Author Topic: Harvoni Side effects (Read 2092900 times)

MEG · « **Reply #1300 on:** February 24, 2015, 04:02:41 pm »

Katie: re: sinusitis. I'm seeing my PCP tomorrow to have my 4 week on-treatment labs done.

Since yesterday, my cold has progressed to severe sinus pain---even in my cheek bones. Because I didn't want to take a decongestant(I did do a long hot steam shower) 4 hours before nor 4 hours after Harvoni---it was horrible sleeping last night(I take H with dinner).

I think I need antibiotics. I've been "nursing" this since October---drinking more water than ever since Harvoni, and with the pain and inflammation spreading further into my sinuses(in addition to the malaise, muscle aches of what I've been calling a cold)-----what do you think?

I haven't taken antibiotics in years but I'm also afraid that being sick during this Harvoni treatment(begin week 5 tonight) may compromise my immune system's ability to "help" the H to do its job....

Do you know if antibiotics used for sinusitis are Ok with Harvoni?

575to505 · « **Reply #1301 on:** February 24, 2015, 04:07:48 pm »

Hello all! I'm 1 week and 5 days in with Harvoni and I was wondering if anyone is having issues with your tongue. My tongue feels a little numb and or tingly. It's strange, kind of hard to explain.

Keanu2015 · « **Reply #1302 on:** February 24, 2015, 04:36:38 pm »

Hello everyone,

Meg I think your doc may be able to prescribe an anti-bacterial solution to your problem that doesn't affect your Harvoni. Hope your PCP appointment goes well!

Day 5 -I have less and less pain and discomfort in my liver area day by day but today I've been feeling pressure in my kidney areas both sides of my lower back /inside. Even though I'm sucking down the water all day I have to push a bit to get it out. I have a feeling it's because there is a massive amount of dead cells and virus coming through and could be slightly overwhelming my urinary system. Has anyone else experienced this?

Katie · « **Reply #1303 on:** February 24, 2015, 05:06:35 pm »

Meg...sorry to hear that. Be sure you ask the doctor specifically about the type of antibiotics. I have found they get so used to prescribing a certain kind for a certain infection they forget our liver's are compromised and so I don't have a problem questioning them about it. My pharmacist is really up on that and he always checks too. Sinus infections can require strong antibiotics so be sure they check it all out. I had a difficult time getting rid of mine and it lasted a good year. I was SO sick, coughed my brains out and developed a hiatal hernia from it. I hope yours doesn't get to that stage but it sounds as if you are brewing one up.

Let me know how it goes.

575: My tongue was OK but the tip a bit sore. I just figured I scalded it on hot soup but my teeth ached for about a week with no reason. Be careful you don't get Candidis as I had that because of the sinus infection and Hep C AND low level of Vit D (which is common in Hep C patients). Hope you get some answers from your doctor!

Keanu, My urine was really strong smelling for awhile...noticeably so. I'd be really careful with the kidney thing That almost sounds as if the prostate could be involved?

The virus cells are really microscopically small requiring an electron microscope so I don't think the dead ones are clogging up your system but I always say "Everything is connected" so Harvonie could definitely affect your other biological functions, I guess. Maybe you are just having an issue changing your diet and not using all of your supplements and green drinks. If the pain gets worse or the urine flow stops, please see a doctor!

I wish all of you relief from your pain! You too nadewitt. So much suffering and such a variety makes you wonder what is from Harvoni and what is just a coincidence. Be diligent with your doctors and question them and make sure they are listening. Many just focus on one issue and fail to look at the whole person.

Blessings and please take care!

Katie

Keanu2015 · « **Reply #1304 on:** February 24, 2015, 06:09:45 pm »

Hi Katie,

Thank you so much for sharing your thoughts and experiences with us. The prostate was checked and in perfect condition just a few months ago. This thing is definitely related to Harvoni or going cold turkey on my ultimate meal and vitamins. Its not stopping my flow just feels fuller all the way around the inner workings. I don't have an open comm. with my gastro doctor. Especially on Mon and Tues when he's in the hospital. I will consult with my PCP anyway to be safe. Thanks again Katie,
I hope you're doing well today!

575to505 · « **Reply #1305 on:** February 24, 2015, 06:18:47 pm »

Katie,

Hi and thanks for your reply. What is Candidis? I am already low on Vid D so I've been on a supplement for some time now. I will talk to my doctor about it when I go in in a week or so.

Katie · « **Reply #1306 on:** February 24, 2015, 09:00:02 pm »

575 Hi! I spelled it wrong. It's Candida. Opps It a yeast infection and can be systemic. Your mouth gets heavily coated, especially your tongue and it is a pain to get rid of. Candida thrives in a alkaline system which is often brought on by taking antibiotics. It likes all mucous membranes and antibiotics and diet affects it. I have no idea if Harvoni affects the pH, but haven't read anything about it so I am assuming it doesn't.

I had it really bad during my sick period with the year long sinus infection which I mostly contribute to the low Vit D level, which affected my immune system and the Hep C (but I didn't know I was infected at that time) and then I was on and off antibiotics for an entire year. It was horrible. When my blood work came back my ALT/AST was off and that led to my Hep C diagnosis. Then I thought, No Wonder I have felt so horrible! Getting my Vit D level to 40 made all the difference in the world but I can't get it higher than that. They are finding "D" is indicative of all sorts of health issues and am so glad they are paying more attention to it. I still had hep C symptoms of fatigue etc, but I no longer caught every bug going around.

This site gives you some information if you think it is a problem

http://www.thecandidadiet.com/ph-levels-candida.htm

Katie

dmclain · « **Reply #1307 on:** February 24, 2015, 10:34:23 pm »

Hi everyone! I'm new here. Day 12 on Harvoni! Cant wait to be cured! 1st few days the fatigue was like nothing I've experienced before but its alot better I'm drinking monster drinks tho!? my question tho is can i take sinus meds my list of no nos doesn't have it on there but i saw a comment on here say we cant take it?

Katie · « **Reply #1308 on:** February 24, 2015, 10:47:17 pm »

Hi DM and Welcome to the forum. You will find it is great to have support and feedback from those doing the battle right with you. I don't know about the sinus meds and would ask your doctor or Gilead. Will probably depend on what exactly you are taking and be sure to ask if there should be a time frame followed.

I have 2 more Harvoni pills to take for my 12 week treatment! WOW it went so fast. I found the side effect to be very mild but they did seem to cycle. Basically I have felt better than I have in years with the exception of week 9 & 10. Horrible fatigue and gloom and doom. Then one day I woke up and felt great. So be prepared to have a bit of a roller coaster ride. Others have experienced far worse side effects than I.

Good luck to you. Hope your treatment is easy sailing and we all march on to the cure.

Katie

dmclain · « **Reply #1309 on:** February 24, 2015, 11:30:54 pm »

Thank you Katie! I don't want to do this alone. I have some more questions but they can wait its getting late! Really happy to be able to connect with others going through this! Good night all!

Lynn K · « **Reply #1310 on:** February 25, 2015, 04:54:44 am »

http://www.livestrong.com/article/522701-is-sugar-from-fruit-good-or-bad-for-the-liver/#page=1

Most Americans fail to get the recommended amount of fruits and vegetables each day. You needn't worry about the sugar that occurs naturally in fruit if you're eating it in typical amounts, as it won't harm your liver. In fact, consuming fruits -- as well as vegetables -- as part of a nutritious diet promotes health. The same can't be said for fruit sugar, or fructose -- a commercial sweetener used to add a sweet taste to many foods. Evidence suggests it may promote fat accumulation in the liver.

nadewitt · « **Reply #1311 on:** February 25, 2015, 08:55:47 am »

Thanks to all for your comments and support. Those of you nearing the end of treatment, I hope this really is the end of your fight with this horrible virus. I go for my 2 week labs on Monday. Curious to see what they show since the doctor didn't do any pretreatment labs. Luckily I had just been to my primary physician for my yearly checkup and she ordered labs to check my blood and thyroid levels. At the time we didn't know I was going to start treatment. I feel like all things are working for my good and I wish the same to all of you. I hope everyone is having a good day today!

Keanu2015 · « **Reply #1312 on:** February 25, 2015, 09:39:35 am »

Good morning friends!

Day 6... I woke up with not enough sleep (6hrs) and feeling some pain again upper right quadrant. Got boys ready for school, drank a 16oz glass of water and took my Harvoni. Chopped a cup of strawberries into a cup of Dannon vanilla -activia light (60 cal) yogurt and it was awesome! I'm having some decaff coffee (Folgers- simply smooth) with Fat Free milk and a couple tbsp of coffee mate creamer now...delish! Pain is getting a bit better 3 hours in.
Katie I'm so happy for you! you've given me so much help so far ..not sure I'll be able to survive when you get cured and leave us! lol
Lynn that is fantastic reinforcement info on the fruits and veggies as I worried about the fruits a bit but still thought they were ok in moderation. About the prohibitive stuff.. Lord knows we have plenty to watch for if we want the optimum chance to be successful. Thank you!
Nadewitt sounds like you're in good hands with medical personnel and a bit of luck! ...we all need some. I still need to develop a plan for my steps moving forward. I haven't been given regimented direction. My Gastro is not a very hands on type. I'm getting most of my info myself right here from all of these wonderful people.
Dm- Welcome! I'll help with any advice I can as we go along here. I only had a touch of fatigue on day 4. I have had some sleepiness and headaches but not too bad so far. What are your stats? I'm GT A1, VL 4 million, F-4 cirrhosis 0.90, A3 Activity 0.89. Praying for you all! Destroy the alien invaders!

