"maintanance program"

[papa57]

I am new to this forum. Glad to find a place where someone can relate to what I am going through. Found out I had HCV about 3 years ago. Type 1a & viral load went to 18 million within a couple of years. Been on combination therapy for 7 months. Was informed that it is not working for me. After the hell I have been through with the side effects, I was ready to give it up anyway. My doctor gave me two options. Intensive, high dosage treatment more often or do a maintenance program for at least two years to hold the virus where it is at & hope that a better treatment comes up. I chose the latter.  Now off the oral meds but taking a lower dose of Interfeuron. Side effects so far unchanged. Has anyone had this experience? Does "maintenance" work? Any feedback would be helpful. There isn't anyone around me that can relate to what HCV does physically, emotionally, & mentally. Thanks for your help.
                                                               Jackson

[pug-bug]

hi jackson.........i'm not sure that i have heard of a maintanance program, but that does not mean anything, because i have been out of sink w/ the hepc community for quite some time since i went back out.  i have only been coming here for the last few days.  but i just wanted to thank you for your encouragement that you left for me.  i will keep coming back.  take care friend...........gina

[papa57]

hi gina,
Thanks for the response. It is the first one I received. I have never done much communication this way. It has helped just reading the experience of others. I had never heard of the maintenance program either. I had to get prior authorization from my insurance company to do it, since it is not really treating the virus. It is supposed to just hold it where it is at. The combination therapy was unsucessful for me so I'm supposed to stay on this regiment until a better treatment option comes up.
It has been very hard not to let HCV define who I am. I have to remember it is what I have, not who I am. Thanks to you as well for the encouragement. Hope you have a great weekend.
                                            God Bless,  JACKSON

[Penney]

Hi guys,

Well that makes three of us who have not heard of maintenance......I wonder if there is some other member of this board who has heard of it?

I hope you destroy this disease Jackson, you are in my prayers........When were you on treatment?  Was is Pegasys?

New treatments are being worked on all the time!  

Take care!
Penney

[OZ]

There was some big multicenter study recently published . . .  the HALT C trials over a period of 4 years starting in 2000.
You can read a little about it here.
http://www.liverfoundation.org/db/articles/1024
http://www.natap.org/
You can also do a search under google for many other references.

Donna

[papa57]

Hi Penney,
Yes, I had been on the PEG-Intron and Ribavirin for seven months when they told me it wasn't going to work for me. The blood profile after six months showed a normal enzyme count and a drop in viral load from 18,000,000 to under a half million. That sounded great to me. The doc said I needed at least a 2 log drop to be successful, which meant the viral load would need to be under 180,000. (More new terminology for me.) He discussed a more powerful injection of three interfeurons mixed together done at least three times a week in combination wth the Ribavirin. Said there would be about a 20% greater chance of success. Side effects intensify with the increased therapy. I would have done it, but then he suggested the maintenance therapy. Tonight will be my second week of taking a lower dose of Peg-intron & I have been off the Ribavirin for two weeks. The goal is to hold the virus where it is at & see if any new treatments come up. I left that Dr. appointment feeling like crap. It was like they pulled the rug from underneath me & stole my hope. But then I remembered the doctor does not factor a God into his equation. The prayers are really what has gotten me through this so far. I thank you for yours. Have a great day!        JACKSON

[bigdog50]

Quick background -- cintrated HCV thru a tainted blood transfusion n 1981.  Was sick as a dog for 3 months -- no effects over the last 20+ years -- except its in there damaging the liver.  I started treatment  last year and have SIX WEEKS TO GO!!  To try to answer some of your questions--

All the crap you feel has been due to the treatment sides.  I lived a real normal high energy life with this bastardvirus in me for all these years except for the hidden damage it was doing to the liver.  You still feel like crap because you have only been of some meds 2 weeks and still taking Inter.  Even those that stop all treatment can have 4-6 weeks to get all the poison out the body -- thats what the treatment is -- poison killing the virus and making you feel mentaly and physically like brained-fogged weakling.

ANY period of treatment and reduction viral loads helps buy the liver time to heal so any treatment buys more time even if it doesnt work.  Yes, new treatments are coming out soon, with less sides and higher success rates and free studies are out there where people can get into them and pay nothing for the treatment -- thats what I am in.

