failed to respond to traditional treatment. Feb 13th 2006 will be my last day of this treatment. I will know in a couple of weeks if I continue to be Neg.
February 11th, 2006 at 7:36 pm
Hi April!
Thanks for the feedback! The only thing I have a problem with is the shot. How do you handle it and when is the best time for you to do it? Oh yeah congratulations on your results! I think you are on a downhill slide. How long did it take you to be negative? A month or two? Also is this treatment a lot easier on you than the ribavarin? This is my first time on anything and they tell me I’m doing great, but it seems like this is going to take forever. What helped you get through it?
February 11th, 2006 at 7:47 pm
April,
I didn’t realize until I read it again that you are done in two days. Congratulations for hanging in there so long! You are an inspiration to me. How long was your first treatment? The same? And how much time did it take to lose that last 2500 or so of the virus? Being eight months clear I’m pretty sure you beat it! All my best to you.
February 13th, 2006 at 10:56 am
Hi Archie
I think the nm283 is harder than the ribiviron. I was on the combo ribiviron and interferon for 18 months. It didn’t work. nm283 makes me nauseous. If I would miss a dose, then take the missed dose the next day I would spend the following day vomiting. (sorry) Try not to miss a dose of nm283. I found that my body would tolerate the nm283 better if I was consistant. I lost 35 pounds. The doc says its do to the peg. It took about 10 weeks to become undetectable.I started in March. Around June I became undetectable. However, during huricane Willma in Oct. I missed 2 weeks of treatment. I was unable to keep my peg cold because of no electric and I was just too stressed out from everything. My viral load went back up to 2500. The next month after going back on treatment I went back to undetectable. I have been undetectable with the exception of the short relaps since June.
I hate taking the shot. I have lost so much weight that its hard to find a spot on my stomach or leg with fat. At least its only once a week. My first trip down treatment lane (3 years ago) I had to take the shot 3x’s per week.
I guess the medicine is made to stay in your body longer now, so it only has to be taken 1x per week. They were suppose to take me off the meds today. I saw the doc this morning and he said since I had that relaps they want me to stay on 6 more months. That will make a total of 72 weeks by the end of treatment. Hang in there. This new drug nm283 is so promising for geno type 1 hep c. You can do it. It only takes 5 seconds to give yourself the shot. Then your done. Take vitamins and get all the rest you possibly can. Drink LOTS of water. Don’t let yourself dehidrate. Keep a positive mental attitude. There is nothing you can do about the side affects. You just have to accept them. Anything you can do to drop the viral load, no matter how short of a time that may be, is always good for your liver. It will feel like forever. But think of the rest of your life. Its worth a year or 18 months of feeling bad for 20 or 30 more years added to your life. Keep me posted on how your doing.
April
February 13th, 2006 at 2:15 pm
April,
Thanks for your advice. I just don’t understand why they want you to continue when you’re clear right now.I wish you all the best and when you get a moment keep me updated on how you are doing. Archie
February 13th, 2006 at 2:49 pm
archie
They want me to continue because the longer the virus is undetectable the greater chance I have of it staying undetectable. If I stop now it may come back. Once you are undetectable, I think they will keep you on the meds for at least 6 more months. Clearing the virus does not mean thats the end.
April
February 14th, 2006 at 1:47 pm
April,
On one of your posts you said you have been undetectable for eight months or all clear. I would have thought that would be long enough. Also with all this treatment you have gone through doesn’t depression effect you at all? It’s been a huge issue for me. They just increased my celexa, so I’m hoping it will kick in soon and I’ll feel a bit better. I’ve thought of quittting this study for that reason. Most of the time I don’t feel comfortable in my own skin. Did any of these treatments effect you like that and what did you do about it? Thanks for all your advice and HAPPY VALENTINE’S DAY! Archie
February 15th, 2006 at 7:09 am
archie
I have not had any problems with depression. I try to keep a positive attitude, and work through it. I am not on antidepressants. If I were to start feeling really bad I would stop also. What really depresses me is being on treatment for 6 more months. I am not sure if I’ll be able to do it. They don’t think its been cleared long enough, and I had a relaps in Oct.. Plus they want to test the medicine. They want to be able to say nm283 works for hep c geno type 1. Happy Valentines to you too.
