Elated and scared

[jpinthekeys]

This is not really a question as much as an introduction. I am John and was diagnosed in 2003 with HEP C. Went through peg-intron with 32 mil viral load in 2007 and did 48 weeks of treatment but was a relapser, viral load spiled to 12 mil after treatment. I am 1a and now viral load is about 17 mil. My liver damage is minimal with bridging fiborsis. I am starting the triple treatment in about 2 to 4 weeks for 6 months, So glad it is not 48 weeks as the first time around it was hell. The first treatment left its mark as I was left with depression and diagnosed bi-polar and am taking meds for that with has helped very much. I am elated to be able to get treatment as I an un-insured and unemloyed and this florida county is the first in florida to cover all costs. Yet I am very scared at the same time as
I went though a tough time last time. I was wondering what can I expect with the 4 weeks of telapriver as far as side effects. I am 55 and really looking forward to being able to get back to work. One footnote I applied for ss disability for the second time, they turned it down at the administratve Judge level in 2008 and this time I am waiting for the
administrative hearing sometime in the next few months which I fully expect another turn down. HCV is somewhat
like a cancer or HIV which they approve without question. I worked so hard since I was 14 and seems like the scale
is tipped against HCV. Anyway glad to have found this forum and will keep in touch.

[HectorSF]

John,

A sonogram is not used to diagnosis the stage of liver fibrosis. You need a biopsy to determine what stage liver disease you have. No one, including a doctor can guess what stage of liver disease you have. That is like guessing your blood levels.

Instead of explaining what each line of your report says let me summarize by saying all is normal anatomically expect for the hepatic steatosis.

It appear that the sonogram was done in order to look for gallstones. Which you don't have. (cholelithiasis is medical talk for gallstones). It was not done to determine the stage of your liver disease.

Heterogeneity means the fatty liver cells are seen throughout the liver as it commonly is.
Hepatic steatosis means fatty liver. Also called NonAlcoholic Fatty Liver Disease (NAFLD). Steatosis affects approximately 25-35% of the U.S. population. NAFLD is found in over 80% of patients who are obese. Diet and exercise are the treatments to reduce NAFLD.

Hepatitis C can cause fatty changes in the liver so it is common to see them together in a patient. The good new is you have the lowest grade of NAFLD, "mild", which is actually difficult to detect using a sonogram. It is much easier to detect "moderate" and "severe" NAFLD.

The good news from the sonogram is that you do not have cirrhosis of the liver. Stage 4 liver disease. When a person has cirrhosis the architecture of the liver changes and can be seen in a sonogram as shrinkage of the size of the liver and nodular growths on the surface of the liver.

I trust you are seeing a gastroenterologist who is experienced in successfully treating patients with the new triple therapies for hepatitis C? They will know that only a biopsy can determined the stage of your liver disease.

Hope this helps.

Hector

[libzo2]

Once again I have been edified by your waves of sucinct info especially the explanation of "bridging fibrosis".  Is that very compareable to "wefts of collagen" or "mild fibrosis"?  Thank you

To jpinthekeys:  It is really good that you are taking this on.  Congratulations.  You are in the drivers seat now.  Yeay.  I was able to get ssi or ssa, to tell the truth I don't know what it is but it is low - the best part is having med coverage.  I think I got it with the depression card.  I added all the business or appointment cards I had gathered from my many years of therapy - about 12 actually and sent a copy after my 2nd Hearing.  I think that did the trick.  Good luck.  Love your attitude.  You have good timing and you can beat this!!!!!!!

[jpinthekeys]

Thanks for correcting me, It is 12 wks on INCIVEK not 4 my mistake.

I went back and looked at the sonagram of March 2011 and for some  
reason thought bridging fibrosis was mentioned, however it stated Mild
Heterogeneity present consitent with hepatic steatosis. I pasted the inf below and have to admit I really dont know how to translate it into something I can understand, The doctors explanation is that he thought
It was still around stage 2. If you or anyone can explain in small words
what exactly the info below tells i would appreciate it, Thanks in advance

                   JOHN


The visualized pancreatic head, body and tail are unremarkable.
The visualized right kidney is unremarkable.
The visualized IVC and aorta are unremarkable.
There is mild heterogeneity present consistent with hepatic steatosis.
There is no focal mass or intrahepatic ductal dilatation.
There is no free fluid identified.

The common duct is normal in size.
The visualized gallbladder is unremarkable, with no gallstones identified.
There is no wall thickening of the gallbladder.

