Hep C Discussion Forum

newlondon · Member

RE: ALT has soared

Tig · Admin

That's an improvement! Any word from the doctors or additional tests? Keep us informed...

newlondon · Member

My ALT has dropped from 1400 to 1036. heading in the right direction.

thanks

newlondon · Member

Here are my comments and answers.

Tig no idea why the 3 VL tests. The nurse practitioner thought it odd but my regular HIV doc ordered the 3^rd test.

Cheddy I dont know if anyone is taking treatment on the old meds but it was presented as an option. I think the clinic I go to can advise on buying on-line or point me in the right direction. The last time I saw my doc she asked what I thought about generics. I get the feeling that, whilst theyre not pushing it, they are presenting it for serious consideration.

Tig my genotype is 1A. Had to ask for it as everyone was focused on the ALT elevation. It was provided but was told it took longer to get the result back.

Jimmy K thanks for your wise words. Its true I dont know enough about my current condition to make such a statement but I get the feeling this is the opinion of the clinical staff. Ill ask about a fibroscan.

Jimmy K and Pablito I have a feeling the seroconversion was recent. Here is some history;

Had my last Hep c test around 12 months ago. Had a liver function test that came back normal in December 2015 ( i know it's not the same as a hep c test but there was no reason for concern). Between December and March I was going through a break-up with my, now, ex-partner. I wasnt having sex with anyone. From the end of March until my test in late June there was a marked change in my behaviour. Especially from May onwards. Again it is just a feeling and trying to read into the replies of the casual partners Ive disclosed to but my gut feeling it happened after May. I know I could be wrong though. Again thank you to both and Jimmy K youve raised an important issue.

Tig as far as I know they have done lots of tests. Both doctors I saw said that my liver was otherwise ok apart from the ALT. As I mentioned before I wont see the Hep c doctor until the end of August.

WLMJ1960 my medication was changed as my doctor thought the rise in ALT was due to interaction of HCV, the antibiotics and my medication. One part of the combination was rilpivirine and Ive been taken off that.

Good question re another HIV doctor. I should have written I saw another doctor at the clinic where Im treated for HIV as my doctor was not in that day. I assumed that she was an HIV doctor given her location within in the clinic. Ill find out.

Loopy Lisa thanks for your comments. Im fairly sure that I was newly infected in the last 3 months. Despite the high ALT I feel fine. As to treatment the nurse practitioner suggested that I wouldnt qualify for the new treatment. But a fibroscan and other tests would need to reviewed before such a judgment could be made. Considering all of this I feel fine and no problem switching my HIV medication. I dont have any aches, gastro problems, eating normally etc.

Next bloods on Tuesday so will have details on Wednesday morning. And just to say Im amazed at the support Im getting from this forum. Lots of information. All comments are constructive. Im truly grateful.

Loopy Lisa · Guru

I thought I might add something here. If you are in acute stages, it is protocol to wait post 6 months to see if your body resolves the infection. Statistics state its 15% upwards for spontaneous clearance. Alts are very high when newly infected as the body adjusts to the new infection. Have you recently become resistant to one of your H.I.V medications? I am wondering if you are either responding less, or there is a better less toxic medication available that would ease the strain on your system, especially as you are now co-infected.

As you are considered (If I assume correctly) newly infected, it is not considered a need to take a scan if they intend to treat you. I assume you are newly infected, or at least for not more than a few years?

I read only yesterday, there are only 10,000 a year being treated in the UK on DDA's. It is based on highest need, verses able to wait - money issues. The article was written due to the fact the NHS may be taken to court for not supplying every person as per the world-wide liver conference suggestion. Getting rid of the virus as early as possible gives patient outcome survival a huge boost as they will have minimal damage in the liver, and less chances of cancer and other issues related to HCV infection. As a co-infected you will come be on the top of the list of need in this case. Co-infections are more urgent to treat than mono as the immune system is already under strain.

