Author Topic: Mavyret (Read 68827 times)

Type0Negative · « **Reply #100 on:** March 09, 2018, 12:10:40 am »

Lion, did you try steroidal cream? Triamcinolone or Clobetasol would take care of it. Ask your provider to prescribe it if it not on interaction list.

Type0Negative · « **Reply #101 on:** March 09, 2018, 11:00:25 am »

This morning my both ears massed up. Feels like I have water in them, I do not have nasal congestion, maybe very slight morning stuffiness- nothing to justify having this weird sensation in my ears. What if it ototoxicity? If offending medication not stopped, it can cause permanent damage. Am I getting cold?

lioninsunheart · « **Reply #102 on:** March 10, 2018, 11:41:03 am »

Hi Everyone,
Well, I drove to town yesterday to my Primary to see what my blood test revealed.
And -well - NOT DETECTED!!!!!!!!!!

<15 NOT DETECTED 1U/mL
HCV RNA SerP1 PCR-Log IU
<1.18 NOT DETECTED Units: Log IU/mL
I suppose these are the results of the two vials they drew..other than that I haven't a clue. My doctor tried to explain these to me and all I could hear was NOT DETECTED.

My Infectious Disease doctor who prescribed the Mavyret for me, well, I haven't heard hide nor hair from him or his office (?) doesn't matter - being responsible for my own care has kept me in the loop to my own outcome.
YEAH--all these side effects were worth it. I still have to continue another 3 weeks on the Mavyret but at least I know I am cured.

I don't know what to say but thanks to all that provided advice and support..I'm not leaving just wanted to thank you today!

TypeO--OMG, I know the variance of side effects and for me every day is different. Yes-I am trying the Triamcinolone cream and it works but mostly depend on the generic 1% Hydrocortisone cream. The buzzing in my ears continue and may be a side-effect for us that will eventually go away, and I still have blurred vision but I know I only have 3 more weeks to go and continuing the Mavyret is now a preventative measure now that I am cured. I start week 10 tomorrow-Sunday.
When I told my friends yesterday about the results they asked-"Do you feel better?" and I had to say NO-unfortunately. I hope to say YES in weeks to come. Actually, I do feel better psychologically and emotionally though. To be totally honest I am suffering from these side effects and dearly hope yours subside enough for you to function somewhat normally through your treatment. We have to remember that we are taking the most powerful drug we have ever introduced into our body so far. A low form of chemo-therapy(?)
I do believe I have finally found a comfort level though once I have stopped the itching for a day and can get a good night's sleep. Having the snow finally start melting outside is comforting too.

Keep in touch and pace yourself. Be gentle with yourself. Try not to worry.

Peace and Love
Lioninsunheart

Type0Negative · « **Reply #103 on:** March 10, 2018, 02:10:52 pm »

Cant type much now, but Congratulation om undetected! Great news.

My ears feel better today, still some noise, but better than yesterday. Yesterday was weird.

I have to do my 4 weeks testing and they want me to come 2 doses earlier than 4 weeks. I am afraid if i still detected, i will be worrying and hopeless Until the end of tx. Not trusting 8 weeks course for G3.

mpls · « **Reply #104 on:** March 10, 2018, 07:30:47 pm »

CoNgrAtuLaTioNs LiOn!!! Best news i'ver heard all day!! What a relief! It worked and you are cured! So happy to see the news. Thanks for sharing!!!

Lynn K · « **Reply #105 on:** March 10, 2018, 10:07:17 pm »

Congrats Lioninsunheart that is awesome news!

TypeO just wanted to let you know that the vast majority of patients are not detected on treatment at week 4 so try not to worry you will very very likely see a not detected result.

Nearly all patients are not detected on treatment. The rare treatment failures all happen after treatment has ended. If you are tested for the virus at four weeks post treatment and are not detected your odds of remaining that way are about 98.5% and once you have made it to SVR12 (sustained viral response 12 weeks after treatment has ended) that is when your doctor will say you are cured since the odds of staying hep c free after SVR12 are about 99.8% relapse after SVR12 is very rare.

