Author Topic: Harvoni Side effects (Read 2094809 times)

Keanu2015 · « **Reply #1600 on:** March 25, 2015, 12:34:57 pm »

Hi Eleanor,

I did make an appt to see him on April 8th. My last pill of my 2nd bottle is April 16th (8 weeks). I just spoke to Harvoni's support path and they said they HIGHLY recommend I stay on treatment for the full 12 weeks.
Of course who really knows what he's thinking. My doctor doesn't stand to gain by cutting me off right? I look at it both ways. Yes I have F-4 but on the other hand my viral load at start was under 4 million. In some cases, taking the pill longer than needed is counter productive. Things to ponder I guess. Thanks for your help Eleanor. Hope you and everyone else is doing well today!

EleanorB · « **Reply #1601 on:** March 25, 2015, 01:15:52 pm »

@ Keanu - Sounds like a good plan. Good luck and good health!

mario555 · « **Reply #1602 on:** March 25, 2015, 01:19:38 pm »

Keanu, I vote the same as Eleanor. Take as much as you can get or afford because if you relapse, they won't have something new for many years to come. They could retreat but you have already done well up to now!
I have a similar history with my hep c and I'm scheduled for 24 weeks. I have already done 19 full weeks and I can't stand the pills anymore. Everyday I want to quit but after 2 failed attempts, I don't want a 3rd one! If you do 24 weeks, you have close to 100% chances of a cure. Everyday I want to stop and everyday I have to tell myself to shut up and swallow! I am looking at my last bottle and can't stand the sight of it anymore but...
I would suggest you call the Gilead help line, explain your case and ask for a deal on additional weeks. Then put your money together and "invest in yourself". You wouldn't hesitate one second if your daughter was sick, do the same for you!
I don't know which pill will "do the trick". Is it my week 16? 20?. I am almost 100% confident I am cured by now (VL4 was UND) but what if?? Try to get 16 weeks? You never know... Good luck to you!

Katie · « **Reply #1603 on:** March 25, 2015, 01:34:32 pm »

Hi Keanu, That's wonderful news but just remember, there isn't a test that is sensitive to zero and there are those who have been UD during trials who relapsed. I don't know about Harvoni as most results aren't in for SVR12 but it certainly happened with S/O. What your test definitely did show is that you are a strong responder and will beat this thing but don't be premature about the treatment, especially since you have cirrhosis.

Very exciting news. How did the rest of your blood work look?

Make the appointment and have a wonderful day knowing you are on the healing path!

Joy to you,

Katie

TTSP · « **Reply #1604 on:** March 25, 2015, 03:19:20 pm »

@keaunu First of all I wish you the best with your doctor and the insurance company.

I am having trouble with my insurance company over refills for a $15 (retail) bottle of Triamterene-HCTZ! And I have not had any blood work done since I started Harvoni on Feb. 26. I'm 6 days behind you.

I can understand people who have had previous relapses with other treatments getting blood work more often. My current doctor told several times that my best chance at getting the Harvoni for a full 12 weeks was to avoid multiple tests.

I have gone back and forth on all of this. I'm beggining to believe the doctor was right. By the way my case is similar to yours. I have not had any previous treatments, stage 4 cirrhosis, viral load 3.7 million.

I want nothing but the best for everyone. One day I want to scream at my doctor and tell him to order the damn tests, the next, I see the logic in patience over angst.
Right now I'm going to stay with the plan and do 12 weeks, test at the end, and do a comprehensive test with some sort of biopsy 3 months later. If it doesn't work, I will ride it out till the next time. I don't expect anyone to agree with me. This is my decision. Who knows I may change my mind later.

Nothing but the best to everyone!

Lynn K · « **Reply #1605 on:** March 25, 2015, 03:20:46 pm »

Looks like standard notes on the end of the report also " Finish course RX" RX means prescribed so that means finish course prescribed so if you were prescribed 12 weeks that is your prescribed course.

In other words finish your 12 week treatment as you were prescribed.

Good luck

SunIsOut · « **Reply #1606 on:** March 25, 2015, 05:58:39 pm »

Quote from: TTSP on March 25, 2015, 03:19:20 pm

@keaunu First of all I wish you the best with your doctor and the insurance company.

I am having trouble with my insurance company over refills for a $15 (retail) bottle of Triamterene-HCTZ! And I have not had any blood work done since I started Harvoni on Feb. 26. I'm 6 days behind you.

I can understand people who have had previous relapses with other treatments getting blood work more often. My current doctor told several times that my best chance at getting the Harvoni for a full 12 weeks was to avoid multiple tests.

I have gone back and forth on all of this. I'm beggining to believe the doctor was right. By the way my case is similar to yours. I have not had any previous treatments, stage 4 cirrhosis, viral load 3.7 million.

I want nothing but the best for everyone. One day I want to scream at my doctor and tell him to order the damn tests, the next, I see the logic in patience over angst.
Right now I'm going to stay with the plan and do 12 weeks, test at the end, and do a comprehensive test with biopsy 3 month later. If it doesn't work, I will ride it out till the next time. I don't expect anyone to agree with me. This is my decision. Who knows I may change my mind later.

Nothing but the best to everyone!

Hi everyone,

A liver biopsy is not all that conclusive and relies on random samples of the liver that might be right or not. The new alternative is Fibroscan that is comprehensive and accurate without being invasive.

I would not rush on a new biopsy before you give the liver a chance to regenerate as well. Here is an article on the Fibroscan.

http://www.henryford.com/body.cfm?id=46335&action=detail&ref=1993

Something to consider. For me my blood platelets were so low that they had to do a transjugular biopsy so if I began to bleed I would bleed back into the vein. I had an infection from the injection at my neck and do not see myself repeating this procedure.

I go for my labs this Friday as they pushed my appointment out a week and I am on my second bottle now.

Take care all!

Keanu2015 · « **Reply #1607 on:** March 25, 2015, 07:11:11 pm »

Hello Everyone!

Thank you all so much for your great info. In my mind I have decided to stick with the 12 weeks. I hope my doc and health insurance continue to see it the same way. Lynn Thanks I do now feel like I must have misinterpreted the note. My Ins. approved RX is definitely for a 12 week course. I also have my insurance backed up on that as well with supplemental Ins. so that was a blessing. Katie there was no other blood work ordered. I asked for the VL test to see where I stood and that was all they agreed to test. I'll ask for another VL test AFTER I get my 3rd bottle! Perhaps at EOT 12? TTSP You ARE really similar to me wow! I was holding on as long as I could for this better treatment as I was getting savaged. I was starting to become a shell of my former self so this couldn't have happened at a better time for me. Sunisout I agree with you... The medieval biopsies are an unnecessary risk! (Read that link TTSP! I did the Fibrosure test myself and my Ins. accepted that). Folks I have another question: Natural Wellness has a product called Ultra Nourish. Is anyone else using that to help our livers regenerate and fight this while on treatment? I've been doing so but only 1/2 scoop mixed w cranberry juice every other day and 12 hours AFTER I take my Harvoni. Anyway, again I really appreciate you all for helping me out. I'm praying for everyone to whip this horrific beast. God bless!

kaemicha · « **Reply #1608 on:** March 25, 2015, 07:26:49 pm »

Hi all,
I'm Michelle and I'm also new to Harvoni. Two and 1/2 weeks ago. Last week I felt great and was so happy but this week I feel worse than before I started the Harvoni. I'm weak, dizzy can't sleep and have zero energy.

Until today, most of the Harvoni posts seemed to be so positive with no side affects but today I see others have problems and I think someone said they felt better 6 weeks in.

I'm supposed to go out tonight and need to get out but I'm just so shaky..but don't want to be housebound. I guess I'm just saying Hi, posting my problem and if anyone has any helpful information, I'd appreciate it. I'm so glad this forum is here!

mallen · « **Reply #1609 on:** March 25, 2015, 07:50:20 pm »

hi,i will be starting harvoni 3-27-15,i drink 2 beers a day,should i stop?i have had hep-c for 30 years or more.Enzyme levels are ok, and liver is fine.any food tips for stomach issues when starting?thank you.

SunIsOut · « **Reply #1610 on:** March 25, 2015, 08:00:12 pm »

Quote from: kaemicha on March 25, 2015, 07:26:49 pm

Hi all,
I'm Michelle and I'm also new to Harvoni. Two and 1/2 weeks ago. Last week I felt great and was so happy but this week I feel worse than before I started the Harvoni. I'm weak, dizzy can't sleep and have zero energy.

Until today, most of the Harvoni posts seemed to be so positive with no side affects but today I see others have problems and I think someone said they felt better 6 weeks in.

I'm supposed to go out tonight and need to get out but I'm just so shaky..but don't want to be housebound. I guess I'm just saying Hi, posting my problem and if anyone has any helpful information, I'd appreciate it. I'm so glad this forum is here!

Hi Michelle,
My energy is in cycles and today was a sleep a lot day. I have some reading to do for work and some outdoor raking and pruning so I am hoping to force the issue tomorrow. I do not get the headaches but I do have this constant pressure sort of like sinus pressure without the sinus problems and fuzzy vision. I cannot tell what is Harvoni or my body in change so I am just rolling with it. I think we all have some variations in our bodies vibe and I for one am not pointing fingers at the medicine or how I am adjusting to it.

