3 years SVR, feel worse than ever, 2b was stage1

[aquarius64]

i used to be on this forum quite some time ago, in 2007. i was  2b with Stage 1 Grade 1-2. My gastro said to do tx because i'd probably clear for good.  i did clear by week 4. i never had any side effects from the HCV before tx. if i never would have found outi was HCV positive, i probably would not not have known. life was great. now 3 years post inf with riba, life *****.  by the 3rd month of tx, they reduced my INF to 90 instead of 180 due to extremely low platelets and WBC's. i had to get injections of procrit.  they extended my tx to 1 year due to the INF cutback.  i suffered low HGB in the first 2 weeks of tx and got shots for that.  i had side effects from tx, including my bloodwork being out of whack, fatigue, occasional nausea and became an introvert.  i lost weight (20lbs and i weighted 140 to begin) and hair loss came at the 8th month as well.  then, in the 8th month of tx, i developed pneumonia.  i had been clear since the 4th week mind you, so my gastro decided that i should end tx.  i have  been SVR since and have relapsed on my drinking 2 times.  yes, i was an alcoholic and ex IV junkie many years ago.  even after the alcohol relapse, i was still UND 6 months ago.  i only drank for 3 months.  i will say tho, i have never felt worse in my life. i am 46 and always felt 30. since tx, i feel 60+.  i also recently had a positive ANA test. my joints hurt, the shoulder, the hips, the knees and the back.  i have recurring skin rashes on my thighs and shins and no one can figure out what it is.  i have brain fog and i was always top notch. i have no sex drive and was always active. i know that age plays a part, but this is not how a 46 yr old that ran 5 miles a day (pre tx) should feel.  also, i had an eye exam before tx and it was 20-20.  a year after, my right eye is blurry, left is regular aging issuesand now i have pengueculas (lumps) in my eyes, my hair is like straw, my skin itches constantly, i have super dry mucous membranes and i feel horrible.  has anyone suffered this???  i think i may have fibromyalgia, but my GP says she doesn't think so.  most of my labs are ok, but the positve ANA and high RBC indices and my platelets border on low.  any ideas?  i can't stand living like this. my thyroid is ok, but on the lower side of normal. i have a negative RA.  thanks for any input and i hope all those that are told to tx when they have low VL and minimal liver damage, think twice....

[Cheesegrater]

Give vitamin D a go.

I had been on several SOC and trial treatment attempts over a few years. I never felt quite the same, even when off treatment. When I started taking Vitamin D about 2 years ago I started to have more good days.

Treatment wreaks havoc with your immune system. Vitamin D is known to be an immune system regulator.

[Rockerforlife]

I believe the reason why these VERY POWERFUL drugs affect some with killer sides and some they dont is because of genetics,its nothing to do with how healthly you were before TX,although i belivev being healthy plays a role indirectly....how come i have no problems?

[R Glass]

It is rare but it does happen. I am one of the casualties. Your testosterone level can be checked with a simple blood test. If they have tried everything else, what do you have to lose?

http://www.eje-online.org/cgi/content/abstract/143/3/371

Information about Low Testosterone
http://www.peaktestosterone.com/Symptoms.htm

[mikesimon]

"Speaking mostly about myself"

[newleaf09]

Speaking mostly about myself, I think some of us are finding other medical problems that got lost or went undiscovered due to the hub-bub of HCV treatment and all the craziness (I mean upside down immune system here) that comes with the drugs.  Look at everything you take, not just illicit drugs and alcohol.  I developed allergies to some common meds (antihistamines, painkillers) on TX that caused skin issues.  I would not have known they were the cause if I did not happen to stop them.  It takes 3-4 weeks to completely clear them and their effects from your system.

MerryBe's suggestion about following up on endocrinology tests is a good one.  There are a lot of glands and the hormones that they produce that can get out of whack without giving any symptoms clear enough to point to something specific.  a deficiency or over-production can lead to some of the problems you are having, like brain fog (too much parathyroid hormone leading to high calcium) or low sex drive (low testosterone).  Don't just accept these things as the cost of HCV treatment; follow up.  

[Trish77]

a823,

Being happy will not protect you from side effects.  Your doctor is grossly mistaken and grossly irresponsible to state such a thing.  Those of us that experienced side effects on treatment, which is pretty much all of us, were reasonably happy going into treatment and speaking only for myself, I had a pretty good quality of life while ON treatment.  Attitude certainly helps you deal with the side effects but it does not protect you from getting them.

There is a well known, experienced and highly respected hepatologist, Dr. Dieterich, who used to have HCV and went through the treatment twice.  He's now SVR and now treats others with HCV.  There is an example of a doctor who would and did do the treatment that he treats others with.  

