Hep C Discussion Forum

disappointed · Member

RE: Post Treatment Results: A Mixed Bag

xtra · Veteran Member

Here is another extra hepatic. Beethoven had this one. It can present as kidney stones. The list goes on..and on.

renal papillary necrosis

coolheat · Senior Member

You're funny Bubble; "I still walk funny". I was assigned a nurse the day I was given my first tx.. I don't believe I ever talked to her again. I was given a # to call, it was a message machine. No one called back. I called the reg. Dr office to get question answered, and they said no one is hardly ever in the office where the ph. rings. Only when they are getting someone started on tx.. Joke, saw reg. dr. this am. She will refer me to any new Hep. Dr. that Lucinda recommended. She will also request any test; blood test, etc. to ease my mind or find out what my body is doing. Sounds like you had a Good experience with your AbbVie Nurse. This stuff is importand for the patients. Its our bodies, could be our lives literally. WE aren't cattle in the negative sense of herding and running them through fast for more money. Anyone remember that song; Money, Money, Money, was it Walker?

bubble · Senior Member

I am not sure, just curious, do the people on Harvoni get an assigned nurse to communicate with during Tx.?

Tig · Admin

Marsha,

Absolutely! The testing process, accompanied by the trial results over years of study are exactly what qualifies or disqualifies a drug or treatment protocol. They are also supposed to pay particular attention to both side and adverse effects, safety, efficacy, drug interactions, pre existing conditions, etc., as part of the review and acceptance process.

bubble · Senior Member

My AbbVie nurse wanted to take me on the road and do apperances for the drug. No BS. Yes! And Now...."Bubble the poster Boy" She's been gone now for about a month. Wife got a kick out of that. (And so did I) I still walk funny. Lol.

coolheat · Senior Member

Tig, aren't they required to do testing to get passed by the FDA? Or the someone?

Femapples · Veteran Member

I had cryoglobulinimenia and the other stuff listed in my signature line before I started treatment. They were not caused by the Viekira Pak and Ribaviron. In fact, when protein was discovered in my urine, I had a battery of tests, including a kidney biopsy, and the kidney and blood proteins were discovered then. My doctors told me to stop fooling around and do the treatment. Then came the insurance battle which is a long story and resulted in Viekira Pak. My kidneys are functioning perfectly and continue to do so but the diseases are still there. My liver is fine so far. The GI was disappointed that the cryoglobulins didn't clear as they did with all of his Harvoni patients who had this. He will retest everything in December.

My nephrologist is cautiously optimistic about the kidney stuff because my urine proteins have reduced by half. I will be retested in January. I will see a hematologist in December about the cryoglobulins.

I know that everything I still have is treatable so I'm also cautiously optimistic but concerned.

Interestingly, the AbbVie nurse ended her communication with me at the 12 week post treatment mark despite knowing about the ancillary issues. Nice, huh?

By the way, I appreciate the information. It's good to know that others are in the same boat.

F.

Tig · Admin

No doubt.......... The other thing is, the new protocols are coming so fast now, they aren't stopping to evaluate the adverse effects of individual treatments like they did with the older protocols. With Interferon/Riba, they had to address the problems that arose during and following treatment, because it was all they had to offer over several decades. Now it seems the goal is to achieve SVR, period, end of story. As effective as these new DAA's are, I hope they start to address the side effects and adverse reactions to these blockbuster treatments and try to reduce or eliminate them if possible. Looking at all the new possibilities, Big Pharm is concentrating their efforts on new drugs, not improving old ones... JMHO of course.

bubble · Senior Member

Not sure about the other things Hep c causes/complicates. But the articles just word mostly that Vikera pac "causes side effects". They really dont commit to saying just what though.....Hmmm. Gotta love Big Pharma. Harvoni does not get dragged in the mud much.

coolheat · Senior Member

A friend of ours runs a tissue bank in calif. and was telling us about it. He had attended a conference earlier in the year back East and the company was talking about what happened with the woman who ate the mushrooms. The comp. deals with rare situations and healing children. They are getting on the bio end currently. The fetus that was used came from a set of twins. The one twin had a congenital disease of the brain and wasn't going to live. They used that fetus's liver to save the woman who ate the mushrooms. I do believe in our conversation, he mentioned some stem cell work as well being done. My description was rather crude, but apparently the process is fairly simple. The injection was done as a local, no hosp. needed.

