Pegssys or Peg Intron

[geow]

Hi everybody.
When I was last here I was doing Peg Intron. If I remember, many said Pegasys was easier to take. I also seem to remember reading that Pegasys had a higher SVR rate. Here is an article which backs that up http://hepatitiscnewdrugs.blogspot.com/2011/05/getting-ready-telaprevir-or-boceprevir.html  (read the italicized)
I have done many clinical trials. The last one I did, the coordinator told me that the new Protease Inhibitors were 3 years out. A few months later my new GI said it was out now, and offered it to me. I told him I preferred Pegasys, since I had heard it had milder side effects and was slightly better. As it turns out, he set me up to go for my educational class on Jan 19, 2012, and it was for Pegasys. I also checked my medicare insurance, and they only cover Pegasys. I am so happy and thrilled that I hope I have made the correct choice. The main problem I had on Peg Intron was anemia, hated the heat, got very weak, and I also hallucinated a bit. but I am a paranoid person sometimes so who's to say.
I have gone from thrilled to cautiously optimistic. At least I have been able to get my viral load down to 700,000. I have been as high as 6 million. When I was in school in 2008-2009 my alt and ast and my viral load kept going up; stress. Been taking it easy this year, dieting and exercising. Lost 4o pouds and can ride a bike 45 miles. Not bad for a 57 year old. I score a 'mild' on the Child Pugh Score, even though my enzymes are about 159. Doc said my enzymes are my liver screaming out, while my Child Pugh proves my body is fighting back hard. It all seems good, but it seemed good when I began Peg Intron.
I remain Cautiously Optimistic.
George
 

[willy]

Per your link you'll note;

"Studies indicate boceprevir is somewhat less effective than Vertex Pharmaceutical's telaprevir
The cure rate for new patients taking telaprevir ranged between 75 and 79 percent, compared with 60 and 65 percent for boceprevir."

For me, that is not a "somewhat" difference; more like a sizeable difference.  I believe that using a lead in w/ incivek netted about 4% increased rate.  This was only done in one study, and so one my interpret that the differences could be either less or more.

There was one "open label" study which compared using Pegasys or Pegintron and the difference was small, but I believe that the advantage was with Pegasys.

That is what i would go with; Incivek/ w Pegasys for the following reasons;

All but the open label trial the telaprevir/incivek trials were done w/ Pegasys, meaning to some extent if you treat w/ pegintron, it may be considered off label.  Certainly the statistics derived from trials would be more applicable w/ pegasys and far less so w/ peginron.

Dosing for Pegintron is 4 tablets riba per day, with Pegasys it is 5
http://pi.vrtx.com/files/uspi_telaprevir.pdf

http://www.gene.com/gene/products/information/pegasys/pdf/pi.pdf  copegus dosing fot g-1's & 4's)
<75 kg = 1000 mg
  75 kg = 1200 mg

That means more people using Incivek will end up with a higher riba dose.
I don't think that they could get away with the higher dose w/ Victrellis, since it would exacerbate the anemia issue.

I believe during or since the trials vertex has pushed the meals/ high fat intake which increased the blood trough levels of Incivek and so it is possible that the cure rate may be higher post trials.

If you had anemia last time you treated it should be considered as a factor this time, but I believe that Doug had fewer issues this go around w/ 3 drugs than past other treatments using SOC.  In a sense, every time it hold the potential for being different.

willy

[DougV]

I've done both.  WBC with two weeks exception on pegasys were the same for pegintron and infergen.  There was a slight difference with response rates, but that differnce is statstically insignificant.  One minor advantage of pegintron for larger/obese individuals is dosage can be weight based to an extent.  I noticed no difference in sides between the three.  I doubt any will make significant difference.

