Author Topic: Harvoni and Neurological side effects, please help (Read 33584 times)

Nicola000 · « **on:** July 13, 2016, 10:28:48 pm »

Hi
This is my first post, but I have been reading for several weeks and there seems to be a wealth of information here. I have a dilemma and wonder if anyone can assist me.
I am on day 18 of Harvoni. I was slammed by side effects from the beginning, just the regular stuff like bad headache and 11 days of cognitive impairment, which has now gone.
The disturbing part is that on day 5 my left foot went numb and has stayed that way. As a result (i think) I have developed drop foot, so am limping.
Two of my fingers also lost sensation, but that comes and goes as well as facial spasms that also come and go.
My specialist looked long and hard into it and there is nothing out there of this occurring before, yet I have read smatterings of similar sides on this forum but without outcomes or details of what happened.
Several professors from the leading hospitals were consulted and the end result is that they dont know and its my choice whether to risk continuing.
To make matters worse, I fell down the stairs at home (thanks to old drop foot) and the numb foot is injured, blue and swollen, bruised ribs and I am basically a mess. Its hard to tell if the numbness has gone or not due to the injury.
As you can imagine, this has taken a huge emotional toll as well so I am having trouble making a rational decision about this.
So, on doctors advice I missed my tablet yesterday, but have gone back on today and watch and wait for a week. If the numbness goes not improve then I am to go off it, which you can understand is a major disappointment.Also so difficult to tell if it is numb or not now that I am injured.
Does anyone out there have any experience with this ? It is some sort of neuropathy, but there is no pain, just numb and weird sensations.
FYI, it has been reported to the authorities and Gilliard.
I have had Hep C for 30 years from an incident when I was a young idiot, but have not been symptomatic and no fibrosis.
I was actually fine until I started on this.
I am afraid of permamant nerve damage... I know I am lucky not to be ill, but dont feel too lucky this week. In fact, I feel sick to my stomach about it all and very confused.
Thank you, in advance
Nicola

AussieRosa · « **Reply #1 on:** July 14, 2016, 05:02:46 am »

Hi, Nicola.
I don't know anything related to the problem you're describing, but I just wanted to say I hope it resolves itself soon. It would be a shame if you had to end your treatment, but you certainly have reason to be worried about such strange symptoms. Hopefully, like you said, it's just a result of the injury now and once that starts to heal the symptoms will disappear.

Have you tried searching the forum for the words numb, numbness or neurological to see if you can find any other references to anything like this? Hopefully someone else will be along soon who can add something further. Best of luck, and please keep us updated on how this turns out.

hummingbird57 · « **Reply #2 on:** July 14, 2016, 08:39:40 am »

Hi Nicola -

I'm pretty new to the forum as well. I started treatment with Harvoni on 7/3. Over the last few years, although i was also asymptomatic with no detectable damage to my liver after 40 years of infection, I had (and am wiggling them now as I write this) and still have continuous tingling and numbness in my toes and sometimes in my fingers. Physical therapy for "tennis elbow" although I don't play tennis; emergency room last month for tendinitis in a knee - cause of injury unknown. Neither Dr. knew of my hepatitis c and probably wouldn't have been knowledgeable of the the odd aches and pains it can produce as time progresses. I didn't associate those pop up pains with the virus moving around in my body as it pleases.

I've had a couple "strange" days in my 12 days of treatment. Only you and your professional team can make the call. It would be a shame to end your treatment. I just move slower, more carefully as needed. The dog gets a walk instead of a run for a couple months. I pace myself and look forward to the day that we go for the run.

Best wishes and let us know how you're doing -

Beth

Nicola000 · « **Reply #3 on:** July 14, 2016, 08:08:04 pm »

Hi Thanks to both of you for the replies and suggestions.
Yes Beth, that makes more sense than anything else I have heard so far. It also brings up a few recent memories of unexplained injuries that have occurred.
It was comforting that you had numbness and that you have continued on Harvoni.
I am back on and pretty determined to continue. I think it would be shattering to have to come off at this point.
My foot is so swollen and blue that I have no idea what is happening with the numbness, although my fingers are back to normal.
I am going to the doctors AGAIN this morning to make sure my foot is not broken as I still cannot walk. God I hope its not, I really cant deal with that right now and I have a young child to care for.
Thanks again for the support, much appreciated.
Nicola

Raney · « **Reply #4 on:** July 16, 2016, 11:45:54 am »

Nicola, I am experiencing the same thing, but am on sovaldi & ribivarin. I seemed to have a disk injury out of no where and my sciatic nerve is pinched. They think I may need surgery to fix my l4 or l5. Crazy but my leg feels like you explained, drop foot. Pains shoot down my left leg when I walk or stand up.

Has your leg or the symptoms gotten any better?? I am 35 days in to 12 weeks tx. I start a new job aug 4. I can't go on like this . .

Nicola000 · « **Reply #5 on:** July 17, 2016, 12:16:28 am »

Hi,
Thanks so much for your answer. I dont wish this on anyone, but it is comforting that I am not the only one.
It turns out my fall due to drop foot has resulted in my foot being broken in 3 places. I have bruised ribs and my arm is a mess. I am in a plastercast and in a wheelchair.
Possible surgery if this doesnt work.
My guilt at the disruption to my family is just appalling.

Now that I am in a cast, I cant tell how the numbness is going, but I know my toe is still numb as it is outside of the cast.
My life has completely imploded. I am looking at losing my clients (I work for myself ) and spending the next 8 weeks staring at the wall.
I also dont know how I am going to do this. I was an emotionally stable, happy person only a few weeks ago. I am afraid of what will happen to me next.
I am still taking the f***** harvoni, as I dont want all of this to be for nothing. I think its day 21 now.

I wonder what the deal is with this though. My specialists were baffled as to how Harvoni could cause this. I know it did though as it came on in day 5, and right from the first day I remember my face went numb, then it went away.
I thought I was imagining things......oh I wish !!

Please le tme know how you are going. Hopefully this will all go away for us when we go off the meds.
One positive thing, since day 5, the nerve side effects are definetly not worse so it doesnt seem to be progressing. My numb fingers have sensation back as well.

I am sorry for your pain, and appreciate your reply more than you can imagine. I was having a real moment of despar when I found your reply.

Nicola

BillT · « **Reply #6 on:** July 17, 2016, 10:27:23 am »

Hi Nicola and welcome,
I'm sorry to hear you're having problems.Drink a lot of water for the headaches.The brain fog seems to happen at the beginning of that treatment and seems to last for a few weeks before it lifts.As for the other problems contact Gilead and speak with them.Maybe they know whats going on and can give you some help.One other thing to keep in mind is that Gileads drug Epclusa has been approved so if you need to come off of the Harvoni you have another option.Good luck and keep us posted.

Luna7 · « **Reply #7 on:** July 17, 2016, 12:43:30 pm »

Hi Nicola & Raney -- I've got some of the same issues with joint problems.

