help? potential post treatment side effects frightening me,

[youngladywfear]

i've been reading some pretty scary stuff about how after treatment peoples lives have been ruined by it. like permanent severe joint pain...well my hands are the medium for what i do and with constant joint pain i'd be devastated and i wouldn;t know how to deal with it...scary stuff. i'm wondering what long term side effects of the new PIs would entail...? i'm still trying to decide whether or not to wait and use them when they come out instead of just the current SOC in hopes of less treatment time, maybe then less chance of long term side effects?...i don't know. i'm just really freaking out here with these long term side effects and i guess i have to look at it like it's better than liver cancer and possibly dying but some of the long term side effects people are dealing with are making treatment hard to face...got any encouragement for me? please?

[oldhepper]

Why did you stop? Are you clear now? I saw on one of your previous posts that you're geno 2b. I am 2b and considering tx.

Thanks

[nygirl7]

The side effects of the treatment also petrify me. Did "

What sides of the biopsy?  A biopsy is a pretty straight forward easy experience that is painless but boring.  Once you have it done you wonder then what could you possibly have been so worried about as it doesn't hurt anymore than a regular needle.

But nobody believes it until they experience it for themself seems to be the truth.

[newleaf09]

I was very responsive to interferon so TX beat me up pretty good.  SVR in Nov. '09.  In the long run, after rejoining the doctor dance, a number of the most distressing things that I originally attributed to TX do not turn out to be related to TX.  My joint pain was a  flareup of an old injury, fixed now because I went to the orthopedist.  We see a lot of unhappy post-TX posts here that may be the same situation: other health problems that have been masked by the intensity of Interferon/Riba therapy.  You just decide to investigate post-TX problems as they come along.

You are about half my age and hopefully have no other issues except HCV.  You are, timewise,  much closer to when you were exposed (my exposure was 38 years before TX) and they say the odds of success with no after-effects are much, much  better for you than they were for me.

[niuska]

Dear Friend,
I am in the same situation as you are. I am 27 and found out a year ago that I have this horrible virus. I am just getting myself together to overcome the fear of biopsy. The side effects of the treatment also petrify me. Did you have biopsy done?
My treatment would last entire year. Please let me know what you decide. You said your appt is this Friday, right?

To everyone:
I saw few posts where the tx was repeated and unsuccessful. Did you do it because the count was so high or to try out a new drug. I am sorry If I am not asking right questions, I am fairly new to this subject.

[Duke3d]

I treated for 6 months and had mostly minimal side effects during treatment. WIthin 3 weeks post treatment I was back to normal. To date I see no lasting side effects.

On treatment I had no shot reactions, no depression or anxiety and did not take meds for either.

I was still clear on my 3 month post treatment test.

[epiphiny]

I just want to add my voice to the otherswho are saying they have had no long term side effects.  I am 11 months post and I am feeling good!  And especially good because I SVRed and so many of my pre tx issues (fatigue and constant sniffles and infections mainly) have gone away!  I feel I have a second chance at life!

I treated twice, once for 24 weeks, second time for 48 weeks.

[cb867]

I am 51 and have no post side effects. Just the norm for getting older it's really not that bad. I stopped in mid Dec and now I don't feel any different than I did before.
Good Luck

[Trinity4]

If or when you choose to treat it's important to discuss what your doctors position is regarding helper drugs such as Procrit for hemolytic anemia and Neupogen for low ANC.
These are fairly common side effects from the treatment drugs and doctors differ as to the threshold at which these drugs should be prescribed.   Often times, the blood values can go too low before the helper drugs are prescribed and interferon/ribavirin dose reduction is the only option for continuing treatment.  It is especially important dose reduction does not happen within the first 12 weeks of treatment so make sure your doctor is proactive when it comes to rescue drugs.

Also, a 4 wk PCR is important even with genotype 1.  If the viral load is not dropping adequately by 4 weeks, tailoring treatment is an option such as increasing the ribavirin dosage for optimal results.  You want to see a good hgb drop early in treatment.  Personally, I think my dosage of 1000 mg of ribavirin was not sufficient because I never experienced a big drop in hgb.  Even though I was taking the prescribed amount for my weight I feel my body did not metabolize it effectively and I could have very well tolerated a higher doseage.  Who knows, that could have been my ticket to SVR.

Just a few thoughts.