Mugwump · « **Reply #1313 on:** February 25, 2015, 11:28:33 am »

Quote from: Lynn K on February 25, 2015, 04:54:44 am

http://www.livestrong.com/article/522701-is-sugar-from-fruit-good-or-bad-for-the-liver/#page=1

Most Americans fail to get the recommended amount of fruits and vegetables each day. You needn't worry about the sugar that occurs naturally in fruit if you're eating it in typical amounts, as it won't harm your liver. In fact, consuming fruits -- as well as vegetables -- as part of a nutritious diet promotes health. The same can't be said for fruit sugar, or fructose -- a commercial sweetener used to add a sweet taste to many foods. Evidence suggests it may promote fat accumulation in the liver.

HERE HERE!
HCV is not the only problem we need to deal with in the long term.
It is precisely because we concentrate sugars and refined carbohydrates that we have serious problems with obesity, diabetes, dental problems and a myriad of other problems that come with the over-consumption of refined carbohydrates.

There is nothing wrong with whole fruit and juices that do not contain added sugars. The problem is when you begin to prefer to remove pulp and do other things that concentrate the fruit sugars. What my mother did is to actually thin the juice out to the point where it would become almost water. This did two things, it saved a swack of money and it helped to not rot teeth.

Like salt, you can become desensitized to sugar and not even realize that you are actually consuming it in quantities way beyond what is healthy.

By actively reducing the quantities of salts and sugars your sense of taste will quickly start to improve. It is amazing how getting used to less salt and sugar will enliven your taste buds!

Try using bitter as an adjunct to flavour and watch what happens to your cooking. Use zests of fruit peels and your taste buds will not crave the actual sugars in fruits. Many great Chinese dishes do exactly this and balance things with the trinity of hot, sweet and sour by using the aspect of bitter. Tamarind is not sweet it is actually quite sour and bitter and when used correctly brings out the natural sweetness of foods.

Food science is an art and can help greatly to get over the North American addiction to junk foods! Most people who are hooked on junk foods do not even realize that yellow onions actually add sweetness to food when cooked and this is a terrible problem. It creates cooking habits that are completely wrong and create a viscous cycle of obesity with huge numbers of people who are taste bud challenged and crave sugars and fats.

This along with excess alcohol consumption is why there is an epidemic of cirrhosis. After we clear this disease we need to take this into careful consideration as those of us who have cirrhosis will need to take better care of out diet and get off the junk food treadmill to protect the levels of liver functions we have left.

Good foods nourish the mind and body and satisfies all ones needs, too much food does neither!

Eric

Katie · « **Reply #1314 on:** February 25, 2015, 01:52:37 pm »

Quote from: Keanu2015 on February 25, 2015, 09:39:35 am

Good morning friends!

Katie I'm so happy for you! you've given me so much help so far ..not sure I'll be able to survive when you get cured and leave us! lol

Don't worry Keanu, Glad I can help. I'll be around for another 6 months as my bloodwork continues and I still have to see what my end of treatment comes back at. Then the waiting begins, and I am going to need support from everyone here. Since I have felt SO much better taking the magic pill, I am nervous not having that security blanket anymore. $:-\$ It's a good thing spring is coming and I can dig in the dirt and plant, grow and nurture, going back to my Minnesota farm girl background. It is healing for me.

My last pill tonight. I can hardly believe it! So you are all stuck with me for awhile! Don't Worry, Be Happy!

Islandgirl · « **Reply #1315 on:** February 25, 2015, 02:28:24 pm »

Last pill for me tonight too Katie! Hard to believe - and now the long wait, but aren't we all lucky to have this wonderful opportunity! Definitely worth it!!!! Thanks Katie and everyone else for the support and encouragement of our Forum Family. Hugs, ...Islandgirl

Katie · « **Reply #1316 on:** February 25, 2015, 02:40:04 pm »

Yes Island Girl! Nicole and you and I are together in this so, starting and ending on the same day. I hope you'll remain on the forum and we can compare notes and recover together! You two have given me strength and helped me. Everyone on this forum has become very important to me. Lynn, I admire you so much as well, along with so many. Thanks to all! And where is Mel? A special thanks to Mike and Eric and Mario and Kate and Bob and Brad and Paul and the list goes on with so many encouraging me from the very beginning of my journey. Too many to mention, but you all have a place in my heart.

Now I need to get back to my painting.

Islandgirl · « **Reply #1317 on:** February 25, 2015, 03:21:48 pm »

Katie, you've expressed my thoughts so well! Now, if I could just get you to do my painting

LOL

Mel, could you please check in? Hope you're OK. You are needed and missed!

Yes. I'll remain on the Forum, I'd miss you guys too much and I need the reassurance we give each other. No one will ever understand in the same way our Forum Family does. Thanks again every one. I love you guys so much. ....Islandgirl

kate0b1 · « **Reply #1318 on:** February 25, 2015, 04:03:41 pm »

hey girls, I'm so happy for you and a little jealous

, its so exciting to see everyone get done (did i mention i had 15 days left lol).
I think the hot springs sound like heaven, but I'm the hold list for that as well, as i just paid for a rather expensive trip to fla (at least it was warm and we were able to sun and swim).
@katie, now that I'm back i am moving on with the painting and am about 1/2 way done, this was more work than i thought it would be lol, but i so want it done before its time to play with the plants/flowers. (oh wait it has to be above 30 for that).
kate

kate0b1 · « **Reply #1319 on:** February 25, 2015, 04:04:16 pm »

PS i am also wondering about mel, has anybody heard from her??

kate

dmclain · « **Reply #1320 on:** February 25, 2015, 04:59:33 pm »

Hi everyone! Katie all I know is my viral count is 7 million the other info you guys talk about I will have to ask my doctor about I'm surprised it's not in my on line Beaumont chart? I have low energy you guys!? And my joint problems are back!? Lower back sacral area the worst? Anyone else is this normal and it the other info that I don't have important? Oh and please all of you finishing Don't Krave Us! We need to hear about life after Harvoni!!!

dmclain · « **Reply #1321 on:** February 25, 2015, 05:01:27 pm »

*leave us lol

Katie · « **Reply #1322 on:** February 25, 2015, 05:26:43 pm »

Quote from: dmclain on February 25, 2015, 04:59:33 pm

Hi everyone! Katie all I know is my viral count is 7 million the other info you guys talk about I will have to ask my doctor about I'm surprised it's not in my on line Beaumont chart? I have low energy you guys!? And my joint problems are back!? Lower back sacral area the worst? Anyone else is this normal and it the other info that I don't have important? Oh and please all of you finishing Don't Krave Us! We need to hear about life after Harvoni!!!

I always advise everyone to get hard copies of ALL of your tests for your personal records. It is good to be able to read them over, compare and even check things you don't understand on this forum and online. The moderators here are really helpful as are some of the participants. The records will also come in handy in the future if you ever need to have your medical history available. Remember these are your tests, on your health and the doctor's office shouldn't have any problem giving them to you.

Others have had joint issues with Harvoni, it seems. I have lots of issues with joints and can't tell if it is worse or not with the treatment.

You can go through this thread and see what others have said on side effects. If you go to the left corner at the bottom of the page you can click to see all the previous comments and there are pages and pages on this topic. You probably know that, but it took me awhile to find it....then again I can be brain dead sometimes. LOL!

Katie · « **Reply #1323 on:** February 25, 2015, 05:32:03 pm »

Quote from: kate0b1 on February 25, 2015, 04:03:41 pm

hey girls, I'm so happy for you and a little jealous , its so exciting to see everyone get done (did i mention i had 15 days left lol).
I think the hot springs sound like heaven, but I'm the hold list for that as well, as i just paid for a rather expensive trip to fla (at least it was warm and we were able to sun and swim).
@katie, now that I'm back i am moving on with the painting and am about 1/2 way done, this was more work than i thought it would be lol, but i so want it done before its time to play with the plants/flowers. (oh wait it has to be above 30 for that).
kate

Kate: It's always more work than it seems. You should see the mess I am living with! Everything from my bedroom is in my living room and I look like a hoarder. I am just finishing up the small landing going to the Bedrooms and bath, and then the guys will come in and finish putting in the baseboard and trim. I am fixing a lot of little but irritating things I paid someone else to do a few years back Really poor work. I told one guy if he was a finish carpenter, I was a Master carpenter! HA!

Good luck on your project and happy to have you back with us. Bet the sun felt good. Thanks for the good wishes and please help to keep me grounded during the 12 week wait.

Katie

kate0b1 · « **Reply #1324 on:** February 26, 2015, 06:19:25 am »

@katie, right lol, my kitchen stuff is all over the dining room. I am trying to keep things i know i need out and around so I'm not searching. Thank god i hate to cook

or i would be frantic at the mess, on the up side the part that I'm done looks great and is super clean !.
My anxiety has weirdly been missing (I'm not sure if i should look for it or not), 14 days left and I'm not feeling anxious about the long wait at all (yet). I am so happy we are all sailing through this with a min of problems.
I think we got this

kate

nadewitt · « **Reply #1325 on:** February 26, 2015, 09:17:56 am »

This message is for 575 to 505, dmclain, Keanu2015, Rexray, Grodeestok:

I see that we all started taking Harvoni around the same time. I am on a 24 week program. Are any of you on that?