Reading various HCV forums I sure see a lot of people complaining about joint problems that either began or became worse during or after treatment. I'm not convinced that the DAA's caused the problems however, but believe it's possible. I had minor problems with joints that became much worse during treatment, but they seem to be subsiding now though still give me trouble.
HCV causes inflammation no doubt, and when the inflammation lessens (during HCV treatment) then bones attempt to heal by layering on hard bone (or something) where healthy cartilage used to be (at least this is the traditional medical view of osteoarthritis). I've got a knee that hurts like hell when I bend it, and produces a loud clicking sound and resistance before the 'pop'.
The pain is lessened when my lower back is more in alignment, so this could be a major key to fixing this problem too.

The sciatica and lower back injury -- I know when that injury happened. I was carrying some groceries in plastic sacks up some stairs, and was not supporting the weight with my arm muscles but instead had it transferred to my back as the sacks swung quite a ways away from my body. I felt the twinge in my back immediately, and now feel a buzzing in my entire leg at times and pain in my lower back. I think this relates to the knee pain too.
Now when I carry anything I make sure it's close to my body and that my arms are supporting the weight instead of my back.
It's best for me to avoid any kind of physical work when not in a strong mental state, as I was exhausted, depressed, and feeling ill from the HCV at the time this accident occurred and not holding my body properly.
Also, I'm strengthening my stomach muscles and feel a need to do some core strengthening through Tai Chi. And I will stop avoiding those walks! I'm also paying more attention to my posture when sitting. I've been reading that extra water helps joint and disc problems so keeping up on that even though my treatment has ceased.

I'm doing more research on cartilage, and sciatica/pinched nerves and might make a trip to the chiro too (this guy is really good and might even have some nutritional advice and supplements to help with cartilage healing too).
Surgery is something I want to try and avoid, especially after seeing all the mistakes made in medical establishments (just returned from my daughter's surgery). Not that I condemn the medical establishment, and I know I'd probably make worse mistakes -- it's just human problems that are unavoidable in most cases due to the problems inherent with communication. CAUTION:never leave a loved one alone in a hospital.
Plus, regarding avoiding surgery, why fix something through surgery when the causes of the injury remain and so tend to recur.

Anyway, sending out positive thoughts for our healing, and let me know if you find anything that helps along the way...

Luna7 · « **Reply #8 on:** July 17, 2016, 12:46:54 pm »

Just for the record, I only took the Sovaldi (but not the ledispasvir) that is part of Harvoni.

Raney · « **Reply #9 on:** July 17, 2016, 01:22:34 pm »

Thank you Luna. I used to think it was just my age and wear and tear but I'm starting to see these joint issues come up more. Thank you for the input.

& Nicola, Bruised ribs broken foot etc. I'm sorry that so much is hurting you at once. I will keep you in my thoughts. Inbox me anytime.

beto · « **Reply #10 on:** July 17, 2016, 03:14:50 pm »

Hey Nicola,

So,so sorry for your struggles. Has your physicians run an "enhanced" brain and neck MRI? Might be wise to rule out some things. Peripheral neuropathy is not uncommon for heppers and those on the meds, however...what you are experiencing...wow and sudden onset also. Auto immune test might be a good idea to discuss with the medical team. In the meantime you are at least supported here on the forum. I pray they find a source and you find relief. Peace

Nicola000 · « **Reply #11 on:** July 22, 2016, 09:47:44 pm »

Hi
I found out yesterday that I dont need surgery on my broken foot thank god.
I am in a cast for another 5 weeks. My sore ribs are indeed broken, so I am in a wheelchair for those 5 weeks, crawling to the toilet and shower.
When the doctor changes the cast, I quickly checked for numbness in my foot before they put the new cast on.
Its hard to tell, but I think the numbness was less. The numbness in my fingers has gone.
I wont know if I still have drop foot for months, until I start walking normally again.
Sometimes, I am filled with cold fear, that I am still taking Harvoni and causing neurological damage.
I finish the first bottle today, I really want to continue but there is so long to go (8 weeks).
I have also developed a nasty blister like rash in skin creases throughout my body. I read on this forum it has happended to others. No big deal, but it does not comfort me that my body doesnt like this medication at all.
Talk about paying the piper ! I feel like I am in a living nightmare.
My husband has to do everything for our son and myself. I am beginning to feel really bad about myself.
I am a health professional, and have been unable to work, which doesnt help either.
There is so much time to think. I am unable to leave the house.
Sorry for the whinge session, just needed to vent and seek opinions over whether I am silly to continue with this medication. I dont have any liver damage, but am aware that this can change.
Thanks to all that replied earlier last week.
Nicola

KimInTheForest · « **Reply #12 on:** July 22, 2016, 10:45:46 pm »

Hi Nicola. This is the place to come for whinge sessions! So no need to apologize.

Sorry to hear about the severe problems you are having. At least no surgery on broken foot. That's good news.

About the rash... in my case, I found the best way to control it was to keep the skin very clean and dry, not moist. I was putting potato starch on my skin wherever the rash was because that is all I had on hand to keep the skin dry. It worked really well for me. However, almost everyone else here has said that using moisturizer is what has helped them. So... different strokes for different folks.

Hang in there.

kim

AussieRosa · « **Reply #13 on:** July 23, 2016, 10:21:54 am »

Nicola, I'm so sorry to hear you're struggling so much with health problems that could be related to treatment. I was lucky that I only had commonly experienced symptoms. Having weird and unusual neurological symptoms must be very scary as well as debilitating. I only hope you manage to hang in there for the length of your treatment to make it all worth while and get cured. Please don't feel bad about venting and whinging here. We are all here for you, so please use the forum and keep us posted on what is happening. Wishing you all the very best!

hummingbird57 · « **Reply #14 on:** July 25, 2016, 07:46:00 am »

Nicola - fell asleep last night logged in! Hope you are feeling better and on the mend. You must have much needed family support and very fortunate for that. Not requiring surgery is a load of your shoulders.

The toe and finger numbness may come and go but the virus is getting killed and flushed out of your body. These drugs are such miracles.

You're in my thoughts.

Nicola000 · « **Reply #15 on:** August 03, 2016, 11:25:51 pm »

Hi
6th week of harvoni and 3rd week in a wheelchair.
I have now been hit by crippling vertigo dizziness to the point of near fainting ALL OF THE TIME.
. I am completely unable to function now.
My doctors dont believe the latest dides are due to Harnoni. I wish they were right but I dont thknk so.
My blood work is perfect and virus is indetectabke.
My life however is wrecked.
Anybody out there have really bad vertigo ?
Did it go away ?
I cant be like this. I may have to come off.
Thanks
Nicola

Raney · « **Reply #16 on:** August 03, 2016, 11:44:27 pm »

Nicola, so very sorry you are still going through these ailments. In my opinion, you only have a few more weeks left and the medicine itself takes awhile to get out of your system. I almost threw the towel in a week or so ago. I went from crawling on my hands n knees for 4 days, to walking hunched in half almost, bedridden for those 2 + weeks, to now...I can finally walk upright with slight ache in my tailbone. MRI shows l3 l4, l4 l5, l5 s1 bulging disks. I took ibu 800 for pain. Flexeril for spasms and soaked in epsom salts 3x a day for 3 weeks straight. I finally took a shower about a week ago, as my leg is finally strong enough & the pins n needles are gone. I also up'd my water intake...disks love water, & bought bottles of the pre-made green smoothie drink, to get the nutrients in my body.