Tig · Admin

It's there, listed a bit differently however.

Membranoproliferative Glomerulonephritis (MPGN) is a condition affecting the kidneys that is usually (but not always) associated with cryoglobulinemia. Symptoms include weakness, edema and arterial hypertension. Treatment consists of treating the under- lying cause hepatitis C. However, if there is severe kidney impairment, ribavirin should be avoided.

xtra · Veteran Member

Tig

The web page missed an important extrahepatic: Glomerulonephritis

Damage to kidneys which in cirrhosis can be a very serious complication. I read one web site that stated that condition was more specific to Hepatitis because it is a virus. It is later to develop and less often seen in Alcoholic/NAFL forms of liver fibrosis/cirrhosis. I don't know if that is true. It was a layman source, not a technical document.

Tig · Admin

The thought of fetal liver tissue being blenderized and injected into my liver, so I might survive, sad. I wonder if it's similar to the stem cell injections that have been such a hotbed issue? I hope an equally effective method to help and to cure is found soon...

I believe the incidence of extrahepatic manifestations are far and wide. The reports of improvement in many areas are out there, but for many, these improvements come too slowly. I have moments when I realize that small things have improved greatly and even disappeared almost without notice. Unfortunately the issues with arthralgia and brain fog seem to take their own sweet time. We can be hopeful that we will see improvements in different areas, but we also have to accept the fact that some may never improve. What we can cherish though, is that SVR means an end to the malady we share or shared. By stopping that, we have given ourselves a chance to step off that train. I keep telling myself, one day at a time and fortunately I can say most days are pretty good. At least my liver is in a much better place.

Here's a list of possible extrahepatic manifestations and I'm sure there are others. Some of these I had and are now improved. I'm not going to deny that each and every one of our complaints is either serious or troublesome and often warrant continuing care. But when you read a list like this and when discussing it among ourselves, we all know our condition could be far worse. We have vanquished a beast, rebuilding our hamlet will take time.

http://hcvadvocate.org/hepatitis/factsheets_pdf/extrahepatic.pdf

dharmabum · Senior Member

Hi Coolheat,

Is the treatment that you mentioned below considered stem cell transplatation? I wonder, would it offer a alternate/complementary treatment to those with liver cirrhosis waiting for transplant surgery?

coolheat · Senior Member

The cure rate is a factor in the results I have been reading. Especially for GT 1b. Looks like VP+Rib is the 100%er for that one. I have been doing a lot more reading on this site in the info. area, and following portals to a lot more info.. Gilead just came out with a statement page yesterday, on stats and their newest tx coming out. This next week is a big liver convention or conference is coming up in Egypt, somewhere in the mid-east anyway. I was just reading about a Canadian bio-comp. that is using fetal (sorry) yes fetal liver tissue and like putting it in a blender of sorts and non-invasively injecting it into the sick liver and it enables the sick liver to heal Quickly. The first person they tried it on was someone who ate deadly mushrooms and was dying fast, they injected the liver cells and the person went home next week fully recovered, otherwise they would have died.

Fem, what are all the other complications besides cryoglobs that are left in the wake of the hep c? I had also heard that there are other auto-immune diseases that can come up as secondary to the hep c. I will watch the thread to see what you come up with. Good question. Marsha

Femapples · Veteran Member

But it's not just the cure rate. It's the ability to knock out the other issues that Hep C causes. Is Viekira Pak with Ribaviron (or without) as effective as Harvoni in dealing with them? I haven't been able to find anything on this.

F.

bubble · Senior Member

Yes Femapples, I have been thinking also of us manority. I would like all the "Vikerians" to poke around and ask how your Doc's treatment is going with Vikera-Pac and Harvoni. My Doc has had no relapsers or non responders since he began prescribing Vikera-Pac in early 2015. Harvoni-Smarvoni! Abbvie is dealing out VP alot easier to Doc's now than Harvoni. I am so gratefull for my tx!.

