Doc Questions. SVR Biopsy. "Cure" Disabled Me

[Frank J. Perrotta]

OK, gonna try to keep this short (wishes self luck with that, LOL)...

SVR & off meds nearing two years now.

Suffering long term disabling sides of chaotic system.

Liver Gurus refuse to acknowledge treatment created this chaos though their assistants tell me it is probably the cause... One said the following "Capped a Gene", "Bound to Gene HSM". In second appt she couldnt remember saying those quotes???

I have two excellent local GPs. So screw the Liver Gurus... They both agree that treatment is messing up a certtain percentage and they see them regularly when the gurus dont know what is going on in the field.

One of the GPs is trained in research med so he is always thinking what to test for outside the box.

The other had Hep B and two transplants and an old interferon. His wife had C and treated same as me. She has "cured" five years ago and suffers from long term neurological damage after treatment. He is much more cautious about doing much...

Both agree that more and more data is coming back showing the long term problems with current treatment.

The first one thinks that my liver is somewhat of a mess... the only consistent odd bloodwork is estrogen and it is just slightly elevated. Testosterone is usually fine. But doc#1 has me injecting testosterone to try to stop the estrogen. He feels that the estrogen may be building up in my body??? I have very very very bad gynecomastia and crazy weight/fat gain distribution. Carrying about 220 lbs on 1000 to 1200 cals.

The second doc looked over my iron results and tried to explain that if one looked at each individual result they looked normal but putting all the results together my iron system was in chaos.

Other sides include chronic fatigue/exhaustion, insomnia, tendanosis, depression/anxiety, bad brain fog - well, I could go on for two pages, LOL.

I am really not as smart as so many on this forum and with the brain fog can not retain much. I understand most but could never repeat to my doc.

Doc #1 really wants to do a liver study meaning a biopsy. I guess I dont mind a biopsy but wonder what he could accomplish with a biopsy. If he discovers that the cells have been manipulated by treatment what can he do about it???

I guess I am asking for questions to ask the doc about this biopsy and what he hopes to find and how he might want to treat if he does find something. Can anyone help me with a list of questions?

thanks in advance,
frank

btw, is there any importance in discussing a cytokine storm, even if a mini one was caused by treatment?

[GSDgirl]

neck & shoulder pain......I finally found a great chiro about 2 years ago and I go in for a tune-up every month or so.  I had gone to 2 other ones for 8 or 9 years sometimes 3 times a week, did the physical therapy which made mine worse, soma, vicodan sometimes when it was real bad.  My neck gets so out of wack that when I had a deep tissue sports massage the girl was shocked that she couldn't get "in".

tendonitis, my great chiro diagnosed that and had me wear a wrist brace BUT only when I was cleaning horse stalls.  It has to be stiff enough to not let the wrist bend.  I bought mine at the local pharmacy for less than 20.00.

chiro got my neck figured out and my wrists better now all we have to work on is my hips & lower back that keep going out.  

I obviously still have insomnia which I never had, it is 5:13 am and I have a kennel to clean real good now that it might thaw tomorrow, 3 horses & 2 ponies to bring in and wait for the farrier.  If you don't hear from me anymore it means that my 4 year old filly killed me (she is a brat).  Got deliver papers to the atty that is handeling the sale of our commercial property.  go to one bank to file fraud charges on a credit card company that took 1040.00 out with my authorization.  Go to another bank to see why in the heII they let an old "renter" use my comercial property as collateral on a 53,000.00 loan that he never paid and we got his lean along with a lean from the IRS on taxes he never paid--15,750.00.................****, I have a busy day I can feel the anxiety attack coming LOL.

Denise---------sorry that was so long and off topic

[merryBe]

http://www.hcvadvocate.org/hepatitis/About_Hepatitis_pdf/1.1.1_Living_With_HepatitisC/SIDE_EFFECTS.pdf

I'm not sure I ever sent this to you...I know I meant to and though you would appreciate it....it explains a lot about both diseases, HIV and HCV...you'll note the adipose and inflammatory and cytokine issues are all covered, as is insulin resistance and its role in tx and in returning to health.

mb

[merryBe]

this article deals with new ways to stop inflammation and even cytokine storms

http://www.bentham.org/cir/sample/cir1-1/D0010IR.pdf

mb

[BelB64]

The reason the link didn't work for you is due to the fact I typed it incorrectly. Type the same link WITHOUT a space between the words and & hepatitis( It should be hivandhepatitis.com, NOT hivand hepatitis.com)  It will work as I tried it out.

