Doctor prescribed Epclusa...scared

[trisha1234]

I am 43 and have been diagnosed for aprox 15 years. I am treatment naive, fibroscan 0. GT 3a. I have the typical symptoms, tired all the time, anxiety, depression, sleep problems, excessive sweating (?), feeling of a death sentence constantly hanging over me...and shame...oh the shame!

My doctor has prescribed Epclusa and I'm just waiting for approval at this point. Can anyone say how long (approximately) I will be waiting for approval and then once approved, how long to actually get the treatment. I am in Canada.

I am nervous and scared and just want to get this over with. Also, if anyone can tell me the best time of day to take the medication. I know everyone is different but what are some of your experiences with time to take pill. If I take in the evening, how does that factor into sleep quality? Other than drinking a ton of water (I've got that one loud and clear lol), any other tips?

I should mention, I'm also very excited and feel blessed to be near an end to this ordeal. Thank you

[lporterrn]

I can't help you with the approval time question or specifically about Epclusa since I took Harvoni, but I do have a tip for you to consider. Use this waiting time to build up physical and emotional strength. If you don't have any regular health practices, consider adding in walking and mediating. Plan to have some fun so you won't just be thinking about treatment.

[Jorah]

Hello Trisha nothing to be scared about..don't worry ...its not like you're doing chemo, many people don't feel nothing at all ..you'll be ok right away its just nervousness and excitement. Fibroscan zero? You should be doing very ok.
Some feel some nausea at the beginning (I took a ginger capsule) ...Some people take the pill in the morning because it gives them energy . Some take it at night because they feel tired so they sleep over it.  You can switch the pill around as long as its within a 2 hour window. But the Docs like for you to take it everyday at the same time. It needs to stabilize. I take it in the morning and I'm ok...
Besides the water, you can try to eat some healthy food and stay away from sugar products and alcohol. No craparola that will stress the liver, I don't touch processed food.
You're waiting approval in what province?

Best of luck

I am 43 and have been diagnosed for aprox 15 years. I am treatment naive, fibroscan 0. GT 3a. I have the typical symptoms, tired all the time, anxiety, depression, sleep problems, excessive sweating (?), feeling of a death sentence constantly hanging over me...and shame...oh the shame!

My doctor has prescribed Epclusa and I'm just waiting for approval at this point. Can anyone say how long (approximately) I will be waiting for approval and then once approved, how long to actually get the treatment. I am in Canada.

I am nervous and scared and just want to get this over with. Also, if anyone can tell me the best time of day to take the medication. I know everyone is different but what are some of your experiences with time to take pill. If I take in the evening, how does that factor into sleep quality? Other than drinking a ton of water (I've got that one loud and clear lol), any other tips?

I should mention, I'm also very excited and feel blessed to be near an end to this ordeal. Thank you

[trisha1234]

Hi Jorah. Thanks for your reply. I am waiting approval in BC. I am just anxious to know roughly how long to get the treatment. (Does it take weeks for the meds to become available or what is typical?) Fibroscan 0. No liver damage, I do have a fatty liver though with elevated ALT AST scores.

[Jorah]

Once its approved its very fast...a week or two. Did the Doc have an idea how long does it takes for the province to approve? I would think 3-4 weeks all together....You'll meet with treatment nurse, the specialty pharmacy will check what your taking and explain interactions and they'll take blood. Find out who's working for the approval and call them because they may have the tendency to slack.

[strangerbynight]

Hi Jorah. Thanks for your reply. I am waiting approval in BC. I am just anxious to know roughly how long to get the treatment. (Does it take weeks for the meds to become available or what is typical?) Fibroscan 0. No liver damage, I do have a fatty liver though with elevated ALT AST scores.

I dont know about B.C but i am in winnipeg manitoba and i just had fibroscan and i am at F0-1 and not qualify for medicine, thats my province policy, i have to be F2 or above..beside i have this hep c since 1981..i am in a panic like you too..i am going for generic drugs from india..

