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Posted 9/29/2011 3:38 PM (GMT 0)
hi pplz. . Ok, i found out last year i had hep c. I was a user in the past, so that really sucked to find out about it after i cleaned myself up. Any ways i have been through the process b4 i start my treatment, and the lead up to it has been a painfull stressfull journey. I am now ready and my injections are tomorrow. I have just completed my CERT IV in youth work, between me and my partner we have three children. . I am scared as hell because i dont really know what 2 expect. I have read about it and how it can affect people but i have been lookin for people 2 talk 2 that have been through this, if any1 could help me please, i would love 2 chat with some1 bout it. Im scared

Post Edited By Moderator (hep93) : 9/29/2011 11:36:53 AM (GMT-6)

Posted 9/29/2011 5:33 PM (GMT 0)
Hi, Phoenix26, and welcome to the forum. I had the same thing happen to me, though I had been clean a long while, from both alcohol and drugs. It just didn't seem fair. At the time I was diagnosed with HCV in '93, the only treatment available was interferon injections 3 x a week. However, after about 6-8 weeks, my white count plummeted, so I was taken off treatment.  about 4 mos. later, I tried it again, this time coming off treatment after only 4 weeks.

Do you know your genotype? If it's 1a or 1b, there is a new treatment available that consists of interferon, ribavirin, and a protease inhibitor. This treatment has a much higher clearance rate in 1a/1b than the combo alone and is taken for 24 wks. instead of 48.

As to side effects: I never took it long enough to have any. Early on in treatment, side effects are minimal or nonexistent. They seem to surface as treatment continues and are varied. Some describe it as having a bad case of flu, being depressed, etc. Before you start treatment, you should be started on an antidepressant.

We do have a few people here who are currently on treatment. Hopefully, they can give you more information about their experience with treatment. It's very important that you get treatment, as untreated hep C can lead to cirrhosis and liver cancer (as it did in my case.) I am currently on the waiting list for a new liver, due to liver cancer and advanced cirrhosis.

I also suggest you read the info in the folder at the top of the page entitled Hepatitis Resources. There's lots of good info in there.

I gave your thread a topic, as this is what the Administrator wants and you will get more responses.

Please keep us posted on how you are doing.

Hugs,
Connie
Posted 9/29/2011 6:04 PM (GMT 0)
Welcome phoenix26 .....me and my husband haven't done treatment ....but with his hepc and new liver it will.be in our future ...but welcome to the forum ..its great for education and support !
Posted 9/29/2011 7:05 PM (GMT 0)
Hi P26--

My partner is 61, has had Hep C for over 30 years. With the older folks, the disease wasn't even "discovered" until long after they were infected. Treatments weren't started, like Connie said, until recent years.

Mike took the Interferon/Ribavarin in 2003. He was on treatment 24 weeks and since he didn't have a huge reduction in his viral load, and because his white and red cells were really really low, they didn't complete the whole course.

The docs did convince him that even though they didn't cure him, that they slowed the disease down, and if and when it got bad, he could have a transplant.

From 2003 - 2010 he continued on his merry way...no treatment. The only problem was a gradual decline in his general health. We know now that it was his cirrhosus gradually getting worse. He was at End Stage Liver Disease by 2010 but since he had continued to drink alcohol, they would not put him on a transplant list until he was 6 months in a documented treatment program -- counseling, detox, or AA. He chose AA and it worked!

Though he became very ill, he survived the wait, got sober, and had a transplant in May 2011.

So...the Hep C took a long time to take him DOWN. Maybe he had a longer grace period because of the treatment, who knows. Maybe he would have a longer free ride if he hadn't continued to drink alcohol.

On treatment he had a lot of side effects. Now that he has been at End Stage Liver Disease, many of the symptoms are actully similar -- advanced Hep C, treatment, and ESLD:

Fatigue
Nausea
Wt loss
Depression
Fever and chlls
The dreaded Hep C FOG -- can't remember quite what you used to
AND acute grumpiness...there were days he was totally unreasonable

Since we knew about all that ahead of time, they medicated him, but not nearly enough in my book.

He could not continue working...though many do.

Some on this site have reported they worked and were not grumpy. I think the dose varies. The does might have been high for Mike...not sure, I can't rembember. I think they did everyone the same then, and now they do it by weight.

Mike's Hep C is back post transplant and his viral load is high, over 50 million units. So he will have to consider treatment again before he ruins his nice new liver.

Good luck,

Post often. We can be very helpful.

Mama Lama
Posted 9/29/2011 10:21 PM (GMT 0)
Phoenix26,

   Welcome to the hep C forum.  I and my spouse have found it helpful.  He is 64 and contracted Hep C many years ago (over 30) overseas from a transfusion (he thinks) when a lion bit him and had to have a steel plate put in his head.  This was before they had even identified Hep C.  Over the years he has had  no symptoms (but did quit all drinking etc in 1996).  As he also had malaria, diabetes and high blood pressure and had virtually no symptoms we were told in 1993 that why treat it if he had  no symptoms (probably not what they would say now).

   He did really well healthwise, watched his diet and kept his weight under control and in 2007 was evaluated by a transplant specialist in Mexico (a friend of his family) and was diagnosised with cirrohsis, but still no symptoms and no treatment, but they were very clear with him that the damage was done and the liver would at some time be unable to work.

   Well, even though he had a few symptoms from 2007-Feb 2011, nothing but a little fatigue and sometimes a little stomach pain.  Then in Feb of this year his health went downhill incredibly fast.

