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Hepatitis C Main Forums => I Just Tested Positive for Hepatitis C => Topic started by: Lullabie on May 13, 2019, 08:03:02 pm

Title: My First Dr. Appt for Hep C
Post by: Lullabie on May 13, 2019, 08:03:02 pm
I went to my first doctors appt today for my HEP C.  This is the information I received:
Genotype:  1A
Viral Load:  7,120,000
Degree of Liver Damage:  Unknown at this time

I have several appointments for blood and a liver scan before I return to the Doctor on July 31, for evaluation and a treatment plan. 

Can anyone explain to me what the viral load and genotype means? 

Thank you
Title: Re: My First Dr. Appt for Hep C
Post by: Mugwump on May 13, 2019, 09:13:29 pm
Genotype 1a was in the past the most difficult to treat. Today your treatment options are so good that your chances of a cure with just one treatment are well over 95 percent.
The different Genotypes of HCV differ in that they have very slightly different sequences of RNA. HCV is a retro-virus and as such is a very tiny block of RNA that encapsulates itself to become active. The virus is not living in the sense that it does not propagate in the same way that organisms with DNA does. It requires complex proteins and proto- proteins that are only created in liver cells to transcribe the genetic information contained with in the viral code.

HCV has a structure which creates a unique shape that allows it to enter hepatocytes (liver cells). This shape is like a skeleton key that allows the encapsulated virus to inject the RNA particle intact into the liver cell at a specific area in the membrane surrounding the human hepatocyte.

The new treatment take advantage of the same structural shape that HCV uses to inject RNA into cells. The new drugs use the same structural shape to inject antivirals directly into liver cells. A very smart biochemical scientist Dr. Micheal Sofia (https://www.hepmag.com/article/inventor-sofosbuvir-discusses-limited-patient-access-drug) did not listen to the detractors who said it was impossible. So he invented the first drug that used the chemical shape associated with the same key that HCV uses to infect cells called sofosbuvir. Since then many other drugs have become available and are getting better at treating HCV all the time.

The best way forward is to learn as much as you can about the different treatment options open to you and prepare yourself both mentally and physically for being cure quickly. Most importantly keep active and involved with the treatment process and you will do great.

All my best
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on May 13, 2019, 09:24:15 pm
Or another way to think of genotype is like there are many varieties of the flu like bird flu swine flu etc. but they are all the flu. For hep c we have genotypes so just not as fancy names. There are I believe 16 different genotypes with the exciting names of genotypes 1a, 1b, 2a, 2b, etc... the genotype you have will determine which treatment for hep c would be best for you. The other number is your viral load the number of copies of virus circulating in 1 mL of your blood. The viral load doesn’t matter much except they will test you at the end of treatment (EOT) and 12 weeks after treatment has ended to make sure you are Not Detected 12 weeks after finishing treatment to know you are cured. They may test you at 4 weeks into treatment. You should have a huge drop in viral load and will likely be Not Detected at that point but the test that says you are cured is the one at 12 weeks after finishing treatment.

Best of luck
Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on July 27, 2019, 09:44:40 am
My second appointment with the Doctor is Monday July 29, 2019.  Not July 31.  I believe I will start medication at that time.  Lynn, can you advise me of what questions I should ask?  As you might imagine, at this point I'm still having sleepless nights and high  anxiety with my concerns over my situation.
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on July 27, 2019, 09:59:20 am
You may still have to wait to start. Do you have a prescription yet? Has it been approved by your insurance?

As far as your doctor appointment have they evaluated you for liver damage you could ask about that. I doubt you have any as it takes many years of infection for that to happen. How are your lab tests any out of normal? Likely your ALT and AST are slightly elevated due to hep c infection but probably just those.

Also, what time of day should I take these meds should I take with food or does it matter. Any foods to avoid or other medicines to avoid on treatment? What should I do if I miss a dose? If I want to change the time of day I take my meds can I do it all at once or shift the time over several days? What are the most common side effects of this medicine anything I should look out for?

As far as sides most people tolerate treatment very well worrying can actually create its own symptoms so try not to talk yourself into thinking you are having a symptom when it could just be your worry working overtime to make you feel unwell.

Which med will I be taking and for how long? Will I need to come for any testing while treating? When will I be tested for the virus post treatment to know I’m free of hep c?