Level of virus is indication of nothing. I had on my last test over 15,000,000 million and no liver damage. However, it did affect my digestive system and caused a lot of discomfort. I would also not feel too comfortable having too many doctors and not enough answers. I hope you keep us updated, as we are all hoping you get the answers you need, and this problem is dealt with ASAP.

PS: I hope you are coping ok, it is a lot going on and you must be very concerned. You must also be feeling quiet poorly with those high ALTS.

newlondon · Member

You've all made valid points and ask questions that I'll answer later today. thanks again everyone.

wmlj1960 · Moderator

newlondon wrote:
This is based on the last 2 tests that I had done. In between these 2 tests i have changed my HIV medication.

newlondon wrote:
i did see another (HIV) doc and she said that all the tests indicated that my liver was ok and also that i wasn't ill, or jaundiced etc.

Hi James and welcome to the group.

Can you give more detail about why your HIV medication was changed. Also, what was the reason for you seeing "another HIV doctor".

My HIV medications were changed before I started treatment with Sovaldi / Ribavirin in 2014 due to drug interaction concerns. Changing HIV medications is not something that needs to be done unless there is good reason. So I am curious to know for what reason yours were changed.

As already discussed, HIV presents additional issues to be considered when being treated for HCV and both your HIV doctor and your liver specialist will need to know what the other is doing.

Be sure to post your test results next week so we can get a better picture of what needs to be done to get you on the road to recovery.

Again, welcome! smile

Tig · Admin

My position is that something isn't adding up. We don't have enough information outside of the multiple viral load tests, an adverse reaction to a contraindicated antibiotic, multiple elevated ALT's and a diagnosis of HIV coinfection. All this at the very least is deeply concerning for me.

A Hepatologist or qualified Gastro doctor must be consulted and a full battery of proper testing must be done before any decisions or conclusions can be made. Even then, we can relate, but not recommend a course of action. That is up to James and his healthcare team to make. This is a serious matter and should be discussed with the appropriate specialists first. There are simply too many variables and questions that have yet to be answered. We have to be cautious regarding our opinions, albeit knowledgable , especially before a comprehensive diagnosis has been made.

Lets wait for more information from the appropriate medical professionals before coming to any conclusions. Thanks everyone for your thoughts on this important situation.

JimmyK · Guru

Pablito wrote:
Hi again
Given that you only sero-converted a few months ago they may not need a fibroscan. It's safe to say you'll have no fibrosis. Pablo

Pablito my brother, he did not say he recently sero-converted. He said;

"Pablito, not sure when I sero-converted but think it was end of Mayor into June 2016."

What is not said here is what leads him to believe that. He would have had to have tested negative up to mid May for even the anti body and then for some reason be retested sometime in June. He was diagnosed early July which only means first time a HCV RNA determined the chronic condition.

It is not safe to say he has no fibrosis until such time as he is tested for the same.

HepCfriends.activeboard The Forum does not hold to the statement that it is safe to say this man has no fibrosis.

We do hold to the statement that it is our hope that he does not.

This is serious IMHO.

JimmyK

-- Edited by JimmyK on Saturday 30th of July 2016 07:37:23 AM

JimmyK · Guru

newlondon wrote:
NHS England is restricting access to new treatment to severe or long-term cases. I'm a long way off getting that.

Respectfully. With multiple ALT readings >1000 and lacking a Fibrosis Score subsequent to testing for that, I don't believe you can make the case that you are a long way from being classed as severe. You simply do not have the evidence to back that statement.

I am not saying that to be a jerk but for your sake as well as that of other readers here.

MINIMUM REQUIREMENTS to determine where you are at with Hep C.

HCV RNA VL Reading Including Geno-type

Complete Blood Count

Full Liver Panel

Fibrosis Score.

It is a combination of those factors that determines severity and course of treatment. Each of those require properly licensed Medical practitioners intervention and expertise.

I am saying this because it is true and I care.