TTSP · « **Reply #1326 on:** February 26, 2015, 01:04:06 pm »

Day one of 12 weeks!

dmclain · « **Reply #1327 on:** February 26, 2015, 04:56:35 pm »

Day 13 of 12 weeks! How are you feeling?

Quote

TTSP · « **Reply #1328 on:** February 26, 2015, 05:04:08 pm »

I'm feeling confident.

kate0b1 · « **Reply #1329 on:** February 26, 2015, 06:02:50 pm »

@TTSP, i love that post

kate

wa7uib · « **Reply #1330 on:** February 26, 2015, 06:09:50 pm »

Here's to everybody on here that takes time to share their experiences with Harvoni. I have finished an 8 week regiment with it now. Today was my last one. My recent bloodwork was fantastic showing HCV undetectable ALT AST normal!!! I feel much better now with that nasty virus out of there. Although we will never undo the damage we have done to our liver there is no virus working on damaging it any further. And I must not leave out the one who is the best physician of all time, and who got me through all of this. Praise be to God.

TTSP · « **Reply #1331 on:** February 26, 2015, 06:13:25 pm »

Thanks@kate

TTSP · « **Reply #1332 on:** February 26, 2015, 06:14:36 pm »

@wa7uibCongratulations!

Keanu2015 · « **Reply #1333 on:** February 26, 2015, 06:19:42 pm »

Hi everyone!

Congrats wa7uib! and so right about God. I know I need him too. Hi Nadewit, I'm not but I"ll be with you for a while!

7 days! ....11 weeks left!

Beat it down friends! Best wishes to everyone!

Keanu2015 · « **Reply #1334 on:** February 26, 2015, 06:20:28 pm »

Hi TTSP,

Good luck to you!

SunIsOut · « **Reply #1335 on:** February 26, 2015, 07:08:56 pm »

Day 3 no headaches. Little tired still no side effects to speak of as I was tired before. I read a lot on sugar and seems that the label does not tell the whole story. So I have been taking organic Stoneyfield yogurt and the 16 grams of sugar it gets divided by some glucose (used by our bodies cells), fructose (liver has to get rid of it not so good) and hybrid. For yogurt most of the sugar is natural from the milk and the berries if added.

Since the labels do not break the sugar into types I am now resigned to just make good choices where fruits are glucose oriented, natural juices too! I am not diabetic so I do not have blood sugar to worry about.

wa7uib, Our liver is the only organ that regenerates. A partial liver transplant will grow to normal size quickly. Ours will repair but eating healthy and wise life choices are still prevalent for us. No corn syrup, fructose et cetera as I have really learned how damaging that can be in my own personal research.

This is going great!

Mugwump · « **Reply #1336 on:** February 26, 2015, 07:33:14 pm »

Quote from: dmclain on February 25, 2015, 04:59:33 pm

Hi everyone! Katie all I know is my viral count is 7 million the other info you guys talk about I will have to ask my doctor about I'm surprised it's not in my on line Beaumont chart? I have low energy you guys!? And my joint problems are back!? Lower back sacral area the worst? Anyone else is this normal and it the other info that I don't have important? Oh and please all of you finishing Don't Krave Us! We need to hear about life after Harvoni!!!

It is a common problem with HCV infection! Your immune system can be adversely effected by the disease. Long term infection that causes slow liver damage is well known to cause secondary auto-immune responses. These responses can include the early onset of immune caused arthritis in those who are prone, hyper-thyroid (by your immune system attacking the thyroid gland itself in my case). Some individuals do not experience auto-immune diseases others are more prone.

Here is hoping that freeing the liver from HCV will normalize immune responses as they have caused me trouble.

I can tell you that after 12 weeks of Harvoni treatment the swelling, lack of flexibility and pain in my phalanges of my hands has backed off and the joint pain that stopped me from performing music is relieved to the extent that I will be performing in public again very soon.

Best wishes from a fellow fighter. Kick the disease and do not be afraid of it you can do it!

Eric

TTSP · « **Reply #1337 on:** February 26, 2015, 07:57:13 pm »

@Keanu2015 Thank you.

apache · « **Reply #1338 on:** February 26, 2015, 08:09:35 pm »

Quote

Long term infection that causes slow liver damage is well known to cause secondary auto-immune responses. These responses can include the early onset of immune caused arthritis in those who are prone, hyper-thyroid (by your immune system attacking the thyroid gland itself in my case). Some individuals do not experience auto-immune diseases others are more prone.

Based on the anecdotal stories from this and other threads, I've mentioned to a few folks that people being treated with Harvoni have experienced a reduction in arthritis-like pains. I've been met with polite, but skeptical responses. I'd love to point them at a research paper which supports this phenomenon. Do you know of any?

Thanks in advance.

SunIsOut · « **Reply #1339 on:** February 26, 2015, 08:57:36 pm »

On the subject of inflammatory symptoms I too was getting arthritis in my hands and it was very painful in my knuckles. Also when I climbed steps I would get a sharp pain in my knee. The worst of it every time I played golf I would get golfers elbow.

I started taking Serrapeptase about 9 months ago. This enzyme has done wonders for me. I started taking it for the inflammatory pain that I would be able to tell if if made a difference and some other benefits that I would not be able to measure.

I could monitor;

-Joint and Knee pain

I cannot monitor but am hopeful that it is also aiding;

- scar tissue, arteries.

I told my hematologist doctors that I would give up the herbs but I had to keep the serrapeptase as I can tell what it does for me and the L-Theanine (amino acid from green tea).

As always do your own research and I have tried and passed on many things like Colloidal Silver and other homeopathic s but these two are staying with me.

A couple of articles here. I use Dr.s Best from Amazon.

http://www.globalhealingcenter.com/natural-health/health-benefits-of-serrapeptase/

http://serrapeptase.info/

It does not work overnight but you will notice after a few weeks an improvement and for me no pain at all today. I did my 3 day golf outing this past October and it was the first time I could finish the event without severe pain in my tendon.

Good luck.

Katie · « **Reply #1340 on:** February 26, 2015, 10:58:01 pm »

Thanks Sun Is Out! I registered on the site and will check it out.

Took my 84th pill last night and am going in for my blood test tomorrow. I got my painting finished today, but have more work to do before I am done. Will soon have my house in order and then will be out in the garden. (If our spring weather holds)

I hate to rub it in, but my daffodils have buds on them and all of my perennials are up, my berry bushes have buds as does my lilacs. We will be in big trouble if we get a hard freeze, so now I am hoping the mild temps remain constant. So strange for February in Alaska!

Welcome to all the newbies and thanks for the comments today. Feel well, be well and keep moving forward, my fellow warriors!

Katie

Mugwump · « **Reply #1341 on:** February 27, 2015, 01:09:31 am »

Quote from: apache on February 26, 2015, 08:09:35 pm

Based on the anecdotal stories from this and other threads, I've mentioned to a few folks that people being treated with Harvoni have experienced a reduction in arthritis-like pains. I've been met with polite, but skeptical responses. I'd love to point them at a research paper which supports this phenomenon. Do you know of any?

Thanks in advance.

http://www.ncbi.nlm.nih.gov/pubmed/8745593?dopt=Abstract
This would strongly indicate that eradication of the virus will in some individuals normalize anti-LKM1 antibodies and at least slow down the resulting inflammatory reactions in the tissues that are effected by auto immune reactions.

Because Harvoni treatment is so new I do not think that studies regarding relief from the known auto immune effects of HCV have yet to be undertaken.

Hopefully this will turn out to be what happens and individuals who are prone to auto immune disorders will find some relief once cleared of the virus.

I was looking for a study done on Vietnam vets in Australia. It originally put me on to the autoimmune problems I experienced with my thyroid. I discussed this possibility over 10 years ago with my GI who is also a top infectious disease specialist. He agreed that indeed auto immune problems that many experience with HCV might be relieved by ridding the individual of the virus.

I was originally diagnosed in 1988 with autoimmune Graves but it was non specific so I did quite a bit of research in the mid 90's about this and found papers from Australia. Here in the US most point to autoimmune arthritis and some rare cases of dangerous autoimmune hepatitis. http://www.ncbi.nlm.nih.gov/pubmed/9062950 Unfortunately many who suffer from secondary effects from HCV are misdiagnosed and many individuals are only diagnosed after liver damage is already underway.

Now that there is good treatment for the disease hopefully testing will become less stigmatized and the disease will be eradicated from history.

The doctor from Australia had a high concentration of cases directly related to blood transfusions and drug use during the Vietnam war which led to some speculation that the virus only became prevalent during that era, specifically genotype 1a became prevalent during that time period. He also had several individuals with non specific elevated thyroid hormone levels like I had until I had my thyroid treated with radiation and went on replacement hormones.

Fortunately autoimmune problems seem to be a problem only in a minority of cases >20% but the statistics seem worth more study as more people are freed from HCV genotype one a.