Keanu2015 · « **Reply #1611 on:** March 25, 2015, 08:00:28 pm »

Hi Michelle and Mallen,

Michelle If you meant you've been taking Harvoni 2.5 weeks? then I'd have to share that after my 3rd week I was feeling worlds better! There will be ups and downs but this medicine is amazing! hang in there! Mallon if your doctor hasn't already told you to abstain from alcohol 100% then please allow me-Don't do it brother! Your liver doesn't need any extra work while it's going through this! Give yourself a chance to be cured first then perhaps you can celebrate later if you choose. Personally I'm not touching even one until a year after I absolutely KNOW I'm 100% cured.

SunIsOut · « **Reply #1612 on:** March 25, 2015, 08:07:20 pm »

Quote from: mallen on March 25, 2015, 07:50:20 pm

hi,i will be starting harvoni 3-27-15,i drink 2 beers a day,should i stop?i have had hep-c for 30 years or more.Enzyme levels are ok, and liver is fine.any food tips for stomach issues when starting?thank you.

Hi Mallen, I like wine but I am in no way mixing that with this treatment so it has been straight water and juice for me. I am not a doctor and mine did not exclusively mention not to. I personally think that there are so many things that are toxic to the liver (fructose, fat, chemically laced foods) that picking a fight on a couple of beers or wine seems over kill but I personally chose to abstain.

All our diets are different. I only eat fresh meats, veggies, fruits, nuts, organic yogurt. I would understand the difference in glucose that is used by every cell in the body versus fructose that no cells want and your liver has to process it out. Naturally occurring sugars are fine. All this changes if you are diabetic and I am not. I have not had any stomach issues but I also do not eat that much high acid food and I never mix protein with starch as the stomach acids to digest are totally different so it just sits in your gut. Lots of reading material on all this out there.

Have fun, moderate and know you are on the mend.

kaemicha · « **Reply #1613 on:** March 25, 2015, 08:09:34 pm »

Thank you, Keanu Your reply helped me enormously. It gives me hope and boy, do I need it!

I will be here, in the forum, to ask many more questions! This is the first time I've found a place where I can talk openly, about what is going on.

Michelle

Keanu2015 · « **Reply #1614 on:** March 25, 2015, 08:15:48 pm »

Mallen, to me a liver friendly breakfast is the best way to keep that stomach in check. As one idea I like to eat a cup of dannon vanilla activia light yogurt with a cup of raw strawberries chopped into it. I think that's been helping to keep my digestion good. I also like a bowl of oatmeal on occasion. Kashi cereals are good too. They don't have a lot of iron in them. Too much is bad. I have lots of ideas and tips but I could write all day. Just thought I'd toss you a tip or two for now.

Michelle glad I could help but just fyi I'm a rookie too! lol I do have some good ideas and will also try my best to pass along what I have learned from others! You're in the right place! Good luck everyone!

SunIsOut · « **Reply #1615 on:** March 25, 2015, 08:30:25 pm »

Quote from: Keanu2015 on March 25, 2015, 08:15:48 pm

Mallen, to me a liver friendly breakfast is the best way to keep that stomach in check. As one idea I like to eat a cup of dannon vanilla activia light yogurt with a cup of raw strawberries chopped into it. I think that's been helping to keep my digestion good. I also like a bowl of oatmeal on occasion. Kashi cereals are good too. They don't have a lot of iron in them. Too much is bad. I have lots of ideas and tips but I could write all day. Just thought I'd toss you a tip or two for now.

Michelle glad I could help but just fyi I'm a rookie too! lol I do have some good ideas and will also try my best to pass along what I have learned from others! You're in the right place! Good luck everyone!

I mix fresh berries with my yogurt too and tend to fancy the organic Stonefield Raspberry, Blueberry and Strawberry and cut up fresh strawberries or pour in the other two.

Karen1124 · « **Reply #1616 on:** March 25, 2015, 08:34:11 pm »

Hi Keanu,
Congrats on being undetected!! I just think they want you to call the doctor for an appointment. I don't think that they want to stop your treatment at 8 weeks. Sounds like your doing well! Life is Good!!... Karen

Karen1124 · « **Reply #1617 on:** March 25, 2015, 08:51:38 pm »

Hi Mallen,
I read your post about drinking 2 beers a day. I would say to ask your doctor. My opinion is no alcohol while on treatment. Take care of yourself eat right and exercise! Drink lots of water to flush your system! Hopefully no side effects. Best wishes to you! Life is Good!!
Karen

Mugwump · « **Reply #1618 on:** March 26, 2015, 12:50:06 am »

Quote from: mallen on March 25, 2015, 07:50:20 pm

hi,i will be starting harvoni 3-27-15,i drink 2 beers a day,should i stop?i have had hep-c for 30 years or more.Enzyme levels are ok, and liver is fine.any food tips for stomach issues when starting?thank you.

I do not known how alcohol will effect the ingredients in Harvoni in your stomach. It takes about 4 hours for the liver to fully metabolize the dosage so I would consider not taking anything that may or may not effect the ability of the liver to take up the med. It is know that Harvoni can be taken on an empty stomach or with food. But there is some literature that finds it is best to take the meds on an empty stomach because it is more quickly metabolized if you have a more acidic stomach content.

I have found that by taking the med in the morning along with my thyroid med and then eating about 3 hours later the side effects are minimal and I have stage 4 cirrhosis. Remember that alcohol actually causes the liver to slow the production of blood sugars and those who have diabetes can actually become hypoglycemic if they drink. So I would avoid it all together if I were you, if you must then try to buy beer that is down at 3.5 to 4% at least for the duration of the treatment and only have it after at least 4 hours taking the Harvoni.

The Harvoni will for the first while cause you to pass more urine and you will find the last thing you need is a dose of vitamin P in the form of beer, you will find that you need to drink more fluids yes but anything that has a diuretic effect is not a good thing!

Take care
Eric

cycler · « **Reply #1619 on:** March 26, 2015, 06:53:21 am »

Just started week 2 yesterday. So far only effects have been a mild headache from time to time. Tylenol takes care of it for me. On day 6, however, I woke up feeling like I had a hangover. Still managed to get to work and put in a full day, as the fog lifted after a few hours, a couple cups of coffee, and an extra tylenol.

TTSP · « **Reply #1620 on:** March 26, 2015, 06:56:27 am »

@ sunis out I like how you highlighted my comment. Apparently you missed a few words like "some sort of". I'm aware that the old biopsy is not the way to go. Where I live, there is no one doing that anymore! I used the term biopsy loosly. I know what a Fibroscan is.

TTSP · « **Reply #1621 on:** March 26, 2015, 07:10:17 am »

To all! I have been to many liver experts and have followed hep research for 13 years. I have yet to hear anything about wine or a couple of beers being OK at all.

I have refused the "mid evil" biopsy ever since my 1st and only one in 2002

TTSP · « **Reply #1622 on:** March 26, 2015, 10:01:32 am »

As far as digestive problems go, I've had my share in the past. Not so much in the 1 month that I have been on Harvoni. I do agree watching what you eat is important.
Acids especially. I also do not eat too close to bed time. My goal is to get through this 12 weeks without any or very little help from any other drug whether it be antacids or pain medication.

SunIsOut · « **Reply #1623 on:** March 26, 2015, 10:42:49 am »

Quote from: TTSP on March 26, 2015, 06:56:27 am

@ sunis out I like how you highlighted my comment. Apparently you missed a few words like "some sort of". I'm aware that the old biopsy is not the way to go. Where I live, there is no one doing that anymore! I used the term biopsy loosly. I know what a Fibroscan is.

My apologies and it is all good!

Just for the record though......a biopsy is the technique of taking actual tissue and a fibroscan is not a sort of biopsy. Hey I forgive you. I think.

TTSP · « **Reply #1624 on:** March 26, 2015, 04:07:39 pm »

@ islandgirl It's all good here too.

Thanks

Islandgirl · « **Reply #1625 on:** March 26, 2015, 04:47:52 pm »

Thanks

Happy to hear that!

I'm on pins and needles... had labs done yesterday and should know late next week if I'm still UND @ 1 month post 12 wk TX Harvoni. Been going through a depressed stage so haven't been posting much; not sleeping or feeling quite as well as I did before end of tx... I'm sure it's all good, or will be

....Islandgirl

mario555 · « **Reply #1626 on:** March 26, 2015, 05:44:22 pm »

Islandgirl. Please let us know how things turn out next week! You'd be the first one able to give us some news about the treatment. We all wish you the best of luck!

kate0b1 · « **Reply #1627 on:** March 26, 2015, 05:46:59 pm »

hey island girl, good to see you, i have been MIA the last few weeks also, i am two weeks out today and today i feel great (it may be that it is warm and the sun is kinda out lol). The last two weeks on tx seemed i felt a little worn out and not bad but not good either, i have two weeks until next labs (hello anxiety, please hold my hand). I just want to be done the wait

ps how's your mama?

kate

kate0b1 · « **Reply #1628 on:** March 26, 2015, 05:48:07 pm »

and @ al, your done today i believe

welcome to the waiting game

be well my friend

kate

Islandgirl · « **Reply #1629 on:** March 26, 2015, 07:13:12 pm »

Thanks guys. I'll keep you posted and want to know what's going on with all of you too. Even when I'm not up to writing I still check in occasionally. Gotta kick this depression. Yes, the waiting game is not easy and holding hands is needed and appreciated. I'm here for you and know you are for me too.

