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Hepatitis C: Post Treatment Issues Community
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20063166 tn?1489404667

Hepatitis C Post-Treatment side effects

Passed more than 7 months after the successful treatment of my son from hepatitis C, but there were serious side effects that were not before treatment:
1 problems with the eyes-before the eyes of the mesh; If you look at a certain point it begins to blur; Wave-like movement of objects, if tired; Bright light is a problem, often there is burning in the eyes.
2 there is a fog in his head, which prevents him from thinking clearly and very much influences his memory.
3 the head is constantly spinning, the rumble in his head
4 infinite fatigue even after normal hours sleeping
5 there is no feeling of hunger, cold
6 was able to perfectly analyze the problems and find solutions, now it is largely lost
Symptoms are very similar to severe flu although there is no flu.
All this has led to a very severe depression, which can not be overcome because it prevents constant fear that all this can not be restored and he will lose his favorite profession, especially since now he can not work.
I understand, in order to be cured, we need to find the reasons for his health problems!
That's why I'm asking about the reasons, why such successful treatment of hepatitis C entailed such serious side effects, what organs were affected (the liver is now normal), Did the brain suffer?
This situation seems to me absurd - to be treated after a successful treatment, but as it turned out, this is now a normal phenomenon.
My son was left without help, although we turned to many specialists!
Please, help us! Maybe you know these problems, found sources of problems, and have been successfully treated!
Maybe you know a good, caring specialist, family doctor, therapist, who will not leave his patient alone with his problems.
Please, tell me!
We live in the city of Kyle near Austin, Texas
11 Responses
317787 tn?1473362051
Hi, I'm sorry to hear about your son. What treatment did he do? Has he had his thyroid checked? I used interferon and it did something to my thyroid. I didn't know for many many months.
I wish I had an answer for you. I hope someone else will be along to answer.
I'll check back, Dee
1 Comments
zkm
Thank you very much for your respond!
747988 tn?1396540478
Yes to all of the above-I am 10 years post treatment and still have the same side effects-was diagnosed 5 years post treatment with Post Interferon Syndrome-very similar to Chronic Fatigue Syndrome. The only thing I have found that helps is stress removal (if poss)  pacing (in my case doing very little) and acceptance of the new you. I used to be sparky and loud, feisty and gregarious,now I sit indoors and see very few and only very lovely people.I do hope things improve with time. I also take a multivitamin and mineral as treatment strips the body of magnesium and vitamin D and a deficit in certain vitamins can amplify some symptoms. I would suggest you go back to the liver consultant til you get answers. All the best.
2 Comments
zkm
thanks otterwatcher for your respond!
zkm
My son's organs are OK now (liver, kidney, lungs), but the severe consequences after Harvoney treatment and the reasons for these problems are the main issue
317787 tn?1473362051
Otter great response, thank you so much!  I didn't realize that the interferon could strip the body.  Over the years since I finished treatment I have tried many things to improve. One thing that seemed to help were probiotics. I too take magnesium which helps the cramps and aching quite a bit and I take vitamin D along with a daily vitamin.
I recently started Omega 3 and Co Q10.  Not sure about that yet. But most definitely the magnesium.

What type do you take?
2 Comments
I use Epsom salts in the bath and a magnesium oil spray-apparently it's better absorbed that way. I take a daily multivit and mineral and an extra boost of vit d.I tried so many supplements but none really helped bar the magnesium and vit d, Omega 3 and co q10 are useful tho,as kids we were fed fish liver oil If you have a healthy diet and haven't been diagnosed with a particular deficiency save your money!
Thank you! I am going to try that
317787 tn?1473362051
I'm sorry Zkm, I forgot to mention that my eyes were very dry for a long time. I had to use drops for a couple of years. Now my eyes have improved, I rarely use them.
I also had the brain fog, it is an awful feeling. I can definitely sympathize.
1 Comments
The brain fog-coupled with the awful neverending fatigue- it's like extreme jet lag.
317787 tn?1473362051
Here are some people talking about their experiences.
There used to be many more people on here. I hope others will drop by
Good luck

http://www.medhelp.org/posts/Hepatitis-C-Post-Treatment-Issues/Interferon-Syndrome/show/2706202
3 Comments
zkm
Thank you Dee1956 for understanding and support! Any advice is very valuable because you never know where and when you can find an answer!
zkm
Thanks again Dee1956 for help! I will use this Web link.
zkm
All this is very difficult to fight without the help of doctors, but we do not give up and continue to look. If something useful is found, we will definitely inform everyone
317787 tn?1473362051
Hi if he can try drinking lots of water that may help him a bit. When we are dehydrated our body will aches more. Trying to take a short walk everyday can help too.
Eating very healthy is a plus too.  I remember how hard it was to try to recover after I finished tx. Many people say they have no side effects but many do. It is a little harder to find thos people. I will keep searching
There is a nurse who is very helpful, I'm trying to remember her name now.
1 Comments
zkm
Dear Dee1956, Thanks for the question!
My son luckily drinks enough water.
317787 tn?1473362051
Hi Lucinda Porter is the name of the RN

