Hep C Discussion Forum

Karen · Senior Member

Last visit with my Hepatologist!

hrsetrdr · Guru

JoAnneh wrote:
Oops Tim I accidentally
Posted your message in wrong place.
Hope u find it....
I was struggling too many things at once

JoAnne,

It's always good to see you post, so there's never a 'wrong' place(I do know what you mean), but I found it. There's a group of us here that are kind of the "class of 2012", which has a special shared bond. We will always be concerned about our fellow treatment classmates. For example, Judy S has not been around the forums lately, hopefully that is a positive sign,

JoAnneh · Guru

Oops Tim I accidentally
Posted your message in wrong place.
Hope u find it....
I was struggling too many things at once

JoAnneh · Guru

Tim,
Congratulations what a huge relief
Making SVR. I remember when you had to
Stop tx.
Great news!!!

JoAnneh · Guru

I agree with Matt Chris, Malcolm ROCKS!
He watches over us sharing his knowledge
And gives of his time generously to others.
It's a true calling and he is counted as a blessing
in my life.
I think if he lived in the USA my husband
Would be jealous:) as I mention forum
friends but Dr M gets the most talk!
He gives me a good sense of ease and security
As I know I have one smart knowledgeable
Friend concerning the liver.
Thank you Dr. M for giving so freely of your time.
We really need and appreciate you very much.
I know God is pleased with you for your efforts
To help others.
Xxoo

mallani · Guru

Thanks for all the support. Don't worry, Matt, I'll still be around to harrass and question.

Re lambda interferon- the Trials are continuing, results due 2014. I haven't heard of anyone using it. It supposedly is just as efficient as the interferon alphas, with fewer Sx. I'd wait and see.

Zlikster; Mate, you don't need an MRI at your age and with F0-1! As my doc said, only get a follow-up Fibroscan if you can afford it. My bet is there will be no change after your SVR.

Fibroscan probes are the subject of many articles. Google them. My doc uses the standard M probe with a frequency of 3.5 MHz. His values may differ from others, as it depends on calibration and personal experience. The XL probe uses a lower frequency (2.5 MHz) so has better penetration for the 'fatties'. So far, there is debate about whether the 2 probes can produce comparable results. The CAP reading supposedly measures fatty infiltration. You're pretty skinny, so I'd stick with the M probe. My doc thinks my 30 kPa reading may be falsely high for 2 reasons- my ALT was 186 at the time of Fibroscan, and was down to 88 3 months later, so I may have had a hepatitis 'flare'. I was also 8 kgms heavier then. Even so, my reading would only have dropped ~5 kPa, so it wouldn't affect my cirrhosis diagnosis.

I didn't mention his response to my question about diet. He suggested I eat what I like, but try to keep my present weight and keep the random blood glucose under 10! He also said to avoid vitamins and supplements, but he may be totally wrong!! Cheers.

hrsetrdr · Guru

Malcolm,
The closing of this chapter in your life has been such a long time coming, congratulations and best wishes for your HepC free future!

I was concerned about you there for a while, so glad that you made it across the Finish Line.

Matt Chris · Guru

Hey Malcoln

Now that's a good problem to have, not having a monthly appointment with your Hepatologist. Actually from what you have related you have a very well informed and up to date Doctor that is well connected to the cutting edge HCV research. Why am I not suprized. We all should find one like yours.

I think his/ your viewpoint on Ribavirin is correct. It really backs up the findings about the connection between SVR and proper blood plasma saturation of Ribavirin during treatment .

The other item of interest for me was the Sofosbuvir information , it's becoming very apparent that Sofosbuvir needs to be combined with other DAA's to be most effective and possibly with Ribavirin to be more effective with certain Geno types .

We my find that Interferon also may have a important role as well.

BTY whatever happen to Lambda Pegylated-Interferon Is it still in Trials?

From the forums standpoint we hope Malcolm's interest in HCV does not follow his doctors in him. Really when you consider all things that Malcolm contributes on the forum it's like having a HCV specialist consulting pro bono, truly a blessing to all members.

