Hep C Discussion Forum

tombee31 · Member

RE: Confused

Tig · Admin

Hi Camino,

That's interesting to say the least. But fortunately in this instance you can celebrate the results. I want to include some prescribing info on Peg IFN so you can compare it to your own situation. There are some instances where they reduce the dosage, but rarely to 80. If you have renal disease or some blood issues, that could explain it. Who knows! Doesnt matter at this stage and we can be grateful for your success! Good luck!

http://www.rxlist.com/peg-intron-drug.htm

Tig

Camino · Newbie

Hi Tig,

I went back to my Rx receipts to be sure of accuracy on the peg. The receipt printed is: PEG-INTRON REDIPEN

80MCG/0.5 QTY # 2 - (2 redi-pens for the 2 week supply) You also mentioned weight might be a factor. I was probably about 120 # +/- and during the 3 month treatment they took vitals and weight once that I remember, maybe 2 x. Back up to 140 now. As for the Riba timing, the pharmacist laid out an 8 hour spread between doses at the beginning. I still had some trouble sleeping and mentioned it to her. She said no prob, take it earlier, as long as it was at minimum 4 hrs. between doses it made no difference. At the beginning everyone was so darn serious and the plan and the timing was laid out like clockwork. Then, when I mentioned some trouble sleeping, which was not a big deal to me because I was determined to do go through with it no matter what, she say's "ah, not a prob, take it sooner if you like, just make sure there's a 4 hr. spread between doses." oh, gee thanks, next time I get hepatitis i'll know better. I believe they do the best they can, however, they see people like me every day. They care, yes, but they do not take it as personal as I do and that is where my confusion comes in. "here's a perfect plan, ahh heck, change it". Sorry for sounding negative. The treatment worked and that's all that matters. I hope everyone does as well or better w/ their treatment.

Tig · Admin

Hi Camino,

Yes, starting Peg at the 5th week is certainly unusual as all protocols that utilize it call for it to be started on day one. You mentioned your dose was 80 meq, most are given 180meq/week, occasionally less depending on weight. The other odd thing with your treatment was your Riba timing. It should be taken every 12 hours, sometime the second dose can be taken a little earlier to help with sleep, but not breakfast and lunch like you did. It goes to show you there is a lot we don't know about this stuff! I'm thrilled your tx was successful! Enjoy your Hep free life, that's what matters!! Good luck...

Tig

Camino · Newbie

Hi TIG,

Was unaware that starting peg in the 5th week was unusual. KP (Kaiser Perm- pdx) recommended it so I did it. (Their estimate was 90% cure rate w/ sofosbuvir and rib.) I did sense some confusion on their part at times, however, I was one of the first in their treatment program and maybe they wanted to be sure the HCV was wiped out for good. I figured they knew more about it than I did. Thanks for commenting. smile

Tig · Admin

Hi Camino,

Welcome to the forum! I invite you to introduce yourself in the New Members section and tell us a little about yourself. I don't want to hijack Tombee's thread here, but I'd like to hear more about your treatment. Starting a delayed course of interferon is unusual to say the least! But I'm thrilled you achieved SVR. Please start that intro when you have a chance.

Tig

skewedButNotBroken · Senior Member

I did not read all of the replies, so this may have been already stated, but typically someone who uses alcohol, anxiety or pain meds and does NOT have hep c will have a higher AST level in relation to ALT, but the typical hep c patient will have a higher ALT/AST ratio if they are not drastically abusing alcohol or meds. This is not written in stone, but it is typical.

Any doctor worth his weight in salt should know this. If I were you, I would go back and look at my historical ALT/AST ratio levels to verify this.

After I was told I had hep C back in 1992 (I tried to donate some blood), I went to a doctor and did not tell him anything about my diagnosis and based on my ALT/AST ratio he ordered a hep c test.