Feel a hug, Kate, and thanks for asking about my mama. She's doing pretty well but I took her to the pain management doc today (she goes every 3 months and is not a candidate for surgery) and she'll have to have another injection procedure done next week for her sciatica and compression fracture issues as the pain meds are just not holding her well enough now. Hope it helps... I try not to worry her with my issues and try not to show that I'm worried/depressed. It's hard to keep something from someone when they live with you. I'd never told her I had Hep C so she wouldn't worry all these years, but now she does know and I'm trying not to let her see my concern. At 91 she doesn't really understand all this but she does understand that if something happens to me it will greatly impact her life. So, chin up and march on

Wishing all of us the best ...Islandgirl

Long_Haul · « **Reply #1630 on:** March 26, 2015, 07:48:34 pm »

@Kate, I am Done, Done, Done! I too have been off since about week 9. Riba had me feeling a bit anemic and quite fatigued. I get EOT labs in the morning, so my regular counts should be posted by Sunday and my viral load Monday evening. I expect it will be UND. I talked my Primary into doing a Viral count at 4 weeks as my GI was waiting to do SVR12 test in late June. She ordered the test for me. At least some of the wait will be easier. Glad you are well.

@Islandgirl, I'm sure you have good news coming soon. Hugs and positive energy to you, know we are here and care about you,

Best wishes,

AL

nadewitt · « **Reply #1631 on:** March 26, 2015, 09:34:41 pm »

Congratulations to everyone with good labs and good wishes to everyone waiting for results!

My advice to anyone just starting Harvoni who suffers from acid reflux, take the pill first thing in the morning with your proton pump inhibitor. Since I have switched to mornings I haven't had any more issues with my acid reflux. Such a relief!

I am very envious of people who have access to a fibroscan. The nearest machine to me is 200 miles away so I have just been going in for an ultrasound every 6 months. All it does is confirm that I have cirrhosis.

I found out today when I ordered my 3rd bottle of Harvoni that my insurance company more than doubled my copay. Since I am on the 24 week prescription, that means I am paying more for this and the next 3 bottles of pills.

I continue to have headaches, sinus congestion and tinnitus but still so much better than the last 2 treatments. I can stick to it! Thanks for all your advice and support.

MEG · « **Reply #1632 on:** March 26, 2015, 11:08:12 pm »

Congratulations @Keanu for your 0 report! I agree with Eleanor, they should mean finish the 12 weeks that was ordered but def check to make sure. With cirrhosis, no way you should be getting 8 weeks...

It's great to read about everyone's progress....God bless you all!

I wrote in another thread that it's been kind of rough going. Sinusitis that won't quit---->relapsed twice on antibiotics. Hopefully that is behind me now.

But what is in front of me is elevated liver functions from the antibiotics and a terrible strained neck with pain that radiates down my arm. Heating pad and a topical NSAID(Voraten) that I started today seems to be beginning to help...

My profound fatigue persists---but I can't put it on Harvoni since I was sick with the sinusitis/cold since October....

Still drinking lots of water, and lots of hope!
xoxo

Lynn K · « **Reply #1633 on:** March 27, 2015, 03:00:38 am »

Hi Nadewitt

Have you been to the Support path web site to sign up for the copay coupon so all you have to pay is $5 and support path pays the difference? I don't think people on social security medical (is that Medicare) qualify but otherwise it should be just a phone call.

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance

https://www.harvoni.com/co-pay-coupon-registration?evo_source=MYSUPPORTPATH&_ga=1.36090784.1478436839.1408430403

Pay no more than $5 per co-pay for HARVONI
We believe that cost should not be a barrier to receiving treatment. That’s why the makers of HARVONI offer a co-pay coupon. If you are eligible, you may pay no more than $5 per co-pay. Some restrictions may apply. See Terms and Conditions below.

Co-pay Coupon Terms and Conditions

The HARVONI co-pay coupon program will cover the out-of-pocket costs of your HARVONI prescriptions after you pay the first $5 per prescription fill, up to a maximum of 25% of the catalog price of a 12-week regimen of HARVONI. The offer is valid for 6 months from the time of first redemption
For residents of the 50 states, District of Columbia, Puerto Rico, Guam, and the Virgin Islands. Prescriptions must be filled by a pharmacy in these locations
The coupon is limited to one per person and is not transferable
Coupon is not valid for prescriptions eligible to be reimbursed:
in whole or part by Medicare, Medicaid, or any other federal or state-funded healthcare benefit program
by private plans or other health or pharmacy benefit programs that reimburse you for the entire cost of your prescription drugs
The HARVONI co-pay coupon is not prescription drug coverage or insurance and is not intended to substitute for such coverage
Gilead Sciences, Inc. reserves the right to terminate or modify this coupon at any time without notice

Lynn K · « **Reply #1634 on:** March 27, 2015, 03:09:32 am »

I think the fibroscan is more a substitute for a biopsy than an ultrasound.

The fibroscan stages degree of liver damage like F4 cirrhosis just is not invasive not using a big needle into your liver. I have only had one fibro scan but dozens of abdominal ultrasounds which along with the AFP blood test are used to check for the development of liver tumors as we with cirrhosis have an elevated risk of developing HCC. I do not think a fibroscan is used to check for liver tumors only an ultrasound or maybe something like a CAT scan or maybe MRI can do that.

I will be having my next 6 month ultrasound in June and don't really expect to have a fibroscan ever or maybe in many years to see if the cirrhosis has improved any after I make SVR

Anyhow good luck on treatment to all

Keanu2015 · « **Reply #1635 on:** March 27, 2015, 08:46:59 am »

Good morning Everyone,

Day 36 of 84, Thanks so much for that informative bit of info Lynn! I'm in the same boat as you. I'll be praying for improvement as well.
I researched decaff coffee this morning (which I drink a lot of) and got some disturbing news on how it's made. I'll be in the process of switching brands to a company that uses a natural method of decaffeinating the beans. If you drink decaff, definitely look into using a company such as Coffee Bean Direct for a safer process of manufacturing. Hope everyone is well!

rayne97 · « **Reply #1636 on:** March 27, 2015, 09:58:58 am »

Hello I am 23 years old I have had hep c my whole life. I just started harvoni i am on day three now and this is the first time I have been treated. I had trouble with nausea the first day but that has become very mild to where it is more like a lack of appetite. My main concern is not being able to sleep because I have a small child who did not get hep c (thank god) but I am having trouble keeping up with a toddler with no sleep , any suggestions?

mallen · « **Reply #1637 on:** March 27, 2015, 10:14:55 am »

thank you for the input.i will not be drinking any beer while on treatment.this is a very helpful site with nice people.

Mugwump · « **Reply #1638 on:** March 27, 2015, 06:57:46 pm »

Quote from: rayne97 on March 27, 2015, 09:58:58 am

Hello I am 23 years old I have had hep c my whole life. I just started harvoni i am on day three now and this is the first time I have been treated. I had trouble with nausea the first day but that has become very mild to where it is more like a lack of appetite. My main concern is not being able to sleep because I have a small child who did not get hep c (thank god) but I am having trouble keeping up with a toddler with no sleep , any suggestions?

What helped me the most for the first month was to do something physical which involves the mind every day. Along with more water than usual an increase in activity really helps to ease the stress. There is no doubt that Harvoni puts a slight stress on the system so like a child we need to burn off energy and increase the way in which the body metabolizes liquids and food.

I am well into the treatment and at first there is no doubt that Harvoni ramped up my system, there was an increase in blood pressure, renal functions and general system wide activity. So yes it can effect your sleep but if you are otherwise healthy you should be able to ramp up activity to help your system deal with ridding itself from the virus.

Be kind to yourself and the time will pass quickly. Don't forget that a child no matter how young, will always know there is something going on with their parent. So by simply being kind to yourself you are also being kind to your child. Do things that make you happy and the child will fully understand without a word being spoken.

Best wishes to you and your child and welcome to the forum.
Eric

kaemicha · « **Reply #1639 on:** March 27, 2015, 07:06:17 pm »

Eric,

I read your reply to young 23 year old who's just started. I'm 2+ weeks in on Harvoni, and know virtually nothing about what's going on, what to expect or what might change.

Your reply filled me in on many questions I have/had and I just wanted to thank you. I'm pretty much alone on this one.

Again Thank you,
Michelle

SunIsOut · « **Reply #1640 on:** March 27, 2015, 08:12:08 pm »

Had labs today should get all results next week but some came back in a few hours and posted on my portal page for John Hopkins. Man have I been grumpy and sleepy the last few days and no good reason for it. I have a nice life, family, home job and cannot figure why I am so irritable. I will post full results next week. They did send me the complete blood count results where the red blood count is low and the Platelet was up to 51 from 49.

