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Hepatitis C: Post Treatment Issues Community
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Avatar universal

9 years of fatigue and joint pain

I came to this forum in search of hope ---- I am only 56 years old but feel 80
I spent 20 years in military flying for the USAF ----- no drugs - drank, but my liver was in perfect condition
Got Hep C 85/90 from a Gamma Globulin shot (whole blood plasma) and went 12 years without it being detected and quit drinking day I was diagnosed

I can remember the day I took my first shot of Interferon and took the Ribo
I can also remember having more energy than I could burn off (If I didn't wear myself out I had trouble going to sleep and could put in 36 hour days flying with 8 hours sleep for weeks) I remember waking up and looking forward to getting my day started as soon as possible no matter what I had planed

I took my shot and slept for 3 days for the next 4 days I could barely do anything but go on and take it 1 day at a time. 6 months Interferon / Ribo ---- 10 months Peg-Intron / Ribo      Nothing worked still had 1A Hep C.

It has been 9 years since I stopped the treatment and I am still feeling like I am on the treatment --- debilitating fatigue / headaches (move about) / joint pain / back pain (from injuries prior to TX but from lack of activity have gotten worse and require pain medication now) / brain fog lack of concentration

The VA and the rest of the doctors won't accept that this all came from me taking the Combo therapy when I know exactly that is when it all started (liver is still same as it was back then)

My question is one that I do not advocate anyone else to try, but I have become so desperate that I have resorted to trying things to help overcome the fatigue. I have known folks that have been recreational drug users forever and one of them came to see me since I barely have enough energy to go to the store let alone drive 6 hours to visit them.
They left me with some crystal meth and I held on to it for 3 months before deciding to try it. I did a very little bit about 10 AM because of all the things I want in life is to be able to wake up and have enough energy to look forward to doing something / anything. I did it that early and only a small amount because I wanted to be able to go to bed that night.
The strange thing was that I didn't feel high / euphoric ----- I felt "normal" for the first time in 9 years. I had breakfast and cleaned my house and ENJOYED it. I did go to sleep that night around 2330 but didn't sleep well. Which made the next day seem like it was a normal day of being back to exhausted.

This started me trying to find answers as to what happened to my body from the treatment and if there was a way to reverse it since the drug is a chemical reaction on the body and brain and not totally due to still having Hep C and getting older

I did find some things on the forum about about Post Interferon Syndrome and things others had done to combat it. I know that the drug I used can not be a solution nor do I want it to be.

Anyone know what it did to make me feel normal and how to repair that type of damage so I can wake up and not feel like I haven't slept for 3 days ? I do know what that feels like because I had done it before with drugs so I have a frame of reference as to how run down I am.

I am going to try some of the things others have tried and talk to VA about re-balancing amino acids and other things

Any insight would be greatly appreciated
83 Responses
747988 tn?1396540478
I treated with interferon/riba 8 years ago-successfully-but am left in a similar state to you.I was healthy and active with no liver damage or symptoms prior to treatment despite having hcv for over 18 years.
I knew as soon as I didn't improve post treatment that the drugs had damaged me.It took 5 years to finally get a diagnosis of Post Interferon syndrome.I know exactly how you feel.However you do still have hep c and as the liver is the body's engine this may well be contributory to you feeling fatigued.Energy borrowed has to be paid back so you probably found that you had a few days completely whacked out post your experiments,it may well have been delayed so you didn't associate the two.If you have liver damage and hcv you really shouldn't make it work any harder than it already is so I'd leave out the chemicals-tempting as it may be to have a 'normal' day! I found cutting gluten/chemicals has helped and pacing myself very strictly can leave some spare energy now and then-it's life Jim but not as we knew it!
1815939 tn?1377995399
I am sorry you are feeling so debilitated.

Both Hepatitis C and Interferon treatment can trigger Autoimmune Diseases/Disorders. You may have an Autoimmune Disease/Disorder. My suggestion would be to see a competent Rheumatologist at a university medical center.  A competent Rheumatologist will run the appropriate tests to determine if you have an Autoimmune Disease/Disorder and, if you do, will start appropriate treatment.

Best of luck.
2059648 tn?1439770265
Did you have a complete physical to find out why you have fatigue.  There are many medical reason you could be experiencing brain fog and fatigue.
Something wrong with your thyroid, your kidneys, spleen, lungs to name a few.  It's my understanding that you still have Hepatitis C.   That alone can cause numerous medical problems.  I think this would be a very good time to
schedule a complete work up to find out exactly why your so fatigued and  
experiencing brain fog.  Set up an appointment and get to the bottom of your health issues.