Best of luck to you both.

lioninsunheart · « **Reply #106 on:** March 12, 2018, 11:28:17 am »

Thanks, Everyone,
Yes-I know about the 12 weeks after treatment lapse and analysis. Honestly-I just really really want to stop taking the Mavyret NOW! My rashes are extremely uncomfortable-but I know it is wiser to stay with it. So must constantly gather the strength. Started week 10 yesterday. $:-\$
Peace and Love
Lioninsunheart

Type0Negative · « **Reply #107 on:** March 12, 2018, 11:45:48 am »

Thank you for encouragement, it helps, but someone in this thread was less than 15 detected at 4 and 8 weeks. 8 weeks is risky for G3, it does not respond well to protease inhibitors, so it may or may not work. There those 5%... I have long way to go, and it is not easy. Like last night- felt bad. Felt toxic. Just this awful feeling that would not shake off. had enough water and food...

Lynn K · « **Reply #108 on:** March 12, 2018, 03:18:16 pm »

We had a couple of people who were detected on treatment and even at EOT and 4 weeks post who went on to be cured. Look up dragonslayer. He was detected at 4 weeks post but he is now cured.

Really on treatment test results are nice to see really they mean little and can cause unnecessary worry. There is only one test that matters, the 12 week post treatment test.

Any other testing is really not really of any diagnostic value. On treatment testing only confirms patient compliance in that if there was no change in viral load would mean the person is not taking their meds. Otherwise everyone will either be not detected or have a very low viral load.

Found this about GT 3

http://www.hivandhepatitis.com/hepatitis-c/hepatitis-c-topics/hcv-treatment/6138-aasld-2017-mavyret-shows-high-cure-rates-for-hcv-genotype-3-and-cirrhosis

"In the pooled analysis, 95% of participants without cirrhosis who were treated for 8 weeks and the same proportion of those treated for 12 weeks achieved SVR12. After excluding people with non-virological treatment failure in a modified analysis, cure rates rose to 98% and 99%, respectively."

Non virological treatment failure are those who discontinued treatment so when they left them out of the computation SVR rates were 98%

So anyway hang in there and good luck.

Type0Negative · « **Reply #109 on:** March 17, 2018, 11:27:58 pm »

Lynn, thank you for the article. I did read it in the past, but it is comforting to read it again when in doubts.

Lion, I found nice article for you- I think the message is positive.

https://jumpshare.com/v/gvHUWxfnfJJINgZGzkAt

lioninsunheart · « **Reply #110 on:** March 18, 2018, 12:34:33 pm »

Thanks, Type O for the 'paper'!
I'll look at it today although I probably will not understand the medical terminology without further and more comprehensive study or research or a degree. $:-\$
It seems though at first look that it addresses my specific condition(s).

I have 12 weeks to go on the "Pink Pill Journey.' I'm counting the days.
This last Friday I had my lab for "Kidney Response" here at my clinic for my upcoming cancer consultation and treatment. Tomorrow morning I will get another MRI to see how the tumor is after all these weeks of postponing. And then next Friday (23rd) for my consultation with my Oncology doctor.

At least I can reboot these procedures withOUT the Hep C which in all probability led to the tumor in the first place. Without the presence of Hep C - I know I will have a better chance of a higher percent curable treatment. Does this make sense? Does to me. HA! Argggggghhhhh

Still, I'm optimistic and I'll be glad when it's all over.

Yesterday the rash moved into my hands, fingers and palms. The itching was almost unbearable. After applying the ointments I had to put on a pair of gloves so I wouldn't be tempted to scratch the areas. 12 days to go to relief. 3 months of debilitating and painful rashes, blurred vision, fatigue, and various other side effects will come to an end and I can start healing from them.

I have wondered though.
If Mavyret is in the experimental stage, shouldn't the manufacturer be sending us follow up questionnaires or something, the doctors, the pharmacy's - throughout the treatment? Inquiring minds want to know.

Okay-thanks for the article
Peace and Love
Lioninsunheart

Lynn K · « **Reply #111 on:** March 19, 2018, 12:36:24 am »

Hi Lion

Mavyret was approved by the FDA last summer so it is no longer considered to be an experimental medicine. It it was we would only be able to receive this medicine e in a clinical trial.

Many medicines may still have various ongoing trials after approval. Possibles studies could be shorter treatment durations or testing the medicine to see if it can be used for other medical conditions or in different ways than originally prescribed.

Your prescribing information sheet should have contact information to report side effects this is likely something your doctor could also do. The drug manufacture and the FDA both want us to report any treatment issues. This is how the found out about some of the issues with Harvoni and a specific heart medication.