[jmjm530]

yes, I've read that study also, any age 65 thing seems independent of ageof/how long  infected except for the subgroup you mentioned. Certainly something to keep in mind as for example if your like a stage III in your late 50s as I was when I decided to treat. At that time my liver specialist said I had a very good chance of developing cirrhosis sometime within the next 10 years which happens to be consistent with that study which I believe was not published my spoke to Dr.

That said, we are all individuals, so if you're late 50s and only stage one for example, you may fall outside of that Bell curve. the important thing with watching and waiting this to be smart and vigilant about it. what this study tells me is that as one gets older and approaches 60, you have to factor in that fibrosis progression may start to accelerate.

By the way the link you provided does not seem to work, I assume it refers to the contradictory study? if so I'd be interested in seeing it. Forgive the typos I'm using voice recognition software at the moment and it's just too difficult to go back and edit

[BelB64]

I read that medscape study that said cirrhosis comes to just about everyone at age 65 except for "non genotype 1 women who contracted the disease before age 37" who get cirrhosis at age 89 on average. However there are other studies that dispute this  I found this one 6865 people over 65 years of age and "cirrhosis was observed in 58% of those over 80 years old and 37% of those between 65 and 80.

www.hivand hepatitis.com/hep_c/news/2006/071406_b.html

It's hard to really get consistent numbers

[merryBe]

doing as well as can be expected Frank, week 70, and an ongoing ear infection, nothing out of the norm for Mr Toads wild ride a.k.a. HCV tx.

Hope you get some answers soon. On what did they base the cytoKine storm theory, do you recall? And yes it's worth discussing. I mean, it was a nurse who finally figured out I had liver disease, not a doctor, so I wouldn't automatically assume because it's rare it may not have happened. I'd look into it more and also I'd suggest getting to a top endocrinologist.
Whether tx started all this or not, bottom line is you need someone who really knows their stuff. That might mean going to one who specializes in pituitary mainly because the majority spend so much time treating one gland, the pancreas that all they know about is diebetes and they aren't all well versed in the more complex glandular anomalies of the rest of the system. A NP who works with a top gland guy told me this.
It's not surprising if you only see 2 cases in a career of something to misdiagnose or not be up on all that you should, so really shop or ask around to find out who is good in your area.

mb

[Frank J. Perrotta]

merryBe, thank you so much for your generous time with all that amazing info. Cant wait to talk to my doc about what you have brought to my attention.

btw, how are you merryBe?

My appt is in a couple hours so will let all know if anything has been discovered after all this info.

Thanks again everyone.
frank

[merryBe]

Hi frank, sorry to hear of your continual difficulties.

came across this and wondered if you'd seen it.

http://cat.inist.fr/?aModele=afficheN&cpsidt=1431039

also am wondering if they have checked your pituitary.
You can only make hormones if your master glands work and tell the body what to make and how much.
So one philosophy is to block production via the above mentioned drug or another, or as in your case by adding the opposing drug.
The other method is to get to the root cause, find out which gland had stop signaling and then with exact human replacement hormone therapy (EHRT) to replace the missing hormone. This method has far less side effects than trying to counter one hormone with another, or trying suppresssing drugs which can have sides.
Often the redistribution of adipose tissue which is seen in HCV patients can also effect the amounts of stored fat as well, as in your case. The additional fat means an increase in estrogen production since 1/2 of the estrogen produced is made in fat cells, not in ovaries. This is why as men age and gain weight they tend to also grow little boobs. It's all about estrogen levels.
I know I sound like a broken record on the subject, but knowing whether you pituitary is producing is very helpful. Something has slowed your signaling. If you test your IGF-1 level it will help you to know if your pituitary has slowed down. If that's happened, then everything else will be thrown off.
It's not just getting your TSH tested, which is all the liver guru's usally do...but watching out for how the disease is effecting the entire endocrine system since we now know that the disease causes changes throughout that system.
So not only does HCV cause thyroid issues, but pituitary and hence gonadotropic, and pancreatic changes. All these things need addressing and monitoring.