I know that having a robust immune system has saved my life but perhaps this is part of problem. Having an immune system that will fight genotype 1a over a long period of time might have brought on early arthritis and Graves disease in my late 30s. Graves disease is an immune disorder normally associated with individuals over 50 years of age and is more prevalent in women than men.

Perhaps some individuals who have had auto immune disorders should be monitored for changes in their immune systems post treatment, who knows perhaps little changes to how the immune system works can shed some light on how to effectively treat difficult diseases like arthritis even in individuals who do not have HCV messing with their immunity.

Eric

Karen1124 · « **Reply #1342 on:** February 27, 2015, 10:21:43 am »

Hello Sun is out,
I was taking serrapeptase prior to Harvoni and it is amazing in my opinion! Also doing castor oil packs 3 or 4 days a week! My doctor said during treatment I should take just my multivitamin! I really miss them both!! Are you taking serrapeptase during treatment?from everything I've read on this forum all of our doctors are very different my doc is very bossy. lol!! at first I didn't like in but everything you've told me to do has worked......Karen

apache · « **Reply #1343 on:** February 27, 2015, 10:47:33 am »

Hi Mugwump,

Thanks for the PubMed pointers and other info!
In particular, the first PubMed paper you referred to was quite interesting:

Quote

http://www.ncbi.nlm.nih.gov/pubmed/8745593?dopt=Abstract
Pathol Biol (Paris). 1995 Oct;43(:709-15.
[Extrahepatic manifestations related to hepatitis C virus].
[Article in French]
Opolon P1, Lunel F.
Author information
Abstract

The hepatitis C virus infects mononuclear cells and, like other viruses, can be responsible for immune disorders. The immune abnormalities described in the course of hepatitis C consist of nonspecific immunological disorders (cryoglobulinaemia, autoimmune disorders, generally associated with the presence of organ-specific or nonspecific autoantibodies). The association between mixed cryoglobulinaemia and hepatitis C has been clearly established, as 50% of patients with essential cryoglobulinaemia suffer from hepatitis C and 50% of patients with hepatitis C suffer from cryoglobulinaemia.

And looking up cryoglobulinanemia yields the connection to arthritis:

Quote

http://www.nlm.nih.gov/medlineplus/ency/article/000540.htm

Cryoglobulinemia is the presence of abnormal proteins in the blood. These proteins thicken in cold temperatures.
Causes

Cryoglobulins are antibodies. It is not yet known why they become solid or gel-like at low temperatures. When this occurs, these antibodies can block blood vessels. This may lead to problems ranging from skin rashes to kidney failure.

Cryoglobulinemia is part of a group of diseases that cause damage and inflammation of the blood vessels throughout the body (vasculitis). There are three main types of the disorder. They are grouped based on the type of antibody that is produced:

Cryoglobulinemia type I
Cryoglobulinemia type II
Cryoglobulinemia type III

Types II and III are also referred to as mixed cryoglobulinemia.

Type I cryoglobulinemia is most often related to cancer of the blood or immune systems.

Types II and III are most often found in people who have a chronic (long-lasting) inflammatory condition, such as an autoimmune disease or hepatitis C. Most people with mixed cryoglobulinemia have a chronic hepatitis C infection.

Other conditions that may be related to cryoglobulinemia include:

Leukemia
Multiple myeloma
Mycoplasma pneumonia
Primary macroglobulinemia
Rheumatoid arthritis
Systemic lupus erythematosus

Symptoms

Symptoms will vary depending on the type of disorder you have and the organs that are involved. Symptoms may include:

Breathing problems
Fatigue
Glomerulonephritis
Joint pain
Muscle pain
Purpura
Raynaud's phenomenon
Skin death
Skin ulcers

Exams and Tests

The doctor will do a physical exam.You will be checked for signs of liver and spleen swelling.

Tests for cryoglobulinemia include:

Complete blood count (CBC)
Complement assay -- numbers will be low
Cryoglobulin test -- may show presence of cryoglobulins
Liver function tests -- may be high
Rheumatoid factor -- positive in types II and III
Skin biopsy
Urinalysis -- may show blood in the urine if the kidneys are affected

Other tests may include:

Angiogram
Chest x-ray
ESR
Hepatitis C test
Nerve conduction tests, if the person has weakness in the arms or legs
Protein electrophoresis - blood

Treatment

Mild or moderate forms of cryoglobulinemia can often be treated by taking steps to deal with the underlying cause.

Mild cases can be treated by avoiding cold temperatures.
Standard hepatitis C treatments usually work for patients who have hepetitis C and mild or moderate disease. The condition can return when treatment stops.

Severe cryoglobulinemia involves vital organs or large areas of skin. It is treated with corticosteroids and other medicines that calm the immune system.

Treatment may also involve plasmapheresis. In this procedure, blood plasma is taken out of blood circulation. It is replaced by fluid, protein, or donated plasma.

So it looks like there is a good scientific argument... for supporting the anecdotal evidence we've seen, re: curing Hep C (via Harvoni or other methods) could very well have a favorable outcome with arthritis symptoms as well. Nice! Killing two birds with one stone

CHepCFree · « **Reply #1344 on:** February 27, 2015, 10:57:17 am »

Four more days to go on the 12 week program. I'm non-detectable and hope for SVR in another 12. Have experienced constipation for a good portion of the treatment but am happy to say that last 4 weeks have been good. I also have had ringing in the ears (tinnitus) since the first week. I've been checked by an ENT and there is no damage so I'm hoping once I finish treatment, the ringing will subside. Just a reminder, as a courtesy to our fellow heppers, to report your side effects to Gilead and/or the FDA. I have not seen any updates from them on this drug and I would think with so many people now on the drug and many are weeks into the treatment and even have finished that we would see updated information. Has anybody seen any updates? I did hear from my naturopath to not eat grapefruit during treatment since grapefruit changes how your liver processes food and meds. Just an FYI.
Best to All!
Cathy

Karen1124 · « **Reply #1345 on:** February 27, 2015, 11:37:44 am »

Hi chepcfree,
Thanks for the info on grapefruit that is one of my low sugar fruits!
I'll stick with my blueberry and strawberries! Good luck to you! God bless us all!......Karen

SunIsOut · « **Reply #1346 on:** February 27, 2015, 12:41:31 pm »

Quote from: Karen1124 on February 27, 2015, 10:21:43 am

Hello Sun is out,
I was taking serrapeptase prior to Harvoni and it is amazing in my opinion! Also doing castor oil packs 3 or 4 days a week! My doctor said during treatment I should take just my multivitamin! I really miss them both!! Are you taking serrapeptase during treatment?from everything I've read on this forum all of our doctors are very different my doc is very bossy. lol!! at first I didn't like in but everything you've told me to do has worked......Karen

Hi Karen,
Yes, I am still taking Serrapeptase as it is an enzyme and L-theanine as it is an amino-acid and my doctors were okay with those plus the Vitamin B/D supplements. All herbs were put on hold. I use the 120,000 units for doctors Best and purchase from Amazon. This was a game changer for me. I am glad to hear from someone else that has had success too.

Katie · « **Reply #1347 on:** February 27, 2015, 01:01:10 pm »

Grapefruit may cause a problem with elimination of certain drugs, especially heart medications. This could cause the drug level to build up in your system and cause problems. Anyone taking blood thinners etc should avoid grapefruit. I don't believe Harvoni has an issue with it and hope not as I have been eating lots of them for breakfast throughout my treatment.

I found this site that has a drug checker on it where you can type in a medication and it will show what it interacts with. You click on the drug interaction checker in the first sentence. Harvoni is included and the list is extensive, mostly antacid and some antibiotics and many I am not familiar with. If you take any medication I would definitely check this resource out.

http://www.drugs.com/article/grapefruit-drug-interactions.html

Katie

Islandgirl · « **Reply #1348 on:** February 27, 2015, 01:55:08 pm »

Congrats on your last 4 days and being UND! I took my last pill on the 25th and hope we're all still UND and then SVR12! Remember your water! I slacked off and paid for it last night with extreme leg cramps so it was a bit of reminder that the Harvoni is still working in my body...

Sun is Out, I'm ordering some of the Serrapeptase today! Thanks to everyone for all the great info you've posted here! ....Islandgirl

Amj1951 · « **Reply #1349 on:** February 27, 2015, 04:08:09 pm »

Hello everyone!!!

I realized I have not posted in a while. I am rather disgusted today. We are supposed to be fly fishing but of course Dallas and the surrounding area has got snow and ice coming later and in the morning .. so they say.. but the tournament was canceled for this week. I love seeing a good snow fall once a winter.. but now I am ready for the spring! I noticed some of my daffodils and tulips are starting to pop up.

I am so thrilled for everyone that is finishing up their treatments!!! I go for my 8 week blood work Monday but I don't think they will do a VL which is fine. I still feel perfectly normal. I have noticed my BP has been slightly elevated but I guess its fine as long as it goes back down once I am done with the Harvoni. I am sleeping great now but I still wired with energy during the day. No complaints!!

It is kind of weird looking at the last bottle (12 weeks for me.) knowing that's it. I wonder sometimes is it enough, but I don't let myself go there. Just think positive because in the end...... it is what it is and we'll deal with it.. but fingers crossed its truly gone for all of us : )

Now, I need to go read some more and catch up on how everyone is doing.
I hope you are all having a wonderful Friday!!