I have been seeing all the paid for negativity about Vikera-Pac being the one with all the side effects, and the one that has the most failure rate. To all you 1B er's: You have a 100% cure rate ! 1A er's are 94% to 96%. The pan-genotype era pill is comming soon. The other genotypes are close to these cure rates in trials. Dont believe the media totaly. Congrats on that new feeling again. March on!

Tig: I love that "Dragon Slayers" decal for your car

Femapples · Veteran Member

It feels great to know that the insidious demon isn't lurking.

Fem

Penelope PePod · Senior Member

RE: Post Treatment Results: A Mixed Bag,Conrats

Femapples · Veteran Member

RE: Post Treatment Results: A Mixed Bag

xtra · Veteran Member

Thanks Marsha and Cinnamon Girl

What I seem to have learned,

The eGFR on a blood test seems to be a flag to the Dr. The Dr. uses that information to order more tests or not, depending on what the eGFR is.

That is my meager understanding. It is a "sign" to the Dr. Check this or don't check this but it is only meaningful to Dr. in conjunction with other symptoms.

This blood work has many tests that seem to be flags, a general snapshot of many things that allows the Dr. to monitor several organs at once or maybe the liver is so vital to all those organs that the test reveal more than simple liver function.

For Instance, one of the Leukocytes or Mono, I forget which one, if that is elevated, then it is possible that could mean TB so the Dr. would order further tests. The test does not diagnose TB, it merely flags the Dr. to the possibility.

I believe the eGFR is a similar flag that signals the Dr. to a potential problem, maybe, more testing required.

That is my now simple take on some of these tests but I am very new to this.

No one should take anything I guess as gospel, certainly.

coolheat · Senior Member

Hi Fem, congrats on your SVR! Sounds all wonderful. They tested me for Cryoglobulin, QL. I will post the part about that in attch.. The Dr., which is sounding less believable all the time, said that it is a sub virus caused by the hep c virus. Usually the antiviral tx we take will kill the hep c and in turn kill the cryoglobulin. Depending on how long you have had cryoglobulin, there is a potential that some level of damage has occurred. The cryoglobulin is usually destroyed with tx, but in the wake there could be existing health problems from it. He also said that cryoglobulin itself is when our bodies become cold our blood clumps and that in itself can lead to problems. When I had my blood drawn last, the gal ask me if I was a clumper? I believe now that is what she was referring to. According to what my dr. said, I do not have it. Also you mentioned GFR, I saw this info. on my lab report. Did not know until now that it has to do with the kidneys. Maybe this is helpful to you, maybe not. Again, Congrats on your SVR Marsha

-- Edited by coolheat on Tuesday 13th of October 2015 08:53:09 PM

Cinnamon Girl · Guru

Hi MM, here`s a link to a good overview of what the different lab results mean, you might find it interesting to read...

http://www.hepatitis.va.gov/patient/hcv/diagnosis/labtests-single-page.asp

Don`t worry about asking questions, that`s how we learn... smile

Tig · Admin

I have heard that creatinine levels can be affected by dehydration. We are all familiar with the need to adequately hydrate during treatment, if not a little extra for good measure. Here's a 2003 article that was researched quite well that may provide you with some helpful data.

http://labmed.ascpjournals.org/content/34/10/736.full.pdf

xtra · Veteran Member

Thanks Tig 56

I already know what eGFR means, sorta

So, the good news is I am going through that lab result and learning what every one of those levels mean. Amazing what I have learned about my health, including many organs and systems. I see some high normal, low normal that can be addressed with diet and exercise before those slide off the scale.

If a person has mild kidney problems, getting rid of the Hep C seems like it would be a very good idea because anything that makes the liver healthier and better functioning is going to help the kidneys.

Is the creatinine level related to exercise? Or is it only organ related? I believe it is muscle mass. (Not very knowledgeable, maybe asking silly questions)

Tig · Admin

MM,

I haven't heard a lot mentioned regarding Harvoni and the GFR. I did find an ongoing study that is addressing this and you may be interested in following it as it progresses or see if they are still interested in applicants on treatment.

https://clinicaltrials.gov/ct2/show/NCT02503735

bubble · Senior Member

Hi Femapples, nice to see you did it. Congratulations! Dont beat yourself up on the other stuff. Get a 4 week SVR and take it from there. The Tx. really alters everything. My glucose/serum went way up. Back in the normal range. Not aware of GFR. Let your system recover and take one step at a time. For right now I would enjoy that info. You should feel physically better and soon gain some energy from your results. The SVR 4 weeks and SVR 12 weeeks are what Abbvie wnts to see. Boy, when you put the brakes on you past life styles and get this kinda news you really feel born again.....now get out there!!! Keep us informed.

xtra · Veteran Member

Just as a curiosity,

Das anyone else noticed a drop in GFR during or after treatment?

