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Avatar universal

new to treatment

After 3 years of a dr refusing to treat the hepC 1a, I've found a dr that will.
To say that I'm scared to death is an understatement. I'm 56 with other health problems like COPD, High blood pressure.

I have a huge virus load and have had this for, the thinking is, almost 30 years.

Tell me the side effects are worth this treatment.
Thanks

12 Responses
87972 tn?1322664839
Hi there,

Sure; in my opinion, the side effects are well worth the treatment. Do you know how much fibrosis you have? Have you discussed which treatment drug you’re going to use?

Sorry to hear you have other problems as well, but there are lots of us in here with other things going on. Many of us have had to treat more than one time, too; Genotype 1 can be persistent sometimes.

Not everyone gets trampled by the meds; I tolerated them fairly well; and I treated twice, and for many weeks. Tell us more about yourself; there are quite a few folks in here that will help you find your way through this--

Bill
419309 tn?1326506891
If you have other conditions, it doesn't necessarily excluded you from treatment. I would definitely recommend that you talk to your pulmonary/cardiac docs or whoever you see for copd/high blood pressure about hcv treatment as well -- if you have other health issues, it's important all your docs are on the same page as the doc treating you for hcv.  My husband has cardiac disease, hypertension and high blood pressure but was cleared for treatment (after recommended testing by his cardiologist and other docs).

My husband is a geno1 and was also very hesitant about treatment when he first learned about it.  In the end, he found it a risk worth taking after weighing the pros and cons of his situation.  He started treatment last fall, though we don't know what the end result will be for him for a while.  We hope to be able to say that it was all worth it.  He's finished shot #26 and it's been a bit of a bumpy ride, but he plans to do at least 48 weeks, possibly 72 if tolerable.  He had a very high viral load at start, over 17 million, and with treatment it has been undetectable for 3 months.  Hope that helps.
~eureka
ps  most people are scared when they first learn about the treatment, but the more you learn, the less frightening it is.  welcome to the forum, and best wishes.
Avatar universal
I went in today to talk with the nurse clinician. My load is 24 million and they want a liver biopsy first to determine how much of the poison to give me.
I had been seen by another big time specialist going on 3 years and he denied me treatment so I had to demand a referral to someone else.
This dr didn't even do an ultrasound much less a biopsy.
3 lost years and getting sicker with it all the time. I'm 56 now.

Their thinking is I've had it for about 30 years and are very concerned. Thank God someone finally is.
I have geno 1a so I know it's not going to be pretty and I might never be cured but at this point, I'm keeping miminal expectations hoping for the best even if its a big drop in the viral load.

There are docs out there who are medically rationing this treatment because of the cost to be borne to heath insurers. I'm positive because of my age at the time of being over 50, this treatment was denied.

I was further pissed off by the new staff making apologizes for the old dr in his neglectfulness saying this and that...but it boils down to what it was, no treatment ..no true diagnosis of the extent of the virus in my liver because he was dead set against any treatment. All he did was run a liver panel.That's it.
Shameful.
They have no problem with treatment. Now it's just a matter of finding out how much they need to give me...I'm sure I'm going to be blasted with it which is fine with me.
I wanted it in the first place, highly motivated and still even more so today.

I will write letters of complaint to my state board of medical ethics over this.
He can tell them why he wasn't curious enough to run a real test other than a liver panel and base my outcome on that.
Nice, huh?
Thanks for both of you for commenting.
I'm not scared, I'm mad.
87972 tn?1322664839
Whoa! Try not to expend your energy on anger; it isn’t going to cure you :o). Depending on the extent of damage (fibrosis), it *still* might not be in your best interest to undergo treatment. But I agree you should be offered an option. Some people just don’t seem to get progressive liver disease with Hep C. For them, it might be better to wait and if some of the new medications will help.

Genotype 1 is difficult to treat successfully with the current medications; however, there are new meds in late stage clinical trial that appear to be much more efficacious. The two closest to approval at this point are ‘Teleprevir’ and ‘Boceprevir’; you can do a search for them for comprehensive info. They’ll be added to the current meds, and appear to increase efficacy from 45% to about 65% in genotype 1 patients, and will potentially reduce the exposure to interferon by up to six months.

Try not to put too much weight on your viral load; while it sounds scary, the viral load isn’t critically important; unlike with some other viral infections (HIV, HBV,etc.). It’s most important function is to act as a barometer to treatment; it will help determine the rate of response, and doesn’t necessarily correlate with disease severity.

Continue to read and ask questions; getting informed is your best defense. Good luck with your biopsy results, and let us knw the outcome. There are some very supportive folks in there that can help walk you through the process, so stay in touch, and take care—

Bill
179856 tn?1333550962
My load is 24 million and they want a liver biopsy first to determine how much of the poison to give me.

How large your viral load and what stage of liver damage you have have really nothing to do with the amount of meds you get.  That is more determined by weight.  As for viral load it really means nothing believe it or not. I had a very low viral load but had a much more difficult time clearing than many, many people with a large number so I had to extend my length of treatment in order to get SVR (cured). It sounds senseless but it's true. Generally we only watch the VL when we are on treatment (tx) so we can see how fast it goes down and when we are considered undetectible (UND). That is crucial to determining what our chances of success really are.

The biopsy sounds scary but it's really not, of course you won't believe that until you actually go through it yourself just like the rest of us. They'll give you an ultrasound too but these are separate things and you need them both.

Many of us have had this disease as long as you (I personally had it 20- 25 years) I did not however live a very healthy life and was already stage 3 when I was diagnosed. I had to treat. You however might have very little damage and determine to wait (although it sounds like you really want to - I would have treated even if I had no liver damage just to get rid of it).

