(new here) tx naive just finished 12 wks geno 1a feel worse than ever.

[hope2bcured]

Hi
I am 54 yrs old, contracted HCV 1980 via contaminated gamma globulin. Was dx in 1997, never took any other tx, followed the alternative path.

Started Harvoni 6/22 initially felt great, then developed bradycardia, and then dangerously high bp spikes (i did have controlled bp before tx) but, never like what happened to me highest it was on Harvoni 189/154 it was very scary. They added more bp meds and put me on a 2 week heart monitor (am waiting for those results).

I finished tx 4 weeks ago, the bp has just about normalized now, will see cardiologist soon.  My problem, is I feel horrible. I am extremely fatigued, some nights going to bed at 7:30 (ive always had insomnia prior to tx not now) My joint pain is much worse than it ever was I feel like I am 80. I have loud ringing in my ears, that I had before but, not this loud its much worse.  And I am having a lot of Liver pain and discomfort it was so bad the other night, I almost went to ER. I have been drinking dandelion root tea, which seems to be helping a little. 

I had 4 week post tx pcr done yesterday, and have my fingers crossed, its really hard for me to imagine it is going to come back negative because I feel so horrible, I thought cured meant I would be feeling better, not worse than I ever felt. I had a pcr done at 8 weeks and my results were <15    My doctor said that was Undetected. I was freaked when I saw <15 to me that meant I still had a virus count.

Anyhow, are there many folks out here who do have SVR 12 and yet, felt as I do 4 weeks post tx?   I know that since I have had this for so long, its probably going to take years for my Liver to improve, but, just didnt expect to feel this horrible.

I am not trying to sound negative, but, its hard to imagine being cured when one feels this horrible. My Fibrosure test was Fibrosis 01-2?  Actually Fibrosis .23 to be exact. And I have had 2 biopsies in the past one Zero grading in 97 and one Fibrosis in 2005.

Any, input would be greatly appreciate, also, I am open to alternative supplements, so if anyone knows of anything that may help me feel better, I am all ears. I am taking Liver Optimizer by Jarrow (i used to take this before Harvoni (stopped it 2 months prior) I used to take it when I got Liver pains and it would take them away, Ive been taking it now, and its not even touching the Liver pains. Not sure whats up with that.

Sorry for such a long message. I am glad I found this very informative. Group.

[Mugwump]

I am starting to think that the people who were under a more pronounced level of attack at the time they commenced treatment are effected radically different than those whose immune system is currently keeping the virus in check.

The viral load level at commencement of treatment seems to be a poor indicator of how well the immune system is dealing with the infection. Indeed my GI, who is one of the most experienced in dealing with HCV in British Columbia told me years ago that viral load in the blood stream can be very misleading as to the level of ongoing damage being done to the liver currently.

My viral load was 3 mil at commencement but I felt like hell and knew that my liver was starting to fail in a hurry. 12 weeks after my first treatment that failed my liver panel was fine but my viral load was 11 million! So indeed the level of virus in the blood is only an indication of the fact that you are infected not how badly damaged the liver is or how fast the disease is progressing.

I felt like hell post Harvoni treatment as did many others including Mario, Katie and quite a few here. Others seem to have rebounded and had little post treatment troubles.

And yes many who felt terrible at end of treatment are now SVR 12 and have reached or are almost at SVR 24. So hang in there it will get better soon. When you get the UND post tx it is a boost to your spirit that will help you deal with the post treatment recovery more than anything else.

Like all things that effect the essential processes of the liver I urge caution especially when it comes to supplements. I found that a moderate balanced diet and some decent exercise was more helpful getting over treatment and dealing with the unexpected liver pains. My liver pain increased to a level very close to pre treatment and scared me at first. Mario also experienced this.

I thought that the virus had returned and was again killing me slowly like what happened after the first round of interferon based treatment in 2004.  I was in tears when I read the e-mail from my clinic informing me of my SVR 12 because until that day I was scared stiff!

I too was >15 at 4 weeks tx and UND at end of treatment, Katie and others were >15 detected at end of treatment then went on to SVR 12. So a >15 does not indicate that the virus has returned. The rate at which this horror of a disease replicates is scary so if you had a strong response your chances of clearing the virus completely are very high indeed.

Do what ever it takes to take your mind off the disease, I know I drove my poor wife crazy especially during the wait for test results... the fear and stress of uncertainty is hard to deal with BUT if the virus is either >15 or completely UND at end of treatment your chance of a full cure are better than 96%. I had to constantly remind myself of this just to get over the waiting and fear.

Hang in there and do what ever it takes to ease your mind until you get the test results is the best advice I can give.

Eric

[GLCII]

Anyhow, are there many folks out here who do have SVR 12 and yet, felt as I do 4 weeks post tx?   I know that since I have had this for so long, its probably going to take years for my Liver to improve, but, just didnt expect to feel this horrible.

Alot of it could be you're stressing yourself out waiting for your SVR4 to come back. Finishing Tx and then waiting those 4 weeks to find out if you're undetected or not can be "Very Very Stressful" and we all felt it, I think. There's a good chance that when you get your 4 week post test results back and see that you are Undetected, you'll probably start feeling better mentally & physically. It's sort of like that old saying:   

"Free your mind and your body will follow".   

[Katie]

.

Any, input would be greatly appreciate, also, I am open to alternative supplements, so if anyone knows of anything that may help me feel better, I am all ears. I am taking Liver Optimizer by Jarrow (i used to take this before Harvoni (stopped it 2 months prior) I used to take it when I got Liver pains and it would take them away, Ive been taking it now, and its not even touching the Liver pains. Not sure whats up with that.

Sorry for such a long message. I am glad I found this very informative. Group.

Hi Hope2becured,

Hopefully you have your results and are feeling better.  Check this thread out as many who are experiencing post treatment side effects commented on their issues.  I am almost 9 months post tx and still do not have the energy or endurance I had before treatment and I agree with you, for all my blood work to come back perfect indicating good health and to feel this terrible is worrisome.  However....I have improved greatly from 9 months ago.  It has just been a slow process for me so I remain hopeful and mostly positive this is temporary.  I have my SVR 24 and am confident that I am cured of Hep C.  That in itself is wonderful and I do have many benefits, some very subtle, from the treatment.  Hang in there and if you have any questions for me, just PM and I will be happy to answer anything I can.

Katie
http://forums.hepmag.com/index.php?topic=2053.new;topicseen#new