Jaded · Senior Member

Congratulations on SVR. As far as kidneys go...my last 2 tests (currently on week 21 of 24 tx Harvoni) have show a drop of Estimated GFR of 65 & 64 from around 90 (above 60 being normal). I am a little scared about being so close to the lower limit and wonder if it's because of Harvoni and if I'm beginning to have kidney disease. My Dr says he is not concerned at the moment. I have read that solvadi has an effect on the kidneys...I will have to wait and see what happens. Good luck and I wish you success.

Cinnamon Girl · Guru

Brilliant news, Fem, congratulations!! biggrin

Yes, I agree with Tig, this is definitely SVR! These new drugs are so powerful and effective, and the relapse rate is so low, that a 12 week post tx undetected result is now considered to be the benchmark for SVR.

I`m afraid I can`t help with your question about cryoglobulins, and I hope this is something that will resolve itself over time.

Many of us here feel that we`ve been left with an assortment of lingering health issues but the most important thing is that you are now free from Hep C, and that is really something to celebrate and be proud of!

Best of luck with your appointments, do keep in touch! And enjoy your success, you did it!!

wmlj1960 · Moderator

Hi Femapples.

The only thing we can do about mistakes we made 45 years ago is to take better care of ourselves these days. Your effort in completing treatment and being still undetectable at 12 weeks is proof that you are doing that. A big congratulations is in order for your achieving such a success . I don't know anything about cryoglubulins, but I do know that continuing to take care of yourself should remain as your top priority in resolving this issue. I wish you well at your upcoming appointments and hope to hear more good news when that time comes. You're doing what you need to be doing. Keep up the good work! smile

Tig · Admin

Hi Fem,

Good to hear the good news! WOOT!! Congratulations, by todays new standards, you have achieved SVR. Many doctors still adhere to the old standard of 6 months. But the proof is out there, so I'm sure that you'll be undetected at 6 months as well. Don't sweat it, you did it, woohoo!!

I hope someone that has more experience with cryoglobulin irregularities will chime in here. I do recall members that had renal problems during treatment did improve over the course of time following SVR. I'll keep my fingers crossed that you see improvment soon. The hematologist and nephrologist should be able to narrow down some things and hopefully recommend something to help the process.

Stay positive and realize that after decades of liver disease, things happened and we all wish we had a do over. But you've defeated the Dragon at it's own game and now your liver has a renewed chance at a healthier future. Let it recover and I have a feeling you're going to reap a lot of benefits as well. Good luck and please let us know what the specialists have to say.

"It's a new day!"

Femapples · Veteran Member

Hi Folks,

Haven't posted in a while as I wanted to wait for all results to come in.

I'm still virus free at 3 months post treatment. AbbeVie says I'm SVR but my doctor feels 6 months virus free would be SVR. Either way, fine with me.

However, cryoglubulins are still in my blood and he feels that since I was virus free 4 weeks into treatment, after 5 months it should have resolved. So he's sending me to an oncologist hematologist. He doesn't feel that it's leukemia because the proteins that are in my blood are polyclonial, not monoclonial which would indicate a cancer. Still and all, I'm not happy.

Also, there are 4 counts that are just outside of normal. Taken together, they might indicate the beginning of kidney disease. I do see a nephrologist, so she'll be keeping an eye on that. Last time I saw her, she was cautiously optimistic.

I'm seeing the nephrologist in January, the hematologist in early December and the gastroenterologist in January.

Boy oh boy, I really did it to myself 45 years ago, didn't I?

Has anyone had this stuff happen and if so, did it resolve after the virus was cured? If so, how long did it take?

I would be cursing and swearing but this forum doesn't allow bad words.

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