D63 Post Harvoni as good as it gets?

[D63]

Hi, I just read a statement from Gilead. It was another of their monthly reports- forward-looking statements, etc. I noticed in their side effects listing, something I never noticed before along with the two: headache, fatigue and now, "asthenia." Did I miss this before? Anyway, it's clever. Here's a wiki about it and it explains what is unexplainable about what I'm experiencing these days. https://en.wikipedia.org/wiki/Weakness

The people around me don't get it. Amidst the regular housework that I do when I have spurts of energy and joint pain, I can't keep up with my partner who gives me the "I'm sick of hearing about it look" when I say that I'm sorry, I forgot or, I'm run down, I'll get back to you. This morning I woke up feeling like I had been beaten up by a group of people during my sleep, maybe some wore work boots? I saw my GP this Tuesday last, he says it's tendonitis or tendonosis and as I posted in another topic, he says I don't have thrombosis, but he only fingered my calve to determine that. I know this isn't forever, so I hear. I'm being as patient as I can but I'm eager to be physically active, join the gym again but the GP says to wait. So I made four signs, two in Spanish and two in English that I put up around the apartment: "I'm still recovering from the treatment." I was asked why I made the signs and I smiled and told them "just in case you get tired of hearing about it." What else could I do?

Anyway, I celebrated my 54th birthday the 18th and I have my gift. I'm thinking about you all and wishing you well!

HUGS

d

[andrew j]

Hi D,

I am 11-or-so months post-Tx, and I still feel tired all the time - and weak - to quote the word used in your attachment.

I was full-blown symptomatic for the best part of twenty years, and also got a life-threatening bacterial infection a while back - so I think I'm still in a sort-of broad-based process of recovery.
... in part, from long-term stress, I wonder?

... Mind you - my experience does seem to be more-or-less identical to others here, recovering after Tx with Harvoni.
(See threads by WholeFoods, Igotmine (further down this page) - and Rocket Girl (in the 'Research' section).

Posts of those a little further down the track than you or me  (e.g. WholeFoods,
who is 2 years-post, I think) - point to a slow and steady recovery.

... And that is, of course - a GOOD thing!

I like what you did, putting up those notices!

That expectation stuff can be a real pain, can't it?
... It's like - 'I'm sorry, but this is all I can do and be for now.
I will be bigger, better, brighter, and faster - tomorrow!'

I don't think we have much choice but to look after ourselves, and do the best we can.

I really enjoyed looking into that attachment of yours.
It explains a lot - and helps me a lot.
Thanks.

I clicked on 'Chronic Fatigue Syndrome' and noticed, in a summary box on the RH side, references to 'PVSD' (Post-viral Stress Disorder), and 'CFIDS' (Chronic Fatigue Immune Dysfunction Syndrome).
I'm thinking about those.

In the meantime -

Best wishes,
A.

[FutureThinker]

Thanks, Andrew j, for the direction to this thread.  Chronic Fatigue Syndrome literature also mentions nutritional deficiencies, including B12, so I do think if one is having a longer length of fatigue than expected, the blood work is an easy way to find out.

D63, I am almost 1 yr post treatment, but I am feeling better w/more energy, so hang in there! I fully agree -- my expectation was also that once I was rid of HCV, my normal energy level and cognition would return and life would be wonderful........... the cognition did return quickly, so that was great, but I hear you re: the spurts of energy and poor endurance, vs. a normal continuous stamina level.  It's frustrating!

So that's why my GP chose to run some micronutrient blood tests to see if I was deficient, and I was, specifically in B12, B3, biotin, D3 (this was documented prior to treatment), plus some others.  I've been on B12 injections for ~ 6 weeks in addition to oral vitamins/supplements, and I do have to say I am feeling better.  It may well just be time, or a combo of the vitamins and time, but I am just grateful to be getting back to a more normal endurance level. 

As I recently posted on another thread -- I do believe we will all be whole again, it's just going to take some of us more time than others.

Keep the faith, FT

[morab]

D63
Don't feel alone in your pain issues, many of us a year later have still not recovered from the effects of Harvoni, I am one of those.
I also have no one who understands my pain, when you have an invisible pain folks tend to think it is caused by something else, or all in your head.
My b12 and all vitamin levels are good, I do get a B 12 shot once a month to help with the chronic fatigue.
My RA factor is still high which i did not have prior to harvoni. hmm
The only thing helping my physical muscle and joint pain is accupressure and massage therapy
Good luck
morab

[Angelica]

D63,

I am almost 24 weeks post at this point. I have had to really slow things down, so I have postponed things which I should have done this year to next year. It depresses me a little, but I also realise how lucky I am for being able to do so.