Ask as many questions as you have. The people in here are so wonderful. Without them and their knowledge (MANY who know far more than a lot of doctors out there who are NOT up to date on the latest advances) I would not be cured today. I have no doubt of that.

Get hard copies of all your tests so you can learn how to read them. Just post them in here and people will explain. The feeling of power from learning and the knowledge will come in crucially handy for you later.

Good luck.
254544 tn?1310779332
I agree with Bill.  Don't waste your energy on the anger, you're going to need every ounce of your energy to deal  with your h ep.

I do know somone that has COPD, is a geno 1, did 48 weeks of treatment and unfortunately relapsed.   If you want to get in touch with her she goes by the user ID "Kristi" and can be sent a message through hcvanonymous.com.  I do know that "Kristi" had a very hard time doing treatment and her breathing issues were compounded by treatment.  This gal continued to use her steroidal medication and I sometimes wonder if that contributed to her  relapse.  I have RA and they would not let me use  steroidal medication at all during my first round of treatment.

Unfortunately I have not heard from "Kristi" in about 6 months so I'm not sure what course she took after her relapse.  I do know that that she had a lot of issues her blood work post treatment and she was having a rough time.  Anyway, she might be able to give you some insight on treating while dealing with COPD.

Mouse
Avatar universal
I went thru the anger as well as every Dr. I wnt to said I was fine. I just went to the top Heptologist in my area and he does not want to treat even eith my VL of 15,300,000 1a. I will go thru a biopsy and see where my liver is at and then we will decide if tx is the thing to do. I have other issues like joint swelling and pain and he said there is a possibility that this could become worse to the point of unbearaable with tx so I will wait and see. I have had Hep. C for over 25 years and I am hoping it is slower than me. This genotype is the toughest to treat so I am not really sure I want to if I dont have to. Best wishes.
Avatar universal
I know how anger is a negative force. I have managed to keep them seperate from the issues I'm facing.
I have complete confidence in this new doctor and his very able staff. This is a one step at a time.
The biopsy will be done on Thursday; that will be out of the way.
I've been busy make preparations for the treatment. Cleaning up a lot of loose ends that needed being done.

I have never seen the Micheal Moore movie on the medical/insurance business but I'm putting that on my list of things to do while "being on the couch."
I'm setting up a pile of books that I havent' had time to read and stocking up on yarn and fabric for those times I'll feel good enough to do something.

I have no illusions. I do know there are brand new treatments available and that makes me a little bit more upbeat.

My joints are already involved and the COPD steroid treatment; nebulizer will have to be discussed.

i've got a chronic pain syndrome from herniated discs and nerve damage down one leg.
It will be interesting. Maybe I'll journal it and write Oprah. The public really needs a good education about this disease.
i'm so ashamed to have it. I never did drugs, was a good girl all the way around.
Joined the Navy at age 18.
The only things bad to happen was a big transfusion at age 21, early 70's.
People need not to be ashamed to talk about it. There is such a stimga about it.

My blessing are many. i have a great family, very supportive and I'm surrounding by a loving group of canines. Having dogs and enjoying that joy goes a long way to uplifting ones spirits.
I really don't want to have to take an antidepressent for that part of the side effects.
That bothers me.

The anger part is going to be dealt with as well. Sitting down writing my state board of medical ethics will solve that part of it for me. Doctors need to know that they have to start evaulating their patients and giving them everything benefit of the doubt.
It's our lives they are playing fast and loose with, not theirs.
Letter writing is one way I have to get it out of my system if for no other reason than they will have to investigate the complaint and maybe just maybe, this doctor will rethink his arrogance in making snap judgements based on lab reports.

Thanks again...I'll let you know about the biopsy. Anxiety doesn't begin to discribe my mental state.

Moonbaby
87972 tn?1322664839

All the best to you, Moonbaby. Let us know the results of the biopsy, and stay in touch--

Bill
Avatar universal
Tell me the side effects are worth this treatment.
--------------
It's not black and white. For some they are, for some they may not be. That's because not everyone has the same urgency to treat and not everyone ends up with the same side effects.

Your liver biopsy will tell you how much (or how little) damage has been done to your liver. Only then will you be able to fully evaluate/decide whether the potential risks of the treatment drugs are worth your individual odds of being cured.

You seem to have confidence in your doctor which is good but after you get your biopsy results my advice would be to get a second opinion from a liver specialist (hepatologist) unless your current doctor already is one. A gastroenteroloigst may be a wonderful doctor in most cases they are simply not up on the latest studies and protocols.

-- Jim
Avatar universal
My new guy is one of the hepatologists within the gastroenteroloigst group.
I fell strangely confident with him.
Any body have any social security issues they'd like to share. I haven't been able to work in 5 years.

408795 tn?1324939275
i've got a chronic pain syndrome
from herniated discs and nerve damage down one leg. I'm 56 with other health problems like COPD Chronic obstructive pulmonary disease Copd (chronic obstructive pulmonary disorder)
Smoking and copd (chronic obstructive pulmonary disorder), High blood pressure Pressure ulcer. Anxiety doesn't begin to discribe my mental state.
----------------------------------------------------------------------------------------------------
From the information that you've posted, there may be a legitimate reason why that first doctor wouldn't tx you.  Personally I would totally look at the bigger picture b/c what ails you now may turn into a bigger problem during tx and if that happens you really want to be prepared.

I am not trying to discourage you from txing your HepC but you do need to be aware that doctors don't feel the sx's and some of them are more than willing to tx anyone who asks for it without delving into other aspects of the patients health.  That's why this forum supports the idea of educating ourselves prior to tx, that way you can advocate for yourself while you are on tx.  good luck to you
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