I'm not sure how it alleviated but, my point is: don't give up .. It was unbearable for me too for almost 3 weeks. I got depressed thinking "is this my life now?" I was ready to give up the meds. I prayed to God every night for strength. Now, I'm 90% better. No surgery, no injections, just hang in there please. I know it's easier said than done but I have 4 weeks left on riba & sovaldi tx and am glad I didn't give up. I'd be kicking myself in the butt right now. I know I do not feel your personal pain, but I get it. My pain was a 15 .. 23 hours a day. Rest, put ice on your hip, epsom salt baths, heating pads too, pillow between your knees, water & patience. Don't give in before the miracle happens. Feel better. Drea

Raney · « **Reply #17 on:** August 03, 2016, 11:49:21 pm »

& re: the vertigo... The body tells us things in different ways. Try smoothies. Try fruit. Try veggies. Only drink water for a couple days. Sometimes our body lacks nutrients. I am positive our bodies nutrition gets depleted when we put these agressive meds in us. Dietary nutrients keeps the body going.

AussieRosa · « **Reply #18 on:** August 04, 2016, 01:18:59 am »

Nicola, I'm so sorry to hear how much you are suffering right now. I know constant pain and illness wear a person down both physically and mentally. I wish I had the words to help you. If you can, try to stay on the treatment as long as possible to give yourself the best chance of beating the virus. Don't let all of this have been for nothing, if you can. Wishing you relief and peace.

Raney, so very glad to hear you've turned the corner at last. You're on your way to beating the virus and that is the achievement of a lifetime. All the best.

Nicola000 · « **Reply #19 on:** August 04, 2016, 07:52:43 pm »

Hi Raney and Rosa, thanks for your replies.
I really needed that encouragement yesterday. You helped a lot.
I want to keep going with the Harvoni, and I will dig deep and keep going.

One question though. I have read eslewhere that the difference between 8 weeks and 12 weeks is only 2% for a cure. Is that right ?
As I am on week 6, it might help me psychologically if I felt I had an escape hatch in 2 weeks.
An extra 2% for 4 additonal weeks of hell doesnt sound worth it.
Of course I may improve (I feel less dizzy today), but it would be good to know.

I have also read scarey stuff on the post treatment section that people dont feel better when they cease Harvoni.
Is this right ? Did anyone out there feel better after the course finished ?

I am pleased you feel a bit better Raney. It sounds like you had to dig pretty deep too!
Thanks
Nicola

KimInTheForest · « **Reply #20 on:** August 04, 2016, 08:07:06 pm »

Hi Nicola. It sounds like you are going through hell with this. I too would encourage you to hang on for as long as you can. But I certainly understand the dilemma of taking something that is causing you so much disruption and pain.

As for the 2% benefit of taking Harvoni for 12 weeks instead of 8... I had not heard that. I thought the success rate for 12 weeks vs 8 was quite a bit higher. But if you find an article that says it is just 2%, please post that. I and others would be interested I am sure.

What genotype are you? Geno 1b can, in some cases, take the Harvoni for just 8 weeks without reducing their chances of cure. Maybe that is what the 2% referred to. Are you 1b? If you are 1b with a starting viral load of less than 6 million, and treatment naive, then I think 8 weeks is something you can consider. But discuss with your doctor of course. If you are Geno 1a, then I think the full 12 weeks is needed for best odds of cure.

(I have a friend who was 1b and was cured with 8 weeks of Harvoni.)

kim

crabby old guy · « **Reply #21 on:** August 05, 2016, 01:07:43 am »

Nicola, You may want to find out what ur ins would do if you stop early, if by some chance you would relapse in the future would they cover another round of txt. I'm on the solvoldi txt for 24 wks and the sides are still really shitty, then I found out the ins recommended 24 wks instead of the 12 I was originally told, I was undetected on 4-29 the doc said if I used their pharmacy I would be done in 12 wks. She than told me they can't make me take the meds but if I were to relapse ins wouldn't cover the second time. The good news is that on wed she told me I can stop the riba because of how bad the sides are. 29 more days to go! I had the vertigo but only for 2 days, just layed on the couch.

Nicola000 · « **Reply #22 on:** August 05, 2016, 01:25:19 am »

Hi
Yes Kim 1b. Treatment naieve. I dont know my viral load.
Yes Crabby good point. I am Australian so it is provided through government health. However I doublt if they would give me a second chance at it as it is heavily subsidised. I am grateful but that is over ridden with pain at times
Dont get me wrong though. I am going to try and stay in it. Coming on here really helps.
The accident I had was partially due to my harvoni neuropathy but also due to the glass of water in my hand and mobile phone in the other hand when i fell down the stairs. Careful with the water glass people!
;;
I just seem to have had bad luck combined with being slayed by every bloody side effect and then some.
I feel vulnerable due to immobility and afraid if whats coming next. I already fear the Harvoni hangover.
Am trying to keep going.. 6 weeks to go......

Thanks

Nicola000 · « **Reply #23 on:** August 16, 2016, 08:44:01 pm »

Hi all
Am now in week 8 of Harvoni. I have basically been ill to the point of dysfunction for the entire time.
Week 8 is headache nausea crushing fatigue and dizzy.Am not sure if the neuropathy is gone until I get the leg cast off next week.
I am starting to get angry. Why was this sold to me as a miracle drug. Its not.
Yes it is working but if I had known this even MIGHT happen I could have planned it so I wouldnt lose my business and a host of othet issues that have occurred.
I am truly frightened that these side effects will last well beyond treatment.
The reading I have done is not comforting. Was anyone else who was severely affected bettet after treatment ?
I do not want to scare others as I know most people are fine. But I think I would have liked to have known there was a possibility of this occurring so I could have prepared.
Thanks

crabby old guy · « **Reply #24 on:** August 16, 2016, 10:32:53 pm »

Nicola, Theres a life after treatment thread on here, I've been reading a lot of things said, looks like everyone is different, I've got 17 more days but I'm looking at that day as the end of meds, I'm telling myself not to expect feeling any different till at least Dec.

My doc was a lying B, looked me right in the eye and said there are almost no sides, then went from 12wks to 24. My opinion is they should have a shrink or a hep specialist as part of treatment before you start and explain everything that can happen and how to deal with it, instead of waiting till you start taking the meds and than calling on the phone. Hang in there!

