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253566 tn?1219683299

Doc Questions. SVR Biopsy. "Cure" Disabled Me

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?
25 Responses
Avatar universal
A cytokine storm is an unusual event-what put into your mind?
.You will have had interlukin storms which is normal.
Have you had an abdominal ultrasound?
From your description it would be more appropriate than going straight in with a biopsy.
If you had an ultrasound ask the doc if it was normal.
Ask why he wants a biopsy-sounds obvious,but it's the big question.
There have been long term adverse pharma-kinetic events from interferon but they are rare.I would be amazed if you have some chronic cell disease from treatment-I am assuming you cleared the Hep C virus
If the ferritin tests are normal I don't see how your 'iron system' could be 'in chaos'
Lots of people have lingering syptoms such as fatigue for a long long while.
You seem a bit stressed whch will make you feel worse-try and take it easy.
148588 tn?1465782409
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?
Avatar universal
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
Avatar universal
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.
Avatar universal
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
Avatar universal
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?
Avatar universal
"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

Avatar universal
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
Avatar universal
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
253566 tn?1219683299
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...
253566 tn?1219683299
forgot to add that Macs would be the answer to Vista/"7". Leopard is a dream to work on, LOL
Avatar universal
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.


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