Trinity

[susan400]

While there is a period of time post treatment, that you have to go through in order for the drugs to thoroughly clear out of your system, not everybody will get a substantial amount of post treatment issues.  I've never had any RA, arthritis of any kind, or autoimmune issues and I've treated 10 times!.  However, during treatment I did have some problems with muscle/bone pain..., but that is common to experience during treatment..., once again, not everybody gets that.  Bill is right in that Inferferon has been around for a long time.  Ribavirin has only been around since about 1995, but it has been used by enough people for a long enough period of time that there is much documentation around about that.  To the best of my knowledge the amount of people who ever do develop RA or autoimmune problems is not very many compared to the amount of people who NEVER have these issues.  There is alot more noticed with mood problems than with joint problems.  If you are concerned about the new PI and unknown side effects then, don't wait for the PI's and try the SOC- prescribed your regular hepato/gastro Dr..  None of us can guarantee you that the PI's won't cause these problems in 100% certainty, because quiet frankly, they are still being studied and haven't been around long enough to know about these things.  I am not an expert by any means, but I have treated more than the average person.  As always, discuss these concerns with your doctor and make an informed decision with that in mind.  I am sorry that you are experiencing so much anxiety about TXing.  If you put it into another perspective, none of us has any guarantee's in life.  Think about it, Hep C could be a non-issue for some and then, they could get colon cancer, or get struck by lightning.  Then, again, Hep C could be a major issue for other people.  If you are a women of faith, then, you might try to pray about your decision.  If you don't have any particular religion, then just weigh all the pro's and cons-take the advice of your doctor into consideration, and then, do SOMETHING or, don't do something.  But, worrying about it won't help you any....    IMHO.   Susan400

[desrt]

Ask your doctor at what point she would Rx epogen or neupogen if your blood counts drop.
Ask how often she does CBC, CMP, and TSH testing.
Ask if she recommends starting an SSRI (anti-depressant) before starting tx.
Ask if she has alternative strategies for dosing if your viral load drops slowly (i.e. not EVR or RVR).
Or, if she would pull you off SOC to wait for triple therapy.

[Bill1954]

If your doctor has suggested treatment for your HCV, that tells us she’s weighed the benefits against any relative risk.

I suppose I’d ask her:

How many people does she treat for HCV on a regular basis; and what sort of problems to they report? Short or long term?

Given my particular genotype, what are my statistical odds of successful treatment?

What might be the result of NOT aggressively managing my HCV; what other options are available?

Ask her if she can give you a list of side effects *with* a corresponding list of side effects from placebo to study. This is very important. I can guide you to a manufacturer’s list of side effects and complications; however, they don’t present it with a comparative list from those that take a placebo/sugar pill.

These are only a couple of questions to start with; others will chime in with more, hopefully.

Again, there is exhaustive data on IFN/riba from both clinical trials as well as post-market experience; and while there are some rather nasty issues with them, they are pretty well documented. The decision boils down to weighing risk vs. benefit; your doctor is *much* better prepared to help you weigh this objectively than an internet forum.

Have you spent any time reading through Janis and Friends? If not, scroll down through this page, and be sure to review ‘other HCV information’ located in the right-hand column of the page:

http://janis7hepc.com/have_you_been_just_diagnosed.htm

You’re on the right track now, and there probably isn’t a big rush for you to sign up for any of this. If it takes six months or a year to make these decisions, you’ll probably be fine. I’ve been reading about this bug now for several years, and continue to be amazed at what I *don’t* know; so don’t expect to have all the answers you’re looking for in a few weeks.

Take care—

Bill

[youngladywfear]

and my appt to see my doctor is this coming friday march the 19th

[youngladywfear]

i am the type of person that can take something and really scare myself to death with it, even though it is unlikely. usually once i finally just face it, i realize that i was over reacting, this is especially true when it comes to my health. i have issues about getting sick, or catching something, probably a result of the time where i abused my body and my mind. now that i'm no longer participating in high risk behaviors, in fact now i'm afraid to do things that to most people don't even seem risky. i battle with the thought of treatment on a regular basis. hep c has become like a dark cloud looming over my future. and i agree with you trinity, my health is my priority. my dad is constantly reiterating the importance of treating this disease in order to go on with my life. i am in total agreement. i think about it all the time. how will i have a future if this disease wins? so i know i have to try to beat it. bill, you're right. i need to know what questions to ask my doctor. this site has been invaluable to me, but i've also seen some scary stuff here. its here i was reading about post treatment/ long term effects, but i also noticed the things you were saying trinity. about age and possibility of other contributing factors. i also noticed that none of the people that seem most informed about this whole process had posted anything in those forums. thats why i posted this here, and the replys i got were from some of those people i believe, so that in itself made me feel better.

so bill, or anyone, what maybe are some questions i could ask my doctor that could help me feel better going into this? if you guys help me with that, i will print them and take them in to her. she is really great and will undoubtedly answer them for me to the best of her ability.

thank you!