Katie · « **Reply #1641 on:** March 27, 2015, 08:54:04 pm »

SunisOut: If your body needs sleep, let it have it. The more you follow what your body needs, the better you will do. I know you know that but thought I'd remind you.

Your body is working hard for you so be nice to it.

Good luck with your tests!

Katie

Katie · « **Reply #1642 on:** March 27, 2015, 09:12:48 pm »

Welcome to the new posters and Michelle, you are not alone! We are all on this journey together. If you have time read some of the history on this and other forums. There is SO much information out there and we all have shared our experiences. It is so helpful and reassuring.

Island Girl: I wish I was there to give you a {{{{HUG}}}} in person. Just hang in there and try to exercise and do things to pick up your spirits. You don't have to do a complete workout but just take a walk in the park or around your yard. Fresh air and birds singing always improve my mood. Hopefully spring is happening for you as that is always good for the soul. I can't remember where you are from.

Meg: I am so sorry about that sinus infection from hell! I've gone through it and it is so hard on everything. The flushing of your sinuses with warm salt water really helps. When I feel lousy, sometimes I forget do do what will help. Hopefully it won't rear it's ugly head again but that may help. If you or anyone you know has a tens unit, that can help relieve your neck pain. I get that on occasion to where I can hardly breathe due to the pain and it does wonders. You also might want to alternate ice with heat and always end with ice. Just using heat can cause swelling. You know I am not a doctor, but I have had years of joint, back, neck and shoulder issues, so am just mentioning what has helped me. Please be better!

Lynn, glad you are improving and hope you enjoyed your birthday!

I have my bedroom in pretty good shape and my remodel was worth it in spite of all the pain, and mess but it is far from over yet. Still have tons of stuff to sort through and of course lots of tools, paint & stain to put away, but I see progress! I am just SO SLOW at doing everything and that's OK. I am just getting antsy to go have some time to relax and dig in the dirt.

Thanks for all of the valuable info from everyone. Have a great weekend and I always look forward to hearing what you are up to. Take care and do what you need to do and we are all moving toward a Hep C free summer! We are!

Katie

MEG · « **Reply #1643 on:** March 27, 2015, 10:48:08 pm »

Thanks so much, @Katie. I've been doing the nasal rinses and *hopefully* they will help keep the bad bugs away. I've not wanted to spread negative energy, but it truly has been a sinusitis from hell, as you referred to it. But all things pass....they always have, so far ;-)

Re;the shoulder/ arm pain. I'm doing heating pad and I know I should alternate the cold, but I get chills just thinking about a cold pak. Esp in winter, I even warm my water a little bit---sometimes a lot. Although my thyroid is fine on the dosage of synthroid I'm taking, I think my body still runs cold. I chill very easily. I will try though!

Islandgirl I'm sorry your spirit is feeling low right now. I think that in our quest to survive, get cured, keep our lives together that we forget how hard all this is---and has been for many years. My therapist reminds me to give myself a hug at times like yours. I'm Praying hard that you'll get news next week to make your heart and mind soar...

@Keanu

Quote

Natural Wellness has a product called Ultra Nourish. Is anyone else using that to help our livers regenerate and fight this while on treatment? I've been doing so but only 1/2 scoop mixed w cranberry juice every other day and 12 hours AFTER I take my Harvoni. Anyway, again I really appreciate you all for helping me out. I'm praying for everyone to whip this horrific beast. God bless!

I'll look up the Ultra Nourish. Truth is that I do not trust Mike Adams, the editor of the Natural Wellness website. He's too quick to make conclusions and tout products that you buy from him or his associates---not based on science---because he knows our vulnerability to do something, do what's best for this difficult disease. I'm not saying that everything he suggests is bad/ineffective, but I have a huge buyer beware mental note when I hear of his products...

You're doing fantastically, Keanu. Keep doing what you're doing. I don't think you need to add anything...

A peaceful nite and weekend to all....@Katie I'm looking forward to seeing pix of your garden!

Katie · « **Reply #1644 on:** March 27, 2015, 11:21:24 pm »

Quote from: MEG on March 27, 2015, 10:48:08 pm

Re;the shoulder/ arm pain. I'm doing heating pad and I know I should alternate the cold, but I get chills just thinking about a cold pak. Esp in winter, I even warm my water a little bit---sometimes a lot. Although my thyroid is fine on the dosage of synthroid I'm taking, I think my body still runs cold. I chill very easily. I will try though!

Meg, please try the ice packs. Bundle up the rest of your body to stay warm and just put the ice where needed. I think the relief (I hope) you feel will make it worth it. Do this several times alternating with heat, take a break and do it again. Let me know how it goes.

Feel better!

Katie

MEG · « **Reply #1645 on:** March 27, 2015, 11:37:22 pm »

Ohhh-kayyyy, Katie. ;-)

Going to dig out my wool socks and blanket--bundle up and do it right now. How much time should I leave the respective paks on.

I actually really appreciate your pushing me on this, Katie. I have one on right now, bundled up and drinking hot tea...Thanks!

Keanu2015 · « **Reply #1646 on:** March 27, 2015, 11:46:12 pm »

Hello Everyone!

Meg thank you so much for the input on Ultranourish! lol I thought that question was a wash already! Great hearing from all you senior and not so senior posters! My dear friends you have all helped me so much already to this point. Michelle and Rayne... I sooooo agree with Katie! (Hi Katie!:) DEFINITELY go back a bunch of pages on this topic-- you can find some amazing Q&A. Just since I've been here 5 weeks I've learned so much! Rayne I wasn't as young as you at the time but I went through raising 2 kids single also. 16 months apart both in diapers just 8 years ago. I can totally relate! I agree with Eric... exercise as much as you can and drink a ton of water. For one, your body can flush more of the dying virus out. Secondly when you get that metabolism ramped up, coming down for rest periods will allow you to sleep more readily when you get the opportunities. A physical body that's being worked will welcome sleep when it gets the chance! The harder the better, but work your way up gradually to a goal. When I run I push harder to stay going no matter how ill or tired I feel. Then I drink like a fish right after. I do that every other day. As much as I can tolerate. My boys at 10 and 8 still require a lot of attention but no matter how tired I think I am I'll run at 9pm when theyre sleeping. Even if it's my last chance that day to keep my commitment to myself. It's my way of fighting the disease. I am running for my life. The dragon wants you to lay down and give up. We're not about that here! Get some!
God bless you all. Hope everyone is feeling well tonight! ~K

Katie · « **Reply #1647 on:** March 27, 2015, 11:49:23 pm »

leave them on while they stay cold, or if you are actually using ice, probably 5-10 minutes and try to relax while you are doing it. Don't frost bite yourself.

If you don't have the gel packs to use, a bag of frozen peas in a towel works really well.

I'm PROUD of you!

MEG · « **Reply #1648 on:** March 27, 2015, 11:52:52 pm »

Thanks for the reminder. I forgot how well frozen veggie bags work. They mold much better. I'm going to change it up next round.

It feels soothing...nice......

Keanu2015 · « **Reply #1649 on:** March 27, 2015, 11:58:36 pm »

Hope you feel better Meg... thanks again!... Katie we'd be lost with out you

Good night everyone!

Katie · « **Reply #1650 on:** March 28, 2015, 12:03:10 am »

Quote from: MEG on March 27, 2015, 11:52:52 pm

It feels soothing...nice......

Katie · « **Reply #1651 on:** March 28, 2015, 12:05:15 am »

Quote from: Keanu2015 on March 27, 2015, 11:58:36 pm

Hope you feel better Meg... thanks again!... Katie we'd be lost with out you

Good night everyone!

Awwww Thank you Keanu. Sometimes I think I talk too much. I just can't bear for someone, especially my friends here, to be hurting if I have been there, done that!

Have a good evening and sleep like a baby!

Katie

rayne97 · « **Reply #1652 on:** March 28, 2015, 12:14:55 am »

What helped me the most for the first month was to do something physical which involves the mind every day. Along with more water than usual an increase in activity really helps to ease the stress. There is no doubt that Harvoni puts a slight stress on the system so like a child we need to burn off energy and increase the way in which the body metabolizes liquids and food.

I am well into the treatment and at first there is no doubt that Harvoni ramped up my system, there was an increase in blood pressure, renal functions and general system wide activity. So yes it can effect your sleep but if you are otherwise healthy you should be able to ramp up activity to help your system deal with ridding itself from the virus.

Be kind to yourself and the time will pass quickly. Don't forget that a child no matter how young, will always know there is something going on with their parent. So by simply being kind to yourself you are also being kind to your child. Do things that make you happy and the child will fully understand without a word being spoken.

Best wishes to you and your child and welcome to the forum.

Thank you so much. I am staying positive, I feel very fortunate to be able to get this treatment. Just having a rocky start. I will start my workout again lol haven't felt up to it but I will try it out thank you again for the advice. I will let you know how it goes

kaemicha · « **Reply #1653 on:** March 28, 2015, 01:55:32 am »

I don't know how to be active when I can't sleep and have no energy. Even when I sleep I'm exhausted the next day. I do have good days. I even had a good week but it's gone and back to normal.

I'm tentative to make plans or appointments in case I'm too tired or have muddled thinking. When that happens I get shaky and have to sit.