Matt

-- Edited by Matt Chris on Friday 13th of September 2013 05:56:13 AM

Cinnamon Girl · Guru

This is such an important milestone in your journey, Malcolm, as one era ends, so another one begins. "He's happy, I'm happy"...sounds good to me!!

Onwards and upwards with your new virus-free life, you have good reason to celebrate, even though I`m sure you`ll miss your regular updates with your doc!

Thanks for sharing all this information with us, very interesting.

Cheers, Jill

Tig · Admin

Congratulations Malcolm! That sounds like a reason to gather your family together and have a big celebration of your health and everyone's happiness!

Zlikster · Guru

Malcolm, you have any other intel on "new probes that claim to measure fatty infiltration"? sounds interesting (for my case)...is there a need for MRI of liver with light fibrosis?

good you are both happy with your SVR post rx development ;)

cheers for details!

mallani · Guru

Hi all,

My doc has lost interest in me now, so I had my last visit today. I'll miss my up-to-dates. He's given me my follow-up regime, and I'll call him if I've got any worries. I got the latest info out of him so here goes. Remember it's only his opinion, and that of his group of Hepatologists.

Ankle oedema: I told him about my ankle and calf swelling in China. He said that's very common, and is due to direct capillary damage, from both Peg and Riba. It eases in time.

Ribavirin: Although the correct dose will probably never be known, he pointed out that a recent study by Gilead showed a marked difference between patients who took Sofosbuvir + weight-based Riba, compared with those that took Sofosbuvir + fixed dose 600 mg/day of Riba. (see reference). He will continue to use weight-based Riba, and the Hb can drop to 8 (80) before intervention in most patients.

http://www.niaid.nih.gov/news/newsreleases/2013/Pages/hepCtrial.aspx

Abbvie: He is Co-ordinator the the Abbvie study here. Results look promising, but only Rx naive patients are in his Trials. All participants are told that if they fail Rx, future Rx options are extremely limited. There has been no response from Gilead as to whether Sofosbuvir can be used after a patient has failed previous Tx with an NS5B inhibitor. He thinks the Trials will show that Riba will be required in the Geno1a's.

Gilead: His Group did a small Trial with Peg/Riba/ Sofosbuvir for 12 weeks,in Rx naive patients. The SVR rate was about 60% which was disappointing.

Fibroscan: He purchased the first Fibroscan in Australia in 2008. He has upgraded, and has considerable expertise. He now believes that Fibroscan is accurate if the reading is below 6 kPa (normal or mild liver scarring) or above 17 (definite cirrhosis). He has seen a patient with a reading of 10 who was shown to have cirrhosis on 2 liver biopsies. For patients between 6 and 17, they are assessed on clinical and lab. grounds, but will need a biopsy if he's uncertain.

He said I could have a follow-up Fibroscan if I didn't mind wasting my money. He said I may have improved my score but it takes 2-3 years to get significant fibrosis resorption. I'll wait. He has no faith in the new probes that claim to measure fatty infiltration, and they are not discussed at Conferences.

Geno 3: There will be limited supplies of Sofosbuvir ( all going well ) available in Australia, in about 18 months. All of his Rx-failure Geno 3's will be offered 24 weeks of Sofosbuvir and Riba., together with a large waiting list (Geno 3 is common here).

Mobic: He thinks Mobic should only be taken for 4 weeks in cirrhotics. Many of his patients had post-interferon aches and pains in muscle and joints. They can take up to 2 years to subside. He has given me a referral to a Rheumatologist, experienced in this, if required.

Follow-up: His advice is 6 monthly CBC/LFT's, AFP, and liver imaging (Ultrasound alternating with MRI). VL check at 12 months post Rx, then forget about it. Gastroscopy only if I want one! In his experience, my LFT's and platelets will take 12 months to normalise, and the platelets may stay a bit low. That is an interferon effect.

He's happy, I'm happy so that's all, folks.

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