Anemia, or red blood cell issues are related more to Riba,  first time started with 1200mg dose. Hemaglobin fell one gm/dl per week average.  Second time started 1600.  Counts fell at about the same rate.  But I was totally wiped out on the higher dose and Procrit had no effect even at 80000u per week.  First time after several months and several units of packed RBC counts eventually responded and I completed 48 weeks.  Second time even though dose was reduced and high dose of Procit were started even sooner counts never stabalized and I was taken off at 39 weeks.  This time started 1200 Riba with of course Incivek and pegasys.  I also started treatment with hematologist on board and aware of past issues.  She opted for weekly monitiring from day one and decided to maintain with transfusions so I would both be kept more stable as she did not let me fall below 8.0 (exception one week caused by lab error not her) and to allow me to treat with no dose reduction.  However during the 1st 12 weeks with Incivek hemoglobin only fell at 0.5 gm weekly.  At week 12 I was at 10.0.  Half the decline I had experienced before.  Soon as the 12 weeks completed and I quit taking the Incivek hemoglobin immediately began falling at 1 gm weekly and continued to do so until three weeks post when it first started to trend up.  However only fair to tell you some on Incivek have had rates fall 2-3 gm weekly but I believe all I can think of were 1st timers so no way of knowing response to Ifn/Riba only. 

I do have a strong suggestion due to your past history.  If at all possible go see a hematologist/Onocologist before starting and work out a plan with them. They are far more familiar with chemically induced anemia than a GI, tend to monitor labs much more frequently and are much more aggressive in treating issues.  This was my easiest treatment ever and I accomplished so much more, and this I credit entirely to her.  She listened and discussed everything with me.  Not that it hurt she was a stunningly attractive lady.  . Of everything I've done through three rounds with Ifn/Riba involved seeing her and working out a plan of attack before treatment was the smartest and best thing I've done.

Doug

[geow]

Doug,

Thank You Very, Very Much for your in depth response. I know it takes time and effort to respond in writing, so I am Very Grateful for your efforts. Some of what I read I will have to research. I will request a hematologist. I may even call the clinic where I do clinical trials to see if they want to take some of my blood too. Maybe they will give me some dineros for gas money.

Here is another site http://www.stemcellsforhope.com/Stem%20Cell%20Therapy.htm I looked up today. One of my neighborhood pals suggested I check into it. I remember seeing on http://video.msnbc.msn.com/nbc-news-channel/42192368#42192368 that stem cell injections in heart patients is resulting in a 40% improvement rate; and that's with NO surgery, or long term drug use. Thinking I will forge ahead with the Pegasys, and keep the stem cell treatment in mind in case I fail the new triple treatment. However, if someone can convince me, I will consider the stem cell treatment. At least it only lasts one week!!!

Once again thanks for answering my questions, and sharing your experience, strength, and hope.

geo

[DougV]

I do believe stem cells may in time open up a new world in nerve regeneration, muscle, bone, and skin rebuilding.  I am a huge proponent of research into the possibilities.  But you are talking about a soft tissue organ with an intensive and complicated circulatory system.  I have seen nothing that indicates research has even started on something like that.  Plus it would be expensive.  The big kicker would be that injected stem cells themselves would become infected as would cells it produces.  Bottom line is if it worked it would not cure hep and any improvement at best would be temporary.  Where stem cells would seem to have their best use would be organ replacement, but then only if the stem cells came from self. 

Seems to me that regardless of the current state of stem cell research and what can be done now the best thing is to try and destroy the cause of damage and then once that occurs if damage is advanced enough then take a look at repairing that damage.  Just my opinion but I don't see an easy way out...Yet.

If you see research indicating otherwise please let me know.  There has been and are some upcoming clinical trials on cirrhosis but I saw nothing on hep.

Doug

[geow]

Doug,

My Nurse friend and I discussed the Stem Cell issue, and she came to the same conclusion as you; that it may offer some rehabilitation benefits once the virus is defeated. I sent an email to the South American web site with all of my information. Will post if they reply.
I got denied for my Pegasys prescription by my insurance co. this weekend, so I am waiting to hear from my nurse on how to proceed to Pegasist, the financial aid Pegasys offers to help patients find dollars.
I was getting hesitant about treatment because my knees have become severely arthritic.  My Orthopedist says knee replacement is my next option. Probably better to let the interferon eat away some more cartilage, and worry about the knees later. Also hesitant cause my Native American friend believes only in herbal cures. He is using Olive Leaf Extract to treat his COPD; even though he still smokes tobacco in a bamboo pipe.
My viral load going down sure makes me think I can fight with herbs. I have been Vegan for 4 months, and have been drinking lots and lots of Green Tea flavored with Ginger Root. The Ginger Root is a powerful anti-inflammatory. Hepatitis means "inflammation of the liver." I have also been taking more Milk Thistle. 2000 mg in the morning, then 1 or 3 more as the day wears on. Not to mention I am getting disability, not in school, and just going to lots of AA meetings to avoid stress. 
geo