This is from the prescribing information sheet for Mavyret

“To report SUSPECTED ADVERSE REACTIONS, contact AbbVie Inc. at 1-800-633-9110 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.”

Wishing you better days and much healing soon

Type0Negative · « **Reply #112 on:** March 20, 2018, 12:15:38 am »

Hello, friends

Today I got my 4 weeks results. And I am still detected. Very disappointing. It says,

<15IU/ml detected.

I am aware that this is not the final result, but I was hoping- I would respond better. How come so many thousands of virus units were cleared, but this low number is still surviving? I knew 8 weeks is risky for G3- I would probably be ok with 12 weeks, but they would not extend. Even if I am still detected at 8 weeks, they will not continue, which is ridiculous. If there is still RNA after 8 weeks, it is obvious that virus is still multiplying. This is a definition of being detected. Now I will be freaking out for the next 4 weeks.

Yeah, the blurred vision... It is not the same as when you wake up in the morning and your eyes need to be washed before your vision becomes sharp. This is internal-the world perception is affected. I still feel drugged. Not drowsy, but slightly toxic. I dont think they want to hear about side effects- every time I mention some issue, they tell me- this was not noted before, therefore it is not caused by it and not treatment related. I almost feel like I am expected to be more grateful and they feel irritated with me for complaining. It only my heart- cardiotoxicity decreases ejection fraction. Not a joking matter. Would be horrible if the treatment fails and with it I develop some heart failure or else... Sorry- it is evening- I feel irritable. Need to force myself to bed. Positive comments are encouraged and appreciated. Thank you.

PS Lion, you are brave. You handling it with dignity. Sorry for your rash. Did you try moisturizers? The rash is not side effect of this treatment., lol.

Lynn K · « **Reply #113 on:** March 20, 2018, 01:49:58 pm »

Remember that little bit of DNA that is detected are likely not viable virus cells. They could be simply pieces of virus still circulating or whole virus by unable to reproduce as that is how the meds work is to prevent replication.

We had one or two people here who were detected at EOT and o e Dragonslayer who was detected at 4 weeks post treatment but was not detected at 12 weeks post.

On treatment testing is without value except to confirm patient compliance. If like in your case the patient is weakly detected on treatment in only causes unnecessary concern.

Even being not detected on treatment does not guarantee cure. I was not detected with Sovaldi and Olysio during treatment and at EOT but at 12 weeks post I had relapsed.

Hang in there and try not to worry about this result. It only shows the medicine is working nothing more. I am confident you will show not detected at the 12 week post treatment test

Type0Negative · « **Reply #114 on:** March 20, 2018, 10:21:48 pm »

Hey, Lynn
Thank you for your post. It is really comforting. I was almost calm and hopeful today, until I found HepCFriends forum, where almost everybody I read was UDT at 4 weeks on treatment. They were saying- if individual undetected, they will do 8 weeks, if detected- then 12 weeks. I don't have 12 weeks option... On the positive note- I felt better last couple of days, still have arhythmia in the morning but lighter. I made appointment to Cardiologist for next week, now i am wondering if I should cancel it. I still can find what to discuss, I just dont feel like telling entire new practice of specialists that I have HCV- they will write it in their notes, this is not my regular cardiologist, he does not know me, and here I come with "I am on Mavyret and have palpitations and arrhythmia- how dangerous is this?" I should probably wait until the end of treatment and then address what ever issue I will have after the treatment. What can they do now? They cant even start Monitor on me because it is mostly drug-relatyed effect. Do you think I should cancel it? Thank you.

Lynn K · « **Reply #115 on:** March 20, 2018, 11:03:05 pm »

If you have concerns you should get it checked out.

Most are not detected at week four. But not everybody best of luck and hang in there.

Type0Negative · « **Reply #116 on:** March 21, 2018, 12:08:17 am »

Thank you for your reply. There is not much they can check out. My EKG is normal because they do it when it not happening. I was planning to talk about beta blockers in case of emergency, but I can read about it. Not sure they can help me at this point. I will think about it more... I shouldn't have this 4 weeks test. lol.

lioninsunheart · « **Reply #117 on:** March 21, 2018, 12:47:10 pm »

Tis all very interesting. Being tested at 8 weeks and receiving a NOT DETECTED lab result on a 12-week treatment sounded logical to me and then a 3-month follow-up lab. All sounds again, logical.
I am going by days now not weeks..what I really need to be cured of alongside the Hep C is this maddening itch..HA!