April
You are stronger than you think
February 15th, 2006 at 3:28 pm
April,
Thanks for your quick answer. From what I gather from you, you have to stay on this nm283 til it’s beyond dead. Do you think my odds of clearing this are good going from 18,000,000 to 2500 viral load in a month? I don’t drink, smoke or do non-prescription drugs. I go in for my blood test on Monday. Does it take forever to clear the last 2500 or so? Or does it happen quick? Oh yeah, you sound pretty strong about this nm283. Do you know other people that have cleared it? In my study they say a number of people have cleared it, but none of them have been on it as long as you. Plus I’ve never spoken to anyone (except you) that’s been doing this. Hey hang in there your responses have given me more reason to continue on with this treatment. I just don’t have anyone that I can really talk to about this. Thanks again for your support.
Archie
February 16th, 2006 at 7:12 am
Archie
I bet you’ll be NEG on your next visit or at least down in the hundreds. I have not met anyone in my study except you. According to my research study nurse I was the first in my group to become NEG.
Are the ones in your group that have cleared it still NEG? And are they still on treatment? I can’t wait to know what your numbers are. GOOD LUCK
April
February 16th, 2006 at 1:05 pm
April,
The study I’m in is not as far along as your’s is. They are only 20 something weeks into it. Maybe a little more by now. The ones that dropped out are no longer negative. They didn’t finish 3 months and I guess they quit and the virus came back. I don’t know anything about the others right now, but I am going to ask when I go in on Monday. I should know by Wednesday what my viral count is. I just hope it’s down more. I’ll let you know when I get the results. Thanks for caring and good luck on the next six months! Oh yeah did they tell you to take all four pills at once?
Archie
February 16th, 2006 at 4:04 pm
Is there anyone else out there on the nm283 study and how is it going?
February 17th, 2006 at 5:20 am
Archie
Yes I take all 4 pills at once. If I am consistant and take them at the same time every day, I don’t get sick. Keep me posted on your results.
April
February 19th, 2006 at 5:25 pm
Hi lawnboy I am in the study
February 21st, 2006 at 12:30 am
I am 49 years old, and have had hep C since I was 9 years old. I greatly suspect it was thanks to tainted blood when I had childhood surgery for a broken hip. I have only known that I have hep C for about 7 years now, when I had a life insurance blood test which came back positive. I have had 2 biopsies to help determine if treatment would be good for me. The last one was 1 1/2 years ago. Both biopsies showed only mild fibrosis, so I am very lucky, but my viral load is not low. I am genotype 1, the most difficult to treat. My doctor is a leading hep C doctor in Los Angeles, and he has advised me to postpone treatment until the hep C drugs improve. One of the reasons he does not advise treatment, is that I also have psoriasis and psoriatic arthritis. Interferon has been known to make those conditions worse. One interesting thing to note, is that I take Enbrel (enterecept) for my arthritis. My doctor suspects that this medication may be helping stop inflammation in its tracks in the liver as well as in my joints. It has been a miracle cure for my arthritis. SIMPLY AMAZING. The good news is, after being on Enbrel for 6 years now, we know from the recent liver biopsy that it is certainly not making matters worse. I have read studies that people who contract the virus at an early age have better odds of the virus not causing damage, than those who contract the virus in adulthood, so perhaps the Enbrel has nothing to do with the low level of fibrosis.
I am following with great interest the new drug NM283. I have read such enthusiastic reports on the medication that I have invested in Idenix. Even if I never end up taking it, I hope it is the miracle drug that all hep C sufferers are looking for. Maybe I can make hep C pay off for me that way!!! Good luck everyone - and for those who are taking NM283, please post your results!
February 21st, 2006 at 6:37 am
Archie
I have been thinking about stoping the treatment. I have been on it for a year. I am so tired. I want my life back. I am so thin. Theres nothing left of me. I know I can’t go another 6 months. I have been undetectable for 8 months. I am affraid that if I stop the virus will come back. Who knows?
But, I don’t feel like I can continue.
April
February 21st, 2006 at 7:33 am
Maybe an antidepressant would benefit you. What does your doctor think about your present condition? Be honest with your doctor. Eight months undetectable is a very good sign, so congratulations!