Camino · Newbie

Hello. Wanted to share this in hopes that it is helpful to others. Started Meds 3/28,2014 - Finished 7/2/2014

1.) Per blood test, Hep C was cured in 3 months w/ 400 mg.Sofosbuvir, (SOVALDI) daily for 90 days; + 200 mg Ribavirin, 3 caps w/ breakfast and 2 caps w/ lunch (1000 mg Ribavirin Total per day) for 90 days.

2.) 5/8/14 Started/added PegInterferon 80 MCG weekly doses (8 weeks of self-injected- 1x per week) to above prescribed Sofosbuvir and Ribavirin. Last dose of PegInterferon was 7 days before 7/2/14

3.) Bi-monthly Blood tests were taken 3/28/14 - 7/2/14. I was sent the "numbers"/ results, however these were difficult for me to interpret and I repeatedly asked for the specific "number" that said the Hep C was "not detected". They seemed reluctant to tell me. In hindsight, they told me that I was one of the first people to get the Sofosbuvir, Ribavirin and PegInterferon Treatment. I'm not sure they knew what might happen since I was "one of" the "first". I was dealing with an RN w/ the authority to prescribe medication but I did not feel a close relationship w/ her and when we did speak to one another I always had the feeling that the smile and the talk was impersonal. I did not feel a good rapport w/ her. She could speak very well but did not tell me much. She also had someone above her status to report to and I never saw him during the 3 months of treatment.

4.) In my experience, this is what to expect:

a.) Flu-like symptoms during the treatment and for a month or so after. It's not pleasant but it is definitely worth the symptoms for 3+ months and have them done with than be tired all the time forever.

b.) There are many side-effects that you will be told of. I did not get that many and what I did get was not as bad as they said. My skin got dry and I bought a lot of lotion to help. My skin itched and I kept rubbing on the lotion. My hair thinned as they said but is getting back to almost normal. In time it will be fine.

I hope this is helpful to anyone who is thinking about treatment or that may be going thru it now. I was a bit lost and was not entirely sure of the medical staff because of the impersonality of it.

Hope this is of help.

tombee31 · Member

Thank you again Tig, that's brilliant. Oh and thanks Terry, interesting and encouraging.

Tig · Admin

tombee31 wrote:
Thanks Tig, for some reason I can not attach the file..........................
So here goes:
Collected 20 June 2014
US Upper abdomen
Clinical History: Grossly inflated LFT's
Us Upper abdomen: The right lobe of the liver appears subtly heterogeneous and subtly patchy fatty in reflectivity, with a finely irregular margin. The left lobe of the liver appears mildly heterogeneous with a mildly irregular edge. Appearances are suggestive of cirrhotic change. No definite focal liver lesion seen.
Splenomegaly noted (bipolar length = 16cm) No abnormality is seen in the biliary tree, gallbladder, kidneys or head and body of the pancreas. Tail of pancreas and aorta were obscuted by overlying bowel gas. No ascites.

Hi Tombee,

Looks like your liver function tests were elevated, which is common in anyone with HCV or other liver issues going on. That's usually the first indication to the doctor to perform further blood tests. They are probably referring to the ALT and AST levels.

My interpretation is that you have some fatty liver issues developing and the normally smooth edges of the liver are looking irregular but mildly in nature. The radiologist feels there might be an indication of cirrhosis, but it is difficult to determine that on the standard diagnostic ultrasound. That's determined by either a Fibroscan or a biopsy. There is no evidence of any lesions on the liver itself.

There is also mention of splenomegaly. That is simply an enlarged spleen and can also be an indication of cirrhosis. When there is portal hypertension, the spleen enlarges. There is no other evidence of biliary problems and no ascites. Ascites is the accumulation of fluid in the abdomen that is seen in severe liver disease and advanced cirrhosis.

Seems that you've got some issues going on, but you know that. Possible signs of cirrhosis and your doctor will next request you have some additional testing to determine your level of fibrosis. We discuss these topics all the time and can help you understand the process as it goes forward. Don't worry about this, but understand that it's wise to find out what's going on and since treatment has improved so much recently, it's a great time to get it treated and then let things start the repair process. Hang in there!