You may be correct that eventually someone will prove that a natural therapy cures Hepatitis C.  At this time, there is no *proven* natural cure and there are many who cannot wait for such proof.  Therefore, we go with what we know has a chance at a cure *now* when a cure *now* is what we are after.  The only proven cure at this point in time is the interferon/ribavirin combination or that combination with the added PI drugs that are trialling.

Trish

[Trish77]

aquarius, I'm sorry for what you're going through.  You are the exception, rather than the rule.  Calculated risks are taken based on numbers such as low incidences of exceptions and we hope we don't fall into that exception category. If we avoided everything based on exception rather than success, I suppose we'd stop driving cars also.  Again, I'm very sorry for what you are going through.  

I've gone through treatment and the remaining issues I have are manageable permanent thyroid issues and onset of arthritis which is also manageable.  Both are autoimmune issues.  What I know now that I didn't know then is that I could have done a test prior to starting treatment that would have shown I have the thyroid antibody and did prior to treatment - so my risk of developing thyroid issues was present and therefore the risk of developing other autoimmune issues as well - of which RA is one.

I would consider looking at various autoimmune issues, with AIH being one of them although one of the symptoms of that are elevated liver enzymes.  I would also have your testosterone checked as we're learning some of the fellows have that issue after treatment also.    

I hope you get to the bottom of what you're experiencing.

Trish

[R Glass]

I must be experiencing a glitch on my end. There was a reply to Copyman and mj6000 but there was no post by them. They are there now.

[Emily_MHManager]

No.  Some have been reported as abuse, though.

Emily

[R Glass]

Have some posts been removed?

[Emily_MHManager]

Let's stick to the topic.  Aquarius64 was asking about his post-tx symptoms, not whether or not people should go with SOC vs alternatives.

We know that both SOC and alternative treatments can be discussed on this forum, but this is not the thread for it.  

Thanks for understanding.

Emily

[St. George]

I am 12 months post SVR and have very similiar symptoms as you have described.  I don't drink or do drugs and feel worse than ever  a year after treatment.  Don't let people try to convince you that your after treatment symptoms aren't valid just because they did not have the same experience as you.  I am going to see a Heptologist when I get my insurance reinstated and have the guy run every test imaginable to get to the bottom of why I feel so lousy all the time (fatigue,aches,anxiety,insomnia,achey,etc..).  I treated 3 times and each treatment was almost a year and a half in duration, so I know that is a contributing factor of why my recovery is so slow.  Tyr to see a Heptologist and get to the  core of why you are feeling this way.

[jdwithhcv]

I agree with mikesimon - I would look to the IV drug use and the alcohol to see if they are contributing factors.

Sorry to hear you are feeling so bad.  I hope your doctor can help you find some relief.  Best of luck.

jd

[Trinity4]

I didn't **** me off but I think it pissed you off because I asked.  If you are convinced conventional medicine is not the way to go than why do have to validate your belief through others who experience long term side effects?  I'm under the impression from all your posts that your belief is solid so pardon me if I'm confused.  Can't quite get your drift, ya know.

Your reply to mj6000 "The only thing holding you back is your negative attitude and closed mind about someone else's well being.  He was absolutely correct with his response and the phrase "the pot calling the kettle black aptly applies.

You show little tolerance for SOC on a hepc forum that primarily consists primarily of people who are treating or have treated with  SOC. Maybe an alternative homeopathic forum would be more to your liking.

Trinity

[Willy50]

This is not a treat now or *never* treat issue, necessarily.

It is claimed that the originating poster was a stage 1.  They very well could have possibly waited to TX.

I myself wait, but everybody must take responsibility for their actions if they decide to treat or decide to wait.  One of the possible purposes of this forum could be to aid people in educating themselves sufficiently to make that decision.  

Obviously, some people have/had no choice, or little choice.

Some people do, however.

New treatments should arrive in about a year-18 months.  They may very well double the success rate while, for many, reduce the exposure to IFN and RBV to about half.  This *could* cut down the type of post TX sides that some people incur which may be attributable to current TX.  (we *may* see but I'm not sure that post TX sides are well tracked)

Beyond that, the newest form of TX may prove to be the use of twin PI inhibitors to treat HCV; possible with or without IFN and/or RBV, or in reduced dosing or duration.  Vertex will start its testing of the two compounds in the first quarter of 2010 according to reports.  Josh Boger, then CEO of Vertex, last year thought that the combination of drugs could see FDA approval by 2014 or 2015. (his comments were made during the Feb 2009 Vertex stockholders report)

For some people that will be too long to wait, for others it may very well be worth waiting for.  The SVR rate may then rise for genotype 1's from 40-50% where it is now, to 70-80% where it will be when Teleprevir and Boceprevir are approved.   Twin PI inhibitors could bring the SVR rate closer to 100% with further minimized exposure to IFN and RBV.   It is the current use of these drugs for TX that are causing a statistically significant number of treaters post TX sides which seem to defy both diagnosis and treatment from medicine.