February 21st, 2006 at 3:28 pm
April,
My thoughts are if you have been undetectable for that long it would be gone. I’ve read a lot of different things saying that a lot of doctors stop treatment after six months clear. Not all doctors, but some do. I asked my nurse why do you guys keep on treating us if we’ve been clear for so many months? Her answer was that 48 weeks has been the standard for the other treatment, so they are doing the same thing with this one. I would try and get ahold of a few specialists and at least explain what is going on. Then get some feedback from them. Maybe somebody reading this might have some feedback about this. I think after awhile it all comes down to quality of life. Try and get some info from some hep dr’s and listen to what they have to say. They make 48 weeks like it is the gold standard for a cure and in this study they have no idea of what works and how long it will take. If you don’t think you can make it any longer try and get a few answers and see what the experts say before you drop out. Hey I can really feel for you on this. I don’t know how you’ve done it this long. I did ask the nurse how many of her patients are clear and she said 4 out 6. One guy is real heavy and didn’t clear it and the other person she said was not caucasian. I get my lab results tomorrow (I hope). I really don’t know if I will hang with 48 weeks of this study. It seems like it has totally taken over my mind. Maybe if they tell me I’m clear I’ll have a better out look about it. Drop me a line when you get a moment and let me know what you’re thinking of doing. But at least try and contact somebody with a load of hep c knowledge and talk it out with them and see what they think. Take care Archie
February 22nd, 2006 at 5:48 am
Thanks for the encouragment Archie, I usually see my study nurse, never the DR. I will ask to speak to him before I drop out. I would hate for the virus to come back after all this time. I can’t wait to hear your results.
April
February 23rd, 2006 at 3:41 pm
April,
I just got my numbers back and I dropped from 2500 to 1270 on the viral count. I have kind of mixed emotions on it. I was hoping for zero, but I’m happy it went down. I’ve been in the study for 3 months, but the first month I only did the shot. I’ve been doing the pills for eight weeks. What do you think of my results? 1270 is pretty low, but I was hoping for clear. Maybe after 12 weeks it’ll clear. What did you decide on your trial? I meant for you to talk to someone outside the clinic that knows hepc if you could. Hey I wish you the best and look forward to hearing from you.
Archie
February 24th, 2006 at 6:07 am
Archie
I think the results are wonderful. I know the next time you are tested you’ll be neg. Can you feel the change in your body as the viral load drops? I did. I had alot of joint pain before I started this treatment now the joint pain is gone.
I talked to Dr. Schiff at the University of Miami. He is a leading Hep specialist. Dr. O brien is heading the study I am on. Dr. Schiff thinks that I should continue because I relapsed in Oct. So thats what I’ve decided to do. At least 2 more months. I’ll try.
I am so happy for you!!!!!
April
February 24th, 2006 at 4:32 pm
April
Thanks for your support! I’m glad you are going to hang in there for two more months. After all you’ve gone through, you deserve to be virus free. Do you think my results are that good? I don’t know what to think anymore. I’ve been doing so many pills it seems like my mind is in a fog anymore. You deserve to clear this. When is your next pcr test? Do you still experience a lot of side effects now that you’ve been on treatment for so long? Or is it the weight loss that is getting to you? Let me know. I think my results are good, but I was hoping for negative. Thanks again for all your responses, you’re one of the few people that actually write me back!
Good luck with the next two months. I’m rooting for you! Archie
February 25th, 2006 at 6:20 am
Hi Archie
I think your response is great. Your viral load was at 18,000,000 Thats a huge drop. Lets hope and pray that it will be a sustained response. Even after treatment.
I still have fatique and weekness. Sometimes I am sick all day. Sometimes I feel great. I have good days and bad.
I started at a viral load of
4,000,000 on 2/23/05
2,000,000 on 3/23/05
126,000 on 4/1/05
17,000 4/09/05
2,000 4/20/05
761 on 5/18/05
undetectable after that until Oct. for 2 weeks I was at 2500. Then back to undetectable since then.
My next pcr test is on 4/9/06. They test every 2 months now
You hang in there too.