Tig

Terry · Senior Member

Your story hits home because I also had that Rash on the upper part and when my doctor looked at it he told me it was serious and I had stage four cirrhosis and would need a liver transplant. Not to worry thought because I have since been clear for a year and my blood readings are great and the liver will rebuild itself over time. Just do as your doctor tells you and be religious on the treatment and the times that you take the drugs. Exercise is great because the drugs can work on you and it is a stress reliever. I suspect after you clear the hep c the other problem may not be there either. Good Luck

tombee31 · Member

Thanks Tig, for some reason I can not attach the file..........................

So here goes:

Collected 20 June 2014

US Upper abdomen

Clinical History: Grossly inflated LFT's

Us Upper abdomen: The right lobe of the liver appears subtly heterogeneous and subtly patchy fatty in reflectivity, with a finely irregular margin. The left lobe of the liver appears mildly heterogeneous with a mildly irregular edge. Appearances are suggestive of cirrhotic change. No definite focal liver lesion seen.

Splenomegaly noted (bipolar length = 16cm) No abnormality is seen in the biliary tree, gallbladder, kidneys or head and body of the pancreas. Tail of pancreas and aorta were obscuted by overlying bowel gas. No ascites.

Tig · Admin

You're welcome! I failed to say that if you post your U/S report, we can give you our opinion.

Tig

tombee31 · Member

Hi Tig, the type of scan I had is the first one you mention, most internal organs were examined. Thanks

-- Edited by tombee31 on Friday 14th of November 2014 05:02:51 PM

Tig · Admin

Hello,

There is diagnostic ultrasound, where they examine your internal organs and soft tissues. Then there is "Fibroscan", which is also an ultrasound test that uses a special probe to determine the time a signal passes through the liver. It is fairly accurate, more so than the blood test called "Fibrosure" that compares several blood markers.

Tig

tombee31 · Member

Pester #1: Is cirrhosis diagnosed via ultrasound via ultrasound, can cirrhosis be diagnosed through blood tests?

I have had an ultrasound, if I were to post the text of said ultrasound, would someone be kind enough to translate from "medical language" to "human language?"

I guess I should have discussed this with the Doc when I got the Hep C diagnosis, but to be honest my brain was in a bit of a whirl from the news.

Thanks again kind people.................

tombee31 · Member

Brilliant Cinnamon Girl, thanks again. Prepare to be pestered ;)

Cinnamon Girl · Guru

Feel free to pester as much as you like, tombee31, Hep C is our favourite subject to talk about round here...you`ve found the right place! smile

If you`d like some general information then I recommend having a look through this series of fact sheets, from the Hep C Advocate website. The link is also posted at the top of this New Members` Area.

http://www.hcvadvocate.org/hepatitis/factsheets.asp

tombee31 · Member

Thank you CG, as soon as I have more info I'll post it here. In the meantime I'll continue to pester the life out of this board.

Cinnamon Girl · Guru

tombee31 wrote:
Thanks so much for the warm welcome and useful info. Much appreciated. Does anybody have any experience of the hospital in Ipswich UK? This is where I have been referred for treatment. Thanks again.

Hi again, tombee31, I don`t have any experience of Ipswich hospital but I do live in the UK and know roughly what the situation is as far as current treatments are concerned. Once you have more information, for example your genotype and any other test results, we`ll have a better idea of what your options are going to be.

We`re not as up to date over here with the new drugs as our friends in American, but the good news for you is that as you have cirrhosis you`ll be prioritised for the most recent and effective treatment available.

Isiscat2011 · Guru

tombee31 wrote:
Thanks for your welcome Tig56. I think I'll be around to annoy the pants off you for quite a while...........

Welcome tombee31:

I actually hold the number one spot for annoying the pants off Tig around here. biggrin

Looks like you got your original question well answered so no need for me to chime in there.

