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Hepatitis C Main Forums => Post Hepatitis C Treatment => Topic started by: Daisychain58 on March 26, 2018, 01:19:46 am

Title: Hep c post solvadi daklinza treatment 20 months
Post by: Daisychain58 on March 26, 2018, 01:19:46 am
Hi all
I had Hep 3 geno 3a for 40 years and am now 60. Kept pretty well, worked, liver enzymes fluctuated between a tad elevated and normal.  Fibroscan score was 1. Couple of liver cysts and fatty liver.  I felt not too bad just fatigue but could function normally.
Well I had the 3  month treatment, pretty unremarkable, bit of insomnia.virus cleared.
I have never felt so unwell and unmotivated in my life.
List of symptoms that are new and are not going away.
Disturbed sleep
Constant fatigue
Fatty liver and cysts
Enlarged liver.. new
Now fatty pancreas
Brain fog
Joint pains and aches
Depression badly, never in my life have I suffered this
Dermatitis on hands and scalp
Weight gain
High cholesterol... was always good with a high good count
High blood pressure .. was always on the low side
Don’t want to talk to anyone and just not happy, I was a happy bubbly full of life person before this.

I eat well, drink a little, drinks heaps of water.
Have had my thyroid checked, normal
All blood tests come back normal

Now I’m freaking out about this fatty pancreas, next step in type 2 diabetes.
I have modified my diet, and am taking high doses of milk thistle and liver herbs again. In two weeks the side pain has improved thank goodness, it was unbearable but doctor said gallstones not bad enough to remove gallbladder.
I am so depressed over this, I wish I had never had the treatment,  my liver was in good shape really prior to treatment.  I just don’t feel like the same person in the head and psychically I’m way worse.
I live in Australia and would be very interested if anyone else has or is experiencing similar.  So much for the virus being cleared and a cure, why do I feel like I’m dying.
Title: Re: Hep c post solvadi daklinza treatment 20 months
Post by: Type0Negative on April 01, 2018, 12:56:46 am
I think you may be experiencing anxiety due to anticipation of post treatment side effects. I am G3a as well and currently taking Mavyret, and experience anxiety as well. Mavyret is an upper, it caused increased heart rate, arrhythmias, and Aderol-like stimulating effect. I am fearful of how I will feel when treatment ends. I heard Harvoni has stimulating effect as well. Who knows what it does to our brain. If you decide to take methamphetamines daily for 3 months, I believe, it would alter dopamine receptors and neurotransmitters, causing depression for a while. 20 months is enough time to adjust, your body should regulate itself, but your anxiety and concern about new symptoms possibly making you unhappy. I had gallbladder attack in my 20s- couple of times- thought I would die- it can be more than painful. But it can be treated.

Disturbed sleep=Constant fatigue. Weight gain is likely because your metabolism slowed down. Your body does not have to fight the virus any more. You are healthier, need less calories. Weight gain= fatty liver and pancreas, weight gain_ increase in cholesterol.. You may have insulin resistance or prediabetes. Not a big deal. It progresses very slowly. You have another 20 years before it would cause problems. Brain fog is subjective. Herbs have many side effects. I remember reading contradictive reports about milk thistle. Sounds as you are in excellent health for your age. None of conditions you described are terminal. Stop worrying, start dating, or take your family on vocation. Do something fun and force yourself not to think about your health. The treatment is over. Hep C is over. You are cured. Your life expectancy just went up unmeasurable. Enjoy golden years! You deserved best time of your life! 
Title: Re: Hep c post solvadi daklinza treatment 20 months
Post by: Daisychain58 on April 06, 2018, 03:58:48 am
You have made some really good points, all valid. I do hope further deterioration is not imminent but I still intend to have a full check up.
I am anxious because I don’t know what’s wrong with me and 10 kg weight gain is a lot, never weighed this ever and it’s not from overeating.
I also have had a very stressful past 2 years relating to family, namely an adult son who is now residing with me and my partner.  Home Life is generally quite depressing, for me anyway so I NEED to get out more.  I’m about 15 mins drive out of town on a property, very peaceful but all I have to deal with everything, I’m a Carer for both the men I live with and I’m exhausted both mentally and physically, drained and down, all responsibility for everything falls on to me.  Things are not happy personally but either.  Reading gods words every day does give me strength and I’ve just joined a new coast church that has opened close by, so new people.  I’m taking each day as it comes, yesterday was great, today not so, tomorrow’s a new day.  I think I’m a bit depressed as well which is another complaint that is alien to me, I first experienced this during treatment, I was having crazy suicidal thoughts.
I thank you for telling me to get out and enjoy life, maybe a few days away somewhere would be a good thing, just getting out for a walk on the beach was great therapy. Take care, enjoy your days too and God bless.
Title: Re: Hep c post solvadi daklinza treatment 20 months
Post by: KimInTheForest on April 06, 2018, 12:59:49 pm
Hi Daisychain. Quite a few people on these forums have reported the same or similar post-treatment problems to what you are experiencing - especially joint aches and pains (to the point of disability), brainfog, fatigue, and mood problems. They went into treatment 'healthy' (apart from harboring HCV), and came out of treatment free of HCV but very unwell and partly disabled with no explanation despite batteries of tests. Various theories have been postulated by members here:

