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Author Topic: Weighing taking Vitamins and supplements during Epclusa  (Read 13265 times)

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Offline MommaT

  • Member
  • Posts: 65
  • Tomorrow Is a New Day
Weighing taking Vitamins and supplements during Epclusa
« on: October 05, 2016, 07:19:40 am »
Hello!
 I have a question! I am going on week 4 of 12 week and I only take Epclusa-no riba and blood pressure medication Losardan 100 mg together in morning. Should I stagger?

My concern, too is I have not take for 4 weeks of my Multi vitamin with minerals, Calcium for Osteopenia-(pre Osteoporosis) and 150 mg Milk Thistle.

Can i take them? I see only see some Calcium and St John's Wort are bad.

Thanks!

62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #1 on: October 05, 2016, 10:34:45 am »
Most of us avoided taking anything that we don't have to take while on treatment so if it isn't prescribed especially herbal supplements I would not take them.

That being said vitamins are fine to take and don't discontinue any prescription meds unless advises to by your doctor.

You should have informed your doctor of all meds you are taking both prescribed and not including any herbal supplement and had this discussion with your doctor's office about when and how or if to take any meds you are using.

I have seen several people say they stopped taking calcium but I haven't seen where they have found this information. I am not aware of any reason to stop taking calcium I have not seen that in the prescribing information sheet for Epclusa.

https://www.gilead.com/~/media/files/pdfs/medicines/liver-disease/epclusa/epclusa_pi.pdf?la=en

So my personal non medical person thoughts are take your multivitamin and your prescription meds as well as your calcium and don't take the milk thistle.

If you could show me a reference where it was said not to take calcium I would appreciate that for my own knowledge as I have not seen anything about that from an official source. I have only seen a couple of fellow patients say that.

Take your blood pressure med whenever it is convienient for you is my thought.

But first and foremost your doctor or pharmacist are the best people to ask this question.

Here is a link to a website from Gliead to help those treating with Epclusa including access to a support staff who can answer questions like yours.

http://www.epclusainfo.com/what-is-epclusa

They have a phone number also 1-844-4-EPCLUSA I would call either this number or your doctor or pharmacist they are the experts.

From the web page for Epclusa support "Onward"

KEEPING THINGS SIMPLE TO HELP YOU REACH YOUR GOALS

Whether you’re thinking about treatment, making plans to see a specialist, exploring insurance coverage, or you’ve already started treatment, Onward will be there along the way to help you move forward. Onward helps guide you, inspire you, and celebrate each step you take on your treatment path.

Get all these great resources, delivered how and when you need them.

Step-by-Step Guides
You’ll get simple step-by-step guides for each step on the treatment path to let you know what comes next and an interactive tool to help you track how far you’ve come.

One-on-One Live Support
You can call us or we can call you. You can choose to get phone check-ins from an EPCLUSA Educator who’ll be there for you with answers and encouragement along the way.

Personalized Tips & Advice
Based on the information you give, you’ll get healthy living tips, expert advice, and inspirational stories from other patients, all personalized to your needs.

Good luck with treatment
« Last Edit: October 05, 2016, 10:38:49 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline MommaT

  • Member
  • Posts: 65
  • Tomorrow Is a New Day
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #2 on: October 06, 2016, 12:42:30 pm »
Thanks Lynn!
I found Calcium under "moderate" when you check Epclusa- site Drugs.com

https://www.drugs.com/drug-interactions/sofosbuvir-velpatasvir,epclusa-index.html?filter=2&generic_only=#C

Major 48
Moderate 69
Minor 1
62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline rk

  • Member
  • Posts: 99
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #3 on: October 06, 2016, 05:37:28 pm »
Momma T

I had a similar concern about calcium. My nurse said some yogurt before taking epclusa to prevent nausea was ok. Then later said no calcium supplements within 4 hours of epclusa. I realized they both have calcium after my class on epclusa.

Not being able to speak to her before then ( I start taking it tomorrow 10/6) I called Gilead. A nurse their said supplemental & dietary are treated different. Supplements want to be on stage with epclusa and will interfere with absorption and dietary does not.