Meredith

kate0b1 · « **Reply #1350 on:** February 27, 2015, 05:43:04 pm »

@katie and Meredith, no bragging about flowers, it's poor form lol, I'm so ready for spring

. Does anyone have any good ideas/tips about indigestion? The last two days I've been crazy with it, I can't even remember the last time I really had it, but I'm not crazy about it! Kate

Alfredo · « **Reply #1351 on:** February 27, 2015, 06:22:14 pm »

Hello to all, today is one week for me and dealing with lots of energy and not sleeping well. I will adjust my med and see how that works out. I am trying to avoid any fatigue during working hrs. Has anyone here have lots of energy at the start then crashed?

Mugwump · « **Reply #1352 on:** February 27, 2015, 07:06:06 pm »

Quote from: Alfredo on February 27, 2015, 06:22:14 pm

Hello to all, today is one week for me and dealing with lots of energy and not sleeping well. I will adjust my med and see how that works out. I am trying to avoid any fatigue during working hrs. Has anyone here have lots of energy at the start then crashed?

It is common. This seems to depend greatly upon the level of liver damage at beginning of treatment. Those who have no cirrhosis do not seem to be as heavily effected by treatment. I crashed at about 6 weeks of treatment and but I have stage 4 cirrhosis and expected that my level of liver function would make me more prone to fatigue until as my liver healed. Close to the end of week ten my level of energy returned to a more normal level.

It is really important to eat normally and try to eat less quantities things that are harder on your digestion.

I also suspect that what can happen because you will be needing more fluids to deal with the increase in renal functions associated with treatment that could cause a slight electrolyte imbalance in some people. This could explain the muscle aches and headaches some experience during treatment.

For me if I did not drink enough fluids during the first phase of the treatment then I very quickly became dehydrated especially at night. During the first two to three weeks I was up going to the bathroom every two hours, so yes it is easy to have trouble sleeping on this med!

Quote from: kate0b1 on February 27, 2015, 05:43:04 pm

no bragging about flowers, it's poor form lol, I'm so ready for spring . Does anyone have any good ideas/tips about indigestion? The last two days I've been crazy with it, I can't even remember the last time I really had it, but I'm not crazy about it! Kate

SOUPS preferably that don't contain too much salts and sugars, try cutting back on cheeses and heavy meats. If you do have sandwiches with meats then try pate instead of coarse sliced meats. Canned salmon is good so is egg salad.
If you like it then good old pea soup is fantastic, make sure to cut down on raw onion and use veggies like spinach in sandwiches and even as a base on the plate for main dishes. Pate can easily be created from roast beef and helps your stomach to deal with breaking down the proteins.

As far as bragging rights go we have the Japanese Cherry trees in bloom early this year and I already had to tune up the lawn mower, sharpen it because my wife cuts the grass way too low and hits rocks all the time LOL But I have to do this usually in late March not in February. On the east coast of the Island there are fry coming out of the gravel one month early and there is ocean beach fishing for searun Cutthroat trout starting up so before I go back to work next month I will be casting minnow imitations at the creek and river mouths this year. I really wanted to shovel snow but I guess I am not as lucky as some are in the States. No igloo building this year DRAT!

Moregrits · « **Reply #1353 on:** February 27, 2015, 07:15:32 pm »

I am 3 weeks into Harvoni, and yes, the first few days I was like the Energizer bunny. I can't say I crashed, but just wore myself out. I have read many side effect complaints that sound like the same list of troubles to all my friends in the 60 year old group, give or take a couple of years. Joint pain, sinus congestion, insomnia, fatigue and headache come and go for many without hep C and treatment. Glad to say that I am not having problems I correlate with Harvoni. Good luck!

Katie · « **Reply #1354 on:** February 27, 2015, 07:41:56 pm »

Hey Moregrits, I refuse to believe that as you get older you should expect to feel that way if you take care of yourself. I had all of those listed complaints because of Hep C. Serious fatigue and haven't slept well in a decade where I would sleep maybe 2 or 3 nights a week because I was so exhausted, and woke up feeling horrible. With Harvoni, ALL of these disappeared for me...other than my joint and back issues, which are due to injuries. I also had mental confusion and poor skin quality which are both corrected now. I am very fortunate to be able to say I am very healthy other than Hep C, so I am looking froward to a healthy energetic retirement and I am pushing 68. (I have no idea how that happened!)

I finished up my 12 weeks Wednesday evening and went in for my blood test today. I'll be holding my breath hoping I have cleared this alien monster and then the 12 week wait will begin. That will be rough on me so I'll be out in my garden.

Hope all of you have a minimum side effects, get as much exercise as possible and drink your water. We are all so fortunate to have this breakthrough on this treatment and I am counting my blessings! Thanks for being here giving support to each other. It means a lot!

Katie

readynow · « **Reply #1355 on:** February 27, 2015, 07:56:03 pm »

Hi: Yeah, it feels odd not having a pill to take at the same time every day. That feeling of insecurity started to fade away after a few days for me.

Katie · « **Reply #1356 on:** February 27, 2015, 08:09:54 pm »

Readynow...Thanks for saying that. It's nice to know you aren't alone. HA! I am nervous about the virus coming back but also, I don't want to go back feeling so miserable since I have had 83 days of deep sleep and ridding of all the horrible effects Hep C gave me. I have to admit, I had week 9 & 10 where the fatigue returned, in spite of sleeping and I was all gloom and doom. Then I woke up one morning and felt great again. I've never been depressed but that was probably what it feels like. I was really worried the virus had returned with force but I think you have cycles of symptoms as your liver starts filtering out the toxins. I had other things come and go too, but they were very minor things.

I have saved the 3 Harvoni bottles and have decided to make a mobile out of them to hang in reminder of how fortunate I am to have the opportunity to have this drug. I need to think of some other items to add to it, so if any of you have any ideas, please share! Since each container represents over $30,000, I just couldn't throw them out. Ha! Thought you all would get a kick out of that.

Katie

MEG · « **Reply #1357 on:** February 27, 2015, 08:55:11 pm »

Thanks so much everyone for sharing so much here today.

Katie--I'm so happy for you. We will be here to keep you company. How wonderful that you made a mobile. I kept my second bottle and I'm no inspired to think of something to make with them. A charm bracelet? ;-)

Sun---thanks for the heads up on serrapeptase. I don't have arthritis but my poor doggie of 10 years has severe hip dysplasia and arthritis. He's otherwise so healthy. I try different things every several months to try to make him as comfortable as possible. He's been through soooooo much with me.

Wishing everyone a peaceful evening with Harvoni on the prowl for the ever sneaky hcv. I think the latter has found its match!

Islandgirl · « **Reply #1358 on:** February 27, 2015, 09:02:56 pm »

Hey Katie.... I couldn't throw my bottles away either, can't say exactly why, but here they sit - a symbol of so many things. Hope, fear, joy and excitement, panic and anxiety. But mostly hope.

I don't get my next labs until 3/25 (see my doc on 4/2 for results - then next labs on 9/25, hoping to be SVR12. Feeling a bit depressed for some one reason, probably just the "not really knowing". I'm still having some sides, but drinking my water and hoping I'll find myself feeling better and better as time passes. Maybe I'll perk up and think of some things to suggest for that mobile you mentioned

Wishing us all the best, hugs ....Islandgirl

Ruthie · « **Reply #1359 on:** February 27, 2015, 09:42:59 pm »

I haven't been on in a while, so need to update.

The sores in my throat and tongue are much better. A friend is an acupuncturist. She told me some acupressure points to use to alleviate all my side effects.

I feel that my mood has been changing a lot lately. I talked to my pharmacy and it's a known side effect of the Sovaldi. I'm bipolar, so I'm predisposed to mood problems. It does piss me off that Gilead didn't disclose it as a known side effect of Harvoni.

I have Flu b now. Obviously, the flu shot didn't work on the b strain either. I'm on tamiflu. I cleared it with the pharmacy first. If anyone else needs to take tamiflu, we can on Harvoni.

I saw my psychiatrist today. She was amazed-she was grinning ear-to-ear that my skin tone is better than she's ever seen it! I'm believing that means the Harvoni is killing off them suckers!! Woo-Hoo!!!! She's also happy I have this forum

Katie · « **Reply #1360 on:** February 27, 2015, 10:01:43 pm »

That's WONDERFUL news Ruthie. I was wondering how you were doing.

Glad you have some good knowledgeable support with your health care. My skin has improved so much too. I still have my wrinkles (darn) but the texture is SO much better. Better than in the past 15 years. I don't look sick anymore and it helps when you look in the mirror. Hope you kick the flu bug. That is miserable and maybe it had something to do with your mouth. Could be your immune system was stressed to begin with so things took hold. Feel better!!!!

One thing I just noticed today; I have gotten much more grey in the past couple months. I am fortunate as I am 68 and still have dark hair with some grey temples, (thanks to my paternal grandmother) but it has definitely spread. I am sure it is just a coincidence that this occurred during treatment. I don't mind as I finally have a change in color and who knows, maybe I'll put some lavender streaks in it in the future! Ha!

