Post Harvoni Reduced Immunity

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I 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?

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1

Hi Sam,

I have yet to come across any specific details on post-Harvoni immunity. However, in order to reach an accurate conclusion one must also take into consideration some other things that can impact one's level of immune function, such as: environmental factors, diet, mental/emotional health, etc, during and after the time frame of treatment.

Not sure if Harvoni is available in inj. form like similar medications are, but just as a side note - there was a study done by Rockefeller University, suggesting that the act of administering these types of medications via inj. reportedly increases what they call your "immune activation response" or chronic inflammation that is directly associated with "accelerated aging, cardiovascular, renal and liver disease as well as CNS dysfunction" - All of which sound like conditions that are directly related to a damaged/hindered immune system.

Ref: clinicaltrials.gov/ct2/show/NCT02347345

So depending on how Harvoni was being administered, that may be something to take into consideration as well.

Hope this helps!

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2

I would like to know what the HARVONI is killing besides the virus. I'm clean after 3 weeks of Harvoni. Told I still have to take for 2 more months....HOWEVER....again, if it killed 19 million viral load, what else is it doing to me?

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3

You mentioned Harvoni bring your Immune System down. I know when I checked all of the symptoms of taking Harvoni I honestly do not think it mentioned that. However it did say that you may get Flu Like symptoms. Perhaps go to the Harvoni Site or just ask on whatever Website you use. Type in Symptoms of taking Harvoni.

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4

My Doctor just told me yesterday that this Harvoni (which I am in my 2nd month of, with no virus detected) causes Heart Problems!!!!! The immunity issues are from having to stop all my supplements and vitamins while taking it. My question still has not been answered and I guess we will never know till it becomes "1-800 bad drug"

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5

I know this is an older thread, but sharing new info just in case someone still looks here. There are now cases of liver cancer post Harvoni. Most of these cases occur in people who previously had liver cancer, but not all. Researchers have stated that they think the reason may be indirectly connected to Harvoni's rapid depletion of the hep c virus. They think that the immune system might shut down too much too quickly after Harvoni treatment, reducing it's protective effects against cancer. I don't know if I buy this explanation, though. I just completed 8 weeks of Harvoni and had a terrible systemic reaction to poison oak. I have reacted before, but at the normal level, just at contact locations of the body. This time, according to my doctor, it was systemic and I had to take steroids. I then looked into it briefly and it seems that the immune system can go into overdrive during Harvoni treatment. This makes total sense in my case, but goes against the cause of cancer theory.

Also, I refused to stop taking certain supplements during treatment. I did stop any herbal supplements, though. The ones I took during treatment were a multivitamin, mineral complex, methylated b-complex, alpha-lipoic acid, fish oil (Omega 3), vitamin c powder (in morning smoothie) and a probiotic. The virus was not found at my 4 week labs. I just had my 8 week labs taken so will see if I am still in the clear. I took all supplements in the morning and the Harvoni at night. My side effects were minimal compared to what many others have reported.

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6

I am at the half way mark on Harvoni treatment. i haven't noticed any side effects at all.

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7

I am curious about this myself. My husband finished his Harvoni treatment last April as well. He has always been extremely healthy and fit, but 4 days ago came down with the flu virus and has been flat on his back since. He never got the flu in previous years. Although I am very greatful that the Hep C is gone I am just concerned his immune system was tanked by the treatment.

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8

I don't know exactly but I can say that for 2 years after being cured with Harvoni, I suffered from several shingles outbreaks and simple cuts would get seriously infected. My immune system seems to be recovering slowly after 2 1/2 years. I did see someone post about ringing in their ears. I have had this since tx but never connected the two assuming that something else caused it. However, I wouldn't change my decision to take Harvoni..some many other things have gotten better.

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9

Since I finished the Harvoni treatment last year I've come down with the flu 3 times and each time it's been devastating. Really sick for a real long time. I'm getting sick with nobody else around me is.

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10

I finished my harvoni treatment in May 2016 an 8 week treatment. In January and July 2017 I had some strange form of stomach flu. Bad left side pain for one day followed by high fever 102-104 for 3 days then diarrhea for 3 more. I was down 10 days!! Never had this before!! In between these I had a virus in February 2017. and in April 2017 I woke up one morning with sudden hearing loss, vertigo and ringing in my right ear!! Now thyroid issues!! I am in my 50's but curious about all this happening so fast!!

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11

Hello,
I just started harvoni 2 weeks ago and at the beginning everything was going okay but my children are in school and they came home with some kind of virus which then transferred to me and after having a virus that kept me in bed for 3 days it then turned into pneumonia. I have not been sick in 20 years and I do now know that harvoni lowers your immune system significantly and I am just hoping that I don't have to deal with this much longer ....... but you have to take the good with the bad, if you want to get rid of hep C then I guess I have to be sick for a few weeks and I can take that it's just difficult because I have to run our family business and take care of 4 children which makes this very difficult. I am still hopeful and positive that I will get through this with flying colors! I have not noticed any additional side effects as of yet and will definitely post back once I get my results of my first viral load.

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12

Re: Sb409us (# 5) Expand Referenced Message


It was interesting to read about your reaction to poison oak while on Harvoni. I had a similar exaggerated reaction to a few ordinary mosquito bites a few weeks into my treatment. It was the same severity as a bad case of poison ivy, which I've had a few times. I had huge welts on my legs and feet where I was bitten and itching so severe that I called a hospital emergency line. (It happened on a weekend). The doctor on call (who was not a dermatologist and who didn't see the bites) said I must have a case of contact dermatitis and didn't believe that it could be caused by the Harvoni. I am certain that it was because I knew that I had not come into contact with anything that could have caused it and I've never had a serious reaction to mosquito bites. I was absolutely miserable for nearly a week. The problem with drug/immune reactions like these is that if the caretaker doesn't take you seriously, the problem never gets reported.

