hepC w/ cryo treatment

[hopingfortruth]

I have carried the HepC virus for 45 years and never had any problems.  One year ago I was hospitalized for edema and kidney damage was detected.  I am scheduled for treatment, triple therapy, with interferon, riba and new Sofosuvir.  The Drs. at the University hospital are ordering the drugs now, to see if my insurance company will pay.  My Naturoapath believes that I should probably wait for more studies and new treatment without interferon.  She believes that the Cryoglobulinemia may be caused from rheumatoid instead of Hepatitis as my hep counts have always been low.  The Cryo flared badly three times over the past year and Prednizone is keeping it at bay ( I guess ).  It had caused very high blood pressure and consequently, kidney damage.  She says the "cure" is damaging and we should manage the rheumatoid  condition naturally, as a food allergy.    My Medical Dr. says otherwise, stating -0- long term damage could be done with treatment.  I am just as confused as ever.  I read here at MedHelp that HepC drug therapy side effects are under published.  I am 60 going on 35.  I want to stay that way.  Should I go ahead with therapy or wait for new drugs without interferon or just cruise along with good eating and health habbits?  Don't want to depend on Prednizone for long.  Also, do people take Prednizone along with the therapy?

[Dee1956]

Hi, before I treated with Incivek, Peg and Riba 2 years ago. I had cyroglobulinemia.  It was awful.  I would have flares where the red spots would come out from  foot to knee, then as they grew they would turn purple.  One looked so big it looked at if it was alarge  bite mark.  Then the swelling of my legs until I thought they would burst and the pain felt as if both of my ankles were broken.

I am sorry you are going through this.  After my sed rate was high I was sent to a rheumotologist who said that it was the HCV that was causing my problem and the only way to get rid of it was to treat the HCV

Once I treated and got to UND and SVR the cryo went away.    While I had originally been told that the brown stains that they cyro left behind would never go away, they are gone now, almost 2 years after tx.

I hope that you can start tx to get rid of the cyro, it can be very damaging to the body.

Good luck, let us know how you are doing.  Everyone above has given excellent advice as always :)

[pooh55811]

I have also completed treatment (Interferon, Ribavirin, Incivek) and I did attain SVR (cure).

Was treatment difficult? Well, I would say it was not a picnic. However, the worst part of treatment for me was the Incivek (which you will not be taking). The Incivek made me very sick. After I finished the Incivek (after 12 weeks) then the rest of treatment (total 48 weeks) was not as bad.  After completing the Incivek, I felt better but I still was very fatigued and weak and had no energy.  I also had a relatively bad rash which my treatment team failed to address in a timely manner. Had my treatment team addressed my side effects in a timely manner, treatment would have been much easier.

I did lose some hair, maybe half of it, but it fell out one by one, not in clumps, so most people never noticed that I had lost as much hair as I had. It looked the same, but it was thinner. It has since grown back.

After treatment was finished the side effects gradually disappeared. I feel considerably better than I did prior to treatment. Before treatment I had no energy and I was tired all of the time, Now I am not tired at all. I have tons of energy. I feel like a new person and I have a new lease on life.

When I started treatment, getting rid of Hep C was my primary goal. I accomplished that. However, even though treatment was no picnic, I would do it again in a flash if I had to. Successful treatment (SVR/cure) was well worth every day I spent on treatment.

[Diana66]

Well I read lots of things on several websites of people promoting different alternative  (natural) treatments for different disease. Eg. Vit C intravenous. The big majority of them never had a problem and they talk for the sake of talking promoting it for cancer tx. They get angry if challenged and keep supporting that option albeit no real supporting data exists. It is so bizarre but I found the promoters of alternative tx being real bullies.

Don't get caught into that. Ask your naturopath what is she/he basing the recommendation on. What studies are saying that her approach are dealing with the Cryo. Cryoglobulinemia is not fully understand even by the best specialists in the field so I really doubt that a naturoparh with limited knowledge will have the solution to that.

Docotrs are not out there to get you. And they are not out there to serve a company interests. I do live in New Zealand. Here is illegal for drug companies to interact with the doctors. We are doing our own internal testing after a drug is approved and only after that is approved locally. Figure that.

I had the luck to have one of the best hep C in the world looking after my case and I have been closely monitored

I also tested positive for hep B but in my case only for core antibodies and I was negative for hep B surface antibodies and for theDNA test. If they say they see evidence maybe from a vaccine that tells me that you only have core antibodies and if this is the case I do not think that medication is needed. But the doctor will need to make full hep B tests ( core, surface antibodies, antigen, DNA, etc) . Get more clarity on why you need Epivir.

As I said for Cryo you have the option of using Rituximab but in my mind that could also interfere with the HCV load and also the hep B

What is your exact status for hep B? Ifyou do have indeed the both conditions what is the recommendation for tx. I do not know well enough what is the approach in this case.

As for the tx for HCV - I really believe that it will solve your Cryo. Isit hard on kidneys?Yes it is and my values altered during tx but they seem to be ok now.

Hair - started to fall after 5 months and I losy half of it so I have been pretty lucky in that sense. It stopped falling before I finished the tx. It will come back :) - I hope

Was I sick badly? Yes I was, I had 3-4 days in a row when I could not get off my couch. Luckily we were in holiday so I did not miss work. I kept working through tx although I am surprised I have not been fired as my productivity was really low.