That's not how it is every day but this week, most days. I'll be fine for a day or two then have a couple of days where I only last, energy wise, for a couple of hours. If I'm out and get tired I feel almost claustrophobic because I want to get home to lay down.

I want to get back to working out. Mildly, at first but I need to get moving - as soon as I feel better.

Lynn K · « **Reply #1654 on:** March 28, 2015, 02:12:22 am »

They do say by doing exercise even just mild like walking will actually give you more energy and help you sleep better waking more refreshed the hard part is getting started when you are too tired so baby steps just move they also say exercise helps with having a better mood due to reducing depression which also gives more energy and improves sleep

Good luck

Katie · « **Reply #1655 on:** March 28, 2015, 02:27:58 am »

Hey Michelle, I understand as I had terrible fatigue prior to treatment and 2 weeks on Harvoni (weeks 8 & 10) where I literally had to force myself to move. My best times during the day, at that time, was between 11 & 2 so any appointments I needed to make or grocery shopping I would do it during that time. Sometimes it was hard to get in the car and drive, but once I started it got better, and usually I was very happy to get back home and sometimes would cut my trip to town short, but I went and did what I needed to do.

I found if I pushed myself, I would feel better, even if it was just some simple thing. I made sure I did one chore a day plus anything else I could muster. Laying in bed too much makes you weaker. You kind of spiral down and inactivity causes rapid muscle loss which adds to the problem.

Lynn's advice is right on, and I encourage you to give it a try.

Be sure you are eating good, getting enough protein, and watch your sugar intake as low blood sugar can cause the shaky, weak feeling too and keep hydrated. Very important.

Hang in there and I am sending you a big supportive {{{HUG}}}

Katie

kaemicha · « **Reply #1656 on:** March 28, 2015, 03:11:31 am »

Hi Katie,
This is so helpful. As I said, I came here knowing virtually nothing. You all are giving me such useful information.
I do get around. I don’t want to atrophy! I have stairs and wear a fitbit to see how far I go/how may steps I take each day. So, I can be fairly active, most days anyway, but your advice on my forcing myself to get out and do what I need to, is most helpful at this point. My concern about being out just started and I wasn’t sure if I should power through or wait until..? I’m not sure what or when. I agree with you about being out and getting things done is almost healing.
I have a big problem with hydrating but it’s too confusing to go into here. I’m not supposed to hydrate. Again, confusing and another time.
For now, Big Thanks! I needed to know that I have to push myself more.
Michelle

Islandgirl · « **Reply #1657 on:** March 28, 2015, 11:26:00 am »

STILL UNDETECTED @ 1 MONTH POST 12 WK HARVONI TX!!!!!!!!!!!

Good morning everyone, and welcome to all our new Forum Family members too! Thanks also for everyone's encouragement while I've been feeling so cr*%*y, Meg and Katie I couldn't do without you guys! Physically I'm still not feeling great but emotionally - WOW such good news! I was really frightened that I'd relapsed or something.

This morning I called the lab and found my results were in so went over and picked up copies - couldn't wait until next week

The Hep C viral load tests both still show me as NOT DETECTED! Fantastic news!!!!!!!!!!!!

However, the other test re my blood work will need to be explained by the doc. Most things looked within normal limits, but my platelet count is 124 which is abnormally low (140 to 400 range is where it should fall) That may explain why I have easily exhausted energy...

Also, something called Eosinophil is abnormally high at 6 (normal range is 0 to 5 - so need to find out what that's about. It's possible that these could be the aftermath of the Harvoni that destroyed the Hep C virus?

Anyway, the HCV is still undetected and I now anticipate it still being undetected in September - at which time I can say CURED!!

Hugs and healing energy for all of us! ....Islandgirl

crazycanuck · « **Reply #1658 on:** March 28, 2015, 02:34:04 pm »

I have been taking Harvoni now for 3 days and the fatigue and diarrhea is very intense. Now I don't want to sound unappreciative of this miracle medicine but my Dr. only warned me of headaches. I tried the interferon, riboviron and incivek which I had to stop due to extreme side effects so I am not a stranger to these types of medicine. I am just hoping there is someone who can say "it was worth it and I am cured"!

crazycanuck · « **Reply #1659 on:** March 28, 2015, 02:41:18 pm »

Quote from: kaemicha on March 25, 2015, 07:26:49 pm

Hi all,
I'm Michelle and I'm also new to Harvoni. Two and 1/2 weeks ago. Last week I felt great and was so happy but this week I feel worse than before I started the Harvoni. I'm weak, dizzy can't sleep and have zero energy.

Until today, most of the Harvoni posts seemed to be so positive with no side affects but today I see others have problems and I think someone said they felt better 6 weeks in.

I'm supposed to go out tonight and need to get out but I'm just so shaky..but don't want to be housebound. I guess I'm just saying Hi, posting my problem and if anyone has any helpful information, I'd appreciate it. I'm so glad this forum is here!

I am in the exact same spot as you with the exception I am only 3 days into it with these side effects. I have to say I feel better at heart knowing there are people who are feeling the same way and it's not just me. I'm told it gets better but I don't think there is enough data to prove this. Good luck!!!!!!!

Keanu2015 · « **Reply #1660 on:** March 28, 2015, 06:36:37 pm »

Hi everyone!

crazy canuck and others: I'm at 5 weeks. My first big jump in knowing I was experiencing greatness was at 1 week. My second was after 3. These were points that I KNEW Harvoni was not only winning the fight but making me feel better! As far as seeing the proof... my two week labs were astonishing to me. My 4 week labs were a miracle I'd been praying for for more than half my life now. Hope that inspires you to exercise more... drink way more and KNOW your day in the sun is coming!

Hope everyone is well today! ~ K

Long_Haul · « **Reply #1661 on:** March 28, 2015, 08:03:42 pm »

@Islandgirl, I knew some good news was coming your way, that I awesome news. We all want to hear that. Hopefully that will pick you up and out of the scary wait. I am doing a happy dance for you, and just so excited that you are well on your way to SVR. OH, and I'm jealous too

Best wishes,

AL

MEG · « **Reply #1662 on:** March 28, 2015, 10:23:04 pm »

@Islandgirl!!!!!

Yours is the best news I've heard all day! I can't tell you how thrilled I am for you!!!!!!

About your platelets---how do they compare now to the last time they were taken? Indeed, they may be making you more tired...

Eosinophils...they're a kind of a weird white blood cell. They fight infections but people with asthma can have high levels. Yours sounds just a hair above normal.

I think that ridding ourselves of this infection creates havoc, in a sense, to all the systems that helped us survive the virus---they now don't have that job. If that makes sense...

You are UNDETECTABLE!!!!

MEG · « **Reply #1663 on:** March 28, 2015, 10:33:13 pm »

Hi Michelle, I feel for you and your fatigue. I had severe fatigue upon diagnosis 20 years ago and it gradually got better---to the point where I could make plans and I knew how to pace myself. Was even able to cycle(my favorite physical/spiritual activity)

But I'm back to ground zero and I can't blame it on the Harvoni. I've had a chronic cold/sinusitis since October and I'm finally clear of the infection, but the fatigue is awful...My activity consists of gentle walks with my dog and out doing errands---did a lot today and I am utterly exhausted.

What really depresses me? I've put on weight even though I am eating so healthy--- minimal carbs and lean proteins and vegetables are my staples...Not sure if it's the Harvoni or my metabolism tanking after 5 months of no aerobic activity...both? There's nothing more I can do re: my diet and so I'm working on acceptance of this different body that I'm seeing in the mirror. Knowing that this too shall pass.

I'm glad you found this board---people here are so warm and generous with their knowledge.

Sending you healing thoughts and yes, more energy!

Ruthie · « **Reply #1664 on:** March 28, 2015, 10:48:02 pm »

Quote from: Islandgirl on March 28, 2015, 11:26:00 am

STILL UNDETECTED @ 1 MONTH POST 12 WK HARVONI TX!!!!!!!!!!!

Good morning everyone, and welcome to all our new Forum Family members too! Thanks also for everyone's encouragement while I've been feeling so cr*%*y, Meg and Katie I couldn't do without you guys! Physically I'm still not feeling great but emotionally - WOW such good news! I was really frightened that I'd relapsed or something.

This morning I called the lab and found my results were in so went over and picked up copies - couldn't wait until next week

The Hep C viral load tests both still show me as NOT DETECTED! Fantastic news!!!!!!!!!!!!

However, the other test re my blood work will need to be explained by the doc. Most things looked within normal limits, but my platelet count is 124 which is abnormally low (140 to 400 range is where it should fall) That may explain why I have easily exhausted energy...

Also, something called Eosinophil is abnormally high at 6 (normal range is 0 to 5 - so need to find out what that's about. It's possible that these could be the aftermath of the Harvoni that destroyed the Hep C virus? Anyway, the HCV is still undetected and I now anticipate it still being undetected in September - at which time I can say CURED!!

Hugs and healing energy for all of us! ....Islandgirl

Awesome news!!!

Don't worry about your platelets just yet, until you see your Dr. That's just the range that lab uses. My hematologist considers 100-400 to be normal. He was ecstatic when my count got to 118, after 4 weeks of iron infusions.

