Hepatitis C: Post Treatment Issues Community
Anyone else have joint problems 10 year post Hep C treament?
About This Community:

This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints.

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Anyone else have joint problems 10 year post Hep C treament?

I was on "experimental" Interferron and riboviron treatment for 2 years in 1999-2001 and now have no cartilage in my shoulders and have chronic joint pain.  I need bilateral shoulder and hip replacements and have acute lower spine pain which causes bilateral sciatica. It seems strange all my joints are breaking down at once.  At 55 years old, my Dr's comment I am young to need joint replacements.  My Doctors don't seem to know what has caused this condition and one said it was probably congenital???  I think it is related to my Hep C treament because that made all my cartilage and skin hurt at the time.  Has anyone else had these symptoms?  FYI no evidence of virus for 10 years now even tho my chemo treatment was called a "failure"
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Avatar_n_tn
Coincidentally, I have had the same issues over the past ten years since SVR.  Initially it satrted with severe joint pains after tx, and then the additional problems with shoulder, hip, and knee connective tissue.  My body feels like it has aged forty years in the ten years since SVR.  Several others on the forum have experienced similar joint, and tendon problems..as well as chronic rashes.  I also developed several chronic skin conditions upon finishing tx, as did an old member Jim (jmjm), on the forum.  Don't let people mislead you by saying it is coincidental...these are the exact issues that are common to the group that has developed serious problems after tx.  Many doctors readily acknowledge that interferon can cause these problems, and rheumatologists across the country are seeing many of these patients, who present with the same issues after tx.  Its why the Mayo Clinic terms it 'post-interferon syndrome'.  Of course its not been 'proven' yet as someone mentioned....none of the drug companies out there wants to run studies on post treatment problems.  Its not something the HCV docs seem to want to study either....I often think...well the reasons are pretty obvious.

You will find that in other threads, there was a pretty large scale survey done a few years ago, on post tx experiences.  Interestingly, more SVR's felt worse after tx, than those that felt better.  The symptoms listed that began AFTER tx ended included the problems that you discuss...along with weakness, fatigue, brain fog, and a whole host of CNS related issues.  

Just keep communicating your problems, and keep documenting them with your doctors.  I have had many specialized tests over the years, with a wide range of specialized doctors, trying to figure out what is wrong.  Most of my doctors just plainly admit that the interferon likely 'changed things' for my body and central nervous system.  There are certainly plenty of our cases out there.  Many on the forum don't want to hear about it though, or see the issue discussed.  Your post-tx problems are not important compared to the thought of possibly 'scaring' someone who is considering treatment.  Oh well.....

DoubleDose
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1669790_tn?1333666195
Have you considered that it could also be related to years of living with HCV?  This article discusses the relationship between HCV infection and osteosclerosis.  Your 2 year treatment could have possibly added to your issues, but it's not so easy to find a cause and effect in these situations.

http://www.sciencedirect.com/science/article/pii/S1297319X11000315

Congrats on your SVR, but I'm confused on why it's being called a failure.  You should be very pleased to be virus free, as many of us are hoping and praying and struggling daily to get there.
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Avatar_m_tn
It is easy to blame everything on HCV or the treatment but other things most likely cause it.

Please don't misunderstand me, I do believe HCV treatment drugs can cause permanent side effects but nothing is proven up to this point. Perhaps in the future there will be data to support these claims.

I look at it this way, I would rather have the side effects then die from liver disease.

Anyway hope you are feeling better soon
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Avatar_n_tn
Coincidentally, I have had the same issues over the past ten years since SVR.  Initially it satrted with severe joint pains after tx, and then the additional problems with shoulder, hip, and knee connective tissue.  My body feels like it has aged forty years in the ten years since SVR.  Several others on the forum have experienced similar joint, and tendon problems..as well as chronic rashes.  I also developed several chronic skin conditions upon finishing tx, as did an old member Jim (jmjm), on the forum.  Don't let people mislead you by saying it is coincidental...these are the exact issues that are common to the group that has developed serious problems after tx.  Many doctors readily acknowledge that interferon can cause these problems, and rheumatologists across the country are seeing many of these patients, who present with the same issues after tx.  Its why the Mayo Clinic terms it 'post-interferon syndrome'.  Of course its not been 'proven' yet as someone mentioned....none of the drug companies out there wants to run studies on post treatment problems.  Its not something the HCV docs seem to want to study either....I often think...well the reasons are pretty obvious.

You will find that in other threads, there was a pretty large scale survey done a few years ago, on post tx experiences.  Interestingly, more SVR's felt worse after tx, than those that felt better.  The symptoms listed that began AFTER tx ended included the problems that you discuss...along with weakness, fatigue, brain fog, and a whole host of CNS related issues.  

Just keep communicating your problems, and keep documenting them with your doctors.  I have had many specialized tests over the years, with a wide range of specialized doctors, trying to figure out what is wrong.  Most of my doctors just plainly admit that the interferon likely 'changed things' for my body and central nervous system.  There are certainly plenty of our cases out there.  Many on the forum don't want to hear about it though, or see the issue discussed.  Your post-tx problems are not important compared to the thought of possibly 'scaring' someone who is considering treatment.  Oh well.....

DoubleDose
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Avatar_m_tn
Congratulations on your SVR and sorry to hear of your ongoing problems.

In regards to this statement by the prev. poster:

Your post-tx problems are not important compared to the thought of possibly 'scaring' someone who is considering treatment.
----------------------------------------------------------

This  reflects his thoughts 'Only"
Like everyone else here..he speaks for "no one else but himself"

Will"

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1930700_tn?1327068504
DoubleDose: - if you had to do it over again what if anything would you do different?  I'm tx naive - considering all options including not treating until less toxic tx become available. (Stage 2/3 geno 1, 37 years hep c - 63 yrs. old).
millie
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1669790_tn?1333666195
Also, in your response milliehepc, can you refresh our memory?  If I recall, you did trt for an extremely long period of time and at a higher than normal dose, hence your name.  Could you give us this information to bring your longer term issues into proper perspective?  I believe you provided this before, but I don't recall.  Thx.
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Avatar_n_tn
As I have said I would do tx again to get rid of the virus.  I have said this many, many times in the past.  Today, knowing what I do, I could make a more targeted choice of a triple combo therapy, and likely would have had to spend a lot less time overall on tx...in today's tx world I think there may be some big improvements taking place that will hopefully translate into less post-tx damage.  That is exactly why they are trying to eventually eliminate interferon from the mix...its no walk in the park...and it can do considerable damage to some..(or to many depending on what the REAL numbers look like).  Its not been studied in much depth or detail, as we know.