[willy]

Geo, I have lately seen a few almost pre-emptive insurance rejections.  I don't quite understand what takes place, but for some companies they reject, and then either the patient or doctor has to remind the insurance company that they must pay...... and then they approve the drug or treatment.  i think they hope that the first NO will just turn people away.

Have your doctor contact them and assert that this is what they are PRESCRIBING.  What's the deal?

Don't give up, stay the course.  I believe that both are approved treatment drugs, if your doctor says one over the other i believe that it could take it out of their domain.  Further, if you are treating w/ incivek, then pegasys is the specified interferon.  I believe it also has a higher efficacy rate.  I would not accept this rejection without a conversation/fight.

By the way..... your arthritis also is a factor. You want to treat only this time with the most efficacious form of TX; a lesser one will risk you having to treat again; no savings there.

FWIW Vertex also has a assistance program for which you may also be covered.  If the insurance company stands by it's guns about insisting you take Pegintron, i would also contact vertex and ask them for some input/advice.

willy

[RiverRandy]

Geo

I am on my 2nd trial of Hep C tx.  Which I started 12 weeks ago with Peggsay and Ribrivia and Victrelis.  Most of the treatment that your class provided sounded pretty good to me.  I am followed by Loma Linda U in Ca and they have recommendated 1% cream for the butt itch.  My VL Count was 2.5 million at the beginning and now after my labs after 11 weeks my VL count was down to less than 43.   The major side affect with my tx is the itching and rash and the new meds victrelis leaves a awful metallic taste in my throat , I take 4 of the caps 200 mg 3 times a day and the Ribivian 5 tabls per day plus all the other meds that I take for my Type 2 diabetes insulin shoots twice a day.  But right now the tx is working well so I am hanging in there.  I hope your treatment is successsful

RiverRandy

[geow]

Confirmed with my Nurse today that Diaper Rash creme with Zinc Oxide is most widely used for butt itch. It can be found where they sell stuff for babies. Zinc seems to be key ingredient as it is said to prevent 'drying out' of an area. My nurse also said one of her patients used fresh aloe in the irritated area. She had cut some and put in fridge. When needed, she got some of the Aloe goo off the piece in the fridge.

I have an issue with Rage last time I did the tx. Can't remember if it was after 6 months or not. Really went off on a few friends and neighbors. Missy said today she used anti-anxiety drugs when she was on tx. I am going Monday to get a baseline or referral for a baseline, so I plan to be monitored. Really worried about having tx stopped if I get too angry or depressed. While I may hedge my true emotions with those monitoring me, will use these boards, facebook, and AA as a place to really 'let it all hang out,' or to be 'brutally honest.' Last tx, son in junior year and roommate living with me. This time, so far, am living alone. Thinking of getting a roommate, but still have lots of re=arrangement of furniture, and perhaps I just may prefer to be alone. Being able to get someone online, at a f2f, or on the phone usually helps me to calm down. Was a football player in HS, so have little fear of people, and can get pretty aggressive.
Got approval from insurance, am now waiting for the foundation to OK they will cover my co-pays. Nurse said could be 2 days or a week. Thinking will do first shot Friday, February 3. Was gonna do shots on Monday night, but decided since everyone else rests on the weekends, perhaps it's the best time for me to be quiet too. Especially since I have issues with my neighbor, and he is usually home on weekends.

[MissyMouse]

Yeppers, depression was not an issue for me but anxiety was.  And it was not an all the time thing.  So when I started getting feeling of being wrapped too tight I'd pop a Xanax or half a Tramadol and it would take the edge off.  I think it has a lot to do with my personality type.   I'm not one to get "down" but I am one to get impatient and irritate.  I'm an oh so true hyper, OCD type A personality.

Mouse