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4384361 tn?1399998230

Detected at EOT - 5 months post

Hi - It's been awhile since I've posted as after I finished treatment and learned that it didn't work I took a break.  For those who don't remember, I treated with INF/Riba for 48 weeks and am 3a.  I started feeling better almost immediately after ending the medications, however, 5 months later I still suffer from severe fatigue about one day a week.  It's so bad that I fall asleep at work and there's been a couple times when I've been concerned that I won't be able to stay awake driving the three miles home.  This happened today and I had to leave work.  I immediately went to bed and slept close to eight hours.  It's very unpredictable since when I wake up at 5:30 in the morning I feel fine and start getting sleepy at work about 9:00 am.
Other than the fatigue issue, I still have areas on my scalp where I get bumps that seem like large clusters of hair are trying to break through and grow back.  I have thick hair so sometimes these patches are sore and I can't seem to keep my hands away from these areas.  Skin problems are pretty much gone except for a couple remaining small sores at the corners of my mouth.  I drink a lot of water and am very thirsty.  My glucose levels have exceeded 120 and liver enzymes are 2x normal where as during treatment all labs were normal.
My plan is to lose weight and treat again next year.  I have an appt. later this month with my NP and will discuss my concerns about the fatigue.
I get a little depressed when I see all the posts about people clearing the virus.  It seems like there are only a small group of us who relapsed this past year and I ***** knowing I have to treat again.  I wanted to get this all behind me and go on with my life.  In the meantime, I try to be positive and the treatment experience gave me a lot of time to think about changes I wanted to make.  I am getting out more and look forward to an active summer.  I bought a new kayak and can't wait to take it to a favorite lake.  I also plan to spend time at the coast with my bike in tow.  My body aches like crazy but I'm not going to let it stop me from enjoying activities I love.  I also started going to a wonderful Baptist church.  The music is outstanding and the pastor speaks about subjects we can relate to in this modern world.  I have been blessed in so many ways and I want to connect with Christ again after leaving the Catholic church many years ago.
Take care and best wishes to all going through this journey.
8 Responses
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Avatar universal
The other medication I was talking about is NS5A inhibitor GS-5816.http://hepatitiscnewdrugs.blogspot.com/search/label/Sovaldi%2FGS-5816
Helpful - 0
Avatar universal
Here is an article about our medicine: http://hepatitiscnewdrugs.blogspot.com/search/label/GS-7977%20now%20Sofosbuvir%2FBMS-790052%20now%20Daclatasvir
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4384361 tn?1399998230
Thank you all for your responses.  Type0, I am seeing my Dr. next month and will discuss waiting as long as possible for the best treatment available at that time.  My labs are very good except ALT/AST are double the normal range.  It could be worse.  
All the best to all fighting this battle.
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Avatar universal
Hello. Gen 3e here. Never treated. I can relate to your fatigue issue. I have to take a nap every day in order to be productive in the evening. I would take a nap in order to do intellectual work, such as studying or creativity. The days when I work at least 8 hours, I can not do anything meaningful in the evening other than watching TV, even if I do sleep. Some time I am not that tired physically, but my brain needs to be reset to get this fresh morning feeling. My family gets frustrated with my regimen as they want to do something when I want to go sleep, and then i am up at night... No solution here. Waiting for the newer treatment. I do not believe Sofa and Riba would be enough. Gen 3 supposed to be easier to treat with older SOC, but I have met few people on line that also failed. So I do not want to take my chances right now. Plus- I hardly manage life the way it is- I do not need to feel any worse.

What I am looking for are 2 similar medications. Not feeling to look them up right now. One sounds like Declatosvir (I know it is not exact spelling), other one- same group but by Gilead, that expected to be combination 1 tablet with Sofa about a year from now as it is in the 2nd phase. I do not want to do Riba either. I do feel as we got left out with Gen 3, because it is not as common. But it would be much more common if everybody at risk gets tested. Hang in there- if everything works out and nobody dies during the trials, we should have Pen-genotypal treatment in 2015.  
Helpful - 0
4705307 tn?1447970322
I too am sorry to hear you didn't clear the virus. But as dwbh has said the treatment is looking really good.
As far feeling better, as you know I too am or was a 3a, treated the same protocol as you. That said, it took almost 6 months before the fatigue started to be less and less.
Today 32 weeks PEOT I can tell you I do feel much better most the time. My biggest issue is stress, and not having any tolerance for it.
Helpful - 0
317787 tn?1473358451
Hey there, I am so sorry that your previous tx did not work.  I hope a newer one will help you.  I also had severe fatigue after treating.  When I got tired I had to lay down before I fell down.  As time went on it did get better.
I hope it will be the same for you
Dee
Helpful - 0
96938 tn?1189799858
I know the frustration of a G3 do-over.  If that post-tx PCR  (January?) was the only one after treatment you should have another to confirm.  I also understand the tiredness at work, especially if you have blood sugar issues.  Try smaller meals (good stuff) through the work day and see if that helps the tiredness crash.
Helpful - 0
2059648 tn?1439766665
Sorry your treatment didn't work for you.  But the good news is treatment is getting better and better.  New treatments are coming out that cure a very high percentage of people.   I know how you feel about riding your bike, going on the lake in your kayak.....go enjoy yourself.   Remember that you treated with the old regiment of treatment drugs.  Next time it will be a shiny new
treatment that known to kick the heck out of Hep C for Genotype 3a.  It's going to happen... I can feel it.  

Have a great summer
Helpful - 0
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