Nicola000 · « **Reply #25 on:** August 16, 2016, 11:49:53 pm »

Yes Crabby
Thats exactly what I am getting at.
I appreciate the treatment and that it is working.
Ii is that I was not given the facts about the risk I took in starting on Harvoni.This is not a bloody slight headache.
Also some doctors have been dismissive and I have felt they were sceptical about how severe this is.
I am cross thst I was not informed that it is such a new drug that they dont know the origin of side effects or when ir if it will stop. I wasnt told that it was so new that I am just left to my own devices to manage this situation.
I am tired of hearing that they have never heard of this and that symptom before. REALLY ? Thats your medical opinion ?
I like your idea. Some sort of support would have been invaluable.
Maybe I just have to move the goal posts like you say and aim to feel better by the end of the year.
Thanks for your reply.

AussieRosa · « **Reply #26 on:** August 17, 2016, 07:52:31 am »

Nicola, I'm so sorry you're having such a hard time with this treatment. It really sucks the way doctors band together and play ignorant (or actually are ignorant) of all the side effects people can experience with these drugs. It certainly doesn't help at all when issues are not acknowledged. I hope things settle down for you and you manage to complete treatment successfully. All the best.

dragonslayer · « **Reply #27 on:** August 17, 2016, 03:19:50 pm »

It sucks that some of you are going through such tough times with Harvoni.. But some of these conspiracy theories are a bit much... I dont believe that the medical professionals are 'banding together' to keep you in the dark, and pull the wool over your eyes.... If you examine the studies, youll find the kinds of severe side effects being expressed here are almost as rare as the failure rates. They happen, but not frequently enough start warning patients off the drugs. Far, Far more people who have taken harvoni experience only the mildest of ill effects. Obviously, the reason there seem to be so many such reports on forums like these is because the ill effects are aggregated; such is the nature of these forums; folks who dont experience any side effects generally dont spend nearly as much time researching and conversing on the forums. From some of the comments here, folks would get the impression that Harvoni is as hard to endure as Interferon.. Doctors as a rule, didnt hide these side effects from patients; on the contrary, many of them suggested waiting until more tolerable treatments came on line... So why now should they all of a sudden be interested in 'playing ignorant'.. And as for actually 'being ignorant', all they have to go on is the study results.. These are double blind, peer reviewed studies; the best known to modern science.. If these side effects dont appear here, they're generally not going to be reported to you by your doctor.. There is a big difference between reporting data from legitimate studies, and reporting anecdotal evidence, most of which conflates correlation with causation, and therefore, cannot be used. And some of the things Ive read about here like vision issues, hair falling out, defective lung function, bumps on the skin, and others even stranger than these, Id have to believe, havent been discussed because they probably havent occured in anything but the most isolated of cases and really cant be tied to the treatment. I dont think there is a drug in the world which is totally free of reported side effects.

Please dont think Im trying to minimize any of you effects and symptoms.. Im not; just the conspiratorial aspects of some of the complaints!

Nicola000 · « **Reply #28 on:** August 17, 2016, 07:33:31 pm »

Hi,
Dragonslayer, I was not implying that there is some sort of conspiracy out there. I dont believe that for a moment, any more than I believe the twin towers were demolished by the US government! I am not into conspiracy theories.

I just wonder if the clinical trials were robust enough to capture those like me who have been rendered dysfunctional by the medication.

I was not informed that this drug was so new that they would have no clue what was happening if something went wrong. I certainly would not have risked it at this time in my life if I had known how little they knew about it.

I agree with you totally that these forums attract those who are not doing well in larger numbers that those who are. I am an example of that. It can falsely inflate the perceived incidence of these side effects occurring. I have gone to an effort in my posts to point out that most people are doing fine, as I do not want to scare people unnecessarily.
However, even if there was a 2% risk of this occurring, I would have felt that I rolled my own dice if I had known that in advance.

When you have an epidural during childbirth they explain all the hideous things that might happen to you even though there is only a miniscule chance.
I can only assume that they did not do this with Harvoni because they did not know.
Thats what I wish was explained, that it was brand new and I would be left high and dry, and unsure of the future if something happened. Nobody can tell me if I am going to feel better, and I was lacking that information when I signed up for this medication. I dont think anyone meant me any harm though.

I think Crabby's idea of having a support person before and during treatment is a great one. By the way, Crabby, I forgot to ask, why did your doctor change your regime to 24 weeks ?

Thank you for the relpy and your good wishes Dragonslayer. I hope this post does not read as contentious, I just wanted to make it clear that I am not stirring up any conspiracy theories here. I am just cross, and more than a little afraid.
I am also pretty cross with myself for not doing my own research to be honest.
Thanks

dragonslayer · « **Reply #29 on:** August 17, 2016, 07:54:14 pm »

Hi Nic,

I found your reply anything but contentious! I hear what youre saying, but how could the medical community have explained to you side effects noone knew existed? I think folks have to take it upon themselves to research thoroughly any drug or any procedure which is recommended to them... Your doctor is one man; the internet is replete with thousands of incidents, opinions, and studies about anything which is newly prescribed to you or procedure which has been scheduled.. I always arm myself with all the data I can get hold of.. Before I started Harvoni in December of 2014, I new it had just been approved by the FDA shortly before.. I had familiarized myself with all the potential side effects that were reported in the trials, all the data coming out of Europe... And beyond that, there's really not much you can do. And dont rely solely what your doctor tells you; Im pretty sure I read more studies and knew more about certain aspects of my illness and its treatment than he did, and I know there are several forum members here who feel the same way... We must arm ourselves with the data, and become a fierce advocate for ourselves. And lastly, remember that no drug, and no procedure is without risk.

crabby old guy · « **Reply #30 on:** August 17, 2016, 08:42:57 pm »

Nicola
It was my insurance that changed it to 24wks, my doc had said that if I was using their pharmacy it would have only been 12. At first I was irate because the sides were so bad but after a lot of reading posts on here I found because of my cirrhosis 24wks is the best way to cure this, and I will not go through this a 2ND time. My txt included ribavirin, in a way I lucked out, started txt on 3/18 and ended up being off work since 6/16 because of a leg problem. I don't think I could have done my job if I had to work, doc called on 8/3 and told me I could stop the riba. I thought when I started, that I take the meds and no big deal, wish I would have found this site long before I did. There were many days I said I cant handell this anymore, but I made it through the day and that's 1 day closer to being done. Hang in there!

AussieRosa · « **Reply #31 on:** August 17, 2016, 10:56:52 pm »

Quote from: dragonslayer on August 17, 2016, 03:19:50 pm

... And some of the things Ive read about here like .... hair falling out ... Id have to believe, havent been discussed because they probably havent occured in anything but the most isolated of cases and really cant be tied to the treatment....

