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Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: Anne A on April 26, 2016, 08:12:06 pm

Title: Fibroscan?
Post by: Anne A on April 26, 2016, 08:12:06 pm
Can someone please tell me the difference between a Fibroscan-which I see many of you talking about- and an MRI or Ultrasound?
Title: Re: Fibroscan?
Post by: Gaj on April 26, 2016, 09:01:25 pm
Hi Anne A,

In very simple non medical terms, ultrasound and MRI look at your liver to try and see any changes in its structure such as shape, blood flow, nodules and even heavy scarring from cirrhosis. Fibroscan on the other hand feels your liver to see how stiff it is and it can pick up very mild swelling, stiffening and scarring of the connecting tissues (fibrosis) well before it shows up in the other types of scans.
Title: Re: Fibroscan?
Post by: Anne A on April 26, 2016, 09:19:38 pm
Thank you for explaining the difference . Most of the medical people I've asked here don't know what it is -waiting to go to the big Fla.hospital where they do fibroscans IF my insurance will cover this and an Endoscopy plus consultation. Sure would like to know how my liver is holding up and thinking of the Harvoni treatment. My tests all say Chronic hepatitis C.  I have serious doubts I can withstand the side effects as I don't do well on any pills.
Title: Re: Fibroscan?
Post by: HazelAustralia on April 27, 2016, 10:15:58 am
Hi Anne A,
See how you go. The treatment is short and some people find they have no side effects.
I hope you can get your insurance to cover the tests you need.
By the way, I had a fibroscan - was completely non intrusive and painless.
Best,

Hazel
Title: Re: Fibroscan?
Post by: Anne A on April 27, 2016, 10:46:14 am
Thank you Hazel for the info about the fibroscan-I wondered if it was painful or not.
I will find out this week about the insurance coverage.
So happy you made it!
Title: Re: Fibroscan?
Post by: KimInTheForest on April 27, 2016, 01:35:16 pm
Thank you Hazel for the info about the fibroscan-I wondered if it was painful or not.
I will find out this week about the insurance coverage.
So happy you made it!

Hi Anne. Fibroscan is painless and non-invasive. A special metal rod outside of your body will lightly 'thump' you between the ribs somewhere where your liver is. with a nurse/technician holding the rod & steering it. The sound waves that are reflected back by your liver will be a gauge to liver stiffness. And that value is used to estimate how much fibrosis/cirrhosis you have. The nurse needs to get 10 thumps in the same ballpark before she can stop, to ensure that the values are valid and that the rod isn't hitting a rib. So you will be thumped more than once. But it doesn't hurt. It's a light thump. My ribs turned out to be very close together, so they had to use a small-diameter rod on me - a child's rod.

Most people don't have a problem with Harvoni in terms of side effects.

Good luck! :)
kim
Title: Re: Fibroscan?
Post by: Anne A on April 27, 2016, 09:13:33 pm
Thank you, it's good to know what to expect if and when I do get to have one! This Forum has been most helpful in "uncharted waters" as too this medical world we've been drawn into. I'm a 100% for taking the new treatments for the ones in strong enough physical, mental,and spirit to withstand the effects. I would like to ask if they have been helped by a Holistic approach-along with their doctors advice. Your opinion would be interesting .
Title: Re: Fibroscan?
Post by: KimInTheForest on April 27, 2016, 10:22:26 pm
Thank you, it's good to know what to expect if and when I do get to have one! This Forum has been most helpful in "uncharted waters" as too this medical world we've been drawn into. I'm a 100% for taking the new treatments for the ones in strong enough physical, mental,and spirit to withstand the effects. I would like to ask if they have been helped by a Holistic approach-along with their doctors advice. Your opinion would be interesting .

Hi Anne. Are you asking about people taking a holistic approach to their healing while on Harvoni? Or using holistic approach instead of taking Harvoni or one of the other new direct-acting antivirals (DAAs)? And by holistic, I assume you mean anything from vitamins and supplements, to tai chi, to acupuncture, right?

My understanding and personal opinion is that:

a) No approach other than pharmaceuticals will eliminate the virus from the body. But various vitamins, supplements, dietary changes and other holistic/alternative medicine tools may be able to help keep liver enzymes in check and slow the development of liver scarring and fibrosis.

b) It is best to temporarily discontinue supplements while on treatment with the new DAAs, just to ensure that the drugs are able to work the way they were intended to.

Others here may have a different view.

kim
Title: Re: Fibroscan?
Post by: Anne A on April 28, 2016, 04:39:49 pm
I meant instead of taking Harvoni or some other treatment. Wondered if others have had good results and what exactly they took. My liver is pretty beat up from what the doctors have said- now I'm going to a Holistic doctor who says she can get the virus down. It may take a few months taking various liquid drops and pills from Standard
Process(well known and trusted company). Your thoughts on this seem spot on, just wanted to hear from people that take something other than Milk Thistle.
Title: Re: Fibroscan?
Post by: dragonslayer on April 29, 2016, 10:39:55 am
Not to imply that supplements have any impact on the virus itself, serious studies have shown that coffee drinking produces a significant reduction  in liver fibrosis.   Im not aware of any studies that show results this dispositive for any other 'supplement'. 


http://www.mdalert.com/article/new-data-show-coffee-reduces-hepatic-fibrosis-in-patients-with-liver-disease
Title: Re: Fibroscan?
Post by: Luna7 on April 29, 2016, 12:15:34 pm
Hi Anne,

I tried a lot of natural treatments, and I do think some of them helped to a point. But still, my liver deteriorated.
What helped the most was eating better, as I was under the impression that juicing and eating an abundance of fruits and vegetables was best, but actually for me it's better to limit the carbs in juices and eat more protein and fat.