I don't complain about it to anyone but you folks as you know it's a report of a possible side-effect for future readers of this forum. and you would be sincerely sympathetic. I was thinking last night as my hands swelled to double their size from the scratching (on goes the gloves)- there really should be a 'fast acting spray' you can apply on these painful areas. Oh well..9 more daze to go. I'm sick of saying "It's worth it'..it's so redundant. But it is. $:-\$
I am so grateful for the information everyone has shared during this process it has been a huge help psychologically to know that others are versed on the subject.
Type O, could it be a very low blood sugar level every morning that effects your rapid morning pulse? If I don't eat within 1 hour of taking my Mavyret my heart rate increases also and a muffin and some fruit juice usually solves it and calms me down before my main meal at noon. My trembling hands have pretty much subsided except during those low blood sugar times and a quick snack again, solves that.
Just wondering.
Okay then..thought I would touch-in.
Oh yes, I did my MRI Monday morning and was dreading the itches while in the 'tube' (1 hour) so I didn't take my Mavyret until I returned home..the only thing that itched was my nose OMG-I willed it away. Thought I would mention this for a chuckle.

Happy 1st Day of Spring.
Peace and Love
Lioninsunheart

Type0Negative · « **Reply #118 on:** March 22, 2018, 07:43:11 am »

I had few itchy spots on me yesterday and my hands are very dry. Moisturizer helps. There are other skin conditions that can cause itching- scabies, for example- not saying you have it. If it is allergic to medicine, it can be serious- like anaphylactic shock. Ask your doctor if it is ok to use allergy medication.

I doubt I had low blood sugar in the morning. It is more like arrhythmia. It happens now more frequently after I have my large cup of water and food. I had a history of minor premature ventricular contractures- kind of like heart skipping a beat. But it got worse with this treatment. Also I eat every 3 hours around the clock, because if I miss food, I start feeling high, and not in pleasant way. lol. Eating to keep buzz down. lol. The blurred vision was prominent yesterday. This is too much fun for me.

Lynn K · « **Reply #119 on:** March 22, 2018, 11:39:59 am »

Found this on webmd about symptoms of low blood sugar it does mention rapid heart rate

“Symptoms may include:

Sweating (almost always present). Check for sweating on the back of your neck at your hairline.
Nervousness, shakiness, and weakness.
Extreme hunger and slight nausea.
Dizziness and headache.
Blurred vision.
A fast heartbeat and feeling anxious.”

lioninsunheart · « **Reply #120 on:** March 22, 2018, 01:05:51 pm »

I saw a bald eagle fly over yesterday with a newly caught fish in his mouth, it was amazing, it gave me a whole new outlook toward my physical discomfort. Even with my blurry vision, I could discern his eyes. Nature is amazing and yes, this is just too much fun. Mavyret tends to make me more self-absorbed than usual - best to distract myself in our little forest around us and the lake below and stay focused on what gives us comfort. 8 more daze.
(consultation tomorrow with my Oncology doctor to assess the MRI results and determine the best treatment for my C-word) more fun! lol)

Peace and Love
Lioninsunheart

lioninsunheart · « **Reply #121 on:** March 29, 2018, 03:19:33 pm »

Hi Folks,
Just wanted to touch in and let you know that tomorrow (Friday) is my last day for Mavyret AND I had my Cancer consultation yesterday, we have decided to do the Radiation Ablation treatment. Just got a call this morning and I am scheduled for the procedure next Thursday. Everything is moving so quickly. The treatment for my tumor is 99% effective. And an additional 2 weeks for similar side effects from the procedure as Mavyret-OMG!
Will be taking antibiotics and pain pills.
I wonder just how much my body can take-but I know the urgency of having this done will be worth all this pain/discomfort.

Here's the procedure info:
Radiofrequency ablation for cancer is a minimally invasive procedure that uses electrical energy and heat to destroy cancer cells.

The radiologist uses imaging tests to guide a thin needle through the skin or through an incision and into the cancer tissue. High-frequency energy passes through the needle and causes the surrounding tissue to heat up, killing the nearby cells.