[moahunter]

The problem is that as we age, we get all sorts of conditions anyway. I had an arthritic condition before I caught Hep C, and it didn't get any worse through treatment. Other people will get such a condition at times in their lives, regardless of whether they treat. Same for other things.

In saying that, there are clearly some treatment related long term side effects. My doctor believes that the peripheral neuropathy in my fingers (probably neck as both hands), is treatment related. I have also noticed some sciatica. But neither for me is a big deal, certainly no-where near as horrible as Hep C, IMO, for I despite the odd bit of pain, I have a lot of energy, which is everything.

[jmjm530]

Appreciate it if you would like to elaborate a little bit more on the tendinitis and/or any muscle problems you've had since you stopped treating.

In the two years since I've stopped treating, I had a significant Calf Strain, tendinitis in both arms, rotator cuff pain, plus back problems and have spent a considerable amount of time in PT.  I certainly haven't ruled out just get an older LOL, however there is this feeling that something is different than before.

In case you haven't seen it, recently started a health page on the side effects from treatment including posttreatment side effects.

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64

I did look for some of your threads on this topic to include but the search engine here is not that great. So, if you have the link to any of your old threads that you might want to include, feel free to send me the links via PM so I can include them and/or feel elaborate some more in this thread on the topic,  and I'll include this thread in the Health Page.

all the best

Jim

[DoubleDose]

As you guys probably already know, I have dealt with a number of post-tx issues over the past five years.  Most either started during or right after ending therapy.  Some of my most discomforting problems are 'tendinitis' related.  I have discussed several times in past posts how much trouble I now have sleeping on either side because of intense shoulder pain.  I also have developed a painful condition in the back of my legs, which feels like strained tendons.  They are almost always contracted, or uncomfortable.  My arms are less of a problem, but also experience the same sort of muscle and tendon pain from time to time.  Often the problems are the worst when I do not exercise regularly.

I have gotten weary of describing the post-tx issues because it either opens a 'can of worms' as far as replies, and draws responses claiming that the problems 'could be from anything'.  Of course, most of us have the same pattern of post-tx problems (of those that have after-effects, I mean), and also, many doctors now have a base of patients who are pursuing these tx-related problems to find ways to treat or manage them.

The problem with discussing post-tx issues, is that often the posts provoke readers to assume that we are 'discouraging others from considering tx', or are trying to give tx a bad rap.  Quite the opposite, on my end.  I am glad to have treated, and would recommend it to most with HCV...but I will also continue to call a spade a spade.  I would like to get some viable treatment approaches for these all-too-real problems.  

The fact that interferon is absolutely known and acknowledged to provoke a host of side effects in most people, and can potentially lead to short term or long term issues for some of us, should be enough to warrant frank discussion of these post-tx complaints and physical changes.  The doctors are still pretty 'clueless'!

We are all intelligent adults here, we would assume, so it would be really great for the 'paranoia inclined' to avoid 'dissing' other people's experiences with interferon, and realize that for a group of us (maybe from 33% to 50% according to some surveys),  the tx may have left us with substantial medical challenges, and a bodily system that has changed in many ways from what it was before tx.  Interferon can be a very powerful, and cell-altering drug.  Let's get answers to these problems, and push our Hepatologists to look at the mounting evidence of tx induced after-effects...rather than shunt everyone off to their GP's, and Rheumatologists exclaiming that 'something else' must be happening.  Don't the HCV docs ever think that it must be pretty darned coincidental that everyone develops these issues right after finishing tx???

I am not a complainer, and even though I could fill a page with my particular post-tx issues, I generally ignore them, work my way through them, and lead a very productive life running a business, and family.  That's not to say the problems are not present, but I don't let them destroy my life.  Some others may not be so lucky, or may have even worse post-tx afflictions.  Its all a continuum, from no after effects...to an extreme of serious long term after effects.  Most probably fall somewhere in the middle, or toward the 'less effects' range...or so the Hepatologists tell us.

Have a good day!