April
March 1st, 2006 at 6:59 pm
April,
Hey I’m just checking on you. How are you doing? Archie
March 7th, 2006 at 5:43 am
Hi Archie
I give up. I can’t take this anymore. It’s been 1 week since I took meds. I am done. If it works thats great if it doesn’t oh well I tried for 1 year. I’ll wait for something else.
April
March 7th, 2006 at 6:36 pm
Hi April,
Hey I understand. You’ve been doing this for a long time, maybe it is time to give your body a break. When will they do another pcr test on you? Hey I wish you all the best. If the pills made me sick there is no way that I could do this. I still have a hard time with the shot for at least 24 hours, but after that it’s not to bad. Hey keep in touch let me know how you are doing and how you are feeling, now that you are done with this stuff. Are you starting to feel better? I just feel you are going to be clear, after all that you have been through. Hey all my best to you and please stay in touch. Archie
March 10th, 2006 at 7:00 pm
Hi Archie
They did another pcr test today. I ve been off meds for a little over a week. I ‘ll let you know how the results come out. Keep in touch with me.
April
March 13th, 2006 at 5:00 pm
April,
How are you feeling now that you are not taking all of this junk? Do you feel any different? Any better? When do you get your results back? Let me know when you do! Archie
March 17th, 2006 at 7:57 am
Hi Archie
I got my lab results today… I am happy to say I am still Negative. I am so happy about my results. My next test is on April 10th. I feel great. 100%. I am eating everything in site. I put on 2 pounds.
April
March 17th, 2006 at 9:12 pm
Hi April!
Congratulations! I am so happy for you! That is great news! You deserve it! I feel like I just cleared the virus! I go in for my 4 month pcr on Monday. It’s supposed to be a blizzard here in Denver, but I’ll still make it. This will be 4 months of the shots and 3 months of the pills. It is getting a bit easier with the exception of the day after the shot. Hey thanks for letting me know that you are doing well. I’m really happy for you! You’ve come a long way and you’ve earned this! Talk to you soon.
Archie
March 19th, 2006 at 10:52 pm
Good luck, April — here’s to a sustained response from NM283 ! Did you experience gastrointestinal problems when you started the drug? How fast did you get over them? Awesome that you are negative!
March 20th, 2006 at 7:38 am
Lou
The gastrointestinal problems lasted about 12 hours. And the onset was about 6 hours after my 1st dose of nm283. After the 1st day I was ok. I did lose 35 pounds, but the DR. said it was due to the peg.
April
March 23rd, 2006 at 9:07 am
New to the site. I’m in week 46 of the trial, clear since week 8. I’m in the 400 mg/peg arm. Can’t wait to stop. I tolerated the pills well, but peg has never been easy on me, or anyone else for that matter.
April, did you do 48 weeks of the trial? I’m real anxious about whether the virus comes back after stopping the meds. Hell, I’m real anxious about everything right now. Good luck to you as you head for SVR.
March 23rd, 2006 at 5:37 pm
Okay, they are reducing the dosage in the trials. Evidently, even though the viral load response has been nothing short of extraordinary for those on 800 mg. of NM283, they feel confident that a lower dose (400 or even 200 mg) will be sufficient to do the job, and with a much lower rate of gastro-intestinal problems. Interestingly, the rate of of GI problems was not huge, and most people that had them only experienced them for a short period of time. I guess that’s what a IIb trial is all about: find the optimal dosage with the least side effects. Otherwise, the drug appears very safe, and also incredibly effective. We’ll beat this virus with NM283, mark my words!
March 24th, 2006 at 1:35 pm
A scary morning till I listened to the Idenix conference call this morning. First, there were only 6 patients in the refractory group with Adverse Events that took them to the hospital…diarrhea and dehydration. All were given IV fluids and all but one released.