As far as me, I did tx twice...first failed...it lasted 15 months and I relapsed.  Second was 72 weeks...and it worked.  I am not going to go over the month by month dosages and details again, as I have done that many times in the past.  I have always said my case is not the typical in many ways...but that likely does not make a huge difference.  There have been many cases of similar post-tx problems in those who have tx'ed for 48 weeks or less...and some with much worse damage than my case.  It does not make sense to try to negate the problem by pointing out some of us that have done multiple or extended tx'es.  The post-tx problems cut across ALL treatment categories...so it is what it is.  My tx'es were managed by two of the top HCV docs in the business, with many publications and worldwide presentations...so I was still under a protocol.
I had no idea that the after-effects from the successful tx could be so severe, or go on for so long.  That was not a discussed possibility, NOR did the tx drug literature state anything like that.  Check the old PegIntron inserts and see for yourself.

Also, today many people have failed tx, and have done two, three, four or more tx'es to attain SVR.  Its just something that happens.  We have to look at the problems for ALL treaters, not throw out an issue because someone did something more or less than the 'typical' tx...whatever THAT might be!!!

I think its TOTALLY legit to discuss this issue very openly and push for research and medical community action.....simultaneous to advocating that people TREAT their HCV, use the tx effectively, and take the necessary risks to get cured.  YES...there ARE some risks involved....both during tx...and for some..after tx.  It is just what it is.  We need open, honest, objective studies to help those in both camps!  Those that need to treat, and need support and information.  AND those that were somehow damaged during or from treatment.  It just makes sense to NOT abandon those that develop problems, and for the medical community and pharmas to try to gloss over the fallout that happens for a particular group.  Its called RESPONSIBILITY!  and ETHICS!  What our medical and drug system in the USA was always supposed to embody.  No bitterness here, BTW, just determination to get at the core issue, and get something done.  I am a realist, and I continue to work hard, and accomplish many things..IN SPITE of the medical issues.  Let's advocate for research, and openness on ALL fronts in the HCV war.

DoubleDose
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163305_tn?1333672171
I've seen you post many times about the issue of long term side effects of interferon treatment.
Nobody will deny that some people do have these problems.
And you are right, there should be a place to discuss this.

When I was first diagnosed I was as scared from the horror stories I read online of interferon tx as I was of the phrase 'End Stage Liver Disease'.
It kept me from doing treatment for over a year.
Whether doing tx sooner would have saved me from needing a transplant is unknown.

What I know now, from personal experience is many, many people do treatment, clear the virus and don't post online. People don't tend to go on forums when healthy and happy to talk about how great they feel post tx. They move on with their lives.
This leaves those who are not satisfied to slant the view towards one side.

My only objection with discussing possible long term side effects here, is we attract many newbies, and hearing these complaints when you are already confused, serves only to frighten.

I'm not sure what is the best solution.
But to keep things honest, we need balance.
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1930700_tn?1327068504
DoubleDose:  I truly appreciate you taking the time to answer my question.  I admire every person who has gone through tx.  These are the true pioneers.  I cannot imagine doing a tx for 72 weeks.  The pharmacueticals make billions of dollars - the ultimate payback to us is to be "cure".  To advocate and demand that obtaining a SVR does not come with such a high price during and after tx is what I hope one day is achieved. I support your efforts in this endeavor..... is as you say the responsible and ethical thing to do as we will ultimatelly all benefit from this type of advocacy.

bs1111 sorry for threading on your post.  I hope you get better, I am sorry you have sufferred for so long.  I wish you good health...
millie

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Avatar_m_tn
i completed 24 wks of treatment (pegasys and ribavirin) the end of july 2011, genotype 3. I was scared of treatment based on alot of the horror stories and put it off for well over a decade. by the time i finally decided to treat i probably had HCV for over 30 yrs. the treatment was definitely brutal but i did somethings to prepare myself that I think were key and managed to get through. I am happy to say that I am currently SVR negative 6 months after treatment and I am feeling better than I did before treatment. One of the reasons that I finally chose to do treatment was because I was experiencing many of the sypmtoms people complain about as the "long term" side effects of interferon without ever having taken interferon. I was at the docotr's constantly getting checked for RA, lupus, fibromyalgia, lymes, epstein bar. i felt pretty crappy months at a time. i came to realize the HCV was doing a number on me. the proverbial straw was  when i went to a wholistic chinese docotr for acupuncture and he told me  that this disease would beat me up and i should do the treatment. i cried like a baby that day and then determined to go forward. it took me a year to prep. at the end of treatment i thought for sure i was near death and wondered if i would ever feel better. i really can say that now i have many many more good days than bad. i am back in the gym for the first time in 8 yrs, i beleive that supplements such as chlorella and other forms of cholorophyll (blood cleansers) as well as multiple sources of b vitamins(for nerves, immune booster) has helped me gte back on my feet so quickly.Limiting sugar, processed food I beleive is critical.  I still get some anxiety (it was bad during tx) much better but not completely gone.I drink chamomille at night for that as well as calms forte when needed. I wanted to let people out there know this treatment can and does work.
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446474_tn?1404424777
You constantly ignore reality because it doesn't agree with your opinion. And you keep repeating the same old misinformation over and over as though repeating it will make it true.

"I had no idea that the after-effects from the successful tx could be so severe, or go on for so long.  That was not a discussed possibility, NOR did the tx drug literature state anything like that."
You had no idea that it was a risk to take two very powerful drugs for at least 48 weeks that were designed to kill a virus that replicated in your liver such as PEG-Intron and REBETOL? Seems odd to me.

"My tx'es were managed by two of the top HCV docs in the business, with many publications and worldwide presentations."
And who would that be? How about some names. That they would not warn you of the possible side effects and complications of treatment seem very unlikely at best. And these docs are some of the best???

"NOR did the tx drug literature state anything like that. Check the old PegIntron inserts and see for yourself."
Well I did just that. Here is the top of the PegIntron label in a highlighted box in big bold letters...
So everyone can read it themselves...
http://www.accessdata.fda.gov/drugsatfda_docs/label/2001/pegsche080701LB.htm

"Alpha interferons, including PEG-Intron, cause or aggravate fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. Patients should be monitored closely with periodic clinical and laboratory evaluations. Patients with persistently severe or worsening signs or symptoms of these conditions should be withdrawn from therapy. In many but not all cases these disorders resolve after stopping PEG-Intron therapy. See WARNINGS, ADVERSE REACTIONS.