JimmyK

Pablito · Senior Member

Hi again

Given that you only sero-converted a few months ago they may not need a fibroscan. It's safe to say you'll have no fibrosis. But clearly you have a lot of inflammation given your LFTs are high. My hunch is that you are in the acute/post-acute stage and that's why your LFTs are so high. Either that or the antibiotics/HIV meds. Either way they should come down.

Genotyping is needed though.

The NHS is providing the new DAAs. I know this as I was offered them and my friend is starting treatment this month. What NHS England has done is place a cap on how many patients per month each hospital can treat. As you've mentioned previously, people with more advanced disease are being treated first. Sofosbuvir is being used as the backbone drug but where money can be saved with people with G2, for example, ribavirin is being used as the co-drug rather than using the more expensive NS5A inhibitors like ledipasvir. Still valid regimes but slightly less effective and more unpleasant to go through. But interferon is certainly not being used as a mainstay treatment.

Generics via India is legitimate option (without travelling to India, i.e. via post), but as mentioned previously you need to go through good channels. If you research the links in the forum's friends/associated sites you should be able to work out where to go.

Pablo

Tig · Admin

This is getting stranger all the time, James. I know the NHS is cash strapped, but I haven't heard of current protocols being limited to the old standards of care. They use Sovaldi with Peg/Riba as a rule now. 12 weeks of treatment. But you don't even know your genotype, you may not need Interferon.

Before any decisions like that are made, they have to know two things, three actually and you already have several viral load results, so quantification has been determined. It's odd that you weren't provided a genotype when the VL was performed, it's routine. Second thing, you should have been scheduled for a fibrosis staging, either a Fibroscan, Fibrosure, MRI or biopsy. Treatment drugs and duration can't even be considered before all of the preliminary testing is completed. Lastly, as a coinfected patient, guidelines state you should be considered for treatment as soon as possible. You can experience a unique set of differences and complications if treatment is unnecessarily delayed. Finally, who made this decision? You haven't seen a Hepatologist yet. You need to get in and see a liver specialist before anything is decided. Somebody is putting the cart before the horse in my opinion. Something isn't adding up.

We are an international forum. It was started in the UK and now administrated from the US. We have members everywhere.

2016 EASL HCV Guidelines

Cheddy · Moderator

I haven't looked too far into this, but I can't believe anybody is still going with interferon since the new DAAs (likely Harvoni) are so much easier to tolerate. As far as buying in India, you will need a lot more information to be sure you are getting the real deal. When I traveled to India last year, my clinic sent antibiotics and other treatments with me, warning that the medical markets in India are under different scrutiny. I expect there is someone here who knows more about going through the right channels. These are pretty major meds, so I would make sure you are getting just what you need.

newlondon · Member

NHS England is restricting access to new treatment to severe or long-term cases. I'm a long way off getting that. Options are the old treatment, interferon etc, or buying generic drugs from India. The clinic would monitor this. Not sure if this is a UK or international forum.

Tig · Admin

The number of tests is a bit confusing. We have people that can't even get a viral load test because doctors don't believe they're necessary other than one before treatment and one at 12 weeks after the end of treatment. They prohibitively expensive and serve no purpose if you're not on treatment. Very odd indeed. We'll be watching for more news, keep us informed.

newlondon · Member

Thanks again for the comments and advice and will check about the INR test. No idea why I've had 3 VL results and I realise that they can fluctuate. Due to give bloods early next week so should have results by the middle of next week.

Re having a pharmacist, there is a small pharmacy at the clinic so I've never had an individual meeting with one regular pharmacist.

Shadowfax · Guru

Hey James,

Hang in there and keep us posted. Trust me, these fine people here know so much about medicines and conditions that they could give a lecture to all the doctors who work too fast and without all proper information.

This is really when a pharmacist comes in really handy. Have a good one and ensure they know what is going on with you medically since they are the experts and can easily catch a doctors error in judgment and interactions with drugs. I see now Linux said this as well. They are very important in the grande scheme of things.

SF

Tig · Admin

James,

The INR is used to evaluate clottng factors, but a high elevation can indicate liver disease and injury. The liver produces proteins that affect clotting times. The INR can be very helpful when diagnosing liver problems.