[Jorah]

You bring up a good point, but BC has always been ahead of the rest for this kind of stuff , who knows.
Trisha is you're Doc a hepatologist and said you meet the provincial requirements ?
I was browsing and saw yesterday generic epclusa from Bangladesh for $840 US.
What quote did you get from India ..Stranger?

I dont know about B.C but i am in winnipeg manitoba and i just had fibroscan and i am at F0-1 and not qualify for medicine, thats my province policy, i have to be F2 or above..beside i have this hep c since 1981..i am in a panic like you too..i am going for generic drugs from india..

[strangerbynight]

You bring up a good point, but BC has always been ahead of the rest for this kind of stuff , who knows.
Trisha is you're Doc a hepatologist and said you meet the provincial requirements ?
I was browsing and saw yesterday generic epclusa from Bangladesh for $840 US.
What quote did you get from India ..Stranger?

I havent order it yet, i will see my hep doctor on june 26 and will see whats going to hapen, when i did a fibroscan a week ago i was only told by the nurse that i will not qualify for drugs..i will ask my hep doctor if shes agree to monitor me if i go with generic drugs..i was told on hep without border group on facebook it will cost me under $1000 u.s..this is crazy that i have to wait until my liver gets more damage to qualify..

[Jorah]

Yes I know its crazy with the "waiting for you" to become worst. It could cost them more money for hospital etc..when people become worst.
I'm pretty sure they'll work with you if you get generics, mine in TO said they're open to that.

[strangerbynight]

Yes I know its crazy with the "waiting for you" to become worst. It could cost them more money for hospital etc..when people become worst.
I'm pretty sure they'll work with you if you get generics, mine in TO said they're open to that.

May i ask are you cured now? Or you are in the same boat with me?

[Jorah]

I'm on the 6 th week of TX.

I was looking at the Manitoba thing and it says you qualify if you have: elevated ALT levels and/or level of fibrosis.

http://www.catie.ca/en/practical-guides/hepc-in-depth/treatment/treatment-coverage-your-region/manitoba

[strangerbynight]

I'm on the 6 th week of TX.

I was looking at the Manitoba thing and it says you qualify if you have: elevated ALT levels and/or level of fibrosis.

http://www.catie.ca/en/practical-guides/hepc-in-depth/treatment/treatment-coverage-your-region/manitoba

My ALT and AST is high..i hope they will cover it.

[Jorah]

Long history of having it, high LFTs, you have lots of fatigue..depression    etc etc looks like they should. More details on the link in regards to ways of getting it and support programs....let us know how it goes...

Update- I was looking at the BC form and Trisha meets the criteria because she also has fatty liver...(I think many of us do)

[Mugwump]

A word about the situation in BC. I was extremely fortunate in that I have extended Blue Cross and was covered one week after Ottawa approved Harvoni. I was GT1a and F4 so my situation was different.

HOWEVER the now X BC government has had a policy of ducking and running for cover when it comes to HCV treatment with the new meds. When the media reported on the situation there was no comment from Cristy Clark on the matter or any of her ministers and minions. So it has been very difficult to get treatment if you do not yet have advanced liver disease. http://www.cbc.ca/news/canada/british-columbia/woman-denied-hep-c-cure-pharmaceutical-company-profits-soar-1.3922785

It has been as if the 70 thousand residents of BC who currently have confirmed chronic HCV infection do not exist in the eyes of those who ran the show. It was very convenient for the government to warehouse us as patients and not have to treat us when there was no viable treatment. Now there is no longer an excuse for not negotiating a deal with the greedy American drug companies the way Australia has done. http://www.abc.net.au/news/2017-02-21/eradication-of-hepatitis-c-on-the-horizon-researchers-say/8289542

The reason why the previous government here was not considering universal coverage for HCV is because of their policies of cutting spending to create the appearance of a phony balanced budget at the expense of essential services. While at the same time lining the pockets of their supporters with all sorts of government incentives and pork barrel handouts from the public purse.