Use with Ribavirin. Ribavirin may cause birth defects and/or death of the unborn child. Extreme care must be taken to avoid pregnancy in female patients and in female partners of male patients. Ribavirin causes hemolytic anemia. The anemia associated with REBETOL therapy may result in a worsening of cardiac disease. Ribavirin is genotoxic and mutagenic and should be considered a potential carcinogen. (See REBETOL package insert for additional information and other warnings)."

Can a warning be any more dramatic then that?
Did you read the last line " In many but not all cases these disorders resolve after stopping PEG-Intron therapy."?

"I had no idea that the after-effects from the successful tx could be so severe, or go on for so long.  That was not a discussed possibility, NOR did the tx drug literature state anything like that."
Look at the whole label it contains CONTRAINDICATIONS. WARNINGS. PRECAUTIONS. ADVERSE REACTIONS. Laboratory Values.

Take responsibility for your own decisions. Be an adult. Get a life and move on.

Hector

  
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Avatar_f_tn
Hi bs, the question of long term effects always brings out some passionate discussion on the fact that the coin has two side.  Cure vs risk.  Information we should all be more aware of.

Hector brings up a good point regarding interferon. Not an expert, but have you been tested for autoimmune disorders?  If this is the problem perhaps it can be controlled?

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001819/

Hope you find something that works.


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Avatar_n_tn
So I guess you are saying we all should expect to potentially end up with crippling, life altering side effects after completing treatment!  It sounds to me like you argue both sides of the case....being upset if someone actually has the nerve to discuss their long term after-effects from tx on the forum,,,and then acting scathingly angry is anyone complains about ending up with major problems because..I guess from what you are saying...we ALL should expect this exact potential outcome. AND, it seems, we should all just keep our mouths shut...according to YOU.  You sound to me like someone who just doesn't want to hear other people's opinions.  If you don't like my comments, fine..tell us about your OWN experiences....and I will tell mine.  I think MANY who end up with these post-tx problems are surprised, and have been told pretty bluntly during treatment that the sx will fade away in short order after completing treatment.  At least I know I have seen many state that same thing.  Who are YOU to contradict what many of us have been told.  Were you THERE?

Also, the warnings on the inserts do not say anything about developing new and different problems AFTER ending tx...only that some issues may not resolve.  Can YOU read???  Thanks for your helpful feedback buddy.  You sound like a real happy fellow.
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Avatar_m_tn
Both DD & Hector make good points. We all should know that there could be permanent side effects with these TX drugs. Each person has to weigh out the benefit vs the risk. Not everyone ends up with permanent SX. The drug companies aren't trying to hide anything. It clearly states the risks in the pamphlet that comes with the drug. It is not all their fault doctors don't provide feedback from patients years after TX. Even if their insert said there is definite "permanent" SX people would still treat. Once again weighing out muscle aches, etc vs liver disease. I would take life long muscle aches over LD any day. I'm saying this from my own personal experience. I'm about 2 years post TX and still feel like crap much of the time. But I knew this was a possibility if I wanted to rid myself of HCV.

I believe the longer someone is on INF the worse long term health issues. This is why doing 24 weeks with the new drugs is most important.
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1669790_tn?1333666195
Very good points copyman.  When someone comes on this forum waving the red flag cautioning everyone about the collateral damage remaining after trt, they should also include their length of trt and dose modifications if they took place.  If someone is on these challenging meds for over 2 1/2 years and increased their dose of Inf/Riba, possibly doubling it (?), this will increase the potential for permanent sides.  How could they not realize this?  

When new members come to the forum, they don't understand the trt history of those posting.  They just read and digest the information presented, sometimes trying to make difficult decisions on if and when to trt.  I believe your situation and lalupa's is much more common, although not frequently reported and posted since it's the norm.  

Your last statement is so true, but unfortunately for those that need to trt 2, 3, 4 times, they need to make tough decisions.   Hopefully other options will be available soon.
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419309_tn?1326506891
Education. History. Balance. Honesty. Compassion. Understanding.

I'm not sure if they all mean the same thing to different people, but I think that's what this forum is supposed to be about.

Certainly we all come from a different place and have differing opinions, but respecting where everyone's viewpoints come in is a two-way street.  Let's not cut each other off at the pass.

There's no question it's not one size fits all here, but certainly the goal is to rid the virus with as little collateral as possible.  For folks like bs1111 who may suffer from long term symptoms that they feel is a result of treatment, I hope they can find relief... if not through their treatment doctors, then perhaps from some other specialty.

Because my husband paid the ultimate price, his life, for not being able to cure his hcv in time, my view is rather singular -- I would knowingly take on whatever side effects the medication might have given him, but the choice was not ours to make.  It's a gamble... whether it's your liver, your health, or your life is anyone's guess... it's up to each of us to pick our poison and live graciously with it afterwards, isn't it?

God bless all past and current HCV-ers...

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148588_tn?1407125204
Agree that post-tx sx are a valid topic of discussion and that opinions need to be put into context, regardless how teidious that can be sometimes.
I was fortunate to have:


1)examples of both people who had waited too long to tx and/or had bad post-tx sx, to personally gauge the risks before txing.

2)a large print highly detailed large print package insert to study (Oct 2002)

3)Tx'd with minimal damage, but good odds to clear. Ignored my gastro's protocol on how long /how intensedly  to tx' got lucky, SVRd

4) Have come to the conclusion that it doesn't matter whether my post-tx health problems relate to carrying the virus for 30 years, my exposure to IFN, or pre-existing conditions/age/ genetics. I deal.
And I hang around here to see what's new.
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206807_tn?1331939784
This is a long Post for me but, I think it’s time to put my 2 cents in.