Islandgirl · « **Reply #1665 on:** March 28, 2015, 10:53:00 pm »

Al and Meg, thanks! It's a good kind of jealous that I totally get

We all want to be there so badly and it's so scary to worry that you're not. Fear is not a word I associate with myself, but it sure fits what I was feeling.

Meg, my platelets on 12/17/14 were 135 and 8/29/14 (prior to starting Harvoni) platelets were 109. I do think that's making me more tired and I expect most of this is just the aftermath of fighting off the dragon. That's pretty much what Mike said in another post. I'm praying that's what it is. None of us need more stuff to deal with!

Ruthie, I just read your post and it makes me feel SO much better. Thanks!

Yes, BIG SMILE, I am undetectable! Thank God!! I want this for all of us!!!!
....Islandgirl

Ruthie · « **Reply #1666 on:** March 28, 2015, 11:02:43 pm »

Hey, Islandgirl, I had to Google eosinophils LOL It's white blood cells. It just means your body is fighting something. The Mayo clinic (I think that's the one I read. IDK brain fog) says even simple things like seasonal allergies can cause them to elevate.

I'm glad I could help put you at ease a little about the platelets!

Islandgirl · « **Reply #1667 on:** March 28, 2015, 11:11:39 pm »

Thank you, thank you! You helped a lot, Ruthie! Now to just get some energy back

IG

MEG · « **Reply #1668 on:** March 28, 2015, 11:13:45 pm »

Summer time is coming, Islandgirl and you are at the start line of FUN times!

Still sharing your joy...!

Islandgirl · « **Reply #1669 on:** March 28, 2015, 11:30:45 pm »

Meg, I don't know what I'd do without all of you to share this with!

Other people may care about me, but NO one can truly empathize or understand the way our Forum brothers and sisters do. Thanks so much!

We really mean it when we say we are there for each other, but we also understand each other like no one else can, and it's a happy day when one of us gets good news and a not so good day when one of us isn't doing so well. Thru it all, we hang together!

Thanks! ....Islandgirl

MEG · « **Reply #1670 on:** March 28, 2015, 11:48:00 pm »

Islandgirl:

Quote

Other people may care about me, but NO one can truly empathize or understand the way our Forum brothers and sisters do.

Truer words.....I'm so grateful too....rest well, my dear.

coloradogirl · « **Reply #1671 on:** March 28, 2015, 11:58:46 pm »

I am excited to hear the news you received, Island Girl! Such a happy day for you!

kaemicha · « **Reply #1672 on:** March 29, 2015, 02:42:10 am »

Quote from: MEG on March 28, 2015, 10:33:13 pm

Hi Michelle, I feel for you and your fatigue. I had severe fatigue upon diagnosis 20 years ago and it gradually got better---to the point where I could make plans and I knew how to pace myself. Was even able to cycle(my favorite physical/spiritual activity)

But I'm back to ground zero and I can't blame it on the Harvoni. I've had a chronic cold/sinusitis since October and I'm finally clear of the infection, but the fatigue is awful...My activity consists of gentle walks with my dog and out doing errands---did a lot today and I am utterly exhausted.

What really depresses me? I've put on weight even though I am eating so healthy--- minimal carbs and lean proteins and vegetables are my staples...Not sure if it's the Harvoni or my metabolism tanking after 5 months of no aerobic activity...both? There's nothing more I can do re: my diet and so I'm working on acceptance of this different body that I'm seeing in the mirror. Knowing that this too shall pass.

I'm glad you found this board---people here are so warm and generous with their knowledge.

Sending you healing thoughts and yes, more energy!

Thank you for sharing this with me, Meg. I feel so bad for you. I'm really hoping my fatigue and nausea will subside. Today, was a decent day but I did spend most of it in bed. When I got up I was energized. I'm thinking I'll pay tomorrow, unless I'm cured! I can be hopeful but I've got a few other things going on and when I finish my Harvoni, I'm not sure if .. well, it just seems there will be more to deal with.

I really hear you about the weight gain and no way to work it off. I've also gained 5lbs. in spite of not being able to eat much. I was doing lunges, squats and crunches but even that got too much. Now, I just lift weights, when I remember. I've got to get some part of me healthy!

Sharing my story and hearing all of yours helps me immensely. Just the fact that I know I'm not alone, that I can share my progress and set backs with you all and you will understand - well, it's almost healing in itself.
Michelle

kate0b1 · « **Reply #1673 on:** March 29, 2015, 08:13:59 am »

@islandgirl,

I'm sooo happy for you and like al maybe a little jealous

, i have 2 weeks till 4weeks post labs and i want to join you in the happy dance lol

kate

Islandgirl · « **Reply #1674 on:** March 29, 2015, 08:56:29 am »

Kate and Coloradogirl, Thanks so much. Can't blame you for feeling a little jealous, we're only human and the wait seems sooo long.... and when you get here you wonder if this can really be true

I'm ready and willing to share this happy dance

Want us all to be able to join in! Blessings and positive healing energy to all! ....Islandgirl

Keanu2015 · « **Reply #1675 on:** March 29, 2015, 11:17:43 am »

Hi everyone!

Day 38, just started drinking regular coffee on Friday. I was off like a rocket for a couple of days. I drank a bit less of it yesterday though... too much! I must say, I noticed my liver seems to like it though. I thought I'd be hungover today w right upper quadrant pain- Nope. All this time I thought decaff was better for you! Anyway, I still ordered some healthy decaff from Coffee Bean. They process the caff out with water and Co2. Natural process- no wicked chemicals like Folgers. Caffeine changes "me" too much. Maybe TMI but I like sharing with you all what I"m thinking/doing in regards to this topic.
Island Girl that is such awesome news! I'm hoping I can someday graduate to your status!

One other thing: For all of you who are struggling to find energy... Weights don't help me. I do that on days when I feel good. It's the cardio more than anything else that energizes me. You have to get your lungs heaving, sweat dripping and trying to catch up to your breath, but set a pace to sustain the motion for as long as you can. Running 15 minutes straight at 6.0 on my mill these days is hard to do but it sets me up for an awesome day and helps me sleep at night. I notice tiredness and headache (when it's with me) leaving my body at some point during the run. It doesn't seem logical when I'm moping around the house not able to do anything and just wanting to sleep that I'd be able to do this. I have proven that result will change EVERYTIME I force myself to run though it. That past proof is what drives me to crawl though the yuk again and get on my machine. You gotta try to know! Hope everyone is well today. Happy Sunday! K

Islandgirl · « **Reply #1676 on:** March 29, 2015, 11:33:35 am »

Thanks Keanu, it is awesome news!

I'll be waiting for you when you get here and we'll all dance the happy dance

So glad you're doing well and taking care of yourself - thanks for all the great info! ....Islandgirl

Davidlm1 · « **Reply #1677 on:** March 29, 2015, 01:46:19 pm »

Hi. I have had hep C for many years and didn't get diagnosed until after I insisted the doctor test me. I had a serious breakdown of fatigue, nausea and had no idea where it came from. Had this before but never like this. The doctor (and another specialist after this) told me it wasn't possible for hep C to cause these symptoms. After insisting I be tested, sure enough, the results came back positive with a viral load of over 3 million. My load has gone up over 4 million and I have now developed cirrhosis. The insurance, with a little foot dragging, approved me for the medication. I have been on Harvoni for 3 weeks now and still having a lot of effects from it. When first starting it I think I had a touch of the flu so was holding off on what were symptoms from that and what were side effects from the medication. I am continuing to have nausea and some liver pain, along with what I would call bouts of fatigue though am also having some periods of energy I haven't felt for some time. Very committed to following through with the entire regimen as the outcome is worth it if I can get rid of this disease. Trying to stay flushed and taking care of myself as best I can. Getting ready for my first blood test since starting it and looking forward to the results. Will just encourage those with side effects to focus on the long term benefit vs the short term side effects. Thanks, D

MEG · « **Reply #1678 on:** March 29, 2015, 01:57:44 pm »

Hi Michelle,

You're gaining weight too. Oy--now I'm glad I'm not alone. Indeed, we do need each other on this journey.

Do the best you can and that's really all we can do---knowing that this is all temporary and that we'll deal with comes next---joyful or sorrowful with the same determination and guts that got us here...

@Keanu

Ya, I'm glad you reinforced the decaf and how it's processed with chemicals. I went to organic years ago when I learned of the caustic materials Folgers, et. al. use...Caffeine makes me very jumpy and anxious. Can't do it..

Keanu and all Re: the fatigue. I think that those of you who didn't have much of it before Harvoni are in a different place, so to speak.

Speaking for myself, I basically had classic Chronic Fatigue Syndrome---except that they knew it was coming from the HepC....

There is some fatigue--and only the person having it---can know, with trial and error, what works. Over the years, I experimented with all kinds of exercise and activity regimens.

Sometimes it's unhealthy, makes it exponentially worse to "push through it." Because it's not fatigue caused by normal stressors....It's the body's immune system that's exhausted.

Other times, getting up, and even though very tired, to do gentle movements like a walk, some housework, etc. do help----with the proviso that one then rests even if you feel like you can go further....I didn't listen to this yesterday---kept going since I had the energy(this is errands only--no strenuous exercise) and I'm paying for it dearly today...