I don't think I will seek a Forum for this.

Wish me luck!
Peace and Love
lioninsunheart

Lynn K · « **Reply #122 on:** March 29, 2018, 08:30:54 pm »

Congrats on finishing treatment and best of luck with the ablation procedure. You sound very brave going forwards into yet another treatment.

Sending you all my best wishes for great results and minimal side effects

Type0Negative · « **Reply #123 on:** April 01, 2018, 12:19:53 am »

Hey, Lion! Happy for you that you made it through the treatment. Hope you will post your results!

Did they anticipate post ablation period to be painful? I thought liver had no pain nerves. Let's hope it will not be too bad! I wish you the best and soon recovery.

I am doing ok, not much to report. The side effects subsided. I have couple more weeks left to go. Will update. Thanks.

lioninsunheart · « **Reply #124 on:** April 02, 2018, 10:49:06 am »

Thanks, Type O..yes, they said there would be some pain after the procedure mainly from the body saying "what the Bleep just happened" - I mean, after microwaving cancer cells you would expect some kind of physical response. Anyway-antibiotics and pain medications- what's new? 2 weeks of recovery is just about normal they said with at least 75% of patients doing the procedure. I just went through 3 months of Mavyret side effects, so why not do the whole enchilada?
I'm feeling sort of depressed, not the "why me" kind, just the "OMG more?" kind of feeling. I am determined though to see all this done and concluded and know that I will be a better person for it..get it? a better person?

No Hep C and No Cancer-YEAH!
Peace and Love
lioninsunheart

Type0Negative · « **Reply #125 on:** April 04, 2018, 05:37:07 pm »

I hope, evrything goes well, Lion.

And i got a cold. I was avoiding exposure religiously, but here it is. And i am in bed with low grade temp. With the mavyret buzz it feels worse than it probably is. Back to survival mode.

lioninsunheart · « **Reply #126 on:** April 04, 2018, 05:56:50 pm »

Sorry for your cold Type O..and oh yes-the annoying buzz which still remains after 5 days of stopping..much less of course..but isolated patches of rash still exist, AND I did manage to save at least 75% of my hair.
Yes-I hope so as well, at least it's a procedure without sponges..I have always dreaded a surgeon leaving either instruments or sponges inside me.

And I read a disturbing article about the new forms of bacteria that are antibiotic resistant causing 23,000 death's in the U.S. (2017).
https://www.nbcnews.com/health/health-news/nightmare-bacteria-are-trying-spread-u-s-cdc-says-n862436
I don't have any fear surrounding these statistics nor do I believe that coffee can now give you cancer. When will they ever get it right?
Nah--just want tomorrow to be over.
A cold would be vastly more welcome.
Thanks for the well-wishing.
Drink plenty of liquids.
Peace and Love
lioninsunheart

Type0Negative · « **Reply #127 on:** April 04, 2018, 07:41:54 pm »

When is your procedure?

Did they check the end of treatment VL?

The cold is no fun. Plus i am worrying the virus can break through weakened immune system.

Lynn K · « **Reply #128 on:** April 04, 2018, 10:10:11 pm »

Hi TypeO

If the virus is gone it can’t “break through” it is not present to do so. A weakened immune system cannot cause an infection to develop you do not have.

That is the purpose of treatment to completely eridicate the virus from your body.

Type0Negative · « **Reply #129 on:** April 05, 2018, 09:38:09 pm »

I was hoping you would say this, it is comforting, but I was not undetected at 4 weeks, and I only have 8 weeks so it is not good to be weak and sick.

Lynn K · « **Reply #130 on:** April 05, 2018, 10:12:45 pm »

Ok but most who fail do so by 4 weeks post not just weakly detected but with a full definable viral load approaching pre treatment levels.

Hang in there

lioninsunheart · « **Reply #131 on:** April 06, 2018, 12:15:04 pm »

Great information Type O and Lynn.
Forgive for going off thread (again) just thought I would report.
The procedure was started at 12:30 p.m., took 1 1/2 hours, and 4 hours in recovery and then home. When I woke up from 'general anesthesia, the anesthesiologist and the attending surgical nurses reported it was a "Success." Which I, in my stupor, took to mean they had eradicated all cancer cells from my liver. I will need another MRI sometime next month for a formal assessment and analysis.