I usually don’t post much on threads about Long Term/Permanent Post Tx damage. I’m torn between failing to educate people of what harm tx could possibly cause and scaring some away from treating. As most of us know, when we were first dx we searched the Internet for knowledge. We would read 10 positive things then read 1 negative and forget all about the 10 positive.
For me, it’s been about 4 years now (+-) and it has been a slow uphill battle but one I am progressing.
I can look back at where I was at about 3 years ago when I just didn’t care anymore if I lived or died, I just wanted it over with, to now enjoying life.
I think I was put on every AD known to man but they just made things worse.
My body was in constant pain which led to an addiction to pain pills. About a year ago I realized I wasn’t in as much pain as I originally was and quit the Lortabs cold turkey (something I would never won’t to go through again).
My mind was sharp. I could read a set of Plans/ Spec. Book and know them by heart. After tx, I was dependant on Highlighters and Notes because I couldn’t remember anything.
Now 4 years later, my mind is not as sharp as it was but I can see major improvement.
My body still aches but the pain is tolerable. There are those times when I really need a Lortab but know it’s best for me to stay away from them.
The Darkness is almost gone but I still take Xanax for Anxiety Attacks. I’m not concerned about Xanax addiction because I don’t like them so I only take them when needed.
I used to be on the go constantly now I am a “Homebody” but I kind of like it.
Some people blame it on age but even my own GP (I’ve seen for decades) said, “This is not caused by age. People don’t naturally age that fast.”
I know I will never be the same as I was Pre-Tx but that may also be a good thing. A 54 year old “Burning the Candle at Both Ends” doesn’t have much time left before the expiration date.
I wish there was some way this topic could be discussed without it turning into a p!ssing contest but, I don’t see that ever happening.
I guess to some it up. Yes, there is a possibility it may be a long recovery and there is the possibility there may be permanent damage. People like me are not the norm so; don’t let 1 not so pleasant testimony wipe out 10 positive ones.
R. Glass
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Avatar_m_tn
I have not yet started tx. However, I have horrible joint pain especially in the knees. I am 41 years old and feel like I'm 74. Hope this helps some.
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Avatar_m_tn
Good post Ricky.  I often think of you when people attribute these issues to "doubledosing".  
You don't mention it but you are a genotype 2, which for most folks means that your exposure to interferon is cut in half compared to genotype 1's.  Compared to some people who upped the dose, or for some people who extended treatment you may have done 1/3rd.  Compared to people who have retreated and failed a few times your exposure could be an even more fractional amount.

I mention this to emphasize; damage may not be related to interferon exposure.

I would also mention, I know people who have treated and interferon reduced their symptoms or even seemed to improve their staging.  Comeagain was one of these, but when he re-treated (and succeeded in that attempt I believe) he was saddled with issues post TX.  

My point is that the same drugs on the same person may have differing effects each time.

It is also worth mentioning that many/most people who have treated and retreated have NOT had serious issues.  I think that accounts for some of the strong feeling that the drugs, while powerful have a degree of safeness.  If one is willing to "go back to the well", I can't think of a more convincing way of proving one's conviction; words being one thing, and actions another.

I finally want to float out that possibility for people to consider; I think we tend to dismiss peoples pain.  We can't see it, we see these people write coherent convincing posts and we figure that they can't be too bad.  We have no real tools for understanding how dramatically their life has been altered.

I really wonder if we could live a day in their shoes if we might reconsider their pain, their issues and gain a deeper understanding or compassion for their plight.

Why do these threads cause such disharmony?  
The answer is that they may prevent people from treating, who then might die from liver disease.  They may progress in a few years and not be able to treat.

Is this a reasonable description of the issue?

For me, the only people who might advance to ESLD in a few years are cirrhotics, and probably people who are borderline compensating/decompensating.  
This is a group of people who in all likelihood cannot stand to do SOC and triple therapy would be even harder.  Treating after all could push them into decompensation.  These are also probably that group with the most remote chance of success since they are cirrhotic and many may also be past TX failure partial, non or null responders.

However, this is a group of people who *might* be able to treat successfully with DDA's and riba, for instance. (in a few years)

Conversely, the people who are stage 1, 2 & 3 may indeed be able to wait 3 years.  The stats that I read are that with cirrhosis the death rate is about 5% per year.  I believe that the majority of cirrhotics live over 10 years with cirrhosis.  
I am sometimes a little surprised that people are told they can expect to jump a few stages in a matter of a few years on this forum, and it is never questioned as normal or representative of the aggregate of infected.

Long term sides caused by interferon...... some people end up on FMLA and lose their jobs, sometimes their houses at a time in their life when they cannot start over.  They can face life issues which extend beyond health issues.  Even people who improve over a few years may gain their health but lose other things in the process.

Like a veteran that comes home, unable to fit in, or with maladies no one understands or wants to hear about.......... these people who have been injured deserve more compassion and less anger directed at them.  We already have more than enough judging by some doctors, co-workers or society.

To some extent, I think it is the fault of the forum; interferon issues must co-exist side by side with people who are treating.  Who thinks this is a GREAT idea?  

willy


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707563_tn?1395081210
Hi everyone -

While I know this is a heated topic, please keep the personal attacks out of it.  This thread has some great points, and it would be a shame to have to close it.

Thanks,

Emily
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206807_tn?1331939784
Thanks and Great Post also.
“I mention this to emphasize; damage may not be related to interferon exposure.”
Neither my GP nor I have any doubts the damage was caused by Interferon/Riba exposure.
Prior to tx I had none of these symptoms. I will admit, I may have caused some of this damage due to stubbornness. Due to the severity of the sx, at about week 16 my Gastro gave me the ultimatum to choose between quitting my job or tx. I told him I could not quit my job so I would have to stop tx. He “Zombied” me out on Lortab, Ambian, Xanax, and some kind of Anti-Psychotic. Even though I was a Zombie, I was able to complete the final 8 weeks. Looking back, I think I should have listened to him and chose between the 2. G2, RVR, and at 16 weeks, the odds for SVR were in my favor. I am only speaking for myself and am in no way suggesting anyone stop tx early. By quitting my job, I would not have put as much strain on my body. It is all hindsight and speculation. What is done is done and Coulda, Shoulda, Woulda, is irrelevant. The one thing I am sure of is this damage was caused by Interferon/Riba exposure. If I had to do it all over again and knowing what I know now, I probably would still treat. I would just do things different.
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Avatar_m_tn
Ricky : glad to hear you are doing better and  hopfully continue to improve..

Will


Double dose:
To Hector:


You sound to me like someone who just doesn't want to hear other people's opinions.  If you don't like my comments, fine..tell us about your OWN experiences....and I will tell mine.  .  Who are YOU to contradict what many of us have been told.  Were you THERE?
Can YOU read???  Thanks for your helpful feedback buddy.  You sound like a real happy fellow.