DoubleDose

[jmjm530]

you know, I still fondly remembered DOS. the analogy there I guess would be before they discovered hepatitis C, when I was told there was nothing to worry about, it would just burn itself out in a few years. Hope things work out for you.

Jim

[jmjm530]

facta,

Difficult to do any extensive searching with the tendinitis, but from memory, I believe most will eventually progress to cirrhosis if the hep C. is left  untreated. Age 65 or so seems to be the magic number were many on the cirrhosis regardless of when they were in fact that. so it's not just waiting, it's waiting smart, meaning vigilant monitoring of all aspects of liver including periodic biopsy. vigilant monitoring combined with the generally slow-moving nature of the disease means many reasonably weight, but no one suggests they should wait forever. So the question then becomes how long to wait, then it can be a very individual decision. How long I decided to wait for you can be a lot different than how long you might have decided to wait.as to the whole thing about liver cancer, I believe the data is less clear as to how much treatment helps you not sure if the to difference in statistics would be a persuasive argument to treat let's say with little or no damage. I decided to treat around stage III and the reason was because of looming cirrhosis.

[Frank J. Perrotta]

forgot to add that Macs would be the answer to Vista/"7". Leopard is a dream to work on, LOL

[Frank J. Perrotta]

Firstly, thanks again for all your responses so far and keep any questions for my doc coming.

HCA, I had pretty recently had an ultrasound all normal. Yes, I cleared. Wish I could explain how the doc explained my iron was a mess. He was going on about all the different aspects that iron was made and used thru the body... that is all I recall. And actually, being messed up this long has put me at peace with my lingering conditions caused from treatment. Anyone who meets me and learns of my story is just shocked at how well I am taking the stress. There is NO doubt treatment brought this on. All my doctors agree that something is really really wrong. Just by looking at my body the liver guru lost his composure for a few mins and screamed why I wasnt seeing an Endo? I explained that all the Endos simply pulled out their standard forms and checked off a few boxes NEVER OPENING THEIR BOOKS/BRAINS. Guru said he was getting me a new appt... Endo opened the door and asked me why I was there. I told her that Guru thought her initial opinion was **** and she should open her books... She said there was nothing she could do. Telling Guru this enraged him saying I should write a letter of protest.

Then Guru starts diagnosing me without any evidence... internal bleeding, blah blah blah. I bet him he was wrong but he refused the bet. Put me thru hell and was WRONG! Both he and Endo and other docs have independently labeled me as "One in a million".

My sig: Intensive cytokine arousal for a prolonged period of time is bound to leave its mark on the body, mind and soul. Given to me by a member here (califia). I am often asked about the sig and always have to use wiki to remind myself of how to explain it... there was a reference to cytokine storms and TGN 1412. Remember that?

desrt, thanks for those perfect questions. Would I need a gene sequencing from before treatment to make comparison or can they find RNA strand fragments (I dont know what that means - guessing it is something bad, LOL)?

Hi Jim, thanks for the time with your post. Was hoping to get your attention. Was very happy to find my first post in your link there. I will take your advice on contacting various members... just wish I had the energy... dont know how you do it!

On the tendinosis (please note the diagnosis was NOT tendinitis)... I went to sleep with a normal shoulder and woke up with sever pain and loss of movement. Saw my GP who suggested I take an aspirin. That didnt do much. LOL. Asked for another appt and this time he got off his *** and asked me to show him my current range of motion, with sever pain I pushed as far as I could and he tried to push more. He was in utter shock as to the amount of loss overnite. MRI gave the diagnosis of tendinosis. I went thru physical therapy. First month I progressed in amazing degrees. I worked really hard. *I worked really hard to "cure" Hep C even though I was in amazing condition. Next month, for some crazy reason, all benefits were lost. It was suggested I go thru some barbaric surgical/manipulative procedure ending with a tube of morphine. WTF are these people thinking??? I was also tole it may just clear itself up in about a year. I got busy with a super find of a tiny little house that was nearly given to me... kinda forgot about the shoulder (HYDROCODONE helped). About a month ago I tried to get into yoga again and immediately discovered that I had NOT regained full range of motion, UGH! Oh well, just not gonna do that pose to its fullest range...