Is that a jab at me? If it is I'll have you know hair loss is a well known side effect of ribavirin. So please keep your sniping at bay. This is supposed to be a supportive environment where we can discuss treatment and related difficulties without thinly veiled attacks upon our credibility.

Lynn K · « **Reply #32 on:** August 18, 2016, 03:07:00 am »

Hi Aussie I agree that for those who had to take ribavirin there is a well known list of potential side effects experienced by some who have taken it.

Hair loss and riba rash come to mind and the one I experienced ribavirin induced anemia.

I am sure no slight was intended by dragonslayer for anyone who experienced side effects of ribavirin.

To me it seemed he was more speaking to people who only took Harvoni and did say "because they probably haven't occured in anything but the most isolated of cases" so he did not dismiss the possibility that some rare few people are unfortunate enough to have experienced uncommon sides on Harvoni. Just by way of explanation why a doctor may not have discussed a rare uncommon side effect to Harvoni to a patient about to start treatment.

Nicola
I hope they are able to help you with your symptoms and you are feeling better soon.

Best of luck to all
Lynn

Guinea pig · « **Reply #33 on:** August 18, 2016, 08:28:25 am »

Hi I am 55yo and started Harvoni today after a long tussle with beliggerent corrupt authorities in Western Australia. I am genotype 1 and viral load of 1.4 million. My GP told me that was high viral load but I seen people on this forum with viral loads over 8 million. I have had hep c for over 35 years after a tattoo in a dirty parlour in Brisbane in the early 80's. I was diagnosed in 1993 after succumbing to heavy alcohol use and naturally freaked out and stopped drinking immediately. I found my way to the first world wide double bling trial of ribavirin and interferon after interferon alone failed. the ribavirin knocked me around considerably and I still relapsed again 6 months later. I was told by Professor Cooksley at royal Brisbane hospital that my contribution to the world study would ensure I gain priority for any new drugs on the market but that was in Queensland and Western Australia is an utterly corrupt feifdon run by freemasons and the vatican and they decided a political activist like myself can wait so that's why I am only now starting Harvoni despite it being available for over 2 years. I got to the point where I promised to buy it from India and then publicise the fact the WA health department were victimising me. My life has been tumultuous to say the least and I am known right around the country for my successful activism in the political and trade union movement where of course I earnt many enemies as well as friends. I am seeing complaints about side effects on this forum much more marked than my doctors and the harvoni information sheet is warning about. Let me just say this. I have a mild headache already but after what I went through with ribavirin inteferon and dragging myself out of bed for the past 20 odd years I am here for the 12 weeks no matter how bad it gets. 95% of a cure rate is utterly incredible and my memories of the 6 months after ribavirin where I actually felt like a human being for that short time have never faded. I want this virus gone and I want to feel normal again and get some quality of life back that myself and my 4 kids have always missed out on. I feel for those suffering and might become one mysefl but sometimes in life we have to grow some balls. Peace love and happiness 3 cheers for harvoni!!

brie41 · « **Reply #34 on:** August 18, 2016, 09:36:15 am »

Hi Guinea Pig,

Best of luck to you!! We are all kind of guinea pigs with these new meds. Most of us are doing okay but some have suffered side effects that are not going away. The thought of being free of this disease made me jump at it once it was available to me. They would only give me 8 weeks, but I decided to try it anyway. I am sure you will do fine. Drink plenty of water, will keep the headaches away and makes all the difference in how you feel. Good luck. Brie

dragonslayer · « **Reply #35 on:** August 18, 2016, 09:39:24 am »

Quote from: AussieRosa on August 17, 2016, 10:56:52 pm

Is that a jab at me? If it is I'll have you know hair loss is a well known side effect of ribavirin. So please keep your sniping at bay. This is supposed to be a supportive environment where we can discuss treatment and related difficulties without thinly veiled attacks upon our credibility.

I did take issue with this one statement of yours: "it really sucks the way doctors band together and play ignorant". I think I explained the reasons in my post. Nothing I said was to be taken personally.. As for your hair falling out symptom, if you read what I wrote, youd see that I was referring to Harvoni.. NOT Riba! Supportive apparently means something different to you than to me. Ive been on this forum a lot longer than you, and many here will vouch for the valuable information Ive provided which has helped countless members. I dont feel i need to defend myself in the slightest; Ive said nothing false and done nothing wrong.

Nicola000 · « **Reply #36 on:** August 18, 2016, 07:30:36 pm »

Oh dear. I did not mean to stir up trouble. Let me clarify my point again.

I believe that I should have been informed that it was a new drug and that there was a possibility of unknown side effects.

Harvoni has been sold as a fairytale (in Australia at least) and I dont believe that it is. I say this sitting in my wheelchair (thanks to Harvoni) and believe that I have a right to be angry.

Dragonslayer, I understand that the doctors did not know. Of couse they didnt. My point is that I would not have signed up for this if I had known what unchartered territory this is. I filled the script with the (incorrect) assumption that I would get a headache. I totally respect that you researched Harvoni etc, and I wish that I had done the same. But I dont necessarily think that it was my responsibility to do all that research. I believed that the doctors had.

I am new to treatment and perhaps came into this naievely. I understand that there are many of you have been through a hundred times worse with previous treatments. I dont wish to offend, I am just writing about my own (not insignificant) experience with this particular drug.

Aussie Rosa you have been wonderful to me through this. Hair loss (for a woman in particular) must be absolutely devastating. I think its ok for those of us who have suffered to feel a little p***** off. I certainly do.

We all share a common experience, but are perhaps coming from different perspectives and thats ok. Its all valid. If we can't express our feelings here (no matter how disparate) then where ?
Thanks

dragonslayer · « **Reply #37 on:** August 18, 2016, 08:00:23 pm »

Quote from: Nicola000 on August 18, 2016, 07:30:36 pm

Oh dear. I did not mean to stir up trouble. Let me clarify my point again.

I believe that I should have been informed that it was a new drug and that there was a possibility of unknown side effects.

Dragonslayer, I understand that the doctors did not know. Of couse they didnt. My point is that I would not have signed up for this if I had known what unchartered territory this is. I filled the script with the (incorrect) assumption that I would get a headache. I totally respect that you researched Harvoni etc, and I wish that I had done the same. But I dont necessarily think that it was my responsibility to do all that research. I believed that the doctors had.

I am new to treatment and perhaps came into this naievely. I understand that there are many of you have been through a hundred times worse with previous treatments. I dont wish to offend, I am just writing about my own (not insignificant) experience with this particular drug.

Aussie Rosa you have been wonderful to me through this. Hair loss (for a woman in particular) must be absolutely devastating. I think its ok for those of us who have suffered to feel a little p***** off. I certainly do.

We all share a common experience, but are perhaps coming from different perspectives and thats ok. Its all valid. If we can't express our feelings here (no matter how disparate) then where ?
Thanks

Nic,

First let me get this out of the way: Believe me, you did nothing wrong! Let me address a couple of your points.