I also found this petition, not asking anyone to sign it, I'm upset by the side effects that are being hidden by the FDA

https://www.change.org/p/dr-janet-woodcock-the-fda-must-disclose-all-potential-side-effects-of-harvoni-hepatitis-c-medication
1 Comments
zkm
Dear Dee1956, as usual, you are very helpful! I did find Ms. porter Web site, and will try to contact her.
317787 tn?1473362051
I'm glad to help in any way I can.
1 Comments
zkm

I am very happy to meet people who are not indifferent! Such people help us with their indifference! Thanks!
Avatar universal
I'm sorry for your frustration. I took pegulated interferon with ribirivin  finished in sept 2006. Was sick 3 months into treatment and went to bed and it's march 2017 and I'm still in bed. It's taken years and doctors therapist, everything you could think of but finally I have 13 illness that were triggered by the drug treatment. I spent 4 Years getting   Disability. For years could find no information on life after interferon treatment. I thought everyone was dead. But I keep looking. I can tell you they have proven how much of illness it causes deals with inflammation and yes there is proof of brain inflammation. That's the brain fog plus personally I get headaches. Currently I've been in bed constantly since sept 2016. My depression has caused anxiety attacks so I'm unable to leave my home now. But I don't understand why no class action suit. But so many people look down on hep c patients like HIV because of the drug use stigmA. I got mine tattooing my lips red cosmetically. But I have chronic fatigue, bipolar
Depression, anxiety -bone deteriation( spine) psoriatic arthritis with problems in ankles knees, shoulders hands and jaw, currently my jaw is deterioration and my teeth just fall out.  Sleep apnea, chronic fatigue, neuropathy, fibromyalgia, osteoarthritis .  Acid reflux,gastrointestinal  problems insomnia, I lost most of my eye sight and hearing. And oh yeah real memory loss.  Anyway. Know I didn't answer your question well enough but years of tons of medicine because I live in pain burning muscles  bones that hurt ever since I started the med. I would tell anyone with hep C that's not in danger of death of liver transplant. NO don't do these any of these drugs. All the new drugs they've come out with have been within 7 years where the case study? You'll may get through it quicker and maybe not as sick as first but it's going to be poison. I tell you if you drink stop if you smoke stop. Get into some healthy living natural food and go live a life. Cause I'll tell you life bed *****, there is no purpose for me to be here at all. I,am a burden. I bring no one joy. And now this president we got May drop my disability I'm one only 57 got sick at 45. I can't live without doctors can't live over 30 days I'm afraid of. So this healthcare act thing. I c ant watch cause it's people like me that will die.
Hang in there. Information is power research .
God bless
2 Comments
zkm
dear Beachbunny50
If you only knew how sorry I am for you!
Yes, I agree with you, so my son and I do a lot of searches wherever possible. We approach each problem separately, which includes diagnostic issues and necessary tests, so that we can eliminate this or that problem and move on.
All this is the work of specialists, but unfortunately there are not so many indifferent doctors who can listen and hear patients. We have not found such spesialists yet, therefore we continue the search ourselves, and then we go to the doctors and insist on carrying out various tests. We do not see any other way yet! It turns out that we must take treatment in our own hands!
Bunny, I too am so sorry. I have had a very hard time recovering from the first tx in 2008/2009, then second in 2011/12 which included Incivek.
The NADH really helpd me with my brain fog.
I just started having deep tissue massages to see if that could help with my pain. It seems to be helping quite a bit. My family and friends are helping me pay for it as my ins doesn't cover. They only cover physical therapy which is too painful.  I have seen big improvement as they work out the trigger points in my muscles.
317787 tn?1473362051
I believe the doctors know exactly what has happened. They just don't say anything for fear of having to testify against these large drug companies.
Some people are lucky, don't have a lot of symptoms. Others are crippled.
I am so very sorry.
317787 tn?1473362051
Did I mention the NADH for brain fog? It was the first thing I discovered and it really helped me. It is a Co enzyme.   I suggested it to others, it helped them as well.
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