Absoluely unbelivable......
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Avatar_m_tn
Am so astonished could not even type that right...astonished ,however not surprised...
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1815939_tn?1377995399
I usually steer clear of posts and threads when they start to get personal, but I need to say this.  Hector is one of the most knowledgeable people, perhaps THE most knowledgeable on this forum. In addition, Hector spends hours writing extremely caring, informative, detailed, and helpful responses to people who are very ill, desperate to find treatment, and no idea where to look or how to proceed, especially those with cirrhosis and those with ESLD (but others too). Few other people on this forum (if any) have given the same amount of detailed information Hector includes in his responses (medical centers and phone numbers, doctors and phone numbers, financial help, insurance help, constructive advice, county services and phone numbers, and much, much more). He does not have to sit on this forum responding to people's requests for help, but he does. And he does this even though he has decompensated ESLD, hepatic carcinomama, is on and off chemo, and is waiting for a transplant. My hat is off to Hector. I have the utmost respect and admiration for him. We are extremely fortunate to have him as a member and even more fortunate that he is willing to help so many people when he is so sick.

(I am not overlooking the other extremely knowledgeable and helpful people on the forum, of which there are several, or the others who are ill with cirrhosis, but Hector is the one who really goes out of his way to help the sickest people who come on the forum seeking help and I think it is important that people remember that.)

Thanks, Hector, for all you do for the rest of us.
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Ditto what Pooh just said.

I know everyone has a different take on treatments but for me having stage 4 cirrhosis currently on treatment Hector I can't thank you enough for the advice and support you have given me not only on my private messages to you answering my questions, but also advice via links and other methods you have generously taken the time to help others on this site, despite your own heavy duty health issues.

again ditto what pooh said, thanks for all you do and have done for the rest of us
Gene
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First let me apologize for being somewhat inflammatory in my reply to Hector's post about my comments.  I had no real idea that you had been through so much, and are dealing with extreme circumstances.  Had I been up to speed, I would likely not replied at all.  At the same time, if you re-read your post, I think its pretty apparent that you are 'calling me out' in no uncertain terms, and questioning my honesty as relates to my statements.  I am not going to get into the content and substance issue again, other than to say that everything I have stated is as open and honest as I can possibly be.  I do understand your difficult history, and the circumstances you are dealing with...but I don't think that I should be subject to sarcasm, and ridicule for my comments without any reply.  Granted I fell into the trap of returning the sarcasm, and being a bit 'offensive...so I do apologize for that...I guess I reacted to the nastiness that I felt in your words.  I should have just remained silent and let it ride.

I agree that we ALL need to be respectful of each others opinions and comments. I will keep that at the forefront of my mind in my future posts on the forum.  But I do believe its a two way street.   I don't wish to spend time on a forum where you get skewered by a small group for voicing a perfectly straight forward opinion ,(which, by the way, is shared by other forum members too) and for making comments on my experiences.  I would rather just dis-engage than to have to deal with that constantly.

DoubleDose
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Thanks for the excellent posts.  Both are well worth reading several times.  Willy, you do have a way of finding the balance on an issue, and standing back from the 'fray' to bring a succinct synopsis to bear on an issue or thread.   Thanks for your reasoned comments, and unemotional explanation of what we are trying to deal with...and the complexities attached.  I couldn't agree more!

DoubleDose
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Ya Double D its kind of a damned if you do or don't deal sometimes.
I'm not digging the personal attacks from any direction cause I think ultimately everyone is trying to help each other out.
It is just crazy how these treatments effect each of us so differently, even after treatment is over.

anyway, Kumbiya ( what ever that means )
Gene  
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"The translation of "kumbaya" is "come by here".) "
http://www.proz.com/kudoz/English/religion/1278567-kumbaya.html

"Kum ba yah") — is an African-American spiritual song from the 1930s........
The song was originally associated with human and spiritual unity, closeness and compassion, and it still is, but more recently it is also cited or alluded to in satirical or cynical ways which suggest false moralizing, hypocrisy, or naively optimistic views of the world and human nature."
http://en.wikipedia.org/wiki/Kumbaya
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I have to admit that I am overly sensitive when it comes to people choosing to not treat they hepatitis C. I failed treatment as a null-responder and was waiting for the new antivirals but developed liver cancer before the new drugs came on the market. If I could have treated even with ESLD I would have taken the risk. But that ship has sailed. Once you develop liver cancer you need to get rid of your old liver as soon as possible, as in time the cancer do what cancers do. Multiply or metastasize which at a certain point will disqualify you for a life-saving transplant and the it is "Th-th-th-that's all folks!".

I apologize if I appeared to negate your experience with your illnesses and suffering. If there was anything I could do to help you I would. But I am afraid I know nothing about orthopaedics or rheumatology and what treatment options if any, might be available for you.

I am glad that yourself and most people with hepatitis C will never know the ultimate price that a small portion of people having hepatitis C must pay. It is still difficult for me to deal with.
Last year 16.000 people were waiting for a liver transplant, and just 6,300 got one. More than 1,400 others died waiting. This does not include the people that for one reason or another couldn't get listed for a transplant. (No insurance, having other diseases also, too ill for a transplant, etc).

On a positive not this disease has been a real eye opener for me. I don't care what illness someone has, suffering is suffering. If I can do my little part to help someone I will and I do when I am able. If it wasn't for the help and support of friends, family, people I have met on Medhelp, doctors, nurses and other medical personnel I probably wouldn't be alive today.

So I am very sorry for whatever pain you are dealing with. I understand about pain and suffering. Believe me I live with it every day. It ain't no picnic. I apologize for directing my anger and frustration towards you in particular. My personal belief is that everyone should try to do whatever they can to avoid what myself and other transplant patients have to go through. Not everyone is going to agree I know. I have met a few people who have chosen to die instead of treating their cancer or getting transplant. While it upsets me terribly, it is their life and their choice.

Right now I need to focus my energy on fighting my liver cancer. I have another chemo treatment on Wednesday and I am psyching myself up  for it. This is a fight for my very life. Whether others agree or disagree with the choices I have made or make, I am the one who will have to deal with the consequences of my decisions.

Life is too short, no matter how much time we have left. So as far as I am concerned I hope you except my apology and we both focus our energies in a more positive and constructive direction.

Take care.
Hector.
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I am sure I speak for more than just myself when I say your input on this forum has been, and continues to be invaluable.

My thoughts will be of you this Wednesday, wishing for a successful outcome to remove this tumor with as little discomfort as possible.

With great respect and admiration~
OH
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My thoughts will be of you this Wednesday, wishing for a successful outcome
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+1

Will
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"I am sure I speak for more than just myself"
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Most definately, OH.  This thread reminds me of how thoughtful and caring many of the forum members are and continue to be regardless of their personal situation.  