I have been blessed with two knowledgeable local GP of high respect in the community and we are working hard do whatever is possible... It is great to have two such great professionals and NOT bull-sh*tters!


Jim, so sorry to hear of the severity of your condition. One just wonders why such good people as yourself are struck with this hell... I do think we are chosen for a reason.

HCA, my SSID was approved on the basis that Hep C treatment disabled me. I was approved by the second judge. The first judge was found to be lacking in valid reasoning for turning me down and his conclusions actually included multiple reasons to find me disabled but decided to turn me down.  Do you have any idea of the % of judges decisions that are deemed invalid?

OMG, Jim, so perfectly said. I gave my liver Guru copies of stories off this site. I very much doubt that he read them... The local GPs see the end results. Most of them just shake their head. Maybe send ya to an acupuncturist - after 3 days/week for 3 months my ancient Korean surgeon/acu stated that the Western docs had poisoned my too deeply. A medial intuitive was even consulted. Ya dont wanna hear what he suggested and I followed... UGH, vomit!

btw, wish I had met your "barbaric treatment" hepa doc. I was sure I was told NOT to treat by my first hepa but that sob scared me with future death into treatment... even with a near perfect liver, low count, 1B and calves of steel. BIGGEST MISTAKE OF MY LIFE.

Well, NOT knowing I had C was the most thankful benefit of NOT being insured. Carried it for 20+ years and in PERFECT iron man condition, NOT really but... amazing shape. I listened to my body. Got drunk easy so didnt drink much. Ate well, exercised a lot, never had a drivers license. Turned 40 and as every good male should I got an exam at a clinic. At the bottom of three pages of PERFECTION was C+. Everyone was shocked to learn that I was carrying it for 20+ years and in such amazing condition... but you listen to your body and follow what it is saying. I think that is the best medicine.

Trinity4, was that a recent post? I read some interesting subject line but havent got to it yet.

Jim... is everyone in agreement about the future new meds being better? Is it kinda like Vista... or 7? Every one agrees it is real real bad & MS puts out a zillion fixes that dont fix it but everyone starts saying how wonderful Vista is so biz can make bucks... then "7" starts to appear and everyone says how crappy Vista is and how great "7" is GONNA be??? UGH!

Oh, almost forgot. The Gurus I have been seeing are all within the UPMC at the University of Pittsburgh main campus which I believe has the TOP status and maybe the first liver transplant...

[Facta_non_verba]

The longer I'm on this forum, the more I realize that a lot of the posts go off-topic and end up discussing alcohol and whether to treat.

So, in continuing the tradition I want to ask if anyone knows what the latest scientific concensus is as to what percentage of those with Hep C progress to cirrhosis. I remember a figure of about 70-80%. The reason I bring this up is that if a high number never progress to cirrhosis with the attendant risk of hepatocellular carcinoma, wouldn't it lend more support to the view that those with little fibrosis can reasonably defer treatment?

Jeff
Facta non Verba

[jmjm530]

I hate this disease-can you get the guy who is thankful to have it to give me some therapy?
------------------------
LOL. But more seriously, I do respect the damage HCV can bring, and in fact that was my reason for treating. Where we differ, is how long to wait . I respect your position, but personally feel a vigilant approach of watching waiting makes the most sense for many without significant liver damage, especially as newer and better drugs are changing from the  theoretical to the demonstratable in  current trials.

Of course watching and waiting is not without its risks but neither are the drugs. We all pick our poison.

All the best,

Jim

[Trinity4]

"I hate this disease-can you get the guy who is thankful to have it to give me some therapy?"

That was funny HCA
Don't mean to impose on your thread but I'll bet Granite will be thankful when we don't reference his thankfulness anymore.  I must say that was one of the most bizzare reasons for giving thanks I've ever heard.    LOL

[HCA]

Fundamentaly I don't disagree with you.
I have taken more interferon than most-over two years in all and soon to take it again.
Like you say there is plenty of anecdotal evidence.
In my view everyone (within reason) should treat.
I have a friend who like me got infected in the late '70s.
He refused to treat.
Today he told me he has been in hospital with bleeding varices and nearly died.
Now it is too late to treat and he faces the inevitable progression to transplant evaluation-and that's his best position.
I helped at a support group for a long while, and was the resident 'expert' (lol).
The main issue was always fear of treatment and I encouraged people to take the option if it was availible.
One woman who cleared came back and said it was  all thanks to me (obviously it wasn't).
The Hep C population is ageing now and cirrhosis and ESLD is on the rise.
I have seen people in the liver unit and it can be shocking.
People should of course be informed,but on balance I think it's better to take the poison.
That's why I have a pro-treatment bias in my responses sometimes.
I hate this disease-can you get the guy who is thankful to have it to give me some therapy?