I finished tx on 2 Oct and I am still recovering. I am not yet feeling 100% and I am complaining all the time of a pain or another but lots of the pain I think is due to being inactive for so long. I tested negative for Cryo at the end of tx so that is a win. I am waiting for my 12 weeks test and I am trying slowly to get into more physical activity. Getting there. The majority of my blood tests are perfect with the exception of Platelets and neutrophils. Everything else is in the range

I hope this helps and feel free to pm me if you want

[hopingfortruth]

Thank you for your input.  I think you are right.  I am seeing a rheumatologist and a hepatologist at the Denver University hospital.  I just have a mistrust in drug companies, insurance companies and their influence over Drs.  BUT, I need to focus on getting well and feel lucky that what I have is treatable.  It is more confusing to hear folks say, just go natural because the drugs are so harmful.  I worry about the ribaviran being hard on the kidneys and just hope the Drs know what they are doing.  I have had a biopsy and have only 1.5 liver damage.  The hurry is because of the cryo.  It is under control at this time with prednizone.  I will see both Drs again at the end of January and be hoping the new meds come out quickly.  Sounds like the interferon and ribav is hard on the body.  Of course, so is hepatitis.  They see evidence of Hep b also, maybe from a vaccine, they say, so have been on Epivir, a drug used for HIV and hep b.  The pharmacist seems skeptical and it is $500.00 per month, ins. won't cover.    Wading through all this.  Thanks for your answer.  I would love to hear about your tx.  Are you finished?  Do you feel better?  Did your hair fall out and were you sick badly?  I am just starting on this path and haven't talked to anyone yet.  This is great to talk to others.  Thx again, hoping..

[Diana66]

Good eating habits will do absolutely nothing for you in regards to HCV and cryoglobulinemia

Pooh gave you great advice

I am apologizing in advance but your naturopath should keep her/his mouth shut and do not talk about things she/he has no idea about

I was a supporter of alternative therapies but I am questioning them now and realize that they have very little foundation. I had HCV , cryoglobulinemia and lymphoma stage 4, all caused by the virus.
I had several naturopaths, eat raw food with no results

The moment I started the treatment, cryoglobulinemia stopped and I did not have it ever since. I can only suggest that you start tx before your kidneys are damaged more than they are now. It does not seem to be an affective treatment for cryoglobulinemia except the treatment for hep c or Rituximab, a chemotherapic.

Before starting treatment I also had a slightly raised RA factor of 27, with the range being up to 14
That value also dropped during tx

I will bet on the cryo being caused by the hep c. As Pooh said, the fact that you have low counts is not relevant. I had pretty low counts as well. Beside, the counts are going up and down all the time so a test at some stage showing a low count does not mean that 3-6 months later is the same.

I hope you will have more clarity once your case is fully assessed by your doctors.

[pooh55811]

Here is a link to an article about all of the Extrahepatic manifestations of Hepatitis C:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

[pooh55811]

"I have carried the HepC virus for 45 years and never had any problems."
One year ago I was hospitalized for edema and kidney damage was detected."
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Many of the problems that Hepatitis C causes are not recognized or are overlooked, either because the symptoms are the same as for many other diseases or because people (as well as doctors) just don't recognize them as manifestations of Hepatitis C.  While the kidney damage could be from various causes, it could be from Hepatitis C also. In addition, Hepatitis C can cause Cryoglobinemia, which you say that you have.


"I am scheduled for treatment, triple therapy, with interferon, riba and new Sofosuvir."
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Hopefully these are Heaptologists (considering that you appear to have complication from Hepatitis C and/or from Rheumatoid Disease. Hepatologists would be the most knowledgeable and experienced in Hepatitis C treatment, especially when on has complications.
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My Naturoapath believes that I should probably wait for more studies and new treatment without interferon.  She believes that the Cryoglobulinemia may be caused from rheumatoid instead of Hepatitis as my hep counts have always been low."
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It is possible that the Cryoglobinemia is being caused by the Rheumatoid Disorder, but it is also possible that the Cryoglobinemia is being caused by the Hepatitis C virus. Many times if people can get rid of the hepatitis c they can get the Cryoglobinemia under control. Hepatitis C can cause damage regardless of how high or how low the hep C viral load is. The viral load is not a good indicator of how much damage the Hepatiis C virus is causing to the liver of to the rest of the body.  One woman on this form had a relatively low viral load and yet went into liver failure and needed a liver transplant. Whether you can wait for all oral treatments depends on your liver fibrosis stage. Have you had a liver biopsy and what stage of liver fibrosis do you have.


"The Cryo flared badly three times over the past year and Prednizone is keeping it at bay ( I guess ).  It had caused very high blood pressure and consequently, kidney damage.  She says the "cure" is damaging and we should manage the rheumatoid  condition naturally, as a food allergy."
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You do not say what type of Rheumatoid Disorder you have, but Hepatitis C can trigger Autoimmune Disorders and Rheumatoid Disorders are generally considered to be Autoimmune Disorders. Perhaps you need to see a competent Rheumatologist if you have not already seen one. Rheumatologist are generally the doctors who manage Rheumatoid Disorders.


"My Medical Dr. says otherwise, stating -0- long term damage could be done with treatment."
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Interferon may exacerbate Autoimmune Disorders so you would definitely want to have your Hepatologist working closely with your Rheumatologist in order to monitor your condition. Also, Ribavirin can affect the kidneys. You really need very competent specialists to manage your Hepatitis and your Rheumatoid Disorder and any treatment that you decide to do. Your decision about treating should be made with the input of your Hepatologist and your Rheumatologist.


"Should I go ahead with therapy or wait for new drugs without interferon or just cruise along with good eating and health habbits?"
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This is a decision that only you and your Hepatologist and Rheumatologist can make as they are the ones who know your full medical condition. Treating now versus waiting for all oral treatment will depend on your liver fibrosis stage as well as your full medical condition (Hepatitis C, Cryoglobinemia, Kidney Disease, Rheumatoid Disorder, and anything else that you have.