With what is occurring with a minority government the whole situation is up in the air. The actual truth about the provincial coffers and especially the portion of it that can be added to the gutted health care sector is going to take time to expose. We have had 15 years of pork barrel style budgets with little increases in essential spending, so it is going to take some time to discover what can be done financially to eradicate HCV early instead of waiting until the victims of the disease progress to advanced liver disease which was the policy of the last government.

To sum things up letters and e-mails to the new members of the legislature might help change things quickly.

I sincerely hope that you can receive epclusa without having to go through stress and hassle, my best advice is to stop considering yourself to blame and feel constant shame about being HCV active and chronic! Taking a positive approach to what can be done and not dwelling upon the disease is the only way to combat the depression, fear and uncertainty that having HCV brings.

I know that if I had not studied music and most importantly did things to take my mind off the disease during the years I was infected my life with HCV would have been unbearable.

Do not let HCV become a disease of the spirit.

In fellowship

Eric

[entil54]

I am 62 and had for almost 40 yrs.  Dr. stated that he was going to file for approval process. visited Dr. 2 weeks later for bloodwork. I have a appointment with doctor on Tues. 06/06 Actually received letter for CVS and Epclusa with coupon for discount last week. I certain understand being scared. I am very apprehensive myself. At 42 You have a lifetime ahead of you. Stay strong. Look for love and support from those close to you. Stay strong for those closet to you. Best of luck. I will be praying for you. We have both been blessed to be in our situation.

[strangerbynight]

So i have seen my doctor 2 days ago and she said i am not qualify for the meds so i told her that i really want to get myself cured and i am going with generics drugs from india, i ask if she is willing to monitor me for this but then she told me that she has never heard about this generics drug in north america and she told me that within a year canada health care system will change and eventually will treated everyone with hep c and she said right now she is going to apply the compassionate support groups from zepatier company and we did filled the form for it and now i have to wait for 2 weeks to find out if i am approve or not, but she also told me that she thinks she can get it for me, so now my questions is what if i am not approved and should i continue to wait? My next follow up appointment is jan 8 2018, i am now F0-1 and my fibroscan is 6.2kp, she told my that my liver is like a normal person without hepatitis..do you guys think the drugs company will give me this drugs? Anyone been through this route? Thanks.

[Lynn K]

Hepatitis c takes years to decades to harm the liver if it ever does. Only about 20 of patients infected with hep c for 20 years will develop liver disease within that time.

That being said some do experience  what is known as extrahepatic symptoms. And most will say they feel fatigued. Plus just the knowledge you were caring a virus. In the US being a young woman of child bearing potential is one reason you could qualify for treatment  rather than putting your life on hold until such time as they let you be cured.

 But yes in your present circumstances waiting for even a year or two as far as your health would have likely no impact.

Most of us here were infected for decades waiting for affective treatment. I was infected for 37 years. Unfortunately, I was diagnosed with liver cirrhosis after 30 years of infection.

I hope your doctor gets you approved best of luck

[BillT]

Hi Entil,
           Don't worry about the age thing.I was 60 when I went through it and and I feel great now.I know it's easier said than done but try and relax.Cheers

[GovindaR]

Started Epclusa on June 23rd and just had my first blood test. The results are very encouraging:
ALT (SGPT) went from 62 to 19
AST (SGOT) went from 51 to 20
Hep C Viral load down to <15 from 66,272 !!!

I have eight more weeks of treatment and from all indications, I should (?) be free of the Hep C virus.

Initially, I was a little apprehensive about starting this treatment given all the side effects I read about. However, I must say that I tolerated this medication quite well. For the first few days I had trouble sleeping but I countered this by taking a strong cup ( 2 tea bags ) of Chamomile tea and a Unison at bedtime. This really helped !!

I also experienced a slight headache on a daily basis but nothing to warrant taking any Tylenol or any such medication. I also felt a little more tired than usual and reduction of appetite. Now the headache is no more as I guess my body has adjusted to the medicine.

Overall, my experience has been good so far. I will update this post after my second blood work in late August

[gnatcatcher]

Excellent progress -- Govinda, you are well on your way to a cure.