Hepatitis C Community
maintenace dose
About This Community:

This forum is for questions about medical issues and research aspects of Hepatitis C such as, questions about being newly diagnosed, questions about current treatments, information and participation in discussions about research studies and clinical trials related to Hepatitis. If you would like to communicate with other people who have been touched by Hepatitis, please visit our new Hepatitis Social/Living with Hepatitis forum

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

maintenace dose

TO REVENIRE: YOUR RECENT POST ON ABOUT BEING ON MAIN. DOSING JUST GAVE ME A VERY BIG LIFT..  I TOO AM ON MAIN DOSE. I TOO ALSO FAILED CONVENTIONAL RIBA/PEG TREAMENT. I TOO HAVE STAGE 4 CIRRHOSIS/  I FIND MYSELF WONDERING - AM I DOING THIS FOR NOTHING?  I EVEN OPTED TO TAKE MY PENSION EARLY AT A REDUCED RATE - WAY REDUCED... NOW I READ YOUR NUMBERS ARE IMPROVING JUST FRM BEING ON SO MANY TREATMENTS.  THIS IS GREAT NEWS FOR YOU AND NOW I AM SURE OTHERS THAT HAVE BEEN ON SEVERAL TREATMENTS. STAY WELL, AND AGAIN YOUR LAST POST GAVE ME & OTHERS HOPE..
Related Discussions
8 Comments Post a Comment
Blank
Avatar_n_tn
Thank you from the bottom of my heart for posting this!  It really gives me hope after failing treatment 3 times.  Could you please post a little more information about what the maintenance dosage entails?  Is it still shots 3x a week?  What are the side effects like?  I go back to see my doctor in November and we're going to again discuss treatment options. He has always talked about daily infergen. Seems like maintenance dosage is a second thought.
Thank you again!

PJ
Blank
Avatar_n_tn

I'm so happy for you. You are winning a very hard marathon!  Did you have any problems with itching on Pegasys?  At the very end (48 weeks) I developed psoriasis, plus other skin problems -- the drs think I had an allergic reaction to the peg part, so I'm not sure I could take PEGASYS again, and that's the only drug that actually made the virus undetectable, although it did come back right away after I stopped treatment.
Good luck and God bless.
Blank
Avatar_n_tn
You said that you or your doctor didn't know why the lab values are improving.  Wouldn't that be attributable to the maintanence dose you're taking?  Also, I haven't been on the board for a few months but thought that last time I read it, you had srv'd.  In any case good luck with your continueing struggles. travis
Blank
Avatar_m_tn
Glad to see you're doing so well.  Are you still going to #82, or further.  Reason I ask is the term 'maintenance.'  Are there some people who remain on a half dose indefinately?

After 60 weeks at 180mcg (full dose) of pegasys, and then 12 weeks at 135mcg (3/4 dose), I start 12 weeks at 90mcg this week.  The plan is to go to 45mcg (1/4 dose) for 12 weeks after that for a total of 96 wks on this stuff.  I really wonder if my Hematologist won't recommend me staying on a low dose longer when I reach the end.

Regarding the itching, I also have had that recurring rash.  My GP gave me some Mometasone Furoate Ointment which he said is 5-10x the strength of Hydrocortisone.  It knocks out the rash with a couple of applications.  Unfortunately, about half of them come back for more.

Take care,  Dave
Blank
Avatar_n_tn
Hi, and I'll say welcome, because I haven't seen or ever talked to you....that I can REMEMBER!!!! LOL!!! I too relapsed! I am 48 yr old female, geno 1A. Vl started @a bit over 6 million, was still 1,930,000 in March of this yr.)  I started tx on Dec 6th 2002. I did combo, rebatol and pegasys. I gave the 48wks 100%. I only missed 2 riba caps. that I found in a coat pocket, so I can honestly say I did 100% !!!! I was an EVR, @ 12 wks blood test...results...no hepc detected. I DID have rough time on tx and thought for sure, because I had such a HARD time...I was surely gonna clear! My viral load was undetectable throughout tx. At end of 48wks..I still felt "sick"...I was aware it would take time to get the meds outta my system...but it wasn't a "meds" type of sickness I was feeling My "old" DR. always waited 6months to do post tx blood test, but I finally talked him...(well really had to demand the test w/ a little message that hubby @ I would come to his office and have a heart to heart!!!!...if ya know what I mean!?!?) well he gave in and ordered 4 months post tx blood test. Results... and I found out in his parking lot...by his recpt. that I had RELAPSED.!!!!!  LOL What a way to find out huh?????? My husband was fit to be tied!!!!( for us to be told there @ by a "freakin' recpt.!!!!