Best of luck on treatment
Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on July 27, 2019, 06:38:00 pm
Someone called me not too long ago to let me know my medication would be covered.  I was surprised as I had contacted my Medicare Part D and they said not the first $99,000.  Maybe it was not at all.  Thank you for your post.  Thank you for preparing me for possibly not receiving my medication.  So do they give you a prescription that costs that much you just pick it up at the pharmacy?  My entire out of pocket in drugs this year has been $44.00 per my medicare statement received in today's mail.
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on July 27, 2019, 07:47:03 pm
Usually handled through a speciality pharmacy probably will be mailed to you at least that was how mine was with my BCBS and express scripts through my employer. I don’t know anything about Medicare
Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on July 29, 2019, 07:19:04 pm
My appointment today went well.  You were right on all points.  I do not have an unusual electrolytes (sp?).  My Liver scan was good, no sclerosis, little damage, and they will do a liver biopsy before they prescribe meds.  One surprise came up, tests showed I had, at some time, been exposed to Hep B but don't have it.  Also they gave me the first of two Hep A vaccines.

My doctor gave me the name of one med they are likely to prescribe:  Epclusa.  I'm going to find out where I can get the meds at a cost I can afford. 

I feel better and appreciate you listening to me.
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on July 30, 2019, 10:19:28 am
I think you meant liver enzymes not electrolytes. Electrolytes are found in something you drink like Gatorade. The liver enzyme results would be on your liver panel blood tests. The names are ALT and AST. They are very commonly slightly elevated in hep c just slightly above normal. But either way elevated or not just not that important at this point.

Which liver scan was it a Fibroscan machine that kind of makes a thump you feel used to estimate liver stiffness? If you had that you don’t really need a biopsy as the results are comparable to a liver biopsy. Or maybe you had an abdominal ultrasound? That can kind of tell if you have liver damage bit not really used specifically to diagnosis liver cirrhosis.

You wrote “sclerosis” which is usually called multiple sclerosis or MS which is a disease in which the immune system eats away at the protective covering of nerves. But I assume you meant no sign of cirrhosis.

Epclusa is a very effective hep c medicine with about a 98% or better cure rate.

Here is a link to information about Epclusa from the manufacture.


About getting your meds they will have to come from a speciality pharmacy. You likely should contact your pharmacy benefits plan about how to obtain your meds. Your doctor will send in your prescription to your insurance and then you will wait for an approval. I don’t know anything about hep c meds and Medicare but hopefully someone who recently obtained treatment through Medicare will comment.

If you had to purchase Epclusa out of pocket in the US it would cost roughly $74,700 for a 12-week course of treatment which I’m sure isn’t an option wouldn’t be for me that’s for sure. Others here before prescription drug benefits for hep c meds improved went through overseas pharmacies like in India. But I believe Medicare is now approving and covering hep c treatment meds.

Best of luck
Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on July 30, 2019, 01:05:35 pm
As you can see my medical terminology is lacking.  Thanking you for correcting me.  The scan was not a thump and yes they said an abnormality but not Cancer and not cirrhosis.  No inflammation, but they need to know exactly where I am and will require a biopsy for that.  My doctor told me they will give me an IV sedative so I won't be in too much pain.  I thank you for the information on India.  I am shopping for meds now.  Oh a little explanation on Medicare.  Medicare has several parts, I believe you get A free when you turn 65.  I also purchase Part B.  A and B are Hospital and Physician.  I also purchased part D which is pharmacy.  The Pharmacy portion comes in tiers 1 - 5.  This med would be a tier 5 medication and I can't for the life of me figure out what it covers from reading my plan.  I'm going to consult a hospital pharmacist to see if they know of anything.  I have time as my next appointment will likely be in October.  Also, if this runs to next year I should be able to purchase supplemental without restrictions which would be effective in January.  I will post with any news I find on medication availability.

And, Thank you again Lynn, your a wealth of knowledge and comfort to me.
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on July 30, 2019, 02:28:54 pm
Yeah liver biopsy was previously consider to be the “gold standard” for liver disease diagnosis. Newer less invasive testing either the Fibroscan test using a machine similar to an ultrasound or the fibrosure blood test are replacing the liver biopsy for many health care professionals.

I had 4 liver biopsies over the years one every five years after I was diagnosed with hep c. But more recently I have had only the Fibroscan which is not invasive, does not involve sedation and a day away from all activities, requiring a driver to take you to and from the test and hopefully monitor you afterwards. But if that all your doctor has available to him/her I guess it is what it is...

I think the normal process would be to run the prescription to Medicare and see what they say about copay. They either will fill through a speciality pharmacy near you or possibly send by UPS etc..

I got my scripts via FedEx I think. I had them held at a local store location so I didn’t have to worry about porch pirates while I was at work.