The KEY to the treatment is a POSITIVE attitude and outlook and fight letting how you feel get you down,  Take anti-depressants.  And stay mentally positive.

Best of Luck

Don

[Penney]

Jackson,
I loved the statement about factoring god into the 'story'  You made me smile and I felt a calm serene when I read that.  Sometimes I need that reminder...thanks!

Don,
wow 6 weeks....you're nearing the end!  Good for you!  Yep, the treatment is a very tiring and irritating experience...but just a temporary one......I totally agree with your comment about staying positive!!

Take care!!
Penney

[papa57]

Donna,
Thanks for the link to the HALT C trial page. It makes a  more sense to me what the goal of continuing treatment is. The doctor really didn't expain what outcomes to expect. He is a specialist & a virologist, but I get more info from his P.A., when I can talk to her.


Hey Don,
Thanks for your comments. Good to hear that you are almost through with the treatment. I get so much encouragement from people that have made it through. I know now I am still detoxing from some of the meds I stopped taking. I have that nagging little pain under the ribcage. I had to ask the doc about it because it was starting to freak me out. He said the same thing. Still feeling fatigued, but making it to work daily. Pretty well shot by the time I get home. I do believe in keeping the attitude positive. I see people every day that are in much worse shape than I. Tried several anti-depressants before I found one I could tolerate. It helps, but has added to the insomnia. Now I am using herbal supplements (tea & Valerian) to help me get some sleep. Seems to be working. Also taking high dose of Vit B12 for energy. Like Penny said, this is a temporary setback in our lives. Best of luck with the completion of treatments.
JACKSON

[OZ]

Watch the valerian, unless of course it is ok'd by your doctors.
Can cause liver damage.  I saw it on a list of herbs to avoid over at the 'hood.
http://www.hepatitisneighborhood.com/content/treatment_options/food_and_nutrition_800.aspx
You have to register to read the link so I will copy it.

Herbs to Avoid
  Article Date: 7/7/2004


Dietary supplements, including herbs, routinely enter the marketplace without undergoing a safety review by the Food and Drug Administration (FDA).  

Although there is no established system for gaining information about the risks of dietary supplements, an increased number of reports of adverse reactions to dietary supplement products has recently been recognized.

Many sites on the internet offer lists of  "bad herbs," but very few cite references, so the consumer is left to question the validity of the information.  

In this article, we will identify some herbs known to cause health problems, including liver disease.  

Additionally, we will provide references to clinical studies of each herb and brief excerpts from the studies' abstracts.  The following herbs are presented:

Aristolochia (Guang Fang Ji)

Atractylis gummifera (African Herbal Remedy)

Calliepsis laureola (Impila)

Cassia species (Senna)

Chelidonium majus (Greater Celandine)

Crotalaria species

Ephedra (Ma huang)

Heliotropium species

Larrea tridetata (Chapparal, Creosote)

Lobelia (Lobelia inflata)

Lycopodium serratum (Jin Bu Juan)

Mentha pulegium (Pennyroyal)

Pausinystalia yohimbe (Yohimbe)

Piper methysticum (Kava-kava)

Salix species (Willow Bark)

Sassafras albidum (Sassafras)

Senecio (Gordolobo yerba)

Symphytum species (Comfrey)

Teucrium chamaedrys (Germander)

Tusilago farfara (Coltsfoot)

Valeriana officinalis (Valerian)

[papa57]

Hi Donna,
I have a tendency to believe herbal remedies are safer just because they are not prescription. I am finding out that the herbal stuff can have some side effects also. My wife is HCV positive also. She has had some success with herbal therapies & her viral count is still relatively low. But the things that have worked for her have not worked for me. I will ask the doc about the Valerian. Had to take four last night to get some sleep. Thanks again for the info.    JACKSON

[meganc]

Hi, my name is Megan and I am new to  this forum. I live in South Australia. 18 months ago I did 4 months of pegasys but did not get the two log drop. I have level 3 fibrosis. In Australia not a lot is known about maintanance, and have heard specialist here say they don't think it works. I am keen to here of anyones experiences. I'd like to be able to slow down the progression of liver disease before it gets to out of hand. With thanks, Megan