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11649518 tn?1425144060

Harvoni side effects at 4th week

I found this place and read quite a few posts that others have placed. So I joined. I should have kept a journal starting on day one of taking the Harvoni, but I didn't. My fault.
One of the biggest problems I've had with taking Harvoni is the spaciness. I'm 57 this year and I thought being spacy was just cuz I'm getting older. NOPE ! Harvoni is causing me to forget constantly. I walk into a room and cannot remember why I'm there, or be talking to someone and completely loose the thread of the conversation. That's on top of the fatigue (all I want to do is sleep), headache (hadn't had one in 6 yrs) and aching worse than I then I ever have before. Here I thought that the arthritis, fibromyalgia and various pain and problems from multiple surgery's was bad enough. One of the main problems I have had from Hep C is the fact I have to take water pills like crazy. Partly from Hep C side effects (liver not making the right stuff to get my kidneys to work well) and bad veins in my legs, my legs and waist balloon with pounds and pounds of water. And my liver Dr. told me to quit taking it for now, so I am forced to lay in bed a lot. Luckily we have a Craftmatic Adjustable Bed, so I can raise my feet above my heart and get as much water out of my lower half as I can.
In 1988 when I got Hep C (blood from a hysterectomy) I didn't know I had it (famous last words) But I didn't find out till I dislocated my hip in 1996 and the rumatologist asked me about my symptoms and tested me for Hep C. So, I ran to U of WA, (who was the leader for Hep C research then) got talked into a biopsy without pain meds (WRONG) and they came back and told me that I had the liver of an 80yr old alcoholic (I didn't and don't drink) and if I didn't get a transplant ASAP I had 6 months to live. I didn't have health ins. then, so I started researching for myself. I started on a good diet, lots of vitamins and Milk Thistle (which I know kept me alive all this time). I searched for years to get on a clinical trials, but the only thing they wanted to get me on was the Interferon (No way was I gonna do THAT after I lost 3 friends to it). So now they finally come out with this new medicine that almost guarantees (95%) that the Hep C will be gone in 12 weeks and now that I have ins. I'm able to take it.
I go to Seattle on Wed. (My 4th week) to get a blood draw to see how the Harvoni is working on the Hep C. To tell you the truth, I'm scared to death. Everything I have tried to do to take care of myself has been an up hill battle to end all battles. I'm sure we all have looked in the mirror (after starting this) and wondered if "I'll" be one of the 5% that it doesn't work for. Like my hubby says "It's like a cancer patient who suddenly gets a magic pill", it's just too hard to believe.
So, now that you know a bit about me and what I am going thru right now. PLEASE please plz does anyone have any suggestions ? or idea's for handling these side effects ? I'll appreciate any and all replies. Hope you all had a Gr8 Holiday and I that we ALL are in the 95% category.
Thank you,
SpiderGypsy

31 Responses
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Avatar universal
Start exercising,and if you already are increase it.Join a gym and do cardio.Dont worry about lifting any weights.The cardio will help keep your mind sharp and the rest of your body will benefit too.Exercise is very beneficial when on treatment.
                                              Good Luck
Helpful - 0
11649518 tn?1425144060
Thanks for all the info. I was writing all about everything (LOL) and I lost my internet connection for a minute and I think I lost it all. BUMMER !! But, just to let you know I'm back on the furosemide and spironolactone and slowly losing the 30 lbs of water weight that climbed on board (from the waist down, yuck). I copied all the info that I was reading before I lost the internet, so I will try to read it tomorrow. It's 1 am now and I'm hurting so bad I need to lay down and maybe (if I'm lucky) get some sleep.
If all else fails, I will be back on here when I get the results of the blood test they did on Wed. I've got to call Harborview on Wed.
Thanks again for your info and caring. Take care Spider  
Helpful - 0
317787 tn?1473358451
P.S. Koko is so right, try to control your thoughts.  I let mine get away from me and thank God my husband was here to tell me I was in charge, not my feelings.  It might sound silly but it helped me get to all my doctor appointments when I didn't "feel" like going
My best, Dee
Helpful - 0
317787 tn?1473358451
Hey there, since you just started noticing the "spaciness" I would say it is the medication.  Even though interferon is not involved it still has to be a heavy duty drug to kill the virus.
I would say the best thing you can do is to assume, for you, it is a side effect of the treatment.
I know in the past when people would try to find out what was happening when they were on tx others would say it had nothing to do with the medication.  Over the years it was discovered that we are all individuals and react differently to every medication.
The positive is that it is a much shorter time period than in the past so will soon be over.  In the past the SOC was only about 40% so this is really good for all.
Like Lynn said try to drink water, water is really important during all of these treatments.  Dehydration can add to mental and physical effects.
Take care, be kind to yourself, rest, hydrate
Dee
Helpful - 0
Avatar universal
PS your 'hubby' is right about the magic pill seeming too good to be true. It too can be amazingly difficult to adjust to mentally, of being on treatment to kill the virus. To think you get a shot at life. It's a whole new train of thought and can be overwhelming. Not many talk about the emotional and psychological aspect of going through treatment for the 'cure'.
***The most important thing is to take control of your thoughts and stay positive.*** Think in terms that you will be one of the 95% to clear the virus.
We have all been through so much with this disease. It's time to kill it. 2015 is the year where many get cured. You have a 95% chance of being rid of it this year.
Helpful - 0
Avatar universal
If you are experiencing this as a side effect from the treatment there is probably nothing you can do short of sipping water all day, take probiotics, eat a good diet, take it easy and ride it out until EOT. Otherwise the "forgetful confusion" is a symptom of the viral damage done to the liver and spleen. Severe confusion in some circumstances means a need trip to the ER to check for ensuing bleed out.

Notice forgetfulness, like drawing a complete blank, is associated with fatigue too. The moment you feel a wave of heavy fatigue you forget what the heck you were doing or saying. You'll have to focus more and then try to determine what you think it's from.

It happens to the best of us and if I I lose my train of thought I ask the other person what I was saying or doing... It's difficult to accept but it is what it is.
One time on treatment I went to the store and had to call home to ask why I was at the store... I just laugh it off.

Things are clearer weeks after EOT and gets better as the exhaustion leaves little by little.
Helpful - 0
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