Also, all of the attending doctors, the Radiological Imaging Surgeon, my Oncology doctor, my Infectious Disease doctor, and my Primary here in Chelan ALL confirmed that Hepatitis C was the leading factor in the growth of the cells, along with some debatable lifestyle and dietary choices, namely alcohol use.
Not having ANY alcohol for the last 16 years helped immeasurably in this whole process.
When I receive the final outcomes from both Hep C and Cancer then I really believe that a total dietary change will be in order, which I am no stranger to.

They had a difficult time drawing blood (again) because of the disfigurement and healing of my hands from the Mavyret. All in all, it went well.
I'm still itching, however, when I scratch the rashes I am not getting the 1-hour burning (painful) response afterward. Which I totally welcome after 3 months of it.

My eyes seem to be clearing up and my foggy mind but I don't expect their full recovery until the Mavyret is out of my system and my body adjusts to the Microwave Ablation and abscense of the cells that have been demanding so much attention from my immune system and while blood cells.

Time for Healing.

Was the grueling Mavyret treatment worth it? Yes.
Was finding the tumor on a Hep. C. Ultrasound worth it? Of course.

Type O-please be as patient as I was on my 12-week treatment (don't get me wrong but sometimes I wanted to stop it) there will be an End TO IT! I assure you, and when you report Not Detected-we will have reason to celebrate.

Peace and Love
lioninsunhear

Type0Negative · « **Reply #132 on:** April 07, 2018, 01:07:23 pm »

Congratulations on your hardware repairs and updates! Hope you will mot need any more work done on you!

For me completely staying clear from alcohol was difficult because it was part of lifestyle, and my partner likes it more than me, and iit is a bad influence on me. But staying 2 nd month clear from it showed that it is not that hard. And saves money. I can be ok to just eat.

Lynn, the way i imaging it, my body may be still in the process of clearing the virus and being sick and having suppressed immunity is probably not helping it. On another hand, the treatment works for individuals with HIV and AIDS, also it does not mean that their immunity always supressed. I dont know. All i know is that i am afraid of that EOT VL test.

Lynn K · « **Reply #133 on:** April 07, 2018, 03:43:01 pm »

Totally understandable your being concerned about SVR12

For me with 3 interferon treatments as a null responder and a relapse with Sovaldi and Olysio I was very concerned my Harvoni ribavirin 24 weeks treatment was not going to work either.

Good luck

Ellie123 · « **Reply #134 on:** April 13, 2018, 10:41:54 am »

Quote from: Pctree on January 01, 2018, 02:33:32 pm

I just got a doctor to prescribe mavyret , it is now awaiting approval from the insurance Co. Did you guys get help from insurance with this or pay out of pocket?

If you have any problems getting approved through your insurance company, call Abbie, Patients assistance program. If you qualify they will provide you the medication at no cost. I thank god for them every day! I just received my medication and will start me treatment today. Will check in to let you all know how’s it’s going. Wish you the best as well!

Type0Negative · « **Reply #135 on:** April 26, 2018, 10:40:17 pm »

Hello everyone

I have not posted in the few weeks, because I am waiting for some kind of results to report. I finished treatment 2 weeks ago, will have 4 weeks post treatment labs. First few days after treatment were not eventful, but now I have this issue... I think my vision got worse. I had almost 20/20 vision and had no issues at all. While on treatment, the vision was very blurry, but not as if you need to clear your eyes, but internal. I thought- I was just buzzed and my brain was interpreting environment differently. The treatment ended but my vision is still blurry! Specially distant vision. It is spring, I look at the trees blooming, flowers everywhere and everything is distorted. It is not like cloudy, more like pixelated. Like if you read for long time black text on white computer background and then turn around and look elsewhere- you would have this... I started noticing that I can't see the titles of the books in my office, and today I looked at my microwave electronic clock and they almost double and I can't see clearly. Is there any way this drug can still be in my system?

Lynn K · « **Reply #136 on:** April 27, 2018, 12:47:47 am »

How old are you? That is one of the first signs of aging eyes it becomes more difficult for the eyes to refocus for distance vision after looking at short distances for extended periods of time. We also tend to blink less when doing computer work.