I hope you see this since it's been a while since your post, but maybe the info will be useful to someone else.

Hope you're in good health!

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Re: Sb409us (# 5) Expand Referenced Message

I just finished my last tablet of Ledipasvir-Sofosbuvir 90 mg/400 mg, today, Hooray!!! My labs show my liver enzymes all within normal ranges and I will be checking my viral load next week. I also took probiotics and similar supplements and my side effects were pretty minimal :) I have had multiple outbreaks of shingles during my treatment, more than usual, but it has been worth it!!! The next treatment I take will be for the Shingles.

I was unable to afford the USA Ledipasvir-Sofosbuvir 90 mg/400 mg (Harvoni), so I purchased my medication from Care Exim, in India: 28 pills @ $300 vs $1,125 per pill. Gilead has allowed India to produce Ledipasvir-Sofosbuvir 90 mg/400 mg at a fraction of the cost and!!! I communicated through email, as it was hard to understand them, but they were great to work with :) I highly recommend the treatment and also using Care Exim, in India, if the cost is high in the USA :)

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Re: Hazel (# 10) Expand Referenced Message

My thyroid is going hyperthyroidism, I have sore tongue, all my joints hurt, starting to not be able to walk because of foot pain. I'm having rashes and blisters on the bottom of my feet. I can't sleep. Almost 19 months post Harvoni. My body is feeling bad.

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15

I had to stop harvoni at 7 and a half weeks. Started out well. Felt great for 5 weeks in, but at 6 weeks in I became dizzy and started having brain fog with personality changes. Depression went into overdrive, and I started having a fever. At the 7 and one half week mark, I had a high fever that put me in bed for over 12 hours. I stopped taking harvoni at that point. The doctor isn't very sympathetic. I carried a low grade fever for most of that week, but the next week was a pure nightmare! The fever kept getting higher each day. I think the highest I recorded was 104. And after 6 days of debilitating fever, it broke, and I felt better than I have in years! Still, I kinda wish I had never taken this drug. I don't know what happened to my body from this drug, because my body kinda feels numb. I don't get sick. I don't get fevers. The last time I had flu was 1985, and before that was 1967. Harvoni has done something to me, and it's just a matter of time before I find out what it did to me. I know my viral load cannot be found at this point, but my next blood evaluation will tell the tale. My blood pressure is normal, and has been since the fever went away, so I havent had to take my blood pressure medication in about a week now. I still feel pretty good though. I hope it lasts.

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16

I successfully completed treatment December 2016. In the last year I have had the flu 3 times in which I ran high fevers. I am just on the tail end of the 3rd where I ran a 102.7 temp. Prior to treatment, I have had the flu maybe 3 times in 15 years. I also had a severe reaction to mosquito bites this summer. Large welts. I found this site because I was looking to see if others have had the same issues.

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17

No you aren't the only one who experienced reduced immunity from Harvoni. I did too. Got sick twice. Both times were bad. I also had additional sides such as: intensified back pain, terrible insomnia, new muscle spasms and nerve pain, as well as one 2 month long migraine that never let up. BTW, my thyroid is now very high, was always normal before. My primary agrees there's a connection between my immune problems and Harvoni, but I have no support from my GI. He just says: NOPE, NOPE, NOPE, NO WAY JOSE!!!

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18

Oh, and I finished Harvoni 3 mos. ago. I have strange pains through the wrists also as a side note. I know we who experience these weird sides are of a minority, but should not be discounted as coo coos.

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Re: Kim (# 14) Expand Referenced Message

I can relate to you. My thyroid is very high, in the hypothyroidism category, so I was glad to find someone else who has this. My thyroid was normal before Harvoni, so there's a connection. While my primary agrees, my does not, and won't support me, and I don't know how to go about finding the help I need.

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20

I finished my 12 week Harvoni treatment over 2 years ago and have always had a strong immune system and never even got cold and rarely ever sick. Since finishing Harvoni I have some strange symptoms. Mosquitoes bite me now and they never did before. I got severe folliculitis of my scalp for unknown reason and had to take antibiotics. I was just diagnosed with microscopic colts which is an inflammatory bowel disorder and I have never had any intestinal problems before. Today I was just diagnosed with a chronic inflammation of my external private parts that I have never had and have to use a strong prescription cream. My eyes are red and irritated and the ophthalmologist said they are very dry and I am hardly producing tears and my tear ducts are very small. I am just saying that my body seems to just be inflamed all over. I also have two small red, raised patches of skin on my torso that will not go away with cortisone cream. I used to be able to brag how I never even got a cold and that mosquitoes never bit me, but that has changed since the Harvoni. My GYN who treated my external groin inflammation commented that drugs like Harvoni mess with your immune system but it is hard to find any real clinical literature. All these problems would not have stopped me from taking the Harvoni though. I think the Hep C is much worse than all of these more minor issues.

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Re: Transfusion72 (# 2) Expand Referenced Message

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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29

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.

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28

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.

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27

Re: jim (# 26) Expand Referenced Message

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

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26

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.

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25

Re: Sb409us (# 5) Expand Referenced Message

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.

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Re: Dogman (# 15) Expand Referenced Message

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.

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23

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.

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Re: mariolina (# 12) Expand Referenced Message

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.

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21

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.

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