-cytokine release syndrome
-hyper-stimulated immune system causing problems that appear to be auto-immune (e.g.rheumatoid arthritis, even tho person doesn't actually have that).
-reactivation of epstein-barr virus

If you look around in the post-treatment segment of the board you will find long discussions of this problem. All you can do is keep eating  and living as healthily as you can, exercise/walk as much as you can, find reasons to enjoy life each day... Wait for this post-treatment malaise to sort itself out. But by all means have your doctor test you for everything.

Good luck to you!
Title: Re: Hep c post solvadi daklinza treatment 20 months
Post by: KimInTheForest on April 06, 2018, 03:04:12 pm
Here is an example of one such thread where these post-treatment problems are being discussed: https://forums.hepmag.com/index.php?topic=5169.msg52065

Title: Re: Hep c post solvadi daklinza treatment 20 months
Post by: Daisychain58 on April 06, 2018, 06:20:42 pm
Thanks Kiminthnforest so much....this is the thread I have been looking for.
I spoke with you on a site, maybe this one when I was just a couple of months post treatment.  I was really depressed and felt like a different person with all these new symptoms appearing and you told me to keep going things would get better but they haven’t.  I just read a couple of posts and one in particular resonated.  Blocked arteries which would account for the constant fatigue.  My blood pressure is now high as is my chlorestoal, both were normal and even on the lower end of ththe scale prior to treatment.  I do still smoke a few a day and my doctor said I must quit as one blood test indicated not enough oxygen in my blood.  I have also be n sufffering terrible heartburn at night and sweats which could be heart related so off for some tests I go to get this checked.  At least I know that I am not th only one suffering post treatment.  I will read all the thread but the ones I read were from Harvoni which is not what I said.  Again thanks for the link to the forum.  Have a great day, Bless you.
Title: Re: Hep c post solvadi daklinza treatment 20 months
Post by: Daisychain58 on July 06, 2018, 08:13:21 pm
Hi all
Well what a few months.  I am currently in hospital again riding a believe a cytokine storm that has attacked me body savaglyyfoe the past 3 months.
I am being treated for RA even though test results are negative, prednisone steroid and methotrexate. Yuk for 3 months.  Im not happy but the alternative is worse.
Started about 3 -4 months ago with my left ankle, just collapsed and diagnosed with severe arthritis.  Very painful and limping and using a crutch.  Had a PRP Injection into the ankle and got a massive reaction.  3 weeks later my left knee swelled to about 3 times normal, pain intense, couldn’t mobilise.  Ended up in hospital with possible sepsis, turned out no infection although everything pointed to that.  High Wcc, CRP, temperature. It’s been a nightmare, now my right knee swelled and my elbows.  I couldnt get out of bed, back in hospital.  Cortisone injection  in both knees and aspirated.  Still RA negative, as is gout etc, no crystals.
I know that I have been on a down hill eu. With health since I was treated with Solvadi and Daklinza I. 2016.  Inflammation has gradually taken over my body.  I believe my immune system has been compromised severely with the Hep c treatment,
Possible the PRP injection started another storm, (plasma rich platelets, similar to stem cells). Where does it end.  I wish I had never had this treatment.  I was well for over 40 years and had a life.  There appears to have been no research into the adverse affects after treatment, just a quick cure.  Very upset.  So to everyone experiencing joint pains and aches, odd arthritic conditions, chronic fatigue,  brain fog. The list is endless. It is due to the wonder cure Hep c Treatment,
I’m hoping to get an immunologist to see me whilst in hospital for a different perspective to the rheumatologist.