Let us know what happens
Avatar universal
I have seen military doctors at Walter Reed in Md to private doctors in several different states I have lived in since being medically retired
I have had every test imaginable ---- I have blood tests of all sorts all the time
Even my liver levels are in normal range (even though I still have a viral load)
They keep saying they can't do anything until they cure the Hep C to eliminate that
My ammonia levels fluctuate (depending on diet and activity) One doc was shocked at how high it was ---- 6 months later another wasn't worried about it
I guess that's why doctors have "practices" because they don't have to be right because they are just practicing
The combo therapy did something to my system and it never reverted back to what it used to be. In my immune system (as Pooh suggested) or in my brain or a combination of the 2
I just am trying to find a correlation as to why I felt norm, on something I shouldn't be using and why it made me feel that way. I have done that 3 times since November with the same results on feeling normal --- I used it when there were things I wanted to get done like painting a room, which on a normal day I might get 90 minutes of work done before I would feel like I was going to pass out (Tried to explain this to a doctor that suggested I go to a gym on how that was not going to happen)
Feeling like I have the flu (minus cough and sneezing) every day is really old when all I want to do is have the energy to do normal things, go to sleep and wake up feeling refreshed
2059648 tn?1439770265
Rick,  You have Hepatitis C.   Your liver  level can be in normal range and you can have advanced liver damage.   Your last Hepatitis C treatment was 9 years ago and you believe it was the interferon that has caused you problems for all these years.   Again, you have Hepatitis C that wasn't cured some 9 years ago.  This could and might be the root of your fatigue.  It sounds like doctors have suggested it maybe your problem by saying the Hepatitis C needs to be taken care of first.  Have you tried looking at non-interferon clinic trials or even the current treatments with interferon that have a very high success rate? I know it must be very frustrating to deal with all the extra manifestations of Hepatitis C.  But you do need to seriously start looking at treatment options and a plan to cure yourself of hepatitis C.  There's so many advancement and many more in the near future.

  

1815939 tn?1377995399
I see that you still have Hepatitis C. My previous response was given when I thought you had attained SVR (cure) with treatment and yet still have fatigue and joint aches and brain fog.

Since you still have Hepatitis C, then that would be the first thing I would tackle if I was you. Hepatitis C can cause all of the symptoms that you have described. Hepatitis C does not just attack the liver. It also attacks other organs and causes multiple extrahepatic manifestations of Hepatitis C. Your symptoms may all be due to Hepatitis C. So that is the first thing I would look into, new treatments for hepatitis C and getting rid of Hepatitis C.

Here is a link that discusses some of the extrahepatic manifestations of Hepatitis C:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

If I were you I would find a good Hepatologist and look into treating as soon as you can find a treatment that you and the Hepatologist feel is right for you. It is possible that after you eradicate the virus, you will feel much better. I know I did. I felt so much better in so many ways after I was cured and all of my fatigue disappeared.

Best of luck.

Avatar universal
Thank you all for all the replies
Prior to treatment I was asymptomatic for 12 years with my liver barely in stage 1 cirrhosis
It is now almost stage 2 but hasn't changed in 5 years since last biopsy
All of the problems started with the treatment
I have friends that have had it longer than me and they still lead healthy happy lives and have never done the combo treatment. They monitor their livers with their doctors.

It is the fatigue that is what is killing me. I can deal with all the rest of the aches and pains.
The current Hep C specialist in Charleston says I need to wait a few more years for new treatment to mature. I am not sure if I can do it again. I live alone and have no support system since I rarely go out and haven't developed any new friendships since this fatigue took over my life.
I guess what scares me also is that what if it isn't the Hep C ? Hopefully one day I will attain SVR
Where do they look then and if so why aren't those avenues being explored now?

The fact sheet adds a ton of new possibilities although luckily I have none and according to the doctors I am healthy as a horse aside form my fatigue

I thank you all again for your replies and support
2059648 tn?1439770265
For what it's worth.....I too had more fatigue before treatment than after.  Also, after treatment your doctors will be able to rule out Hepatitis C and focus on possible other causes.  Interferon Free Treatment for 1a's is in clinical trials as we speak.  Your are at a stage where you can wait for better treatment if you choose to do so.   Do you take some for depression? Having hepatitis C can make you very depressed mentally and physically.  If your not taking anything maybe you should.  Give yourself some relief and hope that
the best is yet to come.

Best to you
Avatar universal
I had zero fatigue before I started treatment ( actually more energy than I could use ---- If I didn't wear myself out I could get 4 hours sleep and keep going)

Have tried 6 different medications for depression and they all made me feel worse ---- like suicidal worse. Last Psych doctor realized its the fatigue causing my depression --- I have nothing that depresses me other than fatigue ----- If I had the energy to just have a normal day life would be peachy. I feel like I am a walking / talking coma patient. The mind wants to do things and the body is saying another.

Interesting Info
                                                                                              http://livlong.ca/349/rebalancing-nerotransmitters-the-dangers-of-head-meds

Why I strongly feel that the TX through something out of whack in my system (not just because of this). There seems to be so many variables with people that have achieved SVR yet still have debilitating problems ---- Folks that didn't and have the problems. I realize that still having Hep C can cause some of this, but it should have been a more gradual onset other than an overnight occurrence. Continuing the treatment probably made it worse
2059648 tn?1439770265
I'm really sorry you feel that way.  I know I can't stand to feel like that.  It must be hard to deal with for all this time.  Hoping you will find the answer soon.

Best to you
Avatar universal
If I can find an answer maybe I can help someone else too

That is why I joined the forums ---- to search for answers and hopefully help someone else
Avatar universal
Check out LDN (low dose naltrexone) therapy.  Some kind person on MedHelp turned me on to it.  It's been helpful.  

Rheumatologists often give you drugs that suppress your immune system.  Perhaps not good for a person with Hep C.  otter watcher has a good idea - watch gluten and eat an anti-inflammatory diet.

some people often suggest that Hep C causes auto-immune disorders.  perhaps it does.  When such disorders hit you close on the tail of treatment, reason suggests it's the drugs.  

Before you decide to treat again, check out AALSD Liver Meeting abstracts on Hep C from 2012 and 2013 meetings.  Cutting edge, real life, clinical research that is worth reading.  Research presented at 2012 meeting suggests that treating and failing makes you about six times as likely to develop cirrhosis as one who never treated.
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