Post Harvoni Reduced Immunity (Page 2)
UpdatedI finished 8 weeks of Harvoni on April 8 and labs said HCV is undetected. My question is has anyone heard of "post-Harvoni reduced immunity" I came down with a bad case of the flu and doc thinks Harvoni may have caused reduced immunity. Any insights?
I took 24 weeks of Harvoni in 2015. Today is Feb. 3rd, 2018. I had a liver transplant in 2009. I took a boys liver that had Hepatitis but it was not active. I had two rejections right after transplant. The Hep C became active in 2013. I am thankful that i am cure of Hep C. However, i feel more fatigue and my ability to focus has been extremely affected. I have way less energy now than i had the first couple of years after transplant. I want to go back to work as a Realtor. Yet, i am very concern that i cannot hold down my job. I got huge floaters in my right eye. In my left eye i am already blind. My vision after the transplant and Harvoni has gone from 20/20 to 20/40.
Re: mariolina (# 12)
I am one year and a half post treatment Harvoni. Six months post treatment I have developed a severe chronic case of chronic idiopathic utacaria. HIVES, WELTS AND ANGIOEDEMA covering my entire body. Have been to dermatologist and immunologists was on 720mg extended release Allegra, Zantac, and steroids. After that treatment was not effective, I started a new drug Xoliar (originally developed for asthma, coincidentally found to help CIU chronic idiopathic utacaria) went for three shots, 300 mg each time, gained 15 pounds in 3 months, (now I know why they weighed me each time I came in for a shot) symptoms gradually subsided, but I chose not to continue. 1) the drastic weight gain, and I could not handle that. 2) when I asked RN how long will I need the shots for, her reply “no one has ever stopped them". This Xoliar is a new drug, like Harvoni. Side effects of Xoliar states “narrowing of blood vessels and arteries, leading to STROKE". UMMMM NO THANK YOU. so with having this drug lingering in my system, the CIU had subsided some, was only having to take 360mg of Allegra only, about every 12 hours. Well it’s been about six months without shot of Xoliar, and GOD help me the CIU has returned with a VENGENCE. IM TAKING Allegra 360mg almost every 6 to 8 hrs without complete relief. The immunologist said the CIU was AUTOIMMUNE, my bodies immune system attacking itself. And mind you, I’ve never had a welt or HIVE in my life. NOT EVEN mosquito bites.
When I was infected with Hep C, it’s like the mosquitoes weren’t attracted to me lol. Post Harvoni treatment mosquitoes still don’t want my blood, I’m ok with that.....but what the heck has happened to my immune system that HISTAMINE is being released at a rate that is uncontrollable, and my bodies defense mechanism is attacking itself. Of course, NO relation to Harvoni they say. I will add geno type 1b no previous treatment before Harvoni, no liver damage, basically experienced no symptoms from the Hep C, and found out I was carrying the virus by coincidence from routine blood work up in 2008. I’m ready to stretch my self to death, I’m an RN and it’s not a good thing when you’ve got open scratches from oneself digging to stop the chronic itching, and being around SICK people carrying some horrific disease that can potentially be spread to me....OF COURSE I protect my skin and use all the standard precautions when performing patient care. BUT I feel that I mentally and physically am at a BREAKING POINT. THOUGH MY story is different then those who experienced worsening skin reactions fro poison oak/ivy etc, it’s the IMMUNE RESPONSE we have in common....BUT LIKE I SAID, no doc will say it’s related to the Harvoni Treatment. I’m at a loss where to seek medical help, besides the ones who continually want me to invest / inj. potentially harmful drugs into my body. Any insight or feedback will be very helpful. THANKS.
I'm post 12 week Harvoni treatment as of June 27, 2017. I'm now extremely sensitive to certain fibers and have exzema patchs on my legs from slippers I've worn for 2 years. Before Harvoni, I hadn't had cold/flu/virus for over 3 years. Now I'm going my 2nd round with swollen throat glands, extreme sore throat and ear aches. In just 2 weeks and after steroids and antibiotics, I'm experiencing the same symptoms. Again, I am concerned that Harvoni messes up the immune system as well as causing inflammation in the body. I see, I am not alone. 65 y/o female, own/operate retail business and otherwise healthy as a horse...before the treatment.