Interestingly, the 800 mg arm responded faster than the 400mg arm at 4 weeks, but the 400 mg arm caught up with the 800 folks at 8 weeks. I’m in the 400 mg arm for GT 1, non-reponders, now in week 46 + a couple of days. I cleared between the 4 week and 8 week PCRs…I was
March 25th, 2006 at 5:51 pm
April,
I got my pcr test done and I’m down to 508. They just called me today and told me and everyone else to take only 1 pill a day (200 mg). I guess they were having to many adverse effects with the larger doses. How have you been doing? I’m starting to believe the vx950 is going to be the best of the new drugs that are out, or should I say in trial. Talk to you soon. Archie
March 29th, 2006 at 12:33 pm
Rudy I did do 48 weeks of treatment. April 10th is my next pcr test. I’ve been off treatment for about a month and I feel great… I will post my results in a couple of weeks
April
March 30th, 2006 at 8:34 am
April, You’re about a month ahead of me. I did my last Peg last night. Can’t wait to see your post treatment PCR results.
I’m so glad to hear you’re feeling well. I was afraid they were going to offer me the six month trial extension. I don’t think I would’ve/could’ve done it. Thankfully, I didn’t qualify for the extension.
Archie, the Idenix conference call said that the 200 and 400 doses are as effective as the 800 dose, over time. So you’re probably in good shape. Good luck with those last 508.
Rudy
March 30th, 2006 at 8:06 pm
Rudy,
Thanks for the encouragement. I hope you’re right. My RN said they were going to drop me from the study because my last drops weren’t large enough. I’ve gone from 18 million to 508 in 4 months and they said it wasn’t enough. I don’t get it. Congratulations on your completion of the study. I wish you the best. Archie
April 13th, 2006 at 12:59 pm
My labs came back today. I am possitive again.one month post treatment my viral load is 3,310,000 . 50 weeks on treatment.800mg of nm283 a day. peg once a week. 8 months negative. I am soooooo disapointed. But I realize I could not have continued to week 72. The peg was too hard on me physically.
April
April 17th, 2006 at 5:42 am
Hi April, sorry to hear of your news, lets us now how you get on in the future please.
Keep in touch.
April 19th, 2006 at 8:28 pm
April
I’m really sorry to hear the lousy news. Hey you gave it your best shot, that’s all you could do. So far I have not cleared the virus. My last three readings have been 520-720 and the last one was 651. I was dropping like a rock and then they cut me back to one pill. They have told me if I do not clear by the 6 month mark (next month) they will drop me from the study. I’m kinda confused now because I’m so close to being clear. I don’t know what to do. Should I jump on the ribavarin treatment for six months. I feel like I’ve been short changed on this study. The first month they didn’t give me any pills, then they told me to take two in the morning and two at night, then they told me to take four at once. Then when I got down to 520 they cut me back to one pill. I thought I would clear by now, but I realize only a small part of the hell you have gone through. Just curious did you drink any after the study? Or did they say to abstain? I was truly sorry to read about your setback. I hope you’re coping ok. From what I’ve read the vx950 looks like it may be the ticket, but who the hell knows right now? The grass is always greener. Archie
April do you think I should continue treatment if they boot me off of this study?
April 21st, 2006 at 6:38 am
Archie
The treatment didn’t work for me. But it may work for you. They want the study drug to work. They just have a lot of kinks to work out. They may change the dosage again before your finished. I think you should do everything you can to kill the virus. I am not an expert but your pre treatment viral load at 18,000,000 sounds to me to be high. What ever you do has to be a break for your liver, even if its only for 6 months or a year. Thats 6 months or a year that you’ve gone with a low or no virus giving your liver a chance to regenerate.
I don’t drink. Thats the worst thing you can do for your liver. Even without hep c alcohol is hard on the liver.
If they ask me to be in the study for vx-950, I’ll try it. But not for a while. I need a break.
April
April 22nd, 2006 at 1:22 pm
April,
Bummer!!! But you seem to be handling it well. My one month PCR is next week….I’ll let you all know.
Rudy
May 20th, 2006 at 5:38 am
April,
Hope you are doing well. I finally got to the 6 month point on the trial. My count is now 272, but my weight has changed. I have gone from 195 to 159 and I’m still dropping. I lost my sense of taste about one month ago and now everything tastes about the same. They said if I’m not clear by the end of this month I’m out. They dropped my pills from 4 to 1 a day, with the same once a week shot. I’m trying to hang in there, but I feel like I’m wasting away. To make things worse I’ve developed a rash on different parts of my body that won’t go away. How have you been doing? Are you feeling better? Is your weight coming back? Are you feeling better mentally? Drop me a line if you get the time. I hope all is well with you!