  All the things that MamaLama described in her post, IN SPADES.

We have a friend that was younger and healthier and he did the "treatment" in Phoenix and said it was like a year of having the flu, but worked for him. 

   My spouse was able to "work" until Feb 2011 and now will be unable to work, without a transplant.  Luckily he is close to 65 and Medicare will be a godsend.

   Just wanted to give you an idea of what to expect (in our case, anyway) without treatment....but everyone is different.  I really think that doing away with all alcohol, etc 15 years ago made a big difference for us.  Also, my spouse was able to work around his eating, sleeping and exercising schedules and I think this also helped ward off the disease affects for so long.

   Best to you with treatment.  Should my spouse decide to get a transplant, we will be on the treatment trail also.  On the bright side....we have followed treatment statistics since 1996 and there seems to be so much better results now, compared to then. 

   Keep posting here...there are lots of people with a lot of information they are willing to share....and supportive for those afraid..(all of us).

Angie1953

Posted 9/29/2011 10:48 PM (GMT 0)

Angie, when your hubby got bit by the lion, I'll bet he said it was his fault and not the lion's...because that's what trainers always say.  What a way to contract hep C, though...the bite resulting in needing a blood transfusion.  I always feel really bad for those who contracted hep C through a transfusion. 

Hugs,

Connie

Posted 9/29/2011 11:13 PM (GMT 0)
My husband contracted hep c when he was a baby when he has a full blood transfusion .:..the doctors have never said anything about his viral load and my husband said the virus wasn't active in him at this time but he only did treatment along time ago ....I guess this is a question I need to ask his liver doc ..because I don't want the same thing to happen to the new liver ....
Posted 9/30/2011 3:57 AM (GMT 0)
Connie,
  Smile!! Yes, he didn't blame the lioness.  You are right, the trainers never blame the animal.  He had an act where he put his head in her mouth....and this one time she bit down and puntured his skull with her canines.   smhair

Angie1953  

Posted 9/30/2011 4:34 AM (GMT 0)
Angie, occupational hazard, eh?

 

Elle, they must have tested hubby for hep C during evaluation.  If it's active, they will probably wait until its effects start showing up in blood work before they do treatment.  If he's had a sustained viral response (SVR) from previous treatment, he wouldn't need treatment for C unless it comes back.

 

Hugs,

Connie

Posted 11/26/2011 8:41 AM (GMT 0)
(pheanox) I'm ex user 2, iv been away from the wrst of my addiction 4 bout 2 1/2 year's n i had hep c now 4 about 5, alls i do is about once a year go2 the drs n just get my levels tsted n he normally tells me there fine, but they will fluctuate sometimes(im sure u knw this if ur going 4 treatment) I don't really find it affects me a whole lot now, just have 2 look after myself properly get the right amount of sleep, exercise n eat properly is the big thing n make sure i don't get myself run down, i have let myself get run down be4 n just got the rings around my eyes n yellow lines n felt burnt out a little but all that took is proper sleep n 2 eat properly, but my moms friend had it 4 about 20 years n @ the end of it he woke up puking every morning but there is also more than 1 strain of hep c n it affects evry1 differently, n the longer u have it the worse it progresses over the years, sorry if i rambled on and didn't make any sense.

Post Edited By Moderator (hep93) : 11/27/2011 11:18:17 AM (GMT-7)

Posted 11/27/2011 6:22 PM (GMT 0)
Anne, I've corrected some of your spelling. If you have trouble with spelling, you can refer to my Medical Terms list in the Hepatitis Resources folder, which also lists some regular words. You can also bring up a blank e-mail and write the word there and then spell check. Unfortunately, we do not have spell check on this forum. It is important to spell as correctly as you can to get your meaning across.

If you want to participate in this forum, I suggest you start a new thread (hit New Topic instead of Reply), give it a subject name, and introduce yourself and your situation to others here. Please try to avoid using "computer shorthand" on this forum, again for easier understanding.

Hugs,
Connie
Posted 11/27/2011 6:42 PM (GMT 0)
After reading some of the other comments here, I wonder how some folks communicate in their daily life. When asking or reporting things here on HW, accuracy counts if you'd like an answer. I often hesitate to write back to some of these jumbled posts. Try reading (and correcting mistakes) in what you've written before sending it in. I know what I'm saying is going to bother some people, but this is about life and death decisions. The only way to get good advice is by asking questions that are coherent.
Posted 11/28/2011 12:19 AM (GMT 0)
Uhhh , I had a feeling that this conversation was coming up again ! The spelling gestapo has arrived !!!!
idea Flawless spelling is not a requirement in the forum rules , Yes it would be proper netiquette and beneficial to the person wanting to get a response from some here , But it isn't a requirement for medical treatment in a hospital or in this forum .


A. Ziffle
Posted 11/28/2011 1:38 AM (GMT 0)
I'm not looking for flawless, just understandable.
Posted 11/28/2011 3:19 AM (GMT 0)
David , Have a bit of adventure about you man !!! It's like learning a new language . Example : Peeplz = You and me , B4U = Before You , GOT = Grouchy old turd. smilewinkgrin



A. Ziffle

Post Edited (A.Ziffle) : 11/27/2011 8:26:07 PM (GMT-7)

Posted 11/28/2011 12:27 PM (GMT 0)
Or, *** are they saying...
Posted 11/28/2011 12:36 PM (GMT 0)
Sure they are saying that ...... It's spelled #$^% by the way !!!!!




A. Ziffle
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