My energy levels are not as good as I had hoped and I do feel off  too often for my liking. I am more prone to head aches, but that could be because I get tired more easily. I am taking supplements, eating very well, I have even started to make my own bone broth for the past two months. I am not smoking nor drinking (still) and I also get myself to the gym. Since they have pilates and yoga classes as well as the more common ones, I can tune the intensity of my classes to how I feel physically.  I should be an advert for health.

I do everything I can think of to try and get myself better. I think I am even going give homeopathy a go, as soon as I get the name of a good homeopath.

I hope is just a matter of time. Good luck to us all.

[Patty]

Hi D63,
My name is Patty and Morab and I started Harvoni at the same time, and we ended at the same time. We both are still dealing with the aftermath of treatment. I'm extremely fatigued, and every joint in my body hurts. Brain fog is a problem and I feel as though I have been hit by a bus. I'm glad to say I'm hep-c free, but at what price ?? It's like the treatment cured the hep-c but woke the sleeping giant. Are bodies are having Auto Immune disease issues coming up everywhere. If I had to do it over again I'm not sure I would. I've traded one disease for a whole list of others. My ultrasound showed my liver is swollen, and it hurts to lie down on my rt side. My liver test keep going up and down. Maybe we just need to rest for however long that is, everyone is different. But for many of us we are suffering with joint pain, leg pain, brain fog, extreme fatigue, blurry vision, headaches, ect... I pray this all gets better and there are no long term side effects. However I feel that the drug was rushed thru to be the miracle cure and so others can get rich. It has not been out long enough to know what the long term effect are and you are not alone. I pray things get better for us all. We deserve it, this treatment which was post to be a walk in the park and has been for many, unfortunately has not been for many of us. I do feel as though my liver problems have been sped up. That were at a higher increase to get chirosis or cancer because we have no immune system and are livers have just went thru a lot. So I guess we will see. Epsom Salt baths help with the body aches, sitting in the sun for at least 15min a day helps with the itching. Watch what you eat stay away from alcohol and cigarettes, salt, and refined sugar. 8 glasses of Distilled water helps to remove toxins in the body. Reflexology is also very beneficial for everything. Have your vitamin and minerals checked and find a Dr who will listen and is willing to have a open mind for new approaches. I'm going to see a Dr who my sister recommend. He is very thorough and is able to see what your body is lacking and what it has too much of. He says everyone is diff so the lab results may say your in normal range, but everyone is unique and what is normal for you may not be normal for me. It's his job to tweak what are bodies need to help put us in are best possible ranges. He has seen many of my family members for many things and keeps asking about me. He wants to do some test and see if he can't put my system back into harmony with it self. I'll let you know how it goes and it may be what helps us all get are lives back, because let's face it Harvoni makers don't want to hear anything other than it worked. And are primary's can't figure it out, but there are just to many of us to ignore.
Best of luck to us all, may we get our healthy happy endings Patty

[lporterrn]

Patty,
It sounds horribly frustrating. As an outsider, which is to say that I am not in your body, I have 2 thoughts. The first is to keep speaking up and don't just speak up here - speak up to your doctor and the FDA (or whatever agency is appropriate for your country).

My second thought I say with deep reservations because when I say it, it sounds like I don't believe you or I am discounting you, which is the last thing I am trying to do. I hope you keep an open mind to the possibility that you may have had a second problem come up that has nothing to do with the medication. I say this because I've seen it happen often. We naturally think that if we take a med and have a set of symptoms that is a side effect. However, although that is probably the case, it isn't always the case. So please try to get a good medical work-up to be sure.

Having said that, what is lurking in the back of my mind is that we are going to find out that there are some people who can't take these drugs. The field of genetic pharmacology is showing us this on certain drugs (can't wait until they get to the hep C meds!). Alternatively, we may find that it isn't the hep C drug that causes us to feel bad, but the absence of hep C that is causing havoc. I know it sounds weird, but we've seen variations on this.

In the meantime, keep an open mind and let it guide you to health. 