Archie
May 26th, 2006 at 10:23 pm
Hi Archie
I have gained 12 pounds. I feel great. The dryness of my skin has gone away. The muscle aches are gone the fatige is gone. But the viral load is up. I’ll have another pcr test on June 10 I’ll let you know how it goes. Hang in there.
April
June 8th, 2006 at 8:03 am
Archie
How are you doing? write back soon. I am worried about you.
April
June 11th, 2006 at 2:13 pm
April,
Hey thanks for your concern. Don’t worry I’m doing ok for right now. I go in for my 7th month pcr this week. My last count was at 272. They made an exception for me and let me continue in the trial even tho I was not clear. I’ve had a bunch of different sides from this trial, but nothing serious. My weight loss is an issue. I went from 195 down to 159. 24% body fat to 12% and my waist went from 35 to 30.5. I have no sense of taste. Everything tastes the same. Other than the day after the shot I feel ok. How are you doing? Have you read much about vx950? Hey I’ll talk to you soon, thanks for dropping me a line, I’m doing ok!
Archie
June 22nd, 2006 at 7:42 pm
April,
I got my results back the other day and my viral load went from 272 to 1100. They said I can stay on the study if I want to, but if I continue to go up I see no point. They are going to do another blood draw on July 5th and I will make my decision then. My results stalled when they dropped me from 800 mg’s to 200 mg’s. They refuse to increase my pills. I feel a little bitter about this whole experiment. I did everything they asked of me and when it comes down to it we are nothing but another set of numbers to them. I got really close to being cleared and now it looks like I’m going in the other direction. I hope all is well with you. Are you still gaining weight? How have you been feeling since you’ve been off the stuff. Please drop me a line when you get a moment, I’d love to hear from you. Archie
June 26th, 2006 at 11:43 am
Archie
I feel great I have gained 13 pounds. I got some bad news today. Pre treatment my viral load was 4,000,000 my ALT andAST were within normal range. Now 3 months post treatment with nm283 and peg my viral load is at 7,000,000 and my ALT and AST’s are out of range on the high side (I don’t remember the numbers). I am worse off now than when I started. I am going to do some research on vx950. Best of luck to you. Hang in there.
April
March 26th, 2007 at 9:12 pm
I’m on a new study for nm283, they reduced the dosage from 800mg to 200mg because people could not tolerate the 800mg dose (it’s very hard on your stomach) and also because people on the 200mg dose eventually catch up. The combo they used was Pegasys (Ribvarin and Interferon) and the nm283. When i started the my viral load was 22,500,000 … today I got the results after 4 weeks of the combo it is down to 24 … Dont’ want to get my hopes up too high, just hoping my latest test shows that the virus is clear.
April 26th, 2007 at 1:08 pm
My boyfriend Kevin is taking interferon shots and ribavirin - started Jan. 18 of this year. She had to lower the dose of both, to combat the sever anemia it caused him. Then she cut out the shot for 2 weeks, but he had to keep taking the pills. No he just had another shot that was cut in half, but the bloodwork shows too low of platelets, so now he will not receive a shot for 2 weeks, but still he must take the pills. I have heard the pills alone do absolutely nothing, and they make him very sick. Why would she make him take the pills with no interferon shot?
Also, his viral count is already negative - has been for 2 months.
Thanks - Christina
June 3rd, 2007 at 5:19 pm
What happens if you miss a treatment of pegasys/copegus and drink? Should you take the treatment after the drinking is done?? Just a couple days since the shots were to be taken?? Please help.
September 5th, 2007 at 5:12 pm
Heya, I have been on treatment for 5 months now, and the potential side effects when i started the treatment were scary. Its a slow thing getting support for Hep C. There’s so much ignorance and scare mongering from HIV in the eighties and from the media. I am a health professional and so it is slightly easier coping and understanding this thing. I consider it a curse really, but there is help out there and good friends will not judge you for having an illness. I personally find the Meds, give me stomach troubles alot and tiredness and also mood swings. This sucks but I am clear now, and when I got the news I was cured, I felt “normal” not that I am really, but the news gave me a whole new perspective on life and that, hey why stress about things….
February 17th, 2008 at 3:11 am
leg muscle pain
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