>> I would not have signed up for this if I had known what unchartered territory this is.<<

I dont really consider this uncharted territory. Harvoni went through the normal 3 phase trials, so far as I know, and was scrutinized by the FDA just like any other drug.. Im not even sure Harvoni was fast tracked.... There is a fairly thorough compilation published of side effects and percentages that affected those in the trials (the prescribing booklet that came with Harvoni lists them).. Considering the thousands of people that were dying from HCV and the millions afflicted, the side effects found during the trials were all minor things, mainly insomnia and headache... Most of the rest were in the single digit percentiles. Given the urgency of bringing this drug to market, I dont consider it that big a risk...

Nic, in all honesty, the trials could have produced results that indicated zero side effects, and yet, in the real world, some few people would have come down with something. ... Like I said, there is no such thing as a drug which nobody gets side effects from, and most of these, neither your doctor nor you can know about in advance... So, given the urgency of curing the disease, or risking a rare side effect, wouldnt you choose to take it again? I certainly would!

>>I totally respect that you researched Harvoni etc, and I wish that I had done the same. But I dont necessarily think that it was my responsibility to do all that research. I believed that the doctors had.<<

Well, this is a case of what we all wish things were like in a perfect world, and how they really are.. Did you know that medical errors are the third largest cause of death in this country?!! Given stats like these, while its true that medical errors should not happen, and doctors should give you ALL the most up to date information with which you can make a decision, the fact is, in the real world, we have to fend for ourselves... Do the research and dont expect all doctors to be equally versed and willing to take the time to spoon feed.. It just doesnt happen in many cases.

AussieRosa · « **Reply #38 on:** August 18, 2016, 11:20:10 pm »

Quote from: dragonslayer on August 18, 2016, 09:39:24 am

I did take issue with this one statement of yours: "it really sucks the way doctors band together and play ignorant". I think I explained the reasons in my post. Nothing I said was to be taken personally.. As for your hair falling out symptom, if you read what I wrote, youd see that I was referring to Harvoni.. NOT Riba! Supportive apparently means something different to you than to me. Ive been on this forum a lot longer than you, and many here will vouch for the valuable information Ive provided which has helped countless members. I dont feel i need to defend myself in the slightest; Ive said nothing false and done nothing wrong.

Considering I am the only person on this forum in several months to complain of hair loss related to treatment of any kind I felt that was aimed at me. If you have had no experience with medical professionals sitting across from you, looking you in the eye, and telling you that common and documented side effects of a medication they've put you on are not side effects of that drug then you have had better luck with doctors than I or many others have had. I've even gone in armed with a hand held device loaded with a doctor's professional drug reference database app that listed meds and prescribing info and side effects to prove to them what I was suffering was caused by the med only to have them become enraged at my presumption. Doctors do stick together, they are very reluctant to admit that a colleague may have erred and, from my extensive experience, this applies to the majority of them. Your experience may differ.

FutureThinker · « **Reply #39 on:** August 19, 2016, 01:06:50 pm »

In the vein of this conversation, what doctors tell us or don't re: side effects and what we can do to alleviate that experience ----- I personally have found that my own hepatologist doesn't seem to always "be on top" of new data that I find online. And I mean study results and respected conference postings, not run-of-the-mill info out there from poor sources. I think it boils down to time available to read thru all this stuff. I've had more than one heated discussion re: my treatment options. That said, I think the important thing to take away from this thread is that, at least here in America, our healthcare system leaves a lot to be desired and our doctors & their staff just are often too busy to COUNSEL us on our treatment. Therefore, let's all be cognizant that we need to take the time to learn about our health, conditions and treatment options, right or wrong, good or bad. That's been my experience.

Sometimes, we need to look elsewhere for another doctor. That is not always possible, I understand, due to insurance issues, etc. But if we are not comfortable with who is treating us, then if possible, we need to try to find a professional who we are able to trust. I am so sorry Nicola has had such a terrible experience with her treatment, and that AussieRosa has met such a wall of resistance in her healthcare discussions. Let's all hope to reach SVR and learn from our experiences for future health discussions that we can be as prepared for as possible. That's what we need to take away from this dialogue. FT

KimInTheForest · « **Reply #40 on:** August 19, 2016, 01:35:03 pm »

Quote from: Nicola000 on August 18, 2016, 07:30:36 pm

Aussie Rosa you have been wonderful to me through this. Hair loss (for a woman in particular) must be absolutely devastating. I think its ok for those of us who have suffered to feel a little p***** off. I certainly do.

Totally ok to feel p***** off with devastating side effects (especially if one was unprepared for them), and to express it here. Keep on representin'!

kim

Rosie13 · « **Reply #41 on:** August 19, 2016, 09:23:18 pm »

Hi everyone! I read all the posts on this thread & found common ground with all of you.Before I started Harvoni I was experiencing lots of symptoms of HepC.Rashes, aches all over & side pain at night.After starting Harvoni I was very shaky for a few hours then fine.I dropped a few glasses of water & decided my grip wasn't that good but living in Florida I was on one floor so thank God no stairs! My DR's. were great & their previous patients were pretty happy with low side effects.Sorry you didn't know about the possible imbalance issues because lots of us fretted we were going through the whole glass cupboard!Dragonslayer was in my Hepc class at the time & his support & humor is legendary on the forum.We are so grateful to have been blessed to get this drug that all the rest is secondary.I fought like hell to get approved here in the states it was not an easy thing to do last year. All my symptoms went away after treatment.I pray you have all the best after is over.Hang in there !

Nicola000 · « **Reply #42 on:** August 28, 2016, 12:44:58 am »

Well, I did not give up on Harvoni, but it gave up on me !

One day short of nine weeks down. I started vomiting (I have been becoming increasingly nauseous) and could not stop. Couldnt keep Harvoni down, or food, or water for 24 hours. Today is not as bad, but I vomited my dose up for the second day. Straight away. I have only eaten one small meal in 2 days.
Its the weekend, I will speak to my specialist tomorrow, but I think thats it for me.
I cant go on. My body will not accept it anymore.

I have reeled through neuropathy,severe headaches for the entire time, near fainting dizzy spell lasting 8 days, brain fog, severe rash, severe nausea, nightmares and hair loss. All done in a wheelchair with five broken bones due to neropathy fall.
5 weeks off work, havent left the house except for work in 2 months, not even to the shops.
I dont think anyone could accuse me of not trying. Of course I feel I have failed, but when your body rejects it what can you do ? When I look back, my body has been rejecting it since day 1.
I just have to hope that 9 weeks was enough.

And I will say it again. If I had been informed that my life would implode, it may have been easier to manage as I could have planned it better, and not left my family high and dry.

And yes, I KNOW most people have an easy time, and good on them. But the reason I am putting this out there is that not everyone can do this. No matter how hard you try. And there is no research that could have informed me. Not adequately anyway.