Love to see UK folks here! The only thing better would be hearing your accents. You might want to put where you are from in your bio. Otherwise us Americans will just assume you are in the US and blabber on with American answers which are not always applicable to the UK.

tombee31 · Member

Thanks so much for the warm welcome and useful info. Much appreciated. Does anybody have any experience of the hospital in Ipswich UK? This is where I have been referred for treatment. Thanks again.

Sierrajen · Veteran Member

Welcome to the forum Tom,

first of all I wanted to say that the people here for the most part are extremily knowledgeable about hepc. second i wanted to get you a list of place to find out what the letters mean.

http://www.hcvguidelines.org/full-report/methods-table-3-commonly-used-abbreviations-and-their-expansions

and this from Malcom:

http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/?page=1#comment-51085702

Hope that will help you

Hugs

Jen

LC · Senior Member

Hi Tom, by promising new treatments, they mean Interferon-free treatments.

There are apparently some other lazy doctors out there who are still prescribing peg-interferon, so don't let them sign you up for that misery.

Gilead makes a drug called Harvoni that is all the rage right now. AbbVie has a combo that should be FDA approved within the next month or two. I am currently on there drugs and I've been very pleased with the side effects and results. Merck has a treatment out that is also yielding similar good results.

Welcome to the forum!

Tig · Admin

Hi Tombee,

I wanted to give you a link to some information about the number you provided (5.26). That is the logarithmic value given for your viral load. According to this chart, your viral count or copies per millliter is between 175,000 and 200,000. This is considered quite low in the big picture.

http://www.hepatitiscentral.com/hcv/hepatitis/loadchart.html

Tig

OldenSlow · Senior Member

Hi Tombee,

There isn't much doubt you could have received more astute medical advice, but what's done is done. More important is what you now know and what you do going forward. I would advise educating yourself as best you can in all things HCV (this forum being an excellent resource for that), continue to abstain from alcohol and other liver toxins, get a biopsy or fibroscan to aid in staging the degree of liver damage, and explore treatment options with whichever specialist you are referred to.

My liver enzymes were skewed for a decade before being properly diagnosed. It's not uncommon. Remember that 50% of the medical profession finish in the bottom half of their class. wink

wayne

tombee31 · Member

Thanks for your welcome Tig56. I think I'll be around to annoy the pants off you for quite a while...........

Tig · Admin

Hi Tombee,

Welcome from me too! I'm glad you found the forum, we've got a lot of great people and helpful information is available by both asking and utilizing our search function.

I'm sorry you weren't tested for the virus many years ago. It seems likely you were experiencing signs and symptoms of HCV when you first tested with high LFT's. As Jill mentioned, CFS often accompanies or is diagnosed around the same time HCV rears its ugly head. I'm sorry your doctors didn't think to test you for it back then, they certainly should have. Alcohol in any form has been found to fan the flames of HCV and is something we should stay away from, especially during the active/chronic phase of the infection.

The new treatments for this disease are very promising and your first appointments will determine the status of your liver and the best course of treatment for you. Please keep in touch and let us know what you find out. We're here to both help and answer any questions you might have. Do your best to not worry, its a great time to treat. You're among friends, remember that...

Tig

tombee31 · Member

Hi all and thanks for your warm welcome. I have some results but as yet have not discussed any treatment options. The results just look like a load of numbers to me lol. (Hepatitis C level is log value 5.26, whaatever that means) I'm still awaiting genotype results. A liver biopsy has been mentioned and then a referral onto a more specialised unit for treatment advise and options, not quite sure in what order this will all happen though.

Thanks again.

Cinnamon Girl · Guru

Hi tombee31, welcome to the forum, I`m glad you found us!

