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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 universal
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?1333662595
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.
Helpful - 0
Avatar universal
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 universal
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?1327064904
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?1333662595
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 universal
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
Helpful - 0
163305 tn?1333668571
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?1327064904
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 universal
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.
Helpful - 0
446474 tn?1446347682
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 universal
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 universal
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.
Helpful - 0
Avatar universal
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?1333662595
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?1326503291
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...

Helpful - 0
148588 tn?1465778809
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.
Helpful - 0
206807 tn?1331936184
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 universal
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 universal
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?1626361905
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
Helpful - 0
206807 tn?1331936184
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 universal
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 universal
Am so astonished could not even type that right...astonished ,however not surprised...
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