Island Girl: Yes I am anxious too without my Harvoni security blanket. I thought I would be glad to finish up the pills but it is a bit frightening. I am feeling good but still get tired out late afternoon and I am sure the meds are still in my system. We'll see what next week brings and of course I will get my results then too. (mail biting time)

Next Wed I have an appointment with a PT who does the cranial/sacrum adjustment and she looks at the whole person. I have heard nothing but good things about her and my insurance will cover it!!!! I am hoping it will help all of my joints and neuropathy in my legs and arms, as I am really hurting from all the painting and woodworking on my remodel. Too much ladder work but it had to be done.(and I still have more to do).

Hey Nicole...how are you doing? Miss you!

Katie

Ruthie · « **Reply #1361 on:** February 27, 2015, 10:19:47 pm »

Katie, you should TOTALLY put lavender streaks in your hair!

kate0b1 · « **Reply #1362 on:** February 28, 2015, 07:11:22 am »

@eric, since there is nothing blooming here we are still in soup mode lol, i do eat a lot of cheese though. maybe i could cut that back along with my coffee intake for another two weeks. i don't know where this came from but its rather annoying.
@meg and katie, i feel a little bad that i threw out my bottles, my charm braclet won't really work with just the last one. maybe ill look on pintrest to see what can be done with just one bottle lol. and i don't even care what color my hair is at this point i am just sooooo happy to have it still on my head lol.

kate

joe49 · « **Reply #1363 on:** February 28, 2015, 11:35:41 am »

I just completed my first month on Harvoni still have 5 months to go. After one month all my lab tests show significant improvement. My ALT and AST are normal for the first time in 20 years. However, my viral load came back as a "weak positive" and my doctor told me this is great news as the medication is working. After getting this result and not an exact number, I did some research. As I already expected, the "weak positive" is a qualifiable result - as opposed to a quantifiable result - and, in fact, could be a false positive.

I'd like to know if anyone else has been told they are "weak positive" and can shed some light on this result. Thanks

PS - My viral load prior to treatment was 1,900,000.

Karen1124 · « **Reply #1364 on:** February 28, 2015, 11:52:59 am »

Hey joe49,
Congrats on those numbers you are on your way to be cured!I go for my blood work on the 5th and my doctors appointment on the 11th of March and I just received my last bottle As I am on at 8 week treatment. I know that it is done something cuz I do feel better!......Karen Life is Good!!

Bob V · « **Reply #1365 on:** February 28, 2015, 01:33:13 pm »

I haven't been on here in a couple of weeks. First I'd like to say hi to all the new posters, you'll get some great support and info here. For me the treatment has had it's ups and downs but Harvoni is the best shot at a cure....so you gotta go with it.

Tomorrow will be dose 84 my last

good luck everyone.

Amj1951 · « **Reply #1366 on:** February 28, 2015, 05:26:25 pm »

Quote from: Katie on February 27, 2015, 08:09:54 pm

Readynow...Thanks for saying that. It's nice to know you aren't alone. HA! I am nervous about the virus coming back but also, I don't want to go back feeling so miserable since I have had 83 days of deep sleep and ridding of all the horrible effects Hep C gave me. I have to admit, I had week 9 & 10 where the fatigue returned, in spite of sleeping and I was all gloom and doom. Then I woke up one morning and felt great again. I've never been depressed but that was probably what it feels like. I was really worried the virus had returned with force but I think you have cycles of symptoms as your liver starts filtering out the toxins. I had other things come and go too, but they were very minor things.

I have saved the 3 Harvoni bottles and have decided to make a mobile out of them to hang in reminder of how fortunate I am to have the opportunity to have this drug. I need to think of some other items to add to it, so if any of you have any ideas, please share! Since each container represents over $30,000, I just couldn't throw them out. Ha! Thought you all would get a kick out of that.

Katie

Katie.. I am the same. I cant throw the bottles out. I love your idea of a mobile. I was thinking of wrapping color paper around them and using for tiny vases.

ERIC... Japanese Cherry trees. I bet those are beautiful!! We have some oaks, but that's about it... though they are lovely in their own way.... but they aren't cherry trees

Kate... Did you figure out the heartburn? Don't pregnant ladies get that? he he : ) Just kidding! Can you imagine having triplets at this point in your life!?! Shoot me dead!!

Being locked in from the snow/ice is making me nuts today.. though its rather entertaining watching my dog act crazy as she runs around in it. Earlier the ice was cracking as she walked and she would freeze and look down (Not the brightest apple on the tree but she's mine!! : )

I hope everyone is warm.
Meredith

Katie · « **Reply #1367 on:** February 28, 2015, 05:39:56 pm »

Hey Meredith, I love your idea about vases, but I decided I want the bottle in all it's ugly glory in plain sight.

I know you were teasing about pregnancy but just as a reminder to the younger crowds. I posted this earlier, but in case you missed it.

Glad to have you back Bob V. I was wondering about you. Good luck with your EOT! Exciting and nerve wracking at the same time. Nail biting time for me but I am feeling good. A slight dull ache every once in awhile on my right side, but the good news is, I am still sleeping well. YAY!

Katie
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
What is the most important information I should know about SOVALDI?
SOVALDI combination therapy with ribavirin or peginterferon alfa and ribavirin can cause birth defects or death of your unborn baby. If you or your sexual partner is pregnant or plans to become pregnant, do not take these medicines.

• You and your sexual partner must use 2 effective forms of birth control and should not become pregnant while being treated with SOVALDI combination therapy and for 6 months after your treatment is over. Talk to your doctor about forms of birth control.
• If you or your partner can become pregnant you must have a pregnancy test before starting treatment with SOVALDI combination therapy, every month while being treated, and for 6 months after your treatment ends.
• Tell your healthcare provider right away if a pregnancy occurs while taking or within 6 months after you stop taking SOVALDI combination therapy. You or your healthcare provider should contact the Ribavirin Pregnancy Registry. If you are also infected with HIV and taking medicines to treat your HIV infection, an Antiretroviral Pregnancy Registry is also available. For contact information, please see full Prescribing Information.

Katie · « **Reply #1368 on:** February 28, 2015, 05:43:22 pm »

FYI: I just watched the VICE Special report on cancer research on HBO and it is AMAZING. It will be on all this week at various times. Please watch it. They are saying this treatment (cure) could actually be available by 2016 and they've had remarkable success on human trial patients as we speak. I am SO excited! I LOVE Science and scientific research! Just wanted to let you know!

Amazing medical research is happening right now. There is also a study which looks very promising on MS...another horrible disease.

I just wanted to share this information in case you have someone dear that is suffering from cancer. I LOVE SCIENCE!

Stay well...

Katie

Bob V · « **Reply #1369 on:** February 28, 2015, 09:48:28 pm »

Thanks Katie.
My brother had some issues with his treatment, depression/anxiety, ended up in the hospital. Going into his last 2 weeks of treatment his VL was still 17. His doctors, he has several, were trying to get him another 12 weeks but insurance denied it. He's still waiting on his EOT labs results. Anyway this had me side tracked the last few weeks.

I hear you on the anxiety. I'll admit it finally started getting to me this week but "it is what it is" nothing we can do about it now

Amj1951 · « **Reply #1370 on:** March 01, 2015, 11:10:09 am »

Hi Katie.. and everyone : ) Yes, I was just teasing Kate, but I probably shouldn't have said it. I am sure this would NOT be the time to get pregnant.. though at my age I'd shoot myself : ) ha!

On the Harvoni bottles you'd think for what they cost they would have done better than a cheap plastic bottle. I was rather surprised the first time I saw it. Not sure what I was expecting, but that wasn't it.

BOB V - Congratulations on your last dose!! I hope you keep everyone posted as you go through the follow ups, etc.

It sounds like everyone is doing well and I am so glad.

I have felt some odd twinges on my right side today. I am wondering if its the rich alfredo sauce I made and ate for 2 days. I feel like my arteries have even hardened at bit just looking at it. It was good!! I think today will be some healthy veggies.

I have a new appreciation for everyone up north dealing with the snow. My yard looks like a big slushy mess!! Just warm enough to start melting it but not warm enough to get rid of it. I am over it and ready for spring and some sun shine!!

Meredith

concerned father · « **Reply #1371 on:** March 01, 2015, 08:09:46 pm »

My daughter will be starting her treatment in a few months. When should she think about re-infection from her tooth brush or razor?

MEG · « **Reply #1372 on:** March 01, 2015, 11:20:17 pm »

Katie, Thanks for the heads up on the HBO cancer program. I'm also happy to hear that you are still sleeping well.

LOL, ladies re: getting pregnant! Hahaha....immaculate conception for me. ;-)

I'm on day 3 of antibiotics and I'm feeling so much better. I as able to take a nice long walk with my dog and have a meaningful conversation with a dear long distance friend. I was essentially bed bound except for necessary errands and doctor appointments.

I think sometimes we(I'm talking about myself here) lean too extreme re: antibiotics. I waited for 4 months for this "cold" to go away, eschewing antibiotics. Suffering through profound fatigue, flu symptoms, sinus pain, etc., etc. But they are helping immensely this w/e. My spirit is also feeling so much better.

It never fails to amaze when I experience how the body and mind impact each other.

Here's to a restful nite for all. Thanks so much for being here and sharing so much of yourselves...

Katie · « **Reply #1373 on:** March 02, 2015, 12:04:30 am »

Meg, so glad to hear you are doing better. Take care, rest and be well.