You are playing with fire here, with advancing age, a liver not in good shape as you described, and an Ast that is higher than your Alt. I'm not convinced many holistic practitioners understand some complexities about the liver. For example, I went to one practitioner that did Vitamin C IV's, and Vitamin C increases iron, and that can be disastrous for your liver if you have certain conditions my traditional doctor checked for. Not sure if that condition was called an auto-immune one, but there are plenty of those too that cause more liver damage.

I do believe in holistic medicine for many conditions, and I do see that traditional medicine too often doesn't know what to do with chronic conditions. I'm very sensitive too, and elected to wait until they had something besides that nasty Ribavirin with all its side effects, but there's a chance I waited too long and my liver will have a difficult time recovering, and perhaps those side effects would have been manageable.

One thing to consider, is that the forums present a kind of biased sample. Most of the people here are the ones with side effects and seeking support or a way to cope, and the ones who were cured and had no problems often go off to live their lives and post less on forums.
It would be good if we could see some statistics demonstrating how many have few side effects with Harvoni.
Title: Re: Fibroscan?
Post by: Gaj on April 30, 2016, 04:54:00 am
Thankyou Luna7, a clear and precise summary of the situation as I also see it. :)

Title: Re: Fibroscan?
Post by: Luna7 on May 02, 2016, 10:16:52 am
Thanks Gaj...I hope I didn't come on too strong though.
I'm just concerned, both about what I did because of my fears of traditional medicine, and about Anne not getting treatment in time.

I'm angry at some holistic health care providers who don't seem to recognize the seriousness of HCV.

Anyway, Anne, feel free to come back here and discuss any natural treatments you are doing or have done that you feel helps. I did not mean to scare you off if I did.
You might try this website where lots of natural treatments have been discussed, but even most of these people went to the new treatments in traditional medicine we have now with less side effects:
  http://www.dailystrength.org/groups/alternative-treatments-for-hep-c


Title: Re: Fibroscan?
Post by: Anne A on May 02, 2016, 12:14:36 pm
Luna 7,you did not scare me off and I Thank You for your input on this subject(which I think I should start a new tread for others to comment being as this started about the Fibroscan). ALL of you posted very important thoughts-Gaj, Dragon slayer-your replies
were seriously taken into consideration. Actually I feel exactly the same way about
the Holistic doctors. They claim to know about the liver and virus but maybe not the
HCV. Not sure I will continue with her for that reason. She has me taking 21 pills and two liquids a day spread out thru the day.Although I've had no bad reaction to any of it , makes me wonder how good that is on the liver. Fortunately, I have be extremely
healthy all these years ,eating good, no alcohol. Now things are different.
Title: Re: Fibroscan?
Post by: FutureThinker on May 02, 2016, 01:29:06 pm
Luna, I agree with your post from 8/29 re: forum bias. It really is nice when someone has had a great post-treatment experience and comes back to let us know! But I completely get that they are likely getting on with their lives, which is what we all are looking forward to. We also need to remember this is a community forum, and we need to look at what facts are now known about this disease to guide us. FT
Title: Re: Fibroscan?
Post by: Lynn K on May 02, 2016, 04:20:54 pm
Personally I have zero believe in any approach to treat hep c for cure other than medicine currently available and may become available in the future.

Viral load varies over time and so do liver enzyme levels none of these tests will show the extent of liver damage. Only a liver biopsy, fibrosure blood test, or fibroscan can prove cirrhosis and can indicate extent of lessor liver damage.

Hep c is a slowly progressing illness and not all will progress to cirrhosis. The best we can do is be kind to our livers by not drinking or smoking and avoiding taking more Tylenol than is recommended (less than 2000mg/day) and eating a healthy diet. My feeling on supplement is as there is little evidence for anything except coffe possibly being helpful why add anything to your liver to process. Basically, if you don't have to take something, don't.

If you are experiencing liver damage it is very important you treat soon to avoid progressing to cirrhosis and increasing risk of liver cancer.

Personally I had maybe a couple of mild headaches on treatment but if the were side effects or just a mild headache for no particular reason who can say. I did experience additional energy on treatment at least until we added ribavirin at week 9 of my 24 weeks of harvoni.

Most people have few side effects of course people who do tend to be vocal about it. I think that is human nature we complained when we have something to Champlain about and when things are fine you don't hear from us at all.


I see you have a low platelet count that is often the first indication of cirrhosis. I hope you can find the strength to treat now to avoid any further consequences of hep c. Surely treatment only gets worse if you do develop cirrhosis with symptoms.

Just to add I have had cirrhosis for 8.5 years and I am still here

Good luck
Lynn
Title: Re: Fibroscan?
Post by: Lynn K on May 02, 2016, 04:45:13 pm
As to side effects this comes from the clinical trials and can be found on the prescribing information sheet for harvoni


Table 2
Adverse Reactions (All Grades) Reported in ≥5% of Subjects Receiving 8, 12, or 24 Weeks of Treatment with HARVONI

                           8 weeks. 12 weeks 24 weeks 
                              N=215    N=539.   N=326
 Fatigue.                   16%.        13%.      18%
 Headache.                11%.       14%.      17%
 Nausea.                     6%.         7%.        9%
 Diarrhea.                   4%.         3%.        7%
 Insomnia.                  3%.         5%.        6%


Here is the link to the prescribing information sheet

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

There were additional side effects in table 3 for those who had compensated cirrhosis who participated in the clinical trials
 
Title: Re: Fibroscan?
Post by: Luna7 on May 03, 2016, 12:31:43 pm
Great Anne, glad you weren't scared off. :)