Re: Dogman (# 15)
Okay! Update on my post. I had my bloodwork done in february for my 90 day check to see if my body has cleared the virus, and I am virus free! I am cured! My immune system seems to be functioning, and except for an extremely severy case if tendonitis in my right shoulder, and insomnia that won't relent, I'm doing well. No virus detected. I didn't finish the full 12 weeks of treatment that was recommended. I only got through 7 and a half weeks, but it was enough to kill the virus! WOO HOO!!!! I'm glad I stopped treatment when I did. It took me a month and a half to finally get the results of my bloodwork. The VA isn't very good about informing their patients about tests done there.
Re: Sb409us (# 5)
Hi, hope you still read these blogs. I found your experience really interesting. I'm in Aust hcv pos geno 3 still F1 fibro 7.2, not too bad considering I had the virus since the 70s i think. Recent blood tests showed an increase in my VL. It's been in mills for a long time. I recently had a flu vaccine which i've been told can increase VL. Anyway, my liver dr said dont worry about VL. He wants me to start epclusa next week. I think its the same as harvoni that you had, as i dont seem to be getting any real bad effects from hcv. I'm worried about starting new tx which could make me sick! I've recently been diagnosed with copd (emphasemia) that makes me feel really down. I dont know if my body would handle side effects on top of copd. What gets me is how confident drs are that there's no ill effects from new tx. Hope you get this. Thanks. Hope you're doing ok.
Hi Sam,
What I know so far is Harvoni does indeed affect the immune system. At the least it was originally developed during studies on HIV. As a side point I was looking up information on suing insurance companies for refusing to pay for Harvoni. It was a website of a lawyer dedicated to just that. In reading the posts people put on there, there were i think two posts about suing as I was looking for and to my surprise I found over 1500 different posts were people wanted to sue Harvoni for there loved ones die from one of three very aggressive cancers. Every post went something like this, my 'loved one' was had an in-depth physical that included checking for cancer so they took Harvoni for two or three months as directed by the doctor and was cured of hep c then within a year had health problems, got checked and were completely eat up with cancer and died within the next few weeks. Almost none of them had any symptoms of hep c before.
I also had an in-depth physical done and all was had a bullet proof immune system which I have proof of. I finished 90 days Harvoni, it made me extremely sick while on it. Got off and feel some better but not completely back to myself. That was like 3 months ago and now I'm having extreme problems with my Colon as in as in every symptom of colorectal cancer. Now the specialist is saying that I need a 3000.00 colonoscopy to know for sure. I did find a colonoscopy for 1500.00 but still can't afford that either. Now I'm trying to find another way somehow to get the colonoscopy instead of just waiting and seeing if it kills me or not.
Re: jim (# 26)
Jim..im on my 6th week of treatment in australia they call it epclusa first couple weeks i was ok then i got ringing in my ears then completly deaf in right ear that went away after a week.i dont like this med i feel like a guinea pig ,now my liver nurse says i have to do 12 weeks then wait 12 weeks to see if it worked.i also have copd or emphasemia i want to get my own dr to get a blood test organised to see if this stuff is working im 65yrs old always been healthy considering 70s lifestyle .dont reckon my liver nurse will want me to get update to see if it is working
I have had few old friends get sick after doing 12 weeks. Any ideas appreciated thanks
Why are they doing this ?its very hard for me to get straight answer from liver clinc all they can say is think how great u will feel just about lost my hearing3rd week it came back ears still ring livernurse said no way would it be caused by epclusa or harvoni im up to week 6 now andgettig worried why cant they do blood work on me now see if its even working before i poison myelf.im 65yrs old and felt ok pre treatment.
Have you tried turning off WiFi and all devices and lowering your exposure to electromagnetic and radio frequencies? You can call me crazy, but “flu like” is just one of many symptoms of this carcinogen. It won’t hurt to try. Good luck and God bless.
Re: Transfusion72 (# 2)
Same ol story. I agree. I have 20 mill VL. What else is the stuff doing? My liver nurse wont listen to anything i say. I really dont think they care.
Do i trust drug companies, no way.
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