Katie

Bob V · « **Reply #1374 on:** March 02, 2015, 12:30:41 am »

Meg
Glad you're feeling better. I went on a seven days of amoxicillin week two on Harvoni for a tooth infection.

Mugwump · « **Reply #1375 on:** March 02, 2015, 12:57:19 am »

Quote from: concerned father on March 01, 2015, 08:09:46 pm

My daughter will be starting her treatment in a few months. When should she think about re-infection from her tooth brush or razor?

Buy new gear and start using it as soon as the first VL results are in. The actual chances of re-infect can be greatly reduced if not eliminated on tooth brushes with mild hydrogen peroxide solution until she is undetected. Make sure that it is done in cold water fresh hp 3% for several minutes. Keep the solution sealed and out of sunlight until it is used and the solution is only good for a short time when exposed to the atmosphere. I have used food production sanitation solutions for years. People tend to overdo it with chlorine bleach and it can be dangerous if used with other chemicals in the wrong way to say the least.

Most pharmacies sell pure hydrogen peroxide in 10% solution so if you mix it 3 to 1 you have a good way of sanitizing tooth brushes between uses. Leave the solution wet on surfaces and let it dry without wiping. Obviously avoid things like over priced and over-hyped Oxyclean that will contain other chemicals that you definitely do not want on a tooth brush!

HCV viral encapsulation is broken down by exposure to too much free oxygen, that is why sharing towels is not recommended. But if the virus is exposed to the air in a dry environment it will lose encapsulation which is necessary for the virus to enter the liver. But exposure to active hydrogen peroxide breaks down the HCV membrane faster than waiting for the air to dry it enough for the membrane to break.

All that said the chances of accidental re-infection are very slight, so these are purely precautions and one can easily go overboard worrying about infecting others or re-infecting themselves.

Best Wishes
Eric

Keanu2015 · « **Reply #1376 on:** March 02, 2015, 01:16:18 pm »

Hi everyone!

Day 11 for me. I've been feeling better and better. Katie and Bob V- Congrats on your final doses! That's awesome! It sounds and feels to me like this is in fact truly a miracle drug! Meg I'm glad to hear that perhaps you can finally get rid of your "cold"! great news. Concerned father and mugwump, thanks for bringing this thought into focus. I never even realized that I could re-infect myself! I have always been careful hiding my razors and toothbrush from my kids or anyone else that may attempt their use but that just threw a hole new shocker into it! I would imagine that while we are on medicine it can be considered no more than simply part of the VL. However is it the strongest member of their army that snuck out, looking to sneak back in? Good thought. Time to change over to new stuff! Amj1951- For dinner yesterday I made us a killer batch of Barilla whole-grain spaghetti, with Amy's 92/8 hamburger and "Newmans Own" Sockerooni sauce! I had some bad heart burn last night but my liver didn't give me any pain like it did last time I made that 2 weeks ago. That right there tells me the Harvoni has already started changing the game for me in 10 days! Btw I know red meat is a no-no and so those times there are few and far between now. I'm a little tired but otherwise very well

Hope everyone is feeling great today! ttys!

BG42 · « **Reply #1377 on:** March 02, 2015, 01:49:30 pm »

Hi everyone!

I have been following and reading everyone's posts, (aka "lurking") but it's been a while since I've checked in.

I'm on Day 1 of Harvoni today. Technically I guess it is day 2, but I take my does at night at 9:00 pm so I only have had one dose.

Holy brain fog batman! I feel slow and tired! Nausea comes and goes but food and lots of water has helped!

I am hoping the fatigue goes away with time, but I am willing to put up with that for 8 weeks! Has it gotten better for some of you??

BG

chino1969 · « **Reply #1378 on:** March 02, 2015, 02:05:00 pm »

Quote from: art1951 on October 25, 2014, 01:43:09 pm

I am new to the forum and started taking Harvoni on October 17th. Is anyone else taking it and experiencing any side effects? I am getting daily headaches and fatigue when I first take the pill in the evening. The fatigue seems to be letting up during the day. I was experiencing nausea for the first few days but that seems to be better now.

I have 1b and my liver is f3 with a viral load of 4.7 million. AST 75, ALT 93

Thanks, Art

Art,
I started Harvoni on 2/23 and take it in the morning with breakfast. Minimal side effects week one, even less going on week 2. I drink about a gallon of water daily.

concerned father · « **Reply #1379 on:** March 02, 2015, 02:06:52 pm »

Thank you Eric.

Keanu2015 · « **Reply #1380 on:** March 02, 2015, 02:15:21 pm »

BG 42,

I'm just ahead of you. I'm in day 11. I had some diziness, slight headaches and sleepiness in the beginning of treatment. Day 4 I was feeling kinda sick. Since then I'm having some heart burn at times and I feel like I have some extra mucous on my lung walls but am not sick. It's hard to explain. Ultimately though I feel much better today than I did before I started. The pain in my liver (upper Right side) is almost non existent now. I get a little jolt here and there but it's very mild. Best of luck to you! Keep us posted.

MEG · « **Reply #1381 on:** March 02, 2015, 02:23:52 pm »

Thanks so much @Katie, @Bob, ya it took a couple of days after I saw my pcp because she wanted to assure with my hepatologist that doxycycline or amoxacillin were compatible with the Harvoni.

Interestingly, I felt so much better by last nite that I could not fall asleep until after 3am. I'm now experiencing what others here have re: insomnia/Harvoni. Tonight it's hydroxyzine(antihistamine/antianxiety med) if I'm still feeling peppy by 10pm.

Apart from Harvoni, have you noticed that even if you get the same number of hours, that going to bed earlier gives a more restful sleep? I feel it today.

Thanks to you @Keanu. That meal sounds wonderful. And I'm glad your liver liked it too ;-) Moderation is key. I eat lean red meat once every 2weeks-ish. Too expensive! Pasture raised/organic fed only.

Mugwamp and @concerned dad I also want to thank you for bringing up this topic. I just tested Undetectable 4 weeks into treatment and didn't think of changing my toothbrush and razor. I certainly did this morning.

Hoping everyone has a peaceful and healing day.

Katie · « **Reply #1382 on:** March 02, 2015, 02:27:19 pm »

Hi everyone! BG: Actually I had the Brain Fog and horrible fatigue for several years from Hep C. On my day 2 with Harvoni they basically disappeared and I also started sleeping and dreaming. I hadn't had a truly good night's sleep in close to a decade so I hope it reverses for you and your treatment will be smooth sailing. I know it varies from person to person.

Welcome Art and hope you do well too. Congratulations on your journey to stomp out this alien virus monster! I took my pill in the evening too so I wouldn't be eating or drinking anything that might diminish the effects of Harvoni and it worked well for me.

Be sure to keep hydrated to flush your system. That is very beneficial.

Good hearing from you Keanu. Hang in there. The time goes by quickly (like a flash actually) and my motto on eating was and is, everything in moderation and having a balanced diet. The only thing I eliminated was supplements as I worried about interactions.

I have been off Harvoni for 5 days now and feel good. I still wear down in the late afternoon, but I have still been in the completion stage of a major remodel and have been working hard and still surrounded with the chaos having your house upside down with clutter everywhere. I decided going through a remodel is worse than moving...much worse! I am finishing a small(thank goodness) oak floor today and then the rest of the baseboard and trim can be installed. YAY...the end is near!

I will get my EOT lab results at the end of this week so that will give an indication on how it went. Fingers crossed. All and all, I am confident that everything went as it should because of my lasting improvements (still sleeping too) and what is really interesting is my skin looks so much smoother (large pores are no longer visible) and glowing with tone variations disappearing! That indicates my liver is detoxifying and doing it's job! I have experienced acid reflux off treatment more than on treatment, so I am hoping that will diminish too.

That's my report. There is life after treatment and my mood is improving with less anxiety about not having my Harvoni security blanket.

Have a great day!

Katie

MEG · « **Reply #1383 on:** March 02, 2015, 02:32:59 pm »

Ya, Bg, it seems we all experience Harvoni a bit differently. Some people feel great within a few days and others have various side effects like the headaches, nausea, brain fog.

I had a pretty severe cold/sinus infection when I began and I knew the fatigue and muscle aches were not Harvoni. Dull headaches and nausea almost instantly relieved by drinking water were the main effects for the first 2-ish weeks.

Since then(I'm into my 6th week as of today), the headaches and nausea are gone, I have periods in which I feel total clarity and joy. It feels wonderful. They pass and my baseline hcv brain fog returns, but I view them as a sign of much more improvement to come.

I think eating a balanced diet and lots of fluids(coffee and caffeinated sodas don't count) is the best way for us to allow our bodies to heal and help the Harvoni do its job.

Best luck!

Katie · « **Reply #1384 on:** March 02, 2015, 02:52:41 pm »

Good Deal Meg! Glad you are feeling so much better and on the road to recovery in more ways than one.

I better get at it or I won't get anything done today so all of you keep spreading the love and positive energy as the support is so important.

Be good to yourselves!

Katie

MEG · « **Reply #1385 on:** March 02, 2015, 03:23:35 pm »

Thanks Kate! My goodness, I read your post above detailing what you're going to do with your remodel and I am so impressed. I knew you were remodeling but I didn't get the extent until this morning. You go girl!