INR Test

JimmyK · Guru

Greetings,

You mentioned; "...my viral load is as follows over the last 4 weeks, 10Million, 13M and now 8M..."

Did anyone explain to you why they were doing three HCV RNA blood draws in the course of four weeks? I don't believe I have ever heard of such nor can I see the point. VL fluctuates daily due to the replication process and how that works.

JimmyK

newlondon · Member

ALT results

dates are approximate.

End of June - 153

4/7/16 ALT 90

19/7/16 ALT 1110

21/7/16 ALT 1306

then in the last week 1474 and 1413

thanks

Cheddy · Moderator

Welcome James,

You've found a great place. Can you believe how knowledgable these people are? You'll find lots of support and all kinds of experience here as well as empathy and emotional support, and humor too.

Just wanted to add my welcome. It's good you're here.

newlondon · Member

Re INR test. I googled it and saw it was something to do with blood clotting? I will ask but think I've had it done at least once as the doc mentioned that my blood-clotting was fine/nothing to note. The time before last they took 5 tubes of blood so I guess they are testing for a lot of things. i did see another (HIV) doc and she said that all the tests indicated that my liver was ok and also that i wasn't ill, or jaundiced etc.

I'll provide details of the date of tests with ALT readings later today. I should also mention that I see my HIV doc and a practitioner nurse more frequently than the Hep doc and do not have my fist appt until the end of August.

Thanks

JimmyK · Guru

Greetings,

Ask your Doctor to perform a Prothrombin time. (INR) as a suggested single most important test for such a high ALT.

Also what is the timing of the readings you mention in your first post? Dates for the 1st through 4th tests would be helpful.

The Augmentin is the likely cause due to the relation between test 2 at 93 and then starting the Antibiotic prior to test 3 at which time the number had soared.

If you are still dealing with the Doctor that prescribed the Antibiotic is it possible to consult with a different Doctor?

I can see Tig just responded so I want to also read his post.

JimmyK

Tig · Admin

Hi James,

Thanks for the update. I'm glad to hear things are leveling off, the viral load will fluctuate, sometimes wildly until you get started on HCV treatment, as will the ALT. I think a lot of that ALT spike was Augmentin related and hope that continues to drop as things return to a pre Augmentin state.

Keep us informed of your next results. We'll be hoping for continued improvement. Good luck!

newlondon · Member

Thanks again for all the welcomes and advice. The update is that my ALT is levelling off at 1400 , results were 1474 and then 1413 or something close to that. This is based on the last 2 tests that I had done. In between these 2 tests i have changed my HIV medication. The ALT is expected to fall but I get the feeling that it is taking longer than what was expected. My genotype is 1A. back to give more bloods next Tuesday.

my viral load is as follows over the last 4 weeks, 10Million, 13M and now 8M.

Pablito, not sure when I sero-converted but think it was end of Mayor into June 2016.

Thanks

Linuxter · Guru

Hi J,

Just wanted to welcome you to the forum, this is a great place to settle in to get the information and support that you'll need throughout your treatment ... So Welcome, we're glad you're here!

It sounds like you're working closely with your doctors to stay on top of the high LFT's, it's important to keep them all in the loop and you yourself informed to be in control of your treatment as a whole ... no small task but it sounds like you are already doing well in that regard, good job.

As you know more from testing, keep us informed and we will do our best to help you interpret any test results.

Please do make yourself at home here, in case you need it here's a list of abbreviations used on this site. Forum abbreviations

You've received some very sound advice here,

- "Seek the advice of a Hepatologist for all things liver related"

- "A Doctor who knows you, mixed with a Pharmacist that knows you, helps to avoid a less than fully informed decision where Medications are concerned." (an important key to avoiding drug interactions etc. - know your Pharmacist)

- "Become a polite pest and make sure you are someone they have in mind rather than just another outpatient seen every 6 months. Get your HIV doc to put a bit of pressure on the hepatologist."