Best wishes to you Hector. We will be thinking of you on Wed.  
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While on standard Interferron and riboviron treatment for 72 weeks, forget which week, I woke up with a frozen shoulder!

Had a GP appt near that time and when I brought up the shoulder freeze (along with a constantly growing list) - the shoulder thing wasnt really addressed but I was told to come back in two weeks if it got worse or continued (the old take two aspirin and see me in two weeks gag). When I came back in two weeks the doc got off his but and actually tested the movement in my shoulder.

I could tell from the look on his face something was wrong and he said that he never had a patient loose movement in such a short time. He asked me how this happened and I said that I had gone to sleep with a normal shoulder and woken up like this. We joked that I must have been in a car crash in my dreams, lol.

After an MRI a diagnosis of "Tendinosis" was given *WoW, glad someone asked about this as even the specialist at the time was off and now I have a better understanding of what went on  as I just did a bit of research...

"Tendinosis, sometimes called chronic tendinitis, tendinosus, chronic tendinopathy or chronic tendon injury, is damage to a tendon at a cellular level. It is thought to be caused by microtears in the connective tissue in and around the tendon, leading to an increase in tendon repair cells. This may lead to reduced tensile strength, thus increasing the chance of tendon rupture."

I spent six months of 3 days/week at physical therapy plus daily home therapy. The first three months saw great progress then shockingly and very suddenly all the progress disappeared and returned almost to the very start! Again everyone was really shocked!

The next medical step was surgery - it was so barbaric I thought the guy was joking. The alternative was to "wait and see" as many found torn/frozen tendons would slowly unfreeze - maybe a year or more.

I have never fully recovered after 7 years and will probably be on some kind of pain med but one does learn how to adapt.

bs1111, it is no where near what you are going thru, and I wish you the best, but there is no other reason than treatment (or I guess HepC) to suddenly causing cellular damage to the tendons of my right shoulder overnight.

I guess that I am very lucky to have docs in this small town who believe that PIS is a valid medical issue. It would be great if we had help from the Liver Gurus (I just turned 50, treated at the University of Pittsburgh Liver Center - which is suppose to be the best in the world - and since I am "cured" there is not much they will have to do with me...

There was that one appt my GP got for me with the Top Guru there... first I met his nurse (which took six months). I read off my list of complaints. Her first response was "Sorry, We destroyed your life!". As our conversation continued she said that a couple more times. I didnt expect such honesty but kinda appreciated it. The Guru was the complete opposite. Their treatment had nothing, zero, nada, to do with any of the issues I was going thru. Not even the anemia. He was sure I was bleeding internally somewhere... He took the time to do the scopes himself. Guru wouldnt even take a $5. bet that he wouldnt find bleeding. I was right. The Guru was wrong.

Sorry to go on for so long. I rarely post as it seems fruitless... as I am "cured".

Thank you Hector for posting those inserts. Now the issue is where does one go for help when those nasty little "CONTRAINDICATIONS. WARNINGS. PRECAUTIONS. ADVERSE REACTIONS" crop up and the best Liver Center in the world says it has nothing to do with treatment???

Oh, and didnt someone recently post links to a couple of warning letters from the FDA to Big Pharma concerning (http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/EnforcementActivitiesbyFDA/WarningLettersandNoticeofViolationLetterstoPharmaceuticalCompanies/ucm259249.htm) & (http://www.pharmcast.com/WarningLetters/Yr2006/Mar2006/InterMune0306.htm) - Just one sentence from the notice states "Omitting information about serious and potentially fatal risks associated with Infergen’s use in combination with ribavirin raises serious public health and safety concerns."

This notice is dated March 21, 2011!!!

I am totally with DD on posting the lingering side effect that I and my doctors are sure come from treatment (&/or the C that is still active but undetectable) ***And any other medical group that even hinted and GASP!!! uses the word "cure" (even in quotations) would be taken off the market so fast & would be sued - It is really a sin!!! ...only wish I had the energy to do more... sorry to ramble... I have been really sick and now I have to fight the Pennsylvania Medicaid system for two of my meds! I am just so exhausted!

I am on the other side of DD on treating - where I was when I discovered I had HepC I would not have treated. I would have watched my numbers and kept up my healthy life style and then deciding instead of jumping into the (for me) unknown (not having access to the internet and this great forum).
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thanks for posting that frank.....billy
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First off, Hector, I sure wish you the very best, and I feel deeply for the situation you are dealing with.  Just keep focused, and keep doing what you have to do, and hopefully you will come through all of this with a positive outcome!  I am certainly in your corner on everything you are handling.  I definitely am not looking to debate the long term sx issues any further, since there is not much more to say, and I do not even want to harp on a controversial subject.  I understand why you react and get upset...and my issues in no way compare to what you are going through.  Let's just encourage those that need to treat to be very proactive in pursuing that direction...and allow for the fact that those who sustain damage should also push for some good answers, and expect openness from the medical community.  I think Frank's articles that he linked serve as a stark reminder to all of us that the drug companies are not always exactly 'angels', and have been at fault for misrepresentation in the past, and I am sure will do similar things in the future.  They must be forced, in these cases, to be completely factual, and honest, and must be prepared to deal with whatever fallout comes their way when they do , on some occasions, make false or misleading statements.  Same for doctors.  
We all want to know the facts, and understand all of the risks before we undertake any drug program.

To Frank, I do appreciate your commentary as well, and the linked warnings from the FDA regarding the makers of Infergen.  It shines a light on the way that drug companies can really avoid telling 'enough' of a story to really lay out the full risk picture.  Funny thing about your shoulder issue, but that has become one of my bigger problems after tx, increasing every year after ending, and now to the point I can hardly sleep for more than a few hours straight because of deep shoulder pain.  The tendon issues are also showing up all over the place now, in my hands, arms, legs, and neck.  Now I remember all of jmjm's problems with tendonitis after tx, that I did not really internalize at the time.  Its something to really watch, and to be aware of the connection to tx.  I doubt that surgery would make sense for me, since I fear they would eventually be operating on half of my body....Well let's see where all of this stuff leads...and then try to figure out what the options and alternatives are.  You are FULLY correct that the HCV Gurus are stonewalling, and all seem to spout the same company line...'can't be from tx'...while down the street the other docs are diagnosing PIS.   Something's gotta give at some point!  Best of luck to you Frank and let's keep the lines open on this issue.  