[dragonslayer]

Patty, Im not trying to doubt you, but I wanted to ask:  Your sig indicates that you have cirrhosis.. How do you know that some of your symptoms arent related to that instead of being the after effects of Harvoni, per se?

[andrew j]

Hi Patty,

So sorry to read about your troubles.
It must be devastating to go into Tx expecting a cure - and to wind up feeling worse than you did before.

Good on you for taking responsibility, and trying to sort this out with your Dr.
I guess you don't have much choice?
It seems that people experiencing similar symptoms to yours have had only patchy  results from contacting the FDA - and virtually no response from Gilead.

It's not good enough.

If there isn't research going on into these adverse reactions by now, there should be.
As you say - there are enough people reporting such adverse reactions for it to be a concern.

... Speaking of which - I have just referred chrismr222 to your post.
You might be interested in his / her post, on Igotmine's thread 'Post Harvoni about 9 months ...' - in this section.

Hoping you are doing OK - and that you feel better soon!

Best wishes,
A.

[chrismr222]

Hi This is Chrismr2, I am not sure how to navigate around this site yet, but I'll try. I would like to respond to anyone who has completed Harvoni and those of you considering it. I have contacted my Hep C doctor with the current conditions that effect me and other I know who have taken Harvoni. I found out on Friday, when I went for my colonoscopy that I have kidney failure. Although the colonoscopy was not complete due to the preparation not being not being done thoroughly, I was shocked to be told at that time, I'm in kidney failure. My blood tests from 10/2016 show no signs of kidney failure, and my 01/217 blood work shows complete failure. I feel that I traded one life threatening issue for another. Not only are my kidneys failing, but I have been sick for over six weeks. Very high fever, to the point of talking to people who are not there, every bone and muscle hurts to move it. I can't even touch myself on the arm with out the pain be in-creditable. I get a high fever for about two days, then when the fever breaks, I'm absolutely fine. That is not the flu like i"ve been told. I also get a sore throat, ear infection that is not responding to any antibiotics. My primary care Dr. thinks I'm nuts. No body understands what I'm going through. Although  everybody see me as being ill, and I sound and the symptoms are present, some how they think I'm a hypochondriac. My Hep C Dr. know what I'm going through but fails to respond to my complete shut down of my immune system. This illness that I have for the fifth time in six weeks is not getting better it's getting worse. I feel like my whole body is not working. I have never felt this bad in my life. My fears are that with a compromised immune system that I will have no ability to fight anything. I have contact Harvoni and the FDA with the details of my condition. I am leaving a paper trial for the class action law suit that will undoubtedly be filed after I'm six feet under. I am trying to remain positive, for my kids but feeling this bad all the time there is no way to fight all the hazards that taking Harvoni has left me with. I don't see having a zero viral court could possibly be compared to the way my body feels now. Havoni was not studied enough for being a cure for Hep C.  A cure means all effects from Hep C are also cured, not swapping for a new condition that brings life threatening effects. Harvoni has made Gilead Billions in profit. It is a closely guarded secret as to the after effects of the drug. It should be made to put the warnings that could follow the completion of the drug. I never would of taken the drug if I know what I know now. I would of opted for the effects of Hep C rather than feeling like shit and having no quality of life now. I contracted Hep C sometime after 2012, I should of been a easy one to cure.     

[morab]

chris
You are not alone. I have talked to many people having severe horrible symptoms after treatment with harvoni, some now have tumors in their liver that were not there before, others like myself still have pain issues in my joints and muscles, tinnitus, headaches, and I still have the nausea.
I lost 30 pounds since I began tx a year ago, I am praying my next ultrasound is as good as the one i had before tx and that some day my body will return to normal, yet after a year I am beginning to wonder if I will ever have my old life back.
It is time for Gilead and the specialists to start taking the few of us who have not done well on this drug.
I will keep you in my thoughts and prayers
morab

[D63]

Hey people! I'm supposed to start a new topic since it's been 60 days since I posted. I was surprised to see how many people had answered because I usually receive a notification when somebody posts. I have just now read thru all of your posts and I want to thank each of you for your input, thoughts, experience and conclusions. I will be posting another thread as I have received my 12 week eot results. I will include some extra things that have popped up. One of those things I mentioned in a "Harvoni: Post Treatment" but can't remember who posted it!!!! Well, I'll consolidate my feces.