- And as Lisa suggests, keep an eye on the" complete digestive system, gallbladder, stomach and liver" to have a good broad view of how your system is doing.

Keep us posted, we'll be here to see you through "To SVR and Beyond"!!

Linux

Loopy Lisa · Guru

Hi J,

Welcome to the forum. Before I was diagnosed with Hep, I had a yellow fever injection, which warns not to be taken if you have hepatitis. It crossed my mind straight away once diagnosed. I spoke with my specialist about it. She stated it was only harmful if you have severe liver damage. Relating to the bile obstruction, I recently passed some stones from my gallbladder that sent my ALTS etc through the sky. We didn't know what was causing it at the time and I went through a barrage of tests within a week. Has anyone arranged a echo for you to take a look at your digestive system, gallbladder, stomach and liver? That will reveal a lot more about what is going in, and whether something is untoward. Mine revealed I had passed all my stones, and for a small time it had caused an obstruction, my body resolved it. If you have a slight blockage they will have to remove it either via diet, smashing the stones with ultra sound technology, or an operation. They consider that a non Hep related problem, but can cause all sorts of high stats.

My niece who doesn't have hep, became hepatic recently on antibiotics, her ALTS also went sky high. Sometimes they cause reactions in people regardless of health status, but you should question everything and if need be get a second opinion.

Sorry to hear about your co-infection, it is essential to get the hep cured as it progresses faster in co-infected people. I do believe that soon they will be able to cure H.I.V as well. It is a great time for science research and treatment.

Hang in there and let us know how your doing.

L

Pablito · Senior Member

Hi mate

I'm also in London. And welcome to the forum.

The guys are probably right in that if your LFTs shoot up to such a high level from a relatively low state then something acute has happened and given that Augmentin has this warning it's the most likely cause. Any of your HIV meds playing a role? I assume an HIV doc would have this covered.

You probably don't know this info yet but do you happen to know how recently you sero-converted (HCV, I'm talking about)? The reason I ask is the only time my LFTs were in the 1000s was just after I sero-converted...and they settled down quickly.

Anyway, they'll return down to an acceptable level soon and hopefully you'll get treatment for HCV too and be cured! A word on that: he who shouts the loudest gets what he wants from the cash-strapped NHS. Become a polite pest and make sure you are someone they have in mind rather than just another outpatient seen every 6 months. Get your HIV doc to put a bit of pressure on the hepatologist.

Pablo

-- Edited by Pablito on Sunday 24th of July 2016 04:02:53 PM

JimmyK · Guru

Now it is me agreeing with Tig 100%.

We appreciate the clarification. The first post mentioned drug induced Hep C. To that we would say no. As far as drug induced inflammation, that is an absolute yes.

We have other Family members here that are co infected with HIV/HCV. You have found a good home here and a great place to talk, and be heard.

A good practice is to also have a Pharmacist that knows all of the Medications and contradictions that may apply to you in particular. This is a case when multiple Doctors are writing scripts it is good to if possible have a single Pharmacist. You want one that knows you and will see the red flags when thy are raised. As an example my Pharmacist has contacted one of my Doctors to question a Script and the fact is it led to a change in the prescription. A Doctor who knows you, mixed with a Pharmacist that knows you, helps to avoid a less than fully informed decision where Medications are concerned.

Again, welcome!

JimmyK

Tig · Admin

Hello again,

The hepatitis referred to in that article is related to drug induced inflammation. It also mentions drug induced cholestasis, which essentially relates to a potential bile flow problem. I think your spike in ALT is related to it, but that's an opinion only. It should settle back down but you certainly need to bring it to your doctors attention. Clearly your hepatic function was affected adversely by the administration of the drug. While it cured your UTI, your liver protested loudly.