Thanks for introducing yourself and sharing your story. I was also diagnosed with CFS before my Hep C was discovered, and that was in 1995, so I can understand your confusion. Back in the mid `90`s not many doctors were as aware of HCV as they are now because the virus had only been identified in about 1989. Before that it was referred to as `non A, non B` hepatitis. And even if it was picked up the success rates of the treatment that was available at that time were hardly worth considering unless someone really had to do it.

With your history and the fact that the liver damage has progressed to cirrhosis I would say it`s quite possible that the Hep C was responsible for your CFS symptoms from the start, although of course I can`t say that for certain. Alcohol consumption definitely increases the likelihood of liver damage and cirrhosis for anyone who is infected with this virus too.

If your LFT`s showed raised levels of liver enzymes at least 8 years ago, then I would have expected any doctor to do further tests and check for HCV but clearly it was just put down to your drinking and wasn`t investigated any further.

Apart from that, I`m sorry you`ve had such a shock getting this diagnosis, all of us here know what that feels like, and it`s very unfortunate that it wasn`t picked up earlier. I know it`s very early days yet, but have you discussed treatment options with a hepatologist or liver specialist yet?

Wishing you all the best! Jill

Michaele · Guru

Hi, Welcome, you'll learn alot here. I have had Hep C over 40yrs,it wasnt Dx til 2001 or 04. That doesnt matter. I was getting so sick I had to stop working, I told Dr to do a liver profile which she did. She sent me a letter saying its nothing enzymes were slightly elevated but it was nothing. About 6 months later she left and I told the new DR, who hit the roof. He redid test and said we need to test for hepC and it was +. Anytime the liver enzymes are even slightly elevated they should be retested in a few weeks and if still elevated a test for HepC is a must. Hope U get new Tx and a "Cure".........michaele Oh and by the way, they did thousands of dollars worth of test, had given me so many Rx that I would be taking over 23 pills a day. I kept getting sicker. I didnt take all the stuff they gave me Rx for, even before I was tested +.

-- Edited by Michaele on Thursday 13th of November 2014 03:04:53 PM

tombee31 · Member

Hi all newbie here, I have recently been diagnosed with Hep C (last week) so this is all new to me. I would just like to run through my story and get your opinions if that's OK?

I'll try to keep it brief and to the point. In 1996 I became very ill, after a couple of years of extensive tests I received a diagnosis of Chronic Fatigue Syndrome. During the testing process it also became apparent that I was suffering from high cholesterol and a course of statins was embarked upon. People taking statin will know that they can have an adverse effect on the liver and therefore annual LFT are carried out to monitor the health of the liver. About eight years ago my doctor mentioned that my LFT were abnormal and asked me if I dank alcohol to excess, I have always had a fairly busy social life and therefore admitted that I did enjoy social drinking. My doctor informed me to cut down on the hooch and continued to do so until this summer (2014) During the latter part of 2012 I began to feel very unwell and assumed that the CFS was having a resurgence, but I developed a strange rash on my upper torso. I visited my doctor early 2013 and he put the rash down to medication that I was taking for hypertension. I had my annual LFT in May 2014 and again was told that I was drinking too much, I was also informed that my rash was Spiders Navei. I was immediately told to stop drinking altogether and to stop taking cholesterol lowering drugs, further blood tests were undertaken along with an abdominal Ultrasound. I was then informed that I had Cirrhosis of the liver caused by excess alcohol use. Further blood tests were completed and the diagnosis was changed to Cirrhosis of the liver caused by Hepatitis C. Shocked does not describe my emotion!!

My question to you guys; is it possible that the medics have completely missed the Hep C and were happy just to blame my abnormal LFT on alcohol when really there was something more sinister going on with my liver (lazy doctoring). From a quick look around this forum I have noticed that the progression from infection to cirrhosis can be as long as 20 years, should my problems not have been picked up earlier and treated, after all the medical profession obviously knew something was amiss? Could my CFS been misdiagnosed, when really it was Hep C that was the start of all these problems in 1996? Have the medical profession been incompetent or negligent?

Thanks in advance for any input and I hope I haven't bored you.

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