[jmjm530]

HCA,

I also don't automatically blame non-specific or multi-symptoms on the treatment drugs.

That said, I also don't rule out these types of symptoms just because they haven't been specifically diagnosed or knowledge by doctors.

The truth is many liver specialists feel their job is done with SVR and very little efforts or a study dollars have gone toward what many reasonably feel are lingering symptoms from the treatment drugs.

So that leaves us with a parcity of studies but a growing body of anecdotal data. To oversimplify, what it seems to come down to is that someone who felt pretty good prior to treatment but their health and well-being nosedived sometime during treatment and beyond.

Just too many stories not to give serious consideration to, and I feel anyone going into treatment without weighing these potential risks is doing themselves a great disservice.

The way I see it is that there's no free lunch when you use a sledgehammer approach like interferon. If ramping up the immune system to sonic levels had no darkside I imagine it would be used a lot more often for a lot of different things. I was told years ago interferon was a barbaric treatment and to give very serious consideration whether the rewards were worth the risks. This was from a hepatologist. what I've learned subsequently, including my own experience, has only reinforced that.

Jim

[HCA]

What I meant was chronic  conditions which have been specifialy diagnosed and acknowledged by doctors as attributable to treatment.
A significant number of people have complained of  never feeling right again for a variety of reasons.
I am not keen to encourage people with non-specific or multiple symptoms to automaticaly blame them on treatment.
The heading of the post was 'Cure' Disabled Me!
The content of the post did not necessarily validate that very specific claim.

[jmjm530]

Frank,

Sorry you're still having a rough time of it.

I take issue with what HCA said regarding the rarely of long-term side effects from interferon, if I read him correctly. while what you report is certainly not the norm, anecdotally we've had a long list of reported long-term post treatment side effects.

You might want to check out this health page to see how your symptoms correlate with others, and you might even want to contact some of them privately to see if they have any suggestions.

Link to the help page: http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64

I wonder if you could expand a little on the tendinitis problems you've been having. I'm been thinking about posting on this and probably will, but thought I'd get you here. Where is the tendinitis, did you have similar issues before treatment, etc. etc.

Personally, I've had a slew of tendons/muscle symptoms since I've stopped treating. In fact, I'm dictating this post using voice recognition software because of tendinitis in both arms.

I'm certainly not suggesting that my attendance/muscle issues have been caused by the interferon. There's certainly no way to prove it, and they could be caused by any number of things, including just getting older, dang LOL or maybe there is an association with the Statins I've been taking, although most of this occurred when I was not on Statins.

That said, and while I haven't really studied the Association between muscle damage than interferon,there is an association between psoriasis and arthritis. I had a mild form of psoriasis going into treatment but the interferon turned it into what I could best describe as a psoriasis nightmare. As is the case with many pre-existing commune system issues, interferon seems to speed up the clock, aging us many years ahead so to speak. Anyway, the muscles/tendinitis/interferon connection is one thing I've been looking into.

Hope these tests turn out okay and point you in better directions. It must be terribly frustrating presenting these symptoms of doctors who just shake their head. And frankly, that's what they're good at -- shaking heads -- when they're presented with something outside their areas of expertise and training. And the posttreatment symptoms that many of us have, is something they just haven't studied.

Be well,

Jim

[desrt]

Questions #1 & #2
Where are you sending the tissue to be tested and will you be having gene sequenceing done to recognize RNA strand fragments. In other words, besides giving you stage and grade of liver damage, will there be more elaborate, expensive ($$$$$$) testing being done.


Questions #3 & #4
Why are you not being treated by an immunologist and rheumatologist?