I guess if it’s beneficial to wait until next year for improved prescription benefits that might be a good idea. Nothing will really change for you medically by waiting until January to fill your prescription so that’s certainly a great option. 

I’m 61 and have retiree medical from my previous employer until I turn 65. I’m still working though just not for them.

Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on July 30, 2019, 07:11:11 pm
Unfortunately, it could be the biopsy is what the insurance company approved.  I personally would prefer the scan if for no other reason than the discomfort associated with the biopsy.  I am 68 and was very much surprised to get the news about the Hep C,  did I mention in my last post they said I have exposure to Hep B but not active.  My doctor is confident she will be able to cure me. 
Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on August 14, 2019, 04:39:06 pm
I went for the Liver Biopsy yesterday.  I spent six hours at the hospital.   I actually felt better when I left the hospital compared to when I came in.  I had dreaded the procedure however, it turned out to be okay.  I was under before they actually put a needle in me and work up in the recovery area.  I'm a little sore today but I was warned that would be the case.  My doctors team meets on September 20th? and I have my appointment for meds on October 1st. 

Had I not mentioned it before, thanks to Lynn, I did research the availability of drugs in India.  India has strict rules on manufacturing and no laws preventing generics of any kind.  That means the $99,000 prescription reduced to $24,000 here in the US is licensed by the Gilead Science.  The Indian manufacturers sell through distributors who can ship up to a three month supply to the United States for under $1,000 total cost including shipping.  The problem with buying in the US is the situation with the company being traded on the open market.  People that purchase that stock expect a return on their investment.  That in turn pushes the manufacturer to attack large price tags in order to meet investor expectations.  This is not good or bad, just the way it is.
Title: Re: My First Dr. Appt for Hep C - Update
Post by: Lullabie on December 18, 2019, 10:32:48 am
Following my liver biopsy, I had additional blood tests, received a prescription for Epclusa in November receiving the drug shortly thereafter. 

My 2 week blood work showed no trace as did my 4 week.  My doctor mentioned they know some of the virus remains in my liver and stressed the importance of continuing on the drug. 

About obtaining the Epclusa:  The cost was way out of my budget at a list price discounted at $25,000 and, the after Medicare price of $2900./mo.  I found an organization that grants people in my income range money to pay for drugs,  I received a grant of $15,000 with a monthly copay of $10.00. 

The Epclusa did come from a specialty pharmacy, and was sent to me Fedex.  I thank you Lynn for your comments here.
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on December 18, 2019, 12:57:25 pm
Hi sorry I missed your previous posts glad to hear the biopsy went well. Yeah the ones I had where I was completely out were better that the ones I had when I was not sedated. I had I believe 4 biopsies over the years.

Yes absolutely it is very important to continue with your meds. The test result is not detected” not the same as zero virus. I tested not detected at the end of my first treatment with two of the new DAA’s but 12 weeks later was found to have relapsed. Testing not detected at EOT means you are about 95% guaranteed the treatment worked. If your doctor tests you at 4 weeks post treatment and your still not detected you are about 99.8% odds that treatment was effective. The twelve week post treatment test is when you can stop holding your breath most doctors call that cured. We did have one member here who had a late relapse so just to be sure you might want to get tested at 6 months to be absolutely sure but odds are very good this treatment witll work for you

Best of luck and congrats on getting treatment and finding a resource to help with your copay.
Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on January 09, 2020, 02:05:20 pm
8 Week Bloodwork indicates HVC not detected.  Still on my last bottle of Epclusa.  I'm not sure how long I will testing but as of today, I am good.  Also, I need to correct the 2-week and 4-week tests showed <15, I thought that was undetected. Seems I was wrong.   Thanks again for your comments and thank you for listening.
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on January 09, 2020, 10:23:24 pm
Great news congrats! You may have an EOT blood test and likely a 12 week post treatment test to make sure treatment has worked. Some doctors like to do a 6 months post test to make doubly sure.
Title: Re: My First Dr. Appt for Hep C
Post by: Lullabie on January 09, 2020, 11:12:49 pm
I have my 12-week post-treatment test scheduled and a followup appointment with my doctor a few days later.  I think I do have others they will schedule later.  Thank you.  Thank you for your support.

This was the only place I could go to talk about HCV when I first found out.  I've since talked to several people with mixed reactions.  Even I was concerned about transmitting the virus with little knowledge as to how it was passed.  Thank you for being here.
Title: Re: My First Dr. Appt for Hep C
Post by: Lynn K on January 09, 2020, 11:27:47 pm
No worries it’s what we do here pay it forwards ;)