Anyway, I am type 1b, 0 fibrosis (0.2) and my 4 week test was undetected.
Feeling pretty low and defeated, but I believe I have done all I could.I dont know my initial viral load but will find out when I call tomorrow.

The study I looked up said the success rate was in the 90 %
Any information about this would be appreciated.
Thanks to everyone who supported me.

Nicola

Guinea pig · « **Reply #43 on:** August 28, 2016, 10:29:39 am »

Hi Nicola so sad to hear of your plight but you must surely be in poor general health too by the sounds of all those reactions. You need to look on the bright side now and that your LFT is in the normal range which suggests the virus is gone. Hopefully it has but I can tell you that my specialists told me there are 2 more drugs coming on the market in 2017 that are proving to be more effective than Harvoni which has a 296% cure rate in Australia BTW. I was already suffering headaches and insomnia before beginning 12 weeks of harvoni 11 days ago and I also suffer right sided meniere's disease so the chance of possible vertigo was very worrying for me but here is how it has rolled so far- Day 1 I swear I could literally feel the drug circulating my body and doing it's thing. One minute was my legs feeling sensations then my chest then slight headache then back down my body and it would come and go every few hours. Day 2 was similar but less pronounced and by day 3 I could hardly notice anything at all. Have not had a single headache since day 1 and my bowel movements began to return to some normaility I have not seen for years. I was viral load 1.4 million and ALT 105 before Harvoni. Blood test after 7 days ALT is 47. The lowest it has been in over 35 years. Looking forward to week 4 blood test. hooray for Harvoni!!

Rosie13 · « **Reply #44 on:** August 28, 2016, 12:05:43 pm »

Hi guinea pig! I loved your post because it shows we all are having different response to this terrific drug.I was very much like you in my reaction. The first day I was so tired I knew my body was being overwhelmed with clearing the virus.Headaches were vanquished with increases in water & the rest was a total breeze.Alot of people are working full time & taking care of kids & doing very well. Most of my complaints were from HepC not Harvoni! I had side pain , joint pain,difficulty sleeping,rashes & brain fog.....all are gone & have not returned.It will be a year September 3 Rd since my treatment began...... Thank you Harvoni!!!!!!!I wish all the best for people in treatment & hope all the issues resolve with clearing Hepc

morab · « **Reply #45 on:** August 28, 2016, 12:35:00 pm »

Nicola
I know you were so healthy before treatment and need some support now in not feeling so alone in you SYMPTOMS while on Harvoni. Yes there are sooooo many of you out there who breeze right through treatment!
BUT for many of us it is NOT an easy road! A little empathy is what those of us who are symptomatic during and after treatment need right now not Oh how wonderful this new drug is for YOU and how you had such an amazing trip through Harvonia'!
At times lately what used to be understanding and empathy has lately turned into a sort of scowling at me for even bringing up my symptoms. I am feeling lately like half the folks on this forum have a sort of invested interest in making this drug look better than it is for some of us!
So to all of you doing so wonderfully congratulations!
And to all of us who are symptomatic from taking Harvoni may we get the support we so desperately need, hence our reason to post on hepmag at all!
Good Luck Nicola and I am sure hoping that both you, I and the many others who are suffering from treatment get some support from this forum versus a OH HOW WONDERFUL I AM DOING ,,,,maybe the wonderful people need their own topic!
morab

KimInTheForest · « **Reply #46 on:** August 28, 2016, 02:18:12 pm »

Hi Nicola. Horrible what you have gone through on Harvoni. But you know... even stopping now at 9 weeks (as you clearly are forced to do because of side effects), I think it is quite possible you have already been cured of the HCV, since you are 1b and became undetected at 4 weeks. Quite a few 1b's have been cured with 8 weeks of Harvoni. I have a friend who was.

I have had no end of health problems since completing my 12 weeks of Harvoni+ribavirin. And my problems began midway through treatment, although I entered treatment with no known health probs or bloodwork anomalies. (I suspect what really happened in my case is that I entered treatment with a very low-grade and undiagnosed health problem that blew up due to the stresses my body was under on treatment. But Harvoni may have played a more direct role than just creating 'stress'. I see a lot of merit and logic in the hypothesis put forward in April at the Barcelona conference about harvoni and other DAAs suppressing the body's immune surveillance.)

Good luck on your recovery, Nicola! Do whatever you need to to heal and detox.

best,
kim

Nicola000 · « **Reply #47 on:** August 28, 2016, 06:51:29 pm »

THANK YOU Morab and Kim in the Forest for your kind words.
Yes, I have to admit, I took an emotional bullet reading hooray for Harvoni after I had just explained I had been forced to give up treatment.

Kim, that was reassuring that your friend was cured after 8 weeks. I just have to learn to live with the uncertaintly. I am happy to hear from anyone cured after 8 weeks.

Nicola

Nicola000 · « **Reply #48 on:** August 28, 2016, 07:20:36 pm »

Also, I forgot to ask Kim, I am interested in the information from the conference in Barcelona. Do you have any more information on that ?
Thanks
Nicola

Rosie13 · « **Reply #49 on:** August 28, 2016, 07:25:42 pm »

Very sorry if my account of my experience was upsetting.

KimInTheForest · « **Reply #50 on:** August 28, 2016, 07:50:33 pm »

Quote from: Nicola000 on August 28, 2016, 07:20:36 pm

Also, I forgot to ask Kim, I am interested in the information from the conference in Barcelona. Do you have any more information on that ?
Thanks
Nicola

The findings reported at the barcelona conference in April 2016 have since been disputed by many doctors. However, I think it makes a lot of sense and am not dismissing it. The findings pertain to patients on Harvoni having a recurrence of liver cancer during or immediately following Harvoni treatment. The hypothesis is that Harvoni and the other new DAAs work so well and so quickly that virus and inflammation are eliminated almost overnight. And inflammation is what alerts some part of the immune system to release the stuff to defeat emerging cancer (which we all have going on all the time). That action is called 'immune surveillance' - the aspect of our immune system that is always on patrol, ready to release something whenever unusual cell replication is spotted somewhere. So in other words... Harvoni works too well and too quickly. Anyway, it seems to me this could affect other cancers besides liver cancer. It's just that liver cancer people were the only ones looked at in the studies reported at the conference.

One article here: http://www.catie.ca/en/treatmentupdate/treatmentupdate-216/anti-hcv-drugs/barcelona-reports-unexpected-cases-liver-cancer-p

kim

Guinea pig · « **Reply #51 on:** August 28, 2016, 10:53:05 pm »

Nicola you took an emotional bullet after reading hooray for harvoni it appears that in fact you have serious emotional problems or are just taking things out of context deliberately in order to seek attention. If you read my introduction you will see mentions of my suffering on the ribavirin/interferon double blind world wide trials in the 90's. Yes I mean suffering to the point of near death experience but even after that I wanted to push on and did not berate any doctors for not telling me that which no doctor could predict. Be thankful many people have suffered before you in order to get the wonder drug that has now apparently cured you. Get of the negative and get a life or tell us all the other health problems you already obviously had prior to starting Harvoni.