I take calcium & magnesium also and intend to separate them by 4 hours as my nurse suggested. My grey area was dietary and yours is supplemental. Thought you may want to know.  Rod
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,545
  • Get tested, get treated, get cured, fight Hep c!
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #4 on: October 07, 2016, 03:38:18 am »
Thanks Rod good information!

OK so yeah take calcium supplements in the same way as acid reducers like tums which I did take on treatment but did not take my usual Prilosec So I endured a lot of heartburn on treatment. So yeah no closer than 4 hours before you take your meds or 4 hours after you have taken them to keep antacid environment to allow for better absorption of the meds.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline MommaT

  • Member
  • Posts: 65
  • Tomorrow Is a New Day
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #5 on: October 07, 2016, 04:09:54 am »
Thanks RK-
Did you say you took a class on Epclusa? wow wondered bout that. Honestly, I saw so many medications that are not good... I was so afraid of messing up with epclusa that I just stopped taking my Milk Thistle and Multi Vitamin with Minerals and My calcium and Zantac. I have arthritis pain and Osteopenia pre Osteoporosis and get depressed in winter so need my Vitamin D, too.

My Gastro said nothing about the drugs and Vitamins I listed-not even Milk Thistle. Also just noticed that labwork shows my Vaccine for Hep B did not work. I am positive For antibodies to Hep A but still a negative to B. Is that possible for vaccine NOT to work? I am disappointed in the level of care this Gastro has really just checked out on me! I really feel like I am on my own. I did get week 4, 8 and 12 VL Labwork Scripts in mail.

I have so many questions! I will call Gilead and ask about drug/food interactions. I know Epclusa needs the right stomach PH to be broken down. I GOT to get this timing right.

 I also HATE the Lack of brain function Epclusa brings me after taking it. I become a zombie and sometimes cry out of sheer frustration and know now what an Alzheimer patient must feel like. Rarely able to keep my day functioning normally anymore. It is a real struggle-the best mentally I feel from most hours after taking Epclusa. I briefly get my mental function back.

I am both grateful and scared of DAA meds. There was No long term follow up on Trial subjects. Will it interfere with my ability to fight disease and is now my bodies defenses going to be compromised? From what I am seeing Med takes out the Hep C but may damage the bodies ability to keep other illness in check-so possible down the road well what? People are seeking supplements to compensate and help body get back bodies defenses.

I hope Epclusa works with not making me worse in other health issues. It was a hard decision.

Someone said weigh your options. You have Cirrhosis for now Compensated which means still functioning and somewhat reversible. So bite the bullet and get treated. News Medically seems the future is finding targeting ways using your own body defenses for it to recognized and kill it. It is called I think Immunotherapy.

Sorry to lay this on you-IF ANYONE SEES THIS GIVE ME SOME INPUT

Thanks

Terry

 
62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline rk

  • Member
  • Posts: 99
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #6 on: October 07, 2016, 02:46:55 pm »
Hi Terry,

I have a lot of faith in my gastro. He and especially his staff have addressed all of my concerns to date. I never realized how important a qualified and caring staff can be. My class was by phone only because it saved me a lot of time and a long trip. We went over all my meds and supplements and what to avoid or restrict.

His nurse always returns my calls and she gave me the class. Of which I was told no antacids, St johns wart, melatonin or milk thistle. She said if nausea is a problem take with food. Our consensus was a smaller amount, like a little yogurt as I mentioned earlier. I did not press on the antacids as I never use them but I imagine with enough separation it may not interfere.

Towards the end she said after a month dispose your razors & toothbrushes. We do not want you reinfecting yourself. I forgot all about that possibility. I use an electric razor but will have to toss out a couple of Sonic brush heads.


It think calling Gilead is something you should do. My brief and probably one time call let me know they are there to help 24 hours a day.

By the way my nurse told me symptoms like brain fog is not the drug, it is the liver.
I did not get into details but took that as the liver is healing.

I took my 1st pill this morning, yea! I can feel some effect of the fog most mention.
Yea its a little cloudy and a new adventure. Hope I helped, good luck to you.