I'm trying to point out that the fatigue that we all experience can come from a different cause and therefore how to deal with it needs to be different---and only trial and error can help us find the right balance..

Sending everyone strength, hope and resolve!

MEG · « **Reply #1679 on:** March 29, 2015, 02:09:42 pm »

Quote

Sometimes it's unhealthy, makes it exponentially worse to "push through it." Because it's not fatigue caused by normal stressors....It's the body's immune system that's exhausted.

To clarify, it's the body's immune system that is exhausted which leads to a cascade of biochemical reactions in every system of our body----that for some people results in fatigue that can't be pushed through. My only "medicine" has been rest when I reach that point. No diet changes nor supplements---nothing---helps when I need to rest. And then getting back up and gently moving again....

I can't wait for this aspect to heal...it truly has been a burdensome cross to bear for all these years. I never look as awful as I feel and have been disbelieved by countless people and now gaining weight--oy vay.

Islandgirl · « **Reply #1680 on:** March 29, 2015, 02:15:54 pm »

Welcome David

You are so right, it's totally worth whatever it takes. We'll be looking forward to seeing your lab results post and cheering you on

@Meg/Michelle, while still on treatment I lost about 8 pounds without trying, however, it all came right back, also without changing anything! Now, I want it back off!!!

Determination & guts, positive thought, healing energy - my wishes for us all! You're so right about that determination and guts, MEG! Hugs, ...Islandgirl

Davidlm1 · « **Reply #1681 on:** March 29, 2015, 02:23:28 pm »

My doctor said something about losing weight on the medication for some reason, they aren't sure exactly why, and that the weight stays off. I have found myself with a bigger appetite than I have had in awhile. Have also lost about 10 lbs! Not a bad side effect there, is it!

MEG · « **Reply #1682 on:** March 29, 2015, 02:43:40 pm »

I'm so jealous you two lost weight!! @Islandgirl and @David.

Sheesh.....................

;-)

I'm going to sue Gilead.
;-)

MEG · « **Reply #1683 on:** March 29, 2015, 02:46:50 pm »

Welcome David,

I agree with you and Islandgirl. We do what it takes, keeping the eyes no the prize at all times. It's when I get distracted away that my worry thoughts multiply like the the virus..

There is a wealth of information and caring here....

It sounds like you're already seeing some improvement when you describe the bouts of energy you've not experienced in a long time.....

Keep us posted and ask anything. Someone here will know the answer or be able to point you to where to look...

Keanu2015 · « **Reply #1684 on:** March 29, 2015, 03:00:33 pm »

Hi Everyone,

Meg/friends check out Dean Martens. This one is great watch it through. If you view all of his clips you'll be quite amazed. The discipline is tough but along with what Harvoni has done for us I believe we now have the power within us to reverse damage and gain unlimited amounts of energy and abundant health. I was all in a few years ago and I beat Lyme disease (with his philosophical help mainly- juicing, exercising, etc.). I did buy a couple of their products as well which worked for me but I am not promoting that here. I just want you to hear his seminar. Oh and THEN buy a juicer if you don't have one! lol

https://www.youtube.com/watch?v=er-5X7gp5uw Hope everyone is feeling well today! ~ K

MEG · « **Reply #1685 on:** March 29, 2015, 03:06:41 pm »

Thanks Keanu...I've had a juicer and the last few years a Vitamix....

I can't juice/blend in the winter----the chills of cool or even room temp liquids in the winter has always been a problem. I've had a continuous pot of soup going all winter long.Seriously, since October! Got a fresh pot right now going..;-)

Can't wait for the weather to heat up and let me get back to blending!

Keanu2015 · « **Reply #1686 on:** March 29, 2015, 03:27:59 pm »

That's great Meg! Btw I did want to take back something I wrote. I was never actually "all in" with the discipline Dean Martens describes. I actually still ate a few things he says to eliminate such as red meats. I did eat "live veggies" and wheat grass though. I used the juicer religiously. I maintained a good part of what I learned from him for 6 months while I was on meds for Lyme disease and beat it. My scientific prognosis wasn't great. I think if I could have ever gone "all in" for even a year I may not have even hung on to my Hep C. I believe in the things he is teaching that strongly. When our systems are in balance there is nothing stronger that man can develop for fighting illness. Unfortunately I love red meat on occasion so I'll never be all the way capable of following his discipline 100%. Even so I feel great following a lot of it again along with my Harvoni!

Islandgirl · « **Reply #1687 on:** March 29, 2015, 04:01:17 pm »

I'm a Vita-mix girl too, and right now am into green smoothies - and I usually have a pot of soup going too

I like to freeze my soups so I can grab a container when I'm not up to cooking

My 91 year old mom finds a healthy soup or smoothie easiest to eat and digest. She is unable to chew salad well so I make up her salad in the Vita mix and she's all set (I can also put extra veggies in it this way that she would probably refuse otherwise... sneaky! lol) I try to keep both of us eating healthy most of the time, but she will eat dessert first when she can

Thanks for the link, Keanu, the food combining isn't something that I've ever been able to make work for me. Especially with more people to cook for (off and on) than just mom and me. When my LT boyfriend and his almost 17 year old son are here, all bets are off

...Islandgirl

Keanu2015 · « **Reply #1688 on:** March 29, 2015, 05:04:15 pm »

This clip gives you a good understanding of how to eat "energy"
https://www.youtube.com/watch?v=2KTXTvDwaVM

Keanu2015 · « **Reply #1689 on:** March 29, 2015, 05:08:18 pm »

Hi Island girl!
So you have actually tried that? I never did. I just ordered the book "fit for life" that he says to buy. He suggests many more. I have a few others but this one describes how to do it (food combining). So glad your mom is still with us! 91 is impressive

Hope everyone is well!

Islandgirl · « **Reply #1690 on:** March 29, 2015, 05:18:29 pm »

Thanks!

Mom is actually in better health now than when she came to live with me - now going on 7 years

She has plenty of things that can't be "fixed" and cannot live alone any more, but she's doing pretty well all things considered! Good luck with the food combining if you try it

IG

Bituman · « **Reply #1691 on:** March 29, 2015, 06:21:13 pm »

Quote from: MEG on March 29, 2015, 01:57:44 pm

Hi Michelle,

Sometimes it's unhealthy, makes it exponentially worse to "push through it." Because it's not fatigue caused by normal stressors....It's the body's immune system that's exhausted.

Hi Meg,

I am one of those that tries to "push through" episodes of fatigue by working out, yardwork, or just generally staying busy. Most of the time this works and I feel better afterwards. But sometimes it doesn't work and I continue to feel the same fatigue or even worse. Oddly these episodes are almost always accompanied by insomnia, which to me doesn't make sense. So how can I tell when it is okay to push through fatigue versus backing off? What I have learned is that if I'm feeling tired and my resting heart rate is elevated, say 10 bpm over normal, then I know I need to rest and shouldn't try to just push through the fatigue. By rest, I really mean doing nothing, no going shopping, no going to the office, no installing a ceiling fan, no painting the garage, nothing. But it took me a lot of years to figure out that I sometimes need to back off a bit. At least this has been my experience.

Bob

SunIsOut · « **Reply #1692 on:** March 29, 2015, 07:20:13 pm »

Quote from: Bituman on March 29, 2015, 06:21:13 pm

Hi Meg,

I am one of those that tries to "push through" episodes of fatigue by working out, yardwork, or just generally staying busy. Most of the time this works and I feel better afterwards. But sometimes it doesn't work and I continue to feel the same fatigue or even worse. Oddly these episodes are almost always accompanied by insomnia, which to me doesn't make sense. So how can I tell when it is okay to push through fatigue versus backing off? What I have learned is that if I'm feeling tired and my resting heart rate is elevated, say 10 bpm over normal, then I know I need to rest and shouldn't try to just push through the fatigue. By rest, I really mean doing nothing, no going shopping, no going to the office, no installing a ceiling fan, no painting the garage, nothing. But it took me a lot of years to figure out that I sometimes need to back off a bit. At least this has been my experience.

Bob

I have been pushing myself a little too. I repainted the kitchen, dining and all the trim, installed new Dishwasher the last couple of weeks. Today It was about 43 outside so I pruned the roses, spread the milk-spore, spot treated the weeds and raked the backyard to get the last red-gum balls. It took about 5 hours and I am tired but really glad I got out there! I have a lot of yard stuff to go with Deck paint, gazebo paint, pier touch up, tidy the spade trenches along the garden beds. Then I get to get started on the sailboat.

I should get my 4 week labs back this week and will post it!

Kathy C · « **Reply #1693 on:** March 29, 2015, 08:00:25 pm »

I am now on day 39 with Harvoni,
Not feeling great! I have been through 2 diff treatments for H-Phylori and I think I may have it again, same symptoms that I experenced before with H-Phylori.
I wonder if anyone else has experienced having H-Phylori while on Harvoni???
I may call the Speclities pharmacy where I get my Harvoni medication from and talk to a pharmacy person about it.
I also just finished 10 days of antibiotics for a sinus infection, still am coughing a lot and a constant need to blow my nose.
Any one having the same problem? Please share.
Best of luck to everyone. Kathy

MEG · « **Reply #1694 on:** March 29, 2015, 11:57:04 pm »

@Keanu and @Islandgirl

Chuckles...I couldn't live without my Vitamix ;-) It's definitely an acquired taste to drink blended greens without adding lots of fruit. I began doing the latter, lots of fruit and then backing off. I now actually like the grassy taste...Go figure!

