I've been on the daily 15mcg daily of Infergen - which they had to take me down to 12 mcg daily due to bad side effects and after 6 mts of treatment, I still have the virus and viral load only down to 15,900. So, in my case I'll probably stop the treatment for now. Hope it works better for you.
Thanks, zazzz - hopefully, the new treatment will be more successful.
Sorry to hear that. It is tough spending so much time on tx without getting to UND. Better luck with the new drugs coming!
Hey, Pro, that is great! Just got the short course left then!
I started Riba and interfon tx last oct. After 12 weeks tx was not working. Switched me to Infergen Interferon alfacon-1 which is a daily shot along with continuing on the Riba. Just rec'd 6 mts results and tx is still not working. I still show I have the virus and viral load only down to 15,900. Because of all the side effects I've had, low white blood cells and platelets and anemia I plan on stopping the treatment for now and wait for the new ones.
oh ya, and some would also be happy they did shot #48 this morning.....;^)
"You can tell an extender from how thrilled they are that they only have eight more months of tX."
LOL!
You can tell an extender from how thrilled they are that they only have eight more months of tX. *LOL*
That's what I was thinking today; only 32 weeks to go.
Pro, you said you had a couple of decent weeks after shot 40. I do 40 on Friday and this is the first week in ten months where I almost feel normal.
You said that happened to you, too. Wonder why?
Shel, I agree, from what I've read, that it can take up to 6 months for the toxins to leave your body. I hope you start feeling better real soon.
wyntre
chin up Shelly, give it some time....I think we also have to keep in mind that for 72 weekers, many of us on completion of tx, will be 2 years older than when we were DX'ed, and this has to play in the scheme of things......and for me, if I had continued to drink, I *would* have been dead before my hcv
dx. Your system is just clearing the toxic drugs, give yourself time to heal from the assault...
Shel,
Please forgive me for not calling you back yet. I have had an unbelievably difficult couple of weeks, partially tx related and also having to deal with some other serious, really scary non-medical issues. Anyway...the storm has abated so you will hear from me. I just have been too exhausted to talk in the evening. I spoke with my np in reg. to cryoblobylin (sp?) and asked her about it. She told me it is due to Hep C and not treatment? You have been on my mind alot...and I'm sorry you are sufffering with so many things. I have prayed about my decision and for now I'm gonna stick with it. I appreciate your input Shelly and I understand where you're coming from.
I'll call soon. You remain in my prayers
Yvonne
Yvonne, I tried to call you...left you a message.....
I am sorry to hear this but why don't you wait and try to tx later??
I hate to say this but here goes....I WISH I NEVER TXED!!!!!!!!!!!!!!
72 weeks of this **** in my system and I am so far clear 7 weeks post BUT I feel worse now then I ever did!
I am on INDERAL 3x a day for heart rate, my thyroid is totally blown and my one test came back to say I might have chronic renal disease!!!!
I am awaiting a phone call from my endo who believes I have an autoimmune disorder...
My thyroid is causing me to have all these issues and t wouldn't be so screwed up if it wasn't for the interferon!!!
Sorry but if you don't have to tx really weigh the issues before you decide...I made a bad choice and wish I would have waited longer or died from cirrosis....thats how bad this **** effects us.
So sorry for the relapse..hope you feel better, sorry had to vent..been in Hosp 2 days and feel like giving up.....hugs anyway shelly
I did better on Pegasis. As a relapser, I am not near as afraid of retreating as I was the first time. I survived it and know what to expect. I am much better informed on SX. You will be alright. Love and prayers.
Zazza: Thank you zazza..I called np...told her double up! Gonna give it a try...Hugs to you! Y
Purplecat: All the best right back to you. Thank you. How are you doing????? How's the petichia?
Bill: I brought up infergen to my doc. He is not impressed with it....so I'm doin' what I can.
I know this is a huge leap of faith...I am just not willing to give up @ this point. I feel blessed to have insurance (individual), who knows if I will in the future...there are so many variables, so if it doesn't change anything in a month or so...I stop.
I know nothing to help you with your decision. This is very difficult, I just wanted to also send my concern and support. Stay strong. All my best.
About double dose Pegasys, I just had a long talk with the nurse at the clinic where I will go in about a month. With regards to high dose Pegasys she doesn't think the doctor will agree to that. BUT, he does treat with 15mcg daily of Infergen.
She says that they have treated a good many patients with Infergen and she thinks the problems are overstated. She says they have had much worsle problems with Pegintron at the SOC dose.
Bill
I am saying this as the unprofessional patient I am. If you are considering continuing tx by either double dosing Pegasys or switching to PegIntron, my gut feeling says double dose Pegasys. I would myself have stopped tx if I was detectable at week 24, but given I had to continue I would want to do something radically more aggressive. Just switching interferons is, in my opinion, not enough.
Zazza
Just read this post. I usually stick to just one side or the other, but this morning found myself on this side. First how sorry I am to hear of your breakthrough. I totally get that feeling, but I too know your faith....remember that our faith doesn't get us around adversity, but through it. Stay strong...stay focused...live in the know that you know.....Until then keeping you today as always before Him.....
Yours in Christ,
Rick
Maybe you should conisder the double dose of Pegasys. The sides might not be that much worse, especially if you are tolerating it well now.
Here is what a Dr. Cecil says on his website: "Pegintron at elevated levels is very toxic. Pegasys at 270 mcg or even 360 mcg is well tolerated."
That is what I am trying to figure out now. I responded on SOC Pegasys three years ago ( but oddly, UDT at 12 weeks, 212,000 at 24 weeks, and UDT at the end) but then relapsed after six months. SO now I am thinking about higer dose Pegasys or 15mcg daily Infergen.
Dr Cecil is www.hepatitisdoctor.com
Bill
Glad you took my truthful words with what I know you were feeling at the time. I didn't mean to make you feel bad, but you knew they weren't good. As some said it is good you found out before going 48, or possibly it could be an error. I hope so. Hate to say welcome to the relapse club, I sure hope it isn't so, but of course I am so, so sorry. It is a depressing time and please try to let us help you out with this devasting news. Those of us that have relapsed still have this great forum to come to and get info and understanding. I haven't been priviledged to know you before....been kinda sick for a while. But hope to get to know you in the future.
I have talked to some of the relapsers online and in person and it really helps. It took me awhile, after feeling sorry for myself for awhile. Nice to meet and I hope we can talk again.
Linda
so sorry to hear this, hope it's a mistake, and if not, I know you'll do whatever you need to do in your own best interests...stay strong..
Went to University Hosp. to see my hep dr. regarding breakthru.(He is te head of hepatology dept) I asked about stopping all meds. for now. He advised against it. He said if the vl #'s were say in the millions..he would agree. He gave me two options: Double up on Pegasys or go to PegIntron. I said go with PegIntron? So if ins. company o.k.'s it...that's what I'm gonna do.
I have an extremely important day tomorrow...have alot of anxiety and fear that is Not tx related. For those who would remember me in prayer tomorrow...I would really appreciate it.
Thank you.
Yvonne
I'm so sorry to hear your news, but you have such a great attitude, and the hope and promises of the Lord to hang on to...He is our shelter in this storm, and thru our weakness shall be our strength...you are deeply loved!!
be blessed....
sorry to hear this. It is hard to receive news such as this, but you're not alone, we are all here for you. Keeping you in my prayers..