KimInTheForest · « **Reply #52 on:** August 28, 2016, 11:06:27 pm »

Quote from: Guinea pig on August 28, 2016, 10:53:05 pm

Nicola you took an emotional bullet after reading hooray for harvoni it appears that in fact you have serious emotional problems or are just taking things out of context deliberately in order to seek attention. If you read my introduction you will see mentions of my suffering on the ribavirin/interferon double blind world wide trials in the 90's. Yes I mean suffering to the point of near death experience but even after that I wanted to push on and did not berate any doctors for not telling me that which no doctor could predict. Be thankful many people have suffered before you in order to get the wonder drug that has now apparently cured you. Get of the negative and get a life or tell us all the other health problems you already obviously had prior to starting Harvoni.

Wow! Really inappropriate and non-supportive comment, Guinea Pig. Exactly the thing to be avoided on these forums.

kim

Nicola000 · « **Reply #53 on:** August 28, 2016, 11:37:30 pm »

Guinea Pig,
I dont understand your need to be vicious.
I felt that it was a little insensitive reading self congratulatory posts as a response to my post that I had been physically unable to complete treatment. After your most recent response, I rest my case.

This was a thread about neurological symptoms, that ALSO may help others who come after me with the same side effects.

This is an appropriate forum to discuss different perspectives on treatment is it not ? I have not berated any doctors, I have brought up issues around the sparcity of knowledge around this medication. This has nothing to do with ingratitude, or your previous treatment experiences.

And for the record, I have mentioned this several times.
I am 1b, 0 Fibrosis (0.2),
Non symptomatic as far as I am aware and have no pre-existing medical conditions.
Why on earth would I lie about my health status ?

I have never read such an ugly post on a forum before.

Lynn K · « **Reply #54 on:** August 29, 2016, 01:27:31 am »

Previous post deleted due to violation of posting rules

Please be courteous to other posters. We will not tolerate the use of abusive language under any circumstances.

Philadelphia · « **Reply #55 on:** August 29, 2016, 06:45:34 am »

Previous post deleted due to violation of posting rules.

A reminder of the forum posting guidelines:

Please be courteous to other posters. We will not tolerate the use of abusive language under any circumstances.

We are all in this boat together, facing similar challenges. Let's not lose sight of that.

hummingbird57 · « **Reply #56 on:** August 29, 2016, 08:59:22 am »

Quote from: Nicola000 on August 28, 2016, 11:37:30 pm

Guinea Pig,
I dont understand your need to be vicious.
I felt that it was a little insensitive reading self congratulatory posts as a response to my post that I had been physically unable to complete treatment. After your most recent response, I rest my case.

This was a thread about neurological symptoms, that ALSO may help others who come after me with the same side effects.

This is an appropriate forum to discuss different perspectives on treatment is it not ? I have not berated any doctors, I have brought up issues around the sparcity of knowledge around this medication. This has nothing to do with ingratitude, or your previous treatment experiences.

And for the record, I have mentioned this several times.
I am 1b, 0 Fibrosis (0.2),
Non symptomatic as far as I am aware and have no pre-existing medical conditions.
Why on earth would I lie about my health status ?

I have never read such an ugly post on a forum before.

Nicola - whatever you decide here's hoping you feel better soon. True that we're all in this together - hope the time that you were on the Harvoni did the trick and you can start healing.

morab · « **Reply #57 on:** August 29, 2016, 12:17:09 pm »

Nicola
My weeks on Harvoni were so very similar to yours. 12 weeks of living hell, my feet are still numb, ankles swollen, hips in pain, back pain, wrists painful and weak. I have a decent day once in awhile and try to catch up on minimal house work only to find myself so fatigued the next day is usually spent in bed!
Yes I too suffered on Harvoni, and had I known this was what I was in for? I would have planned it at a later date! The time I spent this summer with my grandson before he started kindergarten is just a blurr, and I was unable to take him to do the things we always do in the summer!
Also the GI specialist who I saw? NO followup of any kind, no labs, no returning of my phone calls when I was symptomatic! I freaked out with nowhere to go and found the forum! I was lucky enough to have a general practitioner who is compassionate and studied up to do all my lab work by doing research himself so that he could follow protocol of people on Harvoni tx.
My last week on Harvoni was the worst, like you I could keep nothing down, throwing up every day and sometimes all night. My experience on tx is a nightmare, oh and I had nightmares when I was able to sleep, another side effect!
I feel very secure in reaching SVR but not so secure in these side effects going away. I just hope that I will some day return to my normal before harvoni tx.
Like you I had/have no fibrosis, genotype 1a,tx naive,,,, from a blood transfusion either in 1973 or 1985.
There really needs to be more study by Gilead following each one of us!
I am not so sure that will ever happen. So many of us call their reporting number but I have yet to talk to someone who cared about what I was telling them.
Keep in touch please! I am really curious to see how many of us reach our pre harvoni selves!
Across the Ocean I send you goodness and healing energy!
Morab

morab · « **Reply #58 on:** September 13, 2016, 10:09:13 pm »

Quote from: Nicola000 on August 28, 2016, 11:37:30 pm

Guinea Pig,
I dont understand your need to be vicious.
I felt that it was a little insensitive reading self congratulatory posts as a response to my post that I had been physically unable to complete treatment. After your most recent response, I rest my case.

This was a thread about neurological symptoms, that ALSO may help others who come after me with the same side effects.

This is an appropriate forum to discuss different perspectives on treatment is it not ? I have not berated any doctors, I have brought up issues around the sparcity of knowledge around this medication. This has nothing to do with ingratitude, or your previous treatment experiences.

And for the record, I have mentioned this several times.
I am 1b, 0 Fibrosis (0.2),
Non symptomatic as far as I am aware and have no pre-existing medical conditions.
Why on earth would I lie about my health status ?

I have never read such an ugly post on a forum before.

Nicola
I hope you are doing much better,
I have not posted in awhile, being symptomatic and after the attacks on you and other showing symptoms and some post symptomatic, actually I did not think I would ever return here.
Just wondering how you are doing and to let you know that I CARE.......
May the force be with you and we will both be graduating so very soon.......and may we all be able to deal with the AFTERMATH of harvoni,,,,,,,,what ever that may be.
Morab

jberlin · « **Reply #59 on:** September 13, 2016, 11:41:52 pm »

Wow, interesting discussion, even if a bit lively! I think everyone has been able to say how they feel about this topic, so before it gets overheated I am going to lock it down.

Thanks to everyone that contributed and to the readers out there, please remember much of this is opinion, no matter how passionately felt, so in no way intended to replace a discussion with a qualified MD, but hopefully will provide you with more questions to ask of him or her.

Thanks all for participating in this forum!
jack

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