Hector....may you have the very best luck possible going forward.  We are ALL on your side, me included.  Sorry for any bad feelings that we may have generated in our earlier exchanges.  

DoubleDose
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good luck with your treatment on wednesday.  i will be praying for you.  take care.  belle
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I think that we all do best when we have the others back.

If I would have come on this site and found this info on PIS from the Mayo and all the other research everyone is bringing to the site recently I would have felt EUREKA!!!

Yes, there was a wealth of information when I first found this site but now WoW!

So if it is at all possible lets see if we can keep it all positive and aid one another.

I dont really need to come to a forum, where I come for info and insight, to be told that "youre crazy" or "youre imagining that" as I have been thru all that already.

DD, Hector, bs1111, and just about everyone here (including myself) need lots of healing energy and NOT the opposite.

hugs all,
f
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Not sure what SVR stands for...but I am guessing it's interferron Riboviron treatment.  After I finished 6 months of very intense treatment, I was off it for 6 months and then began a full year of therapy.  After that I still had measureable virus so was called a failure.  It was a tough especially since my husband died during that time.  One year later when I started with a new Doctor, the virus was no longer detectable and remains so now. I feel like I had a miracle happen and my Dr agrees.  I got Hep C from a needle stick when I worked at a hospital-never bothered getting workmans comp since I had good insurance and at the time it was not well understood-called non a non b hepatits!  Never know what the future will bring.  Will keep you and all who are here helping others in my prayers.
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This was a very good, very informative post and it was nice to see everyone agree to disagree in a positive.
None of us know the others full history of treating, treatment week, long term side effects, prognosis so perhaps we should think of that when posting,
Giving everyone the benefit of the doubt could go a long way to more discussion and understanding
Dee
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To Double Dose:
I know this was an old post but since Dee just posted - I had wanted to say that for a moment I had felt really bad that I asked the question "what would you have done different" and then there were some strong opinions.  So happy how it ended.  Sometimes I feel I don't have a "right" to post because I have not yet started tx though I check the forum on a daily basis.  I know Hector may disapprove that I've not yet started tx but I know I would not be able to work and tx.  Hoepfully, I know its a gamble to wait  a year and half when I can retire.  Then I will  have medicare and still have a monthly income from social security and if things look up and I get SVR I will continue working on a part-time basis.  That is my goal to make tx my full time job.   I hope I make it - I told my hepatalogist that this week and he said I could wait but no more than that projected time I indicated.  (stage 2/3 - 63 years old - tpye 1 - over 35 years).  

Anyway, I just wanted to thank all of you again and again for the invaluable wealth of selfless information you continue to put out - I am always humbled by it.  So guys - I hope you all don't get too tire of me - before I start tx and I earn the warrior stripe. :-)

millie
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For what it is worth, I have severe pain at times with my muscles and tendons and the cartilage in my knees is going. I have had HCV for at least a few decades but this joint and muscle pain is relatively new ( a few years) and came with the other symptoms like bleeding, rash and fatigue. It is only now while on the oral meds (study) that i feel the symptoms easing up. I figured that these problems are related to HCV.
I never took interferon, I honestly believe I would not have tolerated it. But of course one can never say for sure.
I don't have much knowledge on this but it may be worthwhile to look up septic arthritis-I read somewhere people with HCV sometimes get a sort of infection that affects the joints. I will look into it more too.
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I spent three years on interferon, reba and combination therapy in 1999-2003, with a 1 year battle with lymphoma in between. I was lucky in that all of the effects eventually went away. Problem was the hep-c didn't, but that is why I am doing triple therapy. What I want to say is that I was told before my radiation treatment for my cancer, that the treatment causes cancer. I did it anyway knowing that it may buy me some time. Every individual is different and will have different responses, side effects and results. I highly recommend a book by a very well respected cancer researcher named David B. Agus, called "The End Of Illness". While he doesn't talk about Hep-C specifically, he talks about how little we know about how the body reacts, to drugs, vitamins, or how the vitamins relate to each other. It is a good read and well worth it. I hope everybody lives the best life that they can and I do know from experience that the placebo effect of a positive attitude is real, good luck...Mark
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I completed an unsuccessful regime, for nearly a year of Ribavirin and Interferon therapy. With regards to post treatment symptoms, I do believe I am suffering from related symptoms similar to others discussed here. I have had chronic neck stiffness and pain. The pain does not feel like it is muscle related as I do not feel fatigue in any of my neck or back muscles. It honestly feels like my spine is stiff and movement of my head aggravates it. Though it is typically in my neck between my shoulders up to the base of my spine, I do occasionally have similar issues in my lower spine. Having experienced muscle fatigue in my lower back while much younger, before therapy, I can honestly say that the symptoms I am having today do not feel related to my muscles, but again as with the upper spine, it feels like the spine itself. While I wouldn't say the pain is totally debilitating, it is difficult to live with and severely restricts my range of movement especially when driving and needing to look laterally. Had my treatment been successful, I would definitely accept these symptoms, however they are real and I do not believe they are a result of anything besides the therapy itself.
As a larger issue, considering the advances being made in Hepatitis C treatment, which was my cause for therapy, the government here in the USA needs to be subsidizing care plans to help confront and eradicate this virus. The expense of tackling this ailment are enormous to those with marginal to no insurance and even with decent pharmacy coverage, the medication can be prohibitively expensive. The US and the CDC should get serious about helping people with this and other related viral problems, especially since much of its spread and proliferation can be attributed to blood supplies and medical procedures, which the CDC and WHO are well aware of, this despite there earliest assertions that IV drug users and sex fiends created this disease and are/were responsible for its existence. Neither of these categories satisfy an answer for myself, as I have fallen into neither category. In truth I most likely received my viral infection from the USAF, though time and circumstance would require lengthy and expensive litigation to prove it so with only a slim chance of proving it. At any rate, the point I am making is that in the case of Hepatitis C (and other viral problems), being my specific situation, the spread of this virus was primarily the result of ignorant medical authorities, who while honestly attempting to do a greater good, allowed this and other viruses to affect millions of lives. Given this as fact, there should be government subsidized programs in place to help affected people get the treatments and therapies they need. I see now that some communities have taken the lead in helping to provide clinics which specialize in the treatment of Hepatitis C, though in my opinion this needs to be happening at a Federal level with a serious investment. I would encourage everyone to write their congressional representatives to inquire about serious government support in combating this and other such ailments. I know  I am not alone in my given instance and others have similar stories. With medications that run near 100k $ and effects that can be seriously debilitating as a result of therapies, the government needs to be involved to carry a serious portion of this financial burden. Too many people who are suffering from such problems are marginally employed and financially restricted. The government is aware of the problem, it is high time it stood up to assume the responsibility to its citizens and take serious measures to battle these diseases.
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If the US government took responsibility for the treatment of hep C it might also have to admit and take responsibility for the thousands of people who contracted the virus while in military boot camps from air-jet gun inoculations.
The costs would be staggering.
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I was on triple therapy until 7 months ago and have had awful pain throughout my body, particularly my knees. In addition, my cholesterol went through the roof and I was put on a statin drug. Apparently it's very common for cholesterol to rise after SVR.