Rod

   




9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Mw2324

  • Member
  • Posts: 138
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #7 on: October 07, 2016, 04:10:46 pm »
Hey Rod,
   I have a question. Did they say why you couldn't take melatonin? I've been told by 3 pharmacists and my doctor that melatonin is OK. Is that a decision based on you and your liver or is that a general statement? Thanks.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline rk

  • Member
  • Posts: 99
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #8 on: October 08, 2016, 01:09:03 am »
Mw, I did not question why but like you I have read where some say its ok. So I asked about benadryl and she said that was ok. Then I checked the ingredients and decided to pass. They are all mild, not like a script so I decided not to take anything. I have Diazepam but the gastro told me try to avoid. You could call Gilead and see what they say. Rod
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

Offline Mw2324

  • Member
  • Posts: 138
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #9 on: October 08, 2016, 08:03:02 am »
Rod,
   Thank you for the useful info. I did call Gilead prior to taking it and they said there are no known interactions,  however I will no longer use it, just in case. Now I'm just freaking myself out thinking I compromised my treatment by taking melatonin. I guess we'll see. Thanks again.
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline MommaT

  • Member
  • Posts: 65
  • Tomorrow Is a New Day
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #10 on: October 08, 2016, 08:45:58 am »
Hello Epclusa Adventures!

I really like that I can see what others are being told-very helpful! Since my Gastro is pretty young, getting married and the Hep C Girl who specializes in treatment says she never gets calls because-there are no side effects and never has to talk to anyone?  well I am baffled. I am Def with wrong Dr.

RK Thanks! Good Luck your first pill! You are ahead of the game! You make me feel better! Interesting after this week 4th-dispose of old toothbrush and razor! reinfection-never thought of that!

What about no Hep B immunity? Dr missed that! Now I see DAA can bring back Hep B if you had it! I am staying the course,  cautiously.
62 year old Female
Treatment Naive
Genotype 2b
2001 Dx Donated blood after 9/11
2002 Biopsy F1
2016 Fibroscan 15 F4
Comp Cirrhosis Stage 1
pretreatment VL 1,722.660 mil
platelets 122 low
alpha 2 Macroglobulins 647
Apolipoprotein A-1 214
GGT 67 high
AFP Serum Tumor Marker 11.4
ALT 563 AST 332
2016 Sept 16 Epclusa started
4 wk VL <15 HCV Detecte
ALT 19 AST 18
8 wk VL HCV Undetected!
12/8/16 EOT Yipee!
12 wk VL HCV Undetected
SVR 12
SVR  24  10/5/2018 HCV Undetected   12/10/18 DETECTED????????

Offline Mw2324

  • Member
  • Posts: 138
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #11 on: October 08, 2016, 10:04:41 am »
Hey Momma T,
    It's funny you say that, I went to the doctor yesterday.  I am his only patient on epclusa but he was surprised when I told him I don't always feel great. It's like they read that there are minimal side effects and disregard the fact that we don't feel good. Ugh. On a side note, I've been changing my toothbrush every week and throwing razors out after every use . Have a good weekend!
30 yr. old female
Infected in 2006
Genotype 2b
Pretreatment:
F0
Alt 28
Ast 30
Viral load 49,000
Started Epclusa on 9/9/16 -12 week treatment
4 week viral load undetected... ALT 19 AST 19
12 week eot viral load undetected...ALT16 AST 11

Offline rk

  • Member
  • Posts: 99
Re: Weighing taking Vitamins and supplements during Epclusa
« Reply #12 on: October 08, 2016, 11:41:57 am »
Rod,
   Thank you for the useful info. I did call Gilead prior to taking it and they said there are no known interactions,  however I will no longer use it, just in case. Now I'm just freaking myself out thinking I compromised my treatment by taking melatonin. I guess we'll see. Thanks again.

I wouldn't get to worked up about it. I think some doctors and staff may be a little over protective. You know (nothing is going wrong on my shift). Gilead has their protocol and if in question they defer you to your doctor. I plan to speak to my nurse next week. I'll ask about that & why if I don't forget. Time being, when in doubt, proceed with caution. Rod
9/14/2016 pre-treatment
GT 2
Viral load 2940
Platelets 142
AST        16
ALT        6
Fibrosis stage  F3
LSM        10.1 kPa
Started Epclusa 10/7/16
EOT + 12 weeks HCV undetected

 


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