[rexx73]

i treated 48 weeks,and i did not clear the virus,but i feel much better than i did befor the treatment,a lot better.

[Trinity4]

I treated 72 weeks and have no post tx issues.  I expect a little more stiffnes in my joints because I'm almost 2 years older now and had some mild joint pain prior to treatment.  Many who are treating or have treated are baby boomers and health issues are going to happen regardless of whether we have hepc or have undergone antiviral therapy.

There is no sufficient documentation that states someone is likely to have less problems post tx with 24 weeks of exposure to interferon versus 48 wks or even 72.

As Bill stated, we do not know the long term issues associated with the PI drugs but I'm sure there will be especially if the issues are common among all those who have treated with them.

What is certain is that the PI's give us better odds of acheiving SVR.  I am currently waiting for them to become part of SOC.  I will be the first in line to start treatment again and have no concerns regarding long term issues with a PI or additionall exposure to interferon.  What concerns me the most is the possibility of a dimished quality of life caused by cirrhosis which will eventually lead to liver transplant.

We all have our priorities and mine is to rid myself of this virus as soon as possible.

Good Luck with whatever path you choose.

Trinity  

Trinity

[Bill1954]

Dsert offered very good thoughts above; I couldn’t agree more.

The vast majority of us don’t suffer long term side effects; however, there are a few that develop autoimmune issues: hypothyroid problems, autoimmune hepatitis, possibly some forms of RA, things like that. They are exceedingly uncommon; discuss this with your doctor and ask him for a list of these issues, and how many people get them in terms of percentages.

From a personal perspective, I did two courses of treatment for a total of 152 weeks. Both times, my labs normalized within 30 days post treatment; perhaps sooner, but these were the first time they were checked. I did have to cope with some residual, mid-level clinical depression for a couple of months after the last Tx. I also abruptly stopped taking an antidepressant at the same time; so in hind sight, I’m not exactly sure what to attribute the depression to. Keep in mind I dealt with periods of chronic depression long before I ever had to use interferon.

You’re also hearing from people in here that for the most part have had issues. Where are the voices from those that did their courses of treatment relatively unaffected? They went about their business without any remarkable issues, and didn’t require a support forum. My point is that those that don’t have problems are less likely to post in here, and are therefore under represented; we don’t hear many of *their* stories.

Interferon and ribavirin have been around for a while now. Most of the side effects have been documented in exhaustive, closely controlled clinical trials; and are readily available to your doctor. If you have questions regarding safety, be sure to inquire; unfortunately, sometimes the hard part is learning to ask the right questions. That’s where this discussion group excels; we can help you generate the appropriate questions for your doctor.

Regarding the PI drugs, those are still experimental; and far less is known about long term issues. They don’t have an eighteen year track record behind them, but they’re being studied closely right now. If I had concerns about safety issues, they’d be more focused on the protease inhibitors than IFN/riba.

Good luck with your decisions; this forum can help you gather your thoughts, but be sure to consult with your doctor as your final resource. By the time your done researching, whatever conclusion you end up with will be coming from a youngladywconfidence :o)

Best—

Bill

[desrt]

The pattern  I've noticed with posts about how interferon ruined this or that is (generally):

a) The person posting is trying to sell an alternative treatment or is associated with someone trying to sell something.

b) The person has other health problems they are in denial about and is using interferon as a scapegoat. (i.e. The 300 lb. smoker who thinks interferon caused his neuropathy, the person who is exposed to toxic chemicals in his workplace everyday but is sure it's the IFN that's causing his health problems, etc, etc.)

c) Treatment was Rx'd by an MD who was indifferent, incompetent, or ignorant.

When you read the hysterical anti-treatment stuff, dig a little deeper into who is posting and how their story holds up. Then compare it to the postings of people who say they are happy they treated. Not saying tx isn't some heavy medicine and you shouldn't go into it with your eyes open. Just that there's a lot of fear-mongering on the 'net.