IMPRESSION:

There is no evidence of cholelithiasis.
Probable fatty infiltration of the liver

[HectorSF]

Hi John.

"My liver damage is minimal with bridging fibrosis"
I am surprise no one picked up on this...bridging fibrosis is stage 3 liver disease. (stages 0,1,2,3,4) It is not minimal liver damage. Now is the time you should treat again as your liver disease is starting to reduce your chances of SRV. Since you were a prior Relapser you have very good odds of clearing the virus with the new triple therapy.

Telaprevir /INCIVEK is taken for 12 weeks by the way...
Hopefully you will respond to treatment so you only need to do 24 weeks instead of 48 weeks.

As far as your footnote...receiving SSDI for HCV is difficult at best. You must prove medically that you can't work any job in the U.S. economy because of the limitations of your disease. Including something like answering phones or any other mundane task. This condition has to be expected to last at least a year. This definition is termed "permanently and totally disabled". Very few patients during treatment are that disabled during their entire treatment duration. If they become that disabled treatment is usually stopped.

As for "HCV is somewhat like a cancer or HIV " I'm afraid you are "misinformed" as Rick said when the Nazi officer asked him why he came to Casa Blanca and he answered "for the waters". Maybe you were joking and I didn't realize it?

Good luck with treatment.
Hector

[pooh55811]

I just want to add one thing. I just read your other posts. Maybe it was a mistake, but you said you would be treating with Teleprevir for 4 weeks. That is not the case. You take all three drugs the first 12 weeks and then you drop the Teleprevir and continue with the Interferon and Riba.

"Telaprevir. The prescribing information for telaprevir in treatment-experienced patients differs according to previous response category.[53] For previous relapsers, the response-guided regimen is identical to that for treatment-naive individuals: All patients begin with a 12-week period of triple therapy, after which individuals with an eRVR continue on pegIFN/RBV alone to treatment Week 24, whereas those without an eRVR continue pegIFN/RBV alone through Week 48 ."

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20New%20Agents/Module/Practical_Guide/Pages/Page%204.aspx

[pooh55811]

Hi John and welcome to the forum.

I just want to say something before I forget (brain fog, lol) and that is I think most docs are using Pegasys now and I have heard people say Pegasys may be a little less difficult than Peg-intron.

That said, everyone is different. Some people have mild side effects and others more serious. Some have few side effects and others have more.

The most posts we get concerning Teleprevir side effects are rash, anal/rectal problems, nausea, anemia. Of course, to various degrees, people also have fatigue, flu like symptoms, aches, malaise, brain fog, lck of concentration, but a lot of those are due to the other drugs. The thing is, no one knows until they start what their side effects will be. You will not get all of them. Be sure to discuss with your doctor how he/she will handle anemia (Riba reduction?, Procrit?) You don't want to get into treatment and get anemia and the doctor has no plan.

I got the rash, some anal problems, and nausea, but I controlled the nausea with Zofran 8 mg every 8 hours. I controlled the rash with fluiocinonide ointment and Hydroxyzine 50 mg every 6 hours. The main thing, I think, with the anal/rectal problems is to keep the stools very firm, not like rocks, but quite firm. It seems that when the stools get soft or loose they can really cause some pain and burning.

Not everyone gets the anal problems and, if you get them, they can be managed. I guess I would rather have them than anemia, and I did not get anemia.

I think, unless you have extremely serious/severe side effects, the treatment is quite doable and the side effects can be managed.

Some people continue working throughout treatment, others had to work part time or not at all. It just depends on your side effects.

If you go searching through the posts, do not be alarmed by the posts. Most people who are posting about side effects are seeking remedies for them. Most people who have no side effects or very few side effects are not posting. So the forum is lop-sided in that it appears everyone taking the meds is having a lot of side effects, but that is not true. It is just that the ones with no side effects are not posting.

If you do get side effects, please post them and we will all chime in with remedies.

The main thing is drink plenty of water. My doc said 4 gallons but that is a lot of water, lol. Keep the stools firm. Another crucial thing is that you need to take those Incivek pills every 8 hours and you need to take them within 20 minutes of eating a high fat meal (20 grams of fat before every pill).  Most of us got alarm watches or timers or more table top alarms to go off at pill time. You do need some type of alarm. It is just too easy to forget and miss a dose or take it late,  and then you jeopardized your treatment success.

Keep in touch and let us know how you are doing.

[adamben101]

Good luck.  The sides differ for each person, but you are ahead of the game since you already treated.  I would guess that triple therapy will be about the same sides you had previously.  on the bright side, possibly half as long to treat.