Let us know what your next test results are and good luck with your doctors appointment!

newlondon · Member

Thanks to everyone for replying. I'm co-infected with HIV and now HCV. At the clinic I attend I saw my HIV doc for my diagnosis but don't see the HCV doc till late in August. I told my doc that I had trouble/discomfort with my bladder etc so she asked for a test and it came back with a UTI. I went back to the clinic to get the script and saw another doctor. As he had all my details I assumed it was ok to take the augmentin. I had taken one dose and read the guidance notes and emailed my doctor asking if it was ok to take as there was some stuff about it affecting the liver but didn't mention HCV. My HIV doctor is fine and sees a lot of new HCV patients initially as a result of liver function tests and annual HCV test. She said it was ok to take the Augmentin.
I stopped the Augmentin course but had nearly completed it and no need for any more now. When i got the latest result via email my doctor did tell me that my ALT had 'settled' and I had to ask for the figure. This is when it had increased from 1000 to 1300. Seemed way to early to me to conclude that it has settled when it had increased by 30%. I'll get my next set of results on Tuesday and I'll update you all.

In terms of being worried I mean is it likely to drop back down again to what it was, with such a high figure has much damage been done? I'm not expecting answers to these more raising my concerns. I'm seeing a different doc on Monday and will raise these with them.

Re drug induced Hepatitis this is what I found on the web;

www.medicinenet.com/drug_induced_liver_disease/article.htm

Thanks again for all your replies and will update you on Tuesday. May even know my genotype by then.

J

Tig · Admin

Hi James,

I agree with Jimmy completely. Augmentin is a tough one on the liver. It's a two component drug, Amoxicillin and Clavulanate. It's the latter that causes the hepatotoxicity, they believe. Amoxicillin is an acceptable medication but not the combination. Seek the advice of a Hepatologist for all things liver related, especially while you're on treatment and adding any medication to your routine.

Augmentin is well known to cause enzyme elevations. Yours are off the chart.

Augmentin

robertsamx · Guru

Welcome James. Those first two alt results seem fairly normal for someone with hep C , however the last two numbers are very high, and are most likely a result of the antibiotic . Not to worry too much, you just found out, your Dr's will get you on the proper treatment drugs, and in 12 weeks it could all be behind you. Let us know what geno type you are and request a fibroscan. Both these test will help your Dr prescribe the proper treatment drugs and the length of time on the treatment drugs.Keep checking in with us , we're not Doctors but we are very knowledgeable and can arm you with the right questions to ask your doctor.Stopping the alc and drugs is a good first step. RC

JimmyK · Guru

Greetings and welcome.

I don't do this often, but if your Doctor said it was ok to take Augmentin for a UTI while infected with Hep C, then I would submit your Doctor does not know enough about Hep C to be dealing with you at this time.

There are clear warnings with this medication if you have, liver disease (or a history of hepatitis or jaundice), and you do. There are other options to treat a UTI that do not come with such warnings.

I am not sure what you mean by drug induced Hep C. It is a virus and is contacted through direct blood to blood contact with an infected person.

Do you have a Hep Doctor?

As to advice on being worried, I don't do that. I do advise forks to get knowledgeable and not to use knowledge for the sake of worry, but battle.

You need to know Geno type, Fibrosis scores and the values of a complete liver panel and CBC's. That is your starting point and should be ordered by a competent Liver specialist.

Again welcome.

JimmyK

-- Edited by JimmyK on Sunday 24th of July 2016 12:11:06 PM

newlondon · Member

hello

newly diagnosed at the beginning of July and still don't know my genotype yet. Initial viral load was 10 million going up to 12m on the 2nd test.

The problem is the ALT reading. results of 4 tests to date are;

1st test - 153

2nd test - 93

3rd test - 1000+

4th test - 1300+

Since diagnosis i haven't been drinking, taking drugs etc but after the 2nd test I was given Augmentin antibiotics for a UTI. i read the guidance notes and it said it can bring on drug-induced hep c (or something) so i checked with my doc if it was ok to take it and the said yes. The last test was done last Thursday and I'm due to go back on Monday for another test. I stopped with the Augmentin but had nearly completed the course. my doctor said if i was sick or throwing up i should call the emergency number. Thing is i feel fine, no sickness or pain.

I guess I'm asking how worried should i be?

thanks J

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