Keanu, I'd not known about Dean. I'll watch the link you posted. I spent the day resting, laying low. Drinking water, soups...Felt a potential sinusitis relapse coming on.....feeling better this evening, thank God.

I need to eat red meats too, Keanu. I have tried vegetarianism and it doesn't work for me. Because of the cost of pastured/organically fed chicken, beef, I eat less often than when I was younger. Every time I've cut it completely out, my fatigue has worsened....I've read that some folk's DNA is such that they physically need the animal protein...

I love talking and comparing notes on nutrition. Keep the ideas coming!

Bless your mom, Islandgirl. I'm sure your feeding her all that good stuff has helped her.

Islandgirl · « **Reply #1695 on:** March 30, 2015, 12:21:32 am »

Thanks

Mom and I have adjusted pretty well to living together (thank goodness) but it's strange to feel that I'm sort of the "parent" now. Man, do my brother and his wife owe me lol. I never dreamed what a tremendous responsibility it would be. I do it willingly and am grateful to still have her, but it's sure more complicated than I realized it would be. Gotta stay well and keep a good sense of humor

For my "green" I usually put lots of fruit too. Sometimes dry oatmeal, extra virgin cold pressed coconut oil (1 Tbs for 16 oz smoothie) almonds that I soak overnight in spring water and add the water to any liquid in the smoothie, a whole green apple; banana, all sorts of tropical fruit... I'm still experimenting with greens and like spinach or baby kale (have to watch giving mom too much kale - it's a good clean-you-out lol) Check out simplegreensmoothies.com for some great ideas.

Bed for me - sleep well and feel well - hugs ...Islandgirl

MEG · « **Reply #1696 on:** March 30, 2015, 12:23:32 am »

@Bitumen/Bob.

Quote

But sometimes it doesn't work and I continue to feel the same fatigue or even worse. Oddly these episodes are almost always accompanied by insomnia, which to me doesn't make sense.

I can't explain the physiology(too tired right now) but indeed, when I overdo it, I can be so tired and cannot sleep. And of course, that makes the fatigue worse the following day. Sometimes I'll take an atarax(antihistamine) to help me sleep and break that cycle.

As you've done, we constantly have to be aware of our body sensations, vital signs and take into account: what have we eaten lately? Have we hydrated enough? Getting enough veggies?(minerals, until recently, have been under-appreciated with all the focus being on vitamins in the nutritional field). What activities have we done and what effect does a particular activity have on us?

ADD: very importantly and I know we all know this, what kind of psychological stress is in our lives?

I'm recalling right now that several years ago I became involved with a man that lived an 8 hour car drive away---I was incredibly happy---but relapsed myself to profound fatigue for weeks because of over-doing it by doing that long drive to see him. Even when it was his turn to come see me, we squeezed in so many activities. It was this experience that affirmed for me that my fatigue was surely a physiologic issue and my emotions may or may not be the problem. And surely were not the sole reason.

It's so hard to make generalizations beyond the above for people with HepC because there's such a wide spectrum of the levels of fatigue different people have.

With me, fatigue, frequent sinusitis were the symptoms that came on first.....I recall, in between sinus infections and not experiencing feeling better---I was quite athletic----power walking, cycling and working 12 hour shifts in a busy PICU and ER.....I did nutritional consultations, even went vegetarian, boosted my water intake, exercised even harder----to no avail.

I had the classic symptoms of Chronic Fatigue Syndrome(CFS)---but for the hcv virus being recently "discovered," that's the diagnosis I would have had for years.

I spent lots of time on the Chronic Fatigue Forums for years because it's with that patient population that I had the most in common since biopsy showed I had just a mildly inflamed liver and my LFT's were only somewhat elevated and low viral loads---and the profound fatigue, flu-like symptoms. I met hcv patients at the support groups that had much worse liver disease but very little to no fatigue. It puzzled me then and it still does now...How can this be? My doctor doesn't have an answer for this.

I learned a lot about managing my fatigue from the CFS boards....it's the reason I piped in last nite about it...that indeed it's different for all of us---its causes, etc...Now that we're older, cardiac issues need to be explored if we have fatigue of unknown causes. Anemia, on and on....Oy vay. ;-)

Bottom line, Bob, as we agree---it's about becoming watchmen for our bodies and looking for patterns, eating and drinking as well as we can. 85-90/10 has been my rule for years. Harvoni therapy has made me go 100% all in re: my food/fluid intake. I've never in my life eaten this cleanly and well, consistently-- I'm entering my 9th week. Dear God please let it pay off.

Keep on cycling! I can't wait to announce my first bike ride of the season...

Islandgirl · « **Reply #1697 on:** March 30, 2015, 11:03:11 am »

Hi Meg, first, YES - it's gonna pay off!

In reading your post, you describe much of my own history- chronic sinus and fatigue issues, then and now. Years ago all they could come up with was that I "might" have Chronic Fatigue Syndrome. Some years later, they thought, but weren't sure, that I might have hep, but not A or B ("C" wasn't known or named back then) - or back to the CFS possibility. Many years after that, I donated blood at work for their blood drive and got a nice registered letter that I had the antibody to hep c. Best we figured out was that I got it during a blood transfusion (6 units) when a surgical stitch gave way too soon and every time they got the bleeding stopped, it began again.

I still have the sinus issues and intermittent fatigue... I'm hoping that those will improve or disappear as I continue the healing process post Harvoni tx. Sounds like you are doing a great job taking care of yourself. As you've said, and I believe, we have to listen to our bodies and assess what's going on in our world.

BTW, my long term (15 years) boyfriend is about 8 hours from me - he makes all the trips here. We used to be in the same industry and traveled extensively, much of it in the same areas so it was fairly easy. Now, he's teaching electrical trades as a second career and trying to stay 2 more years so he can keep the benefits. He and his almost 17 year old son spend all Holidays, Spring Break and the summer here so we probably have more time together now than when we were traveling for business.

As a side note, we decided he should be tested for hep c, particularly since he had a couple of surgeries as a boy when his father was stationed in Peru. Just got the results and he is A-OK and emailed me the report to put in my med files. As my doc and I discussed, then he and I discussed, there was little likelihood that he was infected but he did have medical procedures prior to mandatory screening, or anyone even knowing about hep c. Just covering all bases to make sure I remain UND

and he stays hep c free

I've read that several couples on the forum periodically test to be sure the non hep c partner is still ok; just makes sense. Fortunately, I've never read where the non hep c partner ever tested positive for the virus! Keep taking good care of yourself and feel a hug ...Islandgirl

dragonslayer · « **Reply #1698 on:** March 30, 2015, 01:09:52 pm »

Quote from: SunIsOut on March 25, 2015, 05:58:39 pm

Hi everyone,

A liver biopsy is not all that conclusive and relies on random samples of the liver that might be right or not. The new alternative is Fibroscan that is comprehensive and accurate without being invasive.

I would not rush on a new biopsy before you give the liver a chance to regenerate as well. Here is an article on the Fibroscan.

http://www.henryford.com/body.cfm?id=46335&action=detail&ref=1993

Something to consider. For me my blood platelets were so low that they had to do a transjugular biopsy so if I began to bleed I would bleed back into the vein. I had an infection from the injection at my neck and do not see myself repeating this procedure.

I go for my labs this Friday as they pushed my appointment out a week and I am on my second bottle now.

Take care all!

Fibroscan is fine for certain conditions.. It appears to be very accurate at measuring cirrhosis. However it's accuracy suffers when dealing with fibrosis in the mid range. As a confirmation for cirrhosis, fine.. But as for accurate staging in the F1-F3 areas, the biopsy is still the gold standard... There have been many threads on several of these Hepmag forums by global mods that refer to this.. In addition, Fibroscan is not recommended for those with ascites, morbid obesity and/or large amounts of chest wall adiposity. Henryford.com is singing its unmitigated praises, no doubt, because their locations have become the first in their area to have implemented it, and, therefore, have a keen interest in marketing it as effectively as possible.

Im not condemning it; just stating that, in the mid ranges of staging, the Biopsy is still preferred.

crazycanuck · « **Reply #1699 on:** March 30, 2015, 01:25:41 pm »

Quote from: Keanu2015 on March 28, 2015, 06:36:37 pm

Hi everyone!

crazy canuck and others: I'm at 5 weeks. My first big jump in knowing I was experiencing greatness was at 1 week. My second was after 3. These were points that I KNEW Harvoni was not only winning the fight but making me feel better! As far as seeing the proof... my two week labs were astonishing to me. My 4 week labs were a miracle I'd been praying for for more than half my life now. Hope that inspires you to exercise more... drink way more and KNOW your day in the sun is coming! Hope everyone is well today! ~ K

Thank you very much Keanu2015 for your post! It gives me hope!

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