So I ended up in physical tx and it turned out that I had runners knee from being so inactive for so long and then overdoing it when I felt better.  Still hurt everywhere else tho.  Finally went to the dr 4 days ago and she said it was a very common side effect of statin drugs and to stop taking it for 2 weeks. As of today, pain gone!

So I'm not saying that there aren't lingering interferon issues that people have, but that's not ALWAYS it. And even if I had had to live with that pain, I still would never regret doing the treatment.
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I just finished treatment thru clinical study with SOC and 7977.  I am about 11 weeks post tx and
I have pain in my spine which started while i was on tx. It went away and now it's back.  I also have  muscle pain and other joint pain.  I never had problems with my back or muscles untill I started hep c tx.
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I have hep c but I don't partake much in the forum because I have not gone into treatment.   I come here and read and educate myself.  I am thankful everyone talks openly about what they feel and experience.  For me this is a valuable tool for decision making.  
This thread was very good for me to read.   Thank you for sharing.
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Hey all.

10 years post tx with IFN and Ribavirin. Still clear after all these years! Never wanted to find out if I was SVR until I was forced to. I couldn't believe it. No PCR. I almost cried because all along I thought I wouldn't be lucky long term. I believed I was still positive and it haunted me for all these years.

Treatment *****, and I didn't believe I was worthy of success. If you are eligible, do the treatment, believe in it.

Yeah, there are some aches and pains that I wonder if are related to tx, but I wish for all a successful treatment.
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I am 8 months post tx svr!!! Most of the side effects I felt durning my triple tx have long since went away, but the only one that I am feeling is the joint pain...I might have had little aches and pains here and there but its worse now....but other then that everything is so much better!!!! I was on incevik...peg...ribivirin...a horrible combination but after 4 weeks of treatment I was svr! good luck all with your tx its worth it!
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Hi I am not sure if this would help anyone but this article addresses the HCV being related to Rheumatoid problems.

https://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/HCV_and_Rheumatic_Disease/
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Don't you think it's a coincidence that so many people who have gone through Hep C treatment are having the same issues? You don't see anyone that has untreated Hep C having such similar complaints.

I had been living with Hep C for 33 years, and never had any symptoms, didn't even know I had it until I donated blood back in 1992.... and still didn't get treated until 2004, then again in 2011. Shortly after I finished my second tx I started feeling arthritis-like symptoms in all my joints, my hips were killing me with every step I took. I was diagnosed with fibromyalgia, then I was told I had bursitis, and in 2012 had surgery to remove the right bursa. I was told I had to have the left one removed too, but thank God I didn't, because the  pain has remained the same on the right side. I saw a rheumatologist who prescribed medication that didn't work, so he prescribed Lyrica on my next visit, which to me is like drinking water because I feel no different.

I have lost interest in everything that I used to do, hobbies like sewing, baking, jewelry, taking care of my plants; and even daily chores have become a painstaking task. Then I started feeling pain on wrists, hands and fingers, I saw a hand specialist which injected me steroids to block the pain, but after no positive results, told me I needed to have surgery to release the tendons. I had surgery on my right wrist, and a month later on the left wrist and base of index finger (for trigger finger.) I am still in as much pain as before surgery. Nothing seems to alleviate the constant sharp pain I feel.

Brain fog is another part of it, I forget things so easily, even talking to people I find myself looking for words in my mind, while writing this, I have had to do Google searches because I have forgotten words like "bursitis."  My husband finishes most of my sentences.... I forget movie titles as early as the day after I watched them. Names, places, dates are easily forgotten, leaving me with insecurities and doubts about what the future holds for me....

I feel fatigued immediately after I wake up, I have no desire to do anything, can't go anywhere without feeling exhausted, even going grocery shopping, or to the mall has become such a painful task, let alone to the movies or on a trip.

My life has completely changed, there is now the before and the after tx, I am happy I no longer have Hep C, but living life like this has become pure hell. Watching people older than you enjoying life at its fullest while you are feeling constant pain is very difficult. Depression kicks in almost on a daily basis.

I definitely have to agree with those who say this is a direct result of Hep C treatment. As a matter of fact, when I first started feeling all this pain back in 2012, I posted a question: "Is this Arthritis or is this the post side effects of Hep C treatment."  I was only starting to feel pain then, now two years later, it is a constant agony, a reminder that sometimes we have to give something up in exchange for something else....but when it comes to health... it is a very though thing to do... You are given the promise of starting a new life without Hep C, only to then find yourself saying....."If I had only known.....!!!"
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Of course I agree with every word you have written.

I just don't know how you are able to put your faith into these medical specialist but then I realize all this has come upon you just two years now. I have fired so many doctors especially specialist as they just can't do anything for me or don't understand the issue. I am so sorry you have gone thru all those surgeries and without much relief.

I don't think I have written this here publicly but I really wonder... why are all these big pharmas running away from interferon? (and Riba)? Do they really have sympathy for us patients suddenly? I DONT THINK SO!

The enormous push to treat everybody no matter the condition of liver or numbers ... just treat treat treat - I do believe that the Sh_t is about to hit the fan one day and it will come out that Big Pharma knew all along about the disastrous life destroying side-effects! I don't think the new meds will be much better either. Some very powerful stuff to "CURE" a virus! Really "cure" a virus! WoW!!!

btw, I hear my story in so much of what you have written. It is really spooky!

Take care and just try to get up with a smile no matter how much energy it takes. It has become a great practice for me. Best of luck, frank
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I could have written those words too. Treated in 2007-feel just like you do.
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pooh55811
Avatar_f_tn
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dontworry_behappy1
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cheflady
ENGLAND, Other
7469840_tn?1409849436
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hepc4Sandi
San Diego, CA
223152_tn?1346981971
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frijole
Midland, TX