anyones feel worse after, HARVONI ???

[WalkingEagle]

GM, and the best, too you all
I have finished a 12 week, program on  6/7/15, of (HARCONI) only,, and I feel a lot worse than when, I started,,
less energy, less apatite less ambulation, hurt more all over, sleep more, depressed, grouchy, and just plain cranky.............:  (,,,, my balance is even off,
is that a normal ? if it is, then I can try and adjust, and bite my tong a little more, as my mom always said there is something good,. in every thing, we may have to look a little harder,dig a little a  dipper, .and look more,
I feel like I'm at my  ropes end, (they say tie a knot in it and hang on) but folks it seems to be bad and don't like it at all
I know we are all the same but different, and all different but the same  but I seem to be the
_~"A''~_'s...........,lately and don't even like myself, I see a HEP C, RN on the 14th, and my Dr,on the 24th,
and maybe they, can straighten me some, thanx  folks so so much..............walkingeagle

[Chepcfree]

I am 14 months post treatment and STILL feel horrible.   I have a constant headache, tinnitus, neuropathy, constant headache, joint pain, dizziness and chronic fatigue, NONE of which I had pre-treatment.   I wish I had never taken it.  I also have FDA reports that show there are hundred of people experiencing problems with this drug.  You can email me at ***@**** and I will send it to you.  

[keepingOnkeepingOn]

What will help is if you get some body work done. seriously. get some physical therapy.

[Livelife777]

Just an add on to Vitamin K.   Vitamins A, D, E, and K are not water soluable.
Always proceed with caution as these supplements can create toxicity.
.....Kim

[Livelife777]

Randy.   I have wondered where you've been and so sorry that post treatment issues are occurring. As you mentioned, it may not be the Harvoni but still not certain.  I believe you are in Fla, and if so you may want to go and get checked out at Mayo in Jax.  When you have unresolved issues post Tx you really need to find out if it's the meds or something else.
They are experts in the treatment of Liver Disease and if anyone can help you they would at least give you answers.  As said on this forum before, we tend to think all of our woes are treatment related and sometimes overlook the true source.  
To Walking Eagle also, you may also dig deeper just to find answers.  I'm so very sorry you both are upside down with lasting effects.  Uncertainty is the most difficult part of disease, but once you know what your truly facing it all becomes easier.
Take care
.......Kim

[Rbeth]

Hi WE :)

First please, to you, to all, forgive my absence.
Which perhaps will be a partial answer to your Q....

My EOT was almost 5 mos ago. About 3 weeks after I finished tx'g I seemed to encounter some ill health, which continues to today. Extreme weakness, nausea, muscle/nerve pain, fatigue, 12 lb weight loss etc. I've had a zillion tests and no concrete answers. I don't necessarily think it's Tx related, though one of my docs thinks it may be. I think something has just kicked off in tandem. I am elated about my SVR and it's just a difficult season of life.
Will post again, I just didn't want you to feel alone :-)
Good suggestions here, do get some labs done(mine went a bit whacky) and by all means... Congrats! And keep the faith!

Many blessings,
Randy

[48weeks]

I had little or no symptoms with Harvoni, especially when compared to all the other brutal treatments. My EOT was 3/3/2015, and I reached SVR 6/3. After Harvoni I felt even better than I did while I was on it. I'm sorry to hear a few are having a rough go of it. I have been off of Harvoni a total of 4 months, and I feel great.  Best of luck to everyone for SVR and beyond.

[hrsepwrguy]

Follow the link scroll down to where you see communities, it says Beyond SVR, you can join the community from there, you have to join to post.

http://www.medhelp.org/personal_pages/user/2059648

[Stronglady14]

I would gladly go to the other site beyond svr but no matter what I do I cannot post there. That's why I asked here. It was the only choice I had.

[printze]

Agree I would still like to hear how others are feeling after harvoni treatment.

[jules2551]

Such BS here.  Can we stick to the original post from WE? I will prob get kicked off but I don't care.  This topic went all over the place

[SurfsideGal]

You didn't say ask a new question. You told Evan to go to another forum. Are you a moderator here?

[dontworry_behappy1]

The question ask was by WalkingEagle.  This thread is about thier question.  When the topic starts going all over the place its call "Hijacking" thier thread.  
Sorry WalkingEagle.   This thread is about WalkingEagle's question about Harvoni.  The best place for this discussion on platelets is asking a new question.  If everything is discussed on one thread....there is no reason to ask questions.   And makes it difficult to have to weed through all the chit chat to get to the answer to the question.  That's why there is a Hepatitis Social forum.  So you can talk to others without taking away from the original question.  The original question is the topic of discussion.  

