why not get treated???

[Mommyof3_79]

I am the daughter in law of a 55 year old female diagnosed with Hep c type 2b.  Her hep c is "active" and she is refusing treatment.  We are trying to encourage her to move forward but she is very set in her ways and its her way or the highway so to speak.  Her viral load is over 2 million, and she has been in the hospital twice this past year for complications from her hep c, she has had 2 close calls with pancreatitis, Im not sure if that has anything to do with the hep c, but I do know it aggrivates it.  She gets these horrible blisters that pop up on her hands and arms,  they are so bad that she literally has to wear latex gloves to keep the pus from spreading on contact.  this is scary because I have small children that want her to hold them all the time and she isnt allowed to hold them unless she is wearing gloves or bandages. Her attitude is " everyone is gonna die so why fight it"  this really cuts us to the bone to hear her say that, she has 6 beautiful grandchildren that love her and dont want to loose her!!! So my question to u is: is the treatment course really so bad that someone would refuse it because its so hard.  She says it almost killed her and she wont go through it again.  Her doctor has told her numerous times is the treatment doesnt kill her the virus will!! AND SHE STILL REFUSES.  So I am just trying to be supportive but I cant until I know that she is making the right decision.

[freenikita]

Hello Mommyof3

bill 1954 and Tashka gave great advise. I do not have much to add except that i agree with both: trying to get your mother in law online and speaking with people around here could be extremely helpful. It makes a world of difference when you are sick to know that you are not alone and to receive advise and comfort from people other than medical specialists, people who actually are living the same experience...

[Mommyof3_79]

No her bipolar did not fluctuate, and I am very supportive that is why I am here, I am trying to be very supportive. I agree with her doctors, I love her very much and I am very concerned for her health.  U have to know her to understand her personality. She is very set in her ways and thinks everyone is just trying to be mean when they offer advice. know what I mean, im not being mean im just trying to help her see that her family loves her and her grandchildren want her to be around to see their milestones and see them grow. She lives with us in our downstairs apartment and we support her.  We are very close, we do everything together, grocery shop, shop for her grandchildrens birthdays, we eat our meals as a family,  We are as supportive as we can be, as supportive as she lets us be!!  I do understand her side and I did see the impact it had on he health I just support the doctors point to!! We think she can overcome this with different approaches and less aggressive treatment as before. WE just want the best for her.

[tashka]

Sorry, I didn't see your previous post for some reason. I understand now that she tried treatment recently.

Ask her about the biopsy. Did her bipolar get worse during treatment?

[tashka]

Can you tell us when she was treated? Did she relapse or just didn't respond?

Did she have a biopsy and what is her stage? I think it could benefit her if she joins this forum and talks to some people who treated before or are treating now.

But you have to understand that refusing to undergo treatment is her right as a patient. You can only be supportive, maybe talk to her or suggest things. But it is only her decision. Fortunately, you didn't have to take these drugs, and it is hard for you to understand what some patients have to deal with while on this treatment. And it is heartbreaking to go through difficult treatment and still end up with the virus. Especially if she says that treatment almost killed her, I think, her side effects were very severe. Talk to her and ask what happened. Try to understand.

[Bill1954]

The interferon/ribavirin simply isn’t a pleasant experience, but tens of thousands have completed it successfully in the past without significant ongoing issues. It does cause psych problems in some patients; but depression and anxiety can be managed to some extent with medications like antidepressants, etc.

I personally completed 152 weeks of therapy before I achieved success, so I have some experience behind me, and feel somewhat qualified to discuss this. It ain’t easy for most of us, but in the end it’s worth it. Have her stop by; she’s welcome to flag me down, and others here will share their experiences with her as well.

She can probably get relief from the PCT (if that indeed is what she has) regardless of her HCV status; minimally, it’s aggravated by sunlight, so suggest she cover up and keep out of direct sunlight until she gets to the doc and discusses it with them.

Again, good luck to you and your family,

Bill

[Mommyof3_79]

Yes she started treatment last year but quit into her 12th week, she said it was too hard and it almost killed her.  She has other health issues that also plague her.  She has COPD, and she wont stop smoking.  She has severe bipolar disorder, and takes a numerous amount of medications on a daily basis,  Im not 100% sure that some of these medications are necessary.  She has been on them since childhood and I believe it is more of a addiction than a need,  Her sister also suffers from HCV the same genotype and a similar viral load and is currently undergoing treatment and is constantly telling her how much she is suffering and just doesnt think she can make it!!! Its kind of sickening because she is just wanting pitty and is acting childish and its hurting my MIL more than helping her.  She believes that the treatment will kill her because that is what she is being told so as u can see there is alot more going on.  I will definatley look up that PCT and give her the literature, I will suggest she become a member here and let her talk to some of u guys and maybe if she sees the success others have had it will inspire her to move forward as well and to see that what she is being told by her sister is nothing more than bologna!!!! Thank u bill for the advice.

[Bill1954]

It sounds like your mother-in-law has Hep C (HCV) as well as Porphyria Cutanea Tarda; this would account for the raised blisters on her hands. If this is the case, she might get relief from the PCT by simple phlebotomy, or bloodletting. They’ll drain small amounts of blood from her on several occasions until her iron becomes controlled:

http://en.wikipedia.org/wiki/Porphyria_cutanea_tarda

Then, if she’d manage her HCV, it’s likely not to be problem in the future.

It’s surprising to hear she treated her HCV previously and relapsed; genotype 2 patients have a very high success rate; over 80% will beat the virus the first time. When was her treatment; was it prior to 2000?

Her viral load is relatively unimportant to her treatment decision; it doesn’t necessarily correlate with disease severity or progression.  She’s actually fortunate to have genotype 2; while it doesn’t translate to less side effects, she only has to endure 24 weeks therapy, vs. the 48, 72 or more weeks of therapy for other genotypes.

She may benefit from the advent of ‘rescue’ drugs used now; there are drugs that can be used adjunctively to increase red and white blood cell production to help keep the patient less anemic and on full dose HCV drugs for better long term efficacy.

Why not suggest she stop in here and chat with some of us that have been through treatment before; she might pick up tips and techniques to help her through it all?

Good luck to everyone involved,

Bill