I also have to go to the library as I'm beginning a Spanish class tonight. Typical procrastinator that I am did not get the necessary reading material yet. LOL.

concerned father · « **Reply #1386 on:** March 02, 2015, 03:51:22 pm »

Quote from: MEG on March 02, 2015, 02:23:52 pm

Thanks so much @Katie, @Bob, ya it took a couple of days after I saw my pcp because she wanted to assure with my hepatologist that doxycycline or amoxacillin were compatible with the Harvoni.

Interestingly, I felt so much better by last nite that I could not fall asleep until after 3am. I'm now experiencing what others here have re: insomnia/Harvoni. Tonight it's hydroxyzine(antihistamine/antianxiety med) if I'm still feeling peppy by 10pm.

Apart from Harvoni, have you noticed that even if you get the same number of hours, that going to bed earlier gives a more restful sleep? I feel it today.

Thanks to you @Keanu. That meal sounds wonderful. And I'm glad your liver liked it too ;-) Moderation is key. I eat lean red meat once every 2weeks-ish. Too expensive! Pasture raised/organic fed only.

Mugwamp and @concerned dad I also want to thank you for bringing up this topic. I just tested Undetectable 4 weeks into treatment and didn't think of changing my toothbrush and razor. I certainly did this morning.

Hoping everyone has a peaceful and healing day.

Meg, I'm happy that you are undetectable after 4 weeks, I hope my daughter will have the same results and will be free of this monster for ever.

hope4cure · « **Reply #1387 on:** March 02, 2015, 05:37:48 pm »

10 more days to go for my 8 week treatment. Feels like it's going bye real fast even with the fatigue. These last 3 days seem to be worst so far for me and I'm guessing it will continue until the end. It almost seems like with each new bottle of meds, the fatigue changes for me for the entire bottle. One bottle I seemed ok, but the next I would feel it more and now this last bottle, I really am experiencing the fatigue even more so. I'm not sure if each batch of pills can really be different from one another, but thinking back that does sure seem to be the case for me.

Karen1124 · « **Reply #1388 on:** March 02, 2015, 05:48:26 pm »

Congrats Meg!! Best wishes to you!!

Keanu2015 · « **Reply #1389 on:** March 02, 2015, 07:50:43 pm »

Hello friends!
Katie, nice hearing from you also! I'm glad to see you are doing great and getting close to finishing your project- that's terrific! Thanks for your always encouraging words. I totally agree with you on diet. Hope4cure, sorry you're experiencing so much fatigue. In 11 days I haven't experienced that but once. Just using this calendar year I'd have to say that my 10 other days so far while taking this drug are better than any other day I had in 2015. I am full of hope and optimism now and my pain is getting less and less with each passing day. Drink more water! it removed my headache a few times in the early going and it also boosts metabolism to burn more dreaded fats. I hope you'll start feeling better soon. I think you will as I am really starting to believe in this drug now. Meg, I'm glad you are UD! that's fantastic! and I agree about the right red meat, (if any is), being too expensive ..it really is! ...Good luck with Spanish class. Have a nice evening all!

BG42 · « **Reply #1390 on:** March 02, 2015, 08:18:36 pm »

Thanks everyone. This afternoon I felt much better. I actually didn't have any kind of side effects, and felt normal. I am going to take my 2nd Harvoni pill in about an hour, and then will go to bed soon after. This morning was weird because I woke up in the brain fog, so we will see what tomorrow will bring.

Quick question. I like drinking sleepy time tea at night sometimes. (From Celestial Seasonings). Is it ok to drink decaffinated herbal tea during treatment?

Keanu2015 · « **Reply #1391 on:** March 02, 2015, 08:26:25 pm »

Hi BG42,

Absolutely! as with everything else just do it in moderation. I drink decaf green tea (made with 3 pouches) with light almond milk mixed in for taste some times at night. So far I have been progressing well on these meds and have felt nothing negative in my body so I see no issues... Enjoy!

Keanu2015 · « **Reply #1392 on:** March 02, 2015, 08:34:34 pm »

BG42,

You got me! I just fired up my kettle. lol its been a couple of days since I made myself one

Katie · « **Reply #1393 on:** March 02, 2015, 08:46:39 pm »

Herbal tea is fine as long as you check the ingredients. Example: Smooth Move for constipation has Senna in it and it really isn't good for the liver and of course same with St. John's Wort. I enjoy a cinnamon tea with honey as I know there's nothing hiding there.

Now that I am off Harvoni, my choices will increase, but I was just really wary of mixed supplements of any kind since many haven't been tested for interactions.

Got my floor done!!!! It will need another coat but will do that after the baseboard installation in case someone drops a hammer! HA! I use an oil floor finish which is nice because you can actually touch it up. I aired out the house good , but it is strong stuff. That isn't good for the liver either so I did some trim sanding out in the shop and will finish them tomorrow. My work is never done.

Hope you don't mind the "shop talk" but it is nice to have someone to share what I am doing. Haven't had much outside contact as I have been so busy with it, and they all think I'm crazy and too particular anyway! HA! I like doing it and it keeps me occupied.

Until later.

Katie

kate0b1 · « **Reply #1394 on:** March 03, 2015, 06:17:54 am »

@katie, shop talk away

, i am on the home stretch of cabinets lol, the only problem now is i don't think the wall color looks as nice with the new cabinets so now i guess i need to repaint the walls

. Thank goodness i feel well enough to do all of the above ! 10 days left and except for the indigestion i am not having any problems, i have been sleeping like rock but that also may be from working and painting !

kate

Islandgirl · « **Reply #1395 on:** March 03, 2015, 09:47:20 am »

Katie and Kate! I can't tell you guys how impressed I am with your remodeling ability!!!!!! Are you self taught - just got in there and gave it a try (the first time, anyway)? Or, just how did you learn to do all these things and have the courage to do them?

You guys are awesome!!! Hugs, ....Islandgirl

And, Katie, you even have a "shop" to work in......... WOW! I wanna be like you

Katie · « **Reply #1396 on:** March 03, 2015, 12:25:46 pm »

Good Morning Kate: That's how it goes...you update one area and then see what else is in need. One thing leads to another. I've been updating one room at a time but took on both bedrooms at once and it got a bit out of control. You go girl and glad you're doing well...10 days...isn't it amazing!

I had some acid reflux towards the end and for the first five days off treatment, but yesterday was pretty much fine. I am hoping it goes away.

Hi Island Girl! How are you feeling off Harvoni? I am doing really good. Clear headed, no brain fog and sleeping so feeling confident. I'll get my EOT test this Friday so have my fingers crossed.

I am a Jack of All Trades. Field research often means being handy with tools and mechanical. If something breaks, you can't run to town to replace it. I am a great one for How To Do books and now U-tube videos, but at this point understand most things. I designed and built my house, hiring out the framing but actually did most of the wiring and plumbing and finish work myself. Lived here for 10 years without power (Generator and put in a 12 V light and water pump.) and finally got on the grid in 2002. Pure Joy! I did look into alternative off grid power, but it was way to expensive for me at that time. There is much more to that story, but I think you get my drift.

Nothing you want to fix requires a PHD! Just the desire to do it, so on things I haven't attempted before, I study what I want to accomplish, make sure I have everything I need, ask questions from knowledgeable people as needed and dive into it. Always figured you can do anything if you want it bad enough, plus, I can't afford to hire professionals, but I like nice things. It's a great learning experience, even when you have failures, which I have had. We have rough framing carpenters that say they are finish carpenters and I have had bad experiences. Half the time I have to redo what they do, as I am fussy and want it my way. The really good ones are always busy (and very expensive) working on the high priced homes. So, I do it myself!

Another day. My floor looks awesome and today I have to work on finishing the trim for the closet, and the guys can come back. WHEW...With my bad knee I can't kneel down for baseboards anymore. $:-\$

Have a wonderful day!

Katie

Teddi · « **Reply #1397 on:** March 03, 2015, 12:39:23 pm »

Started Harvoni on Dec 26th on the 12 week plan, so I have about 3 weeks to go, 4 week results showed <15 on the VC down from 4 million but still detectable, I had the normal side effects, headache and fatigue for a couple of weeks and they pretty much went away. For the last week or so I have really bad joint pain. I've had joint pain before but not like this. I know that the joint pain is a symptom of HC, i would think if the virus is getting knock out of me the pain would be subsiding not getting worse. Is this perhaps a side effect of the meds. Once the HC is gone will my joints start to repair themselves or am I stuck with this pain? I would appreciate any help on this subject, thanks

teddi

nadewitt · « **Reply #1398 on:** March 03, 2015, 03:26:36 pm »

I got the results from my 2 week labs and was surprised that my viral load was not tested. Is this usual?

MEG · « **Reply #1399 on:** March 03, 2015, 03:38:30 pm »

@Kate and Katie! I want to join the chorus with @Islandgirl and scream out how impressive you are with your skills. And yes, shoptalk away, Katie. Building your own home living off the grid for all that time? Doing your own electricity and plumbing? That's incredible. In Alaska, no less. Bless you. I love working with my hands(gardening, knitting) but my mind just can't wrap itself around design concepts. I'd love to see pix of both of your work some day...

Forums Index

Welcome

Author Topic: Harvoni Side effects (Read 2092900 times)