In 4-5 years we may see a form of TX that is far shorter, safer and more effective.  The approved use of a single PI should arrive far sooner;12-18 months. (an estimate)

best,
Willy

[a823]

I have the wrong attitude for making my own decisions about my health???
Wow.
The forum should be relabelled:
HepC ribaverin/interferon patients only.If you have a different view, please don't seek questions.
Tell me, do you work for the company?
My resistance is coming from everyone jumping down my throat for having my own opinion. I really was excited to find a place for answers, but apparently I will have to keep searching.

[copyman]

you come across with the wrong attitude to be helped in this forum. perhaps this forum isn't the right fit for you???

[jdwithhcv]

"My doctor said I would have no side effects b/c I seem to be happy."

If your doctor actually said that, I suggest that you find another doctor.

[a823]

I am new to the doctor thing. I only got my first test results from a doctor last week.
I will see a G.I. in two weeks. Before last week, I was still in the denial stage that I had anything at all.(and I found out in 2008)
I am Native American. My upbringing has a more open mind about all possibities of what is out there to heal.
Years ago, people thought there was one way to have a baby. Now we have many ways.
Years ago, we thought "seeing into the body" was impossible. Then we had M.R.I's and Cat scans. Now we even have 4D sonnograms.I don't believe there is one way to do something because some company adveritses it to its clients(doctors) that there is.
Why if you are really cured, can you never give blood anyway? The government, medical profession, whatever, knows something about it, that we don't.
No one I know, knows anything about what we are going through.
If I EVER decided to have treatment, I would want to know from people who actually had the treatments themselves. My doctor said I would have no side effects b/c I seem to be happy. I see from everyones response here, that DOCTORS don't tell you **** about what you will actually be going through.I want to know how people react from it. And my questions about "post treatment" are not that I want to know even directly after, but during.
I once went to a medical conference and I asked the doctor who was showing how to do a procedure if he would perform it on his wife, if need be. He answered NO> Not even the doctor, who performs this surgery, would advocate it to his family.
I want to be informed Trinity, and others. Sorry if this pisses you off, but it is saving my sanity. My body, my choices.
I think what is right for path, is right for YOU. I will listen to my heart. I know more about my body, then even a doctor does, but I am still even learning.

[Trinity4]

Curious a823 why you keep asking our opinions of "western medicine"?  I would think how we feel post tx would be of no concern to you.  
This forum is well aware of those who choose alternative treatments, however, you will find more in favor of SOC than against because the majority of us want to cure the virus, not live with it and the only cure is interferon and ribavirin.

Aquarious64 is not a typical case of how the majority of people recover from treatment.  Most know full well going into it there may be some lasting side effects but we are willing to risk that for the sake of cure and to prevent the death of our liver.

Trinity  

[a823]

says you. I "don't believe I won't be cured w/o treatment. My goal is to heal naturally and become an advocate for alternative therapies. Some of my research has shown cures from "unconventional" methods.
For example, a man last year had a bone marrow transplant. He had full blown AIDS. Now he is cured of even that  virus!
I won't do that, but I did find some other things I can do that have great results.
There are plant stem cells, saving my childs cord blood, the possiblities are endless. The only thing holding you back is your negative attitude and closed mind about someone elses wellbeing. Good luck to you.

I don't believe in "standard medical treatment" for me.

I don't care about being "cured" as I know nothing is "wrong" with me.I care about living a quality filled l just don't believe in it.

[mikesimon]

Could the alcohol or IV drugs possibly be a contributing factor?
I treated for over 3.5 years and my hair is perfect - as is my skin.  I have no bone or joint pain except for the lingering effects of a motorcycle accident - knee. I was never a junkie or alcoholic though. My eyesight hasn't changed in 6 years though I did develop a retinal tear during my second TX.
So, I guess different people have different outcomes.
Mine was great! I'm SVR and feeling good.
Mike

[mj6000]

You will never be cured without the standard medical treatment. Thats the only way I'm sorry to say.

[a823]

Thank you so much for this. This is exactly why I probably will never have Western Medicine. I am currently having Chinese herbs, acupuncture and hatha yoga. I do a lot more too, (go atleast once per week-most insurances COVER it!)

Try some alternative therapies. EVERY symptom you have can be treated by acupuncture.I promise it works. I know, because I can feel it. I have seen the changes.

Good luck.