But hubby had taken me to my pain specialist....and I hadn't heard from test....4 wks earlier...so we made an appearance. It was close to lunch, thought we'd catch dr in. Anyways..I'm NOT going to write a book...so I'll finish up w/ saying. "old" liver dr sent me to Duke University to check on clinical study. I was told @ Duke by Dr. I needed to treat again.

I had been told by a friend of mine who was treated by a Dr.Reindollar @ Carolinas Center for Liver Disease....gave a call, saw him 1st time on May 21st... I call him "Dr. Wonderful"!!!! We consulted, he did lab work (on site...a big PLUS) and ordered an ultra-sound and bx...which I had yesterday @ 1pm. I qualify for a clinical study...he is doing...he also studies on same panel w/ Dr.'s from Duke. He's a hepatoloist and also does liver transplants. I know I am in GOOD hands now!!!!

So.......point?????? He says what YOU and I went thru....responding and then after finishing tx....relapsed....this is what hepatologists are studying really HARD right now. So I just thought maybe, YOU could find a dr. who is doing those studies. There are 3 different types of studies he's working on for "our" problem....I will see him again on June 23rd and results from blood test  and bx will determine WHICH tiral to put me on. And the BEST part????? EVERYTHING IS FREE!!!!!! He says these meds they are going to use can cost up to $12,000.00 a month...and I thought the combo was expensive!!!!

I won't start the trial for 4 to 6 months, and like I've said before...even if the out come isn't exactly what "we" are hoping for....@ least it will be one more step closer...for not just me ....but for everyone suffering Hep C!

I want to wish you the BEST and if you're interested....try to find a doctor who is doing studies. Heck, w/ all we've been thru( I now have tissue damage and fibromyalgia)....what can it hurt???? I don't mind being a "lab rat" if it can contribute to the fight against Hep C. Please let me know how you are doing. I still have a LOT of fatique....fibro @ hep....I'm sure !!!!!

Keep in touch...BTW my e-mail is southern34belle98@yahoo. If ya do ever e-mail me.....in the subjest space.....remind me you're from the MedHelp forum.....I don't open mail from JUST anyone....but "we're special" aren't we????? LOL Much love @ Many prayers, Cindee
Blank
Avatar_n_tn
Hi, I'm not sure exactly what all is free, but that's another question to add to my list to ask doctor on the 23rd. I hope it's ALL free. My cobra solutions run out Nov 1st. I called B-x, Blue sheild about his, and they said to call back Sept.1st and they would give me numbers on how much an individual policy would be. I can get on insurance @ hubby's work, I used to work there before 1st tx. I'm just trying to get the cheapest possible. I wish you the best. You will be in my prayers. Love @ prayers, Cindee
Blank
Avatar_n_tn
RE maintenance for relapsers: Please bear with me, I'm trying to understand this & I'm still fuzzy :). So . . .the course of treatment is:
(1)you stay on tx (maybe PEGASYS, etc) until you achieve undetectable again,
(2)stay on full dosage for 48 weeks,
(3)then continue to stay on tx for a reduced dosage.
(4)Periodically do a PCR text to see if you still are undetectable?

If you take a break, do you take a chance that the virus will return?  If you reduce dosage and find that the virus is detectable again, then do you just return to the higher maintenance dosage?  It seems like the amont of peginterferon that will suppress the virus would probably vary with each individual, or do you think the same dosage works for all?
If you took Pegasys for 48 weeks, undetectable, then relapsed within 4 months, then waited a year to retreat, would you go back on Pegasys again and then do the maintenance treatment routine?  Does it seem like the virus would have mutated to build up immunity to the Pegasys?
Thanks for any insight from your hard work.

RE Cindee:Sorry about your horrible Dr!  Let us know what trial you end up in. Meds are free, but what about costs for dr visits & labs?  My new insurance isn't great.

Good luck to everyone!
Blank
Avatar_m_tn
I got a laugh out of your post- were you joking?  I thought I was the experiment with this titrated extended tx.  My Hepatologist is a well known Dr (one of the co-authors of the Fried study on combo tx done prior to approval of Pegasys/Ribavirin combo), so I believe he might be onto something.  

My extension to 96 wks is due to my cryoglobulinemic vasculitis, which can interfere with HCV tx.  That was sucessfully treated last summer with Rituxan, so I'm hoping the cryo won't prevent me from reaching SVR.

Take care,  Dave
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Hepatitis C Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
Top Hepatitis Answerers
96938_tn?1189803458
Blank
FlGuy
South, FL
1747881_tn?1358189534
Blank
hrsepwrguy
Greeley, CO
317787_tn?1373214989
Blank
Dee1956
DC
Avatar_f_tn
Blank
Livelife777
Avatar_f_tn
Blank
susan400
FL
163305_tn?1333672171
Blank
orphanedhawk
Rural Mural, CA