[SurfsideGal]

BTW, platelets and how they relate to liver disease is very appropriate for this forum. In fact Beyond SVR would be much less so, I believe.

[SurfsideGal]

Evan, I've done a tiny bit of research since I posted to you. I would love to learn more about this. Thanks.

[dontworry_behappy1]

I found what you stated (about platelets) interesting.  Could you please continue this topic on the following forum.  

http://www.medhelp.org/forums/Beyond-SVR---improving-liver-heath/show/2066

[SurfsideGal]

Let me explain more fully what I mean regarding food. I know there are some foods that may lower platelets, something cirrhotic patients do not want to do. But my understanding is that there is no food to raise the number so eliminating the things that may lower the platelets might be helpful but not the other way around. Are there any references from well-known reliable sources?

[SurfsideGal]

Evan, I am certainly no expert at all on platelet levels and only know what my hep doc taught me when I was concerned about mine especially during treatment with interferon. He told me that some of the things you mention do not lower platelets levels. They affect the platelets by making them more slippery and therefore the blood does not clot as easily. It is also my understanding that what you eat does not affect the platelet levels either. Respectfully, can you please provide references to the things you are saying. I am interested.

[patra_]

Hey, there.  How are you feeling now that a week has passed?  Are things getting any better?

Also, did you call your Dr incase some of you blood levels are out of whack and need to be treated?

Blessings, Pat

[Evan_the_elder1]

There are many foods that negatively affect platelet levels. There are few to none that actively raise platelets. You must avoid dropping them.  Basically, anything with vitamin E and/or Omega 3 fatty acids are bad news. Keep that as low as you can, You will still get some but for an antioxidant take vitamin C instead. Also, you must avoid certain vegetable oils, especially Canola oil. By far the best is highly saturated oils such as palm oil and coconut oil. Don't eat any type of dark meat fish and cut back on white meat fish too. Watch out for tuna, some types are very bad. No salmon or trout, period.

Also totally avoid any type of fermented soy products.

Buy some plain vitamin K and take at least 500mcg per day. There is no such thing as an overdose on Vit K so don't worry about that. You can safely take 100 micrograms (the RDA) or 1000 or 10,000 or more.  Take at least 5 times the RDA. Vitamin K is required to produce platelets and a bad liver doesn't do a good job of making the peptides from K  required to make platelets.

Any amount of alcohol is very bad news too. All SSRI antidepressants also negatively affect platelets and bleeding (INR). Very many drugs will lower platelets, sometimes a great deal. That especially applies to antibiotics.

[Stronglady14]

What diet did you follow to raise your Platelets. I too need to this after treatment.

[Evan_the_elder1]

I am very excited to finally be getting treatment. I fully qualify for Harvoni so I will be seeing my Doc on the 15th July and expect to start a few weeks after they do the viral load etc. I am hoping for the full 12 weeks. My original viral load was right at 6 log so it should be 12 weeks. I have 1b which is supposed to have higher cure rate, pretty well 100%. When I get on it I will try to remember to report how it is going. I don't much care how crappy it makes me feel, I want it gone for good. It always makes me super nervous that I might somehow accidentally infect somebody else. I don't have to worry about wife any more, she ran away four months ago, Criminal Desertion. She never got it after being married for 44 years to the day when she took off.

Now I want to find somebody new to live with but I just cannot do that in my own mind with Hep C. My Ex was probably immune, which does exist, but somebody new wouldn't be at my age now. I've had HCV for around 46 to 47 years from Immunoglobulin injections in US Army in 68 or 69. I have never been qualified for treatment because of low platelets, as low as around 80 just recently. Now have them up to 109 yesterday. I can get them higher by regulating diet. I am very much hoping it will help with my severe fibromyalgia. The Fibro rate with Hep C 1b is 57%.

[Livelife777]

You need to give yourself more time for the meds to clear your system.  These are heavy duty pills that are capable of wiping out a virus that until recently has had a small cure rate.  Personally I was on Ribavirin for 12 weeks and it took a good 6 months to feel normal.  Continue to drink fluids, get some exercise, and eat healthy.  In no time you will become virus free and looking towards a very healthy long life.
Best to you
.....Kim

[virt111]

I've got some joint pain in my feet, mainly upon waking up in the morning. Could be from the last gout attack I had during treatment, or could be lingering joint aches from the treatment. Can't say with any certainty.

Otherwise, I was UND at EOT (6/19/15) and I feel great. Better than I've felt in years.

[Dee1956]

Hello, while I did not treat with Harvoni I have been reading others experiences and some people are having problems afterwards
If Ribavirin was done with it, it can take up to 6 months for it to clear the body.
You will improve.  Try to eat as healthy as you can continue to drink lots of water
Good luck
Dee