Started happening to me around 40 I was doing microscope work then. Focusing intently then looking up and having a hard time refocusing across the room.

https://www.webmd.com/eye-health/computer-vision-syndrome

Another common problem with aging eyes is floaters

https://www.webmd.com/eye-health/benign-eye-floaters

I would suggest seeing your eye care professional.

The drugs leave your system if I recall correctly in about 9 days or less.

Type0Negative · « **Reply #137 on:** May 03, 2018, 11:05:25 pm »

Thank you for your reply. I am in my 40s. I doubt it is "normal aging". I started to have blurred vision at about 2nd dose and on. At that time I was dealing with cardiac symptoms and blurred vision was not emergency. I was actually worrying about my hearing because I had episode of hearing change, and then it went away. But vision- somebody here posted that they had blurred vision as well, and I assumed that this is normal and would go away when Tx is over. In fact- I thought it was part of Mavyret "high". I am blaming myself for not reacting to it. I have medical background. I overlooked my own symptoms! But on another hand- if I fully recognized that I had Optic Nerve Toxicity, what would I do? Would I stop the treatment?

I want to start separate thread to make it more visible as this is very serious issue. So I will save some details for the new thread. How did I overlook the symptoms? I have not. I remember walking outside on sunny day, looking at the world and saying, "Holly...! Wow! The world is massed up!" And then I would just go inside. Because the way I felt first 3 weeks- my goal was to survive and make it through the treatment. Yeah, the world looked different. But so as if we have few drinks. Then we go to sleep, and wake up normal again. Well- it been 3 weeks post treatment and the world is still weird! It is this exactly the same visual experience: slight photophobia, cloudy, fuzzy distant vision. Is there any improvement compared to "on treatment"? The buzz is gone, so now my head is clear and I can see changes in my vision. While on medicine, it felt more like buzz than as decrease in visual acuity, so I could not be objective. I reported it to my research coordinator. She told me that such side effect was never described, therefor I must be mistaking it for something else, and recommended to take some allergy drugs. I am upset. My assumption was that if their understudied medication has potential to cause permanent damage, the drug company would be interested in details, pathophysiology and mechanism by which it happening to see if they can address this issue, treat it or do something about it. If this was my multimillion drug, and someone told me that it causes possible optic nerve damage, I would want to find out if this is true, before thousands of people take it. But they not very interested. So I went to the specialist on my own. He did some tests and told me that the symptoms do not directly support 'optic nerve neuropathy", but he cant exclude it, and recommended to stop medication. I said- I already stopped it. But my vision stays blurred.
If you have time and would like to help me research literature for possible treatment and prognosis, it would be greatly appreciated.

Lynn K · « **Reply #138 on:** May 03, 2018, 11:31:26 pm »

As far as reporting there is some information from the prescribing information sheet you should have received with every prescription. They do want you to report. This is how for example they found out about the risk of hep B reactivation

ADVERSE REACTIONS

In subjects receiving MAVYRET, the most commonly reported adverse reactions (greater than 10%) are headache and fatigue. (6.1)
To report SUSPECTED ADVERSE REACTIONS, contact AbbVie Inc. at 1-800-633-9110 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Sorry as only you and one other here that I am aware of have had this issue I would have no idea where to begin. The other member is Type0Negative and just posted on this concern on another thread. Maybe you two could discuss your experiences.

Type0Negative · « **Reply #139 on:** May 04, 2018, 12:00:27 am »

I am TypeO. I believe Lion and Mpl both said something about blurred vision in this thread.

My job is to report adverse effects to the research coordenator. Their job is to research it! I think it is very big deal. If we had 3 people reporting in on one thread, I dont believe nobody else reported it. And I need that data. I want to know if it resolved. I am freaking out. My vision dropped and I dont know what it will do. It may continue dropping, it may stay like this forever which is tolerable but still awful. There many publications regardiong Opnic Nerve Neuropathy or Optic Nerve Toxicuty. It can be from drugs or nutritional (from low Vitamin B12). I used to have low vitamin B12. Maybe I should recheck it and start take supplement- anything to help. This needs to go away! Viagra causes optic nerve toxicity and it is due to lock of blood supply. (I am not on viagra- I am female) It also usually happens very early in treatment and often unilateral (one of my eyes is worse than the other). I need to figure out what exactly caused it. Can it be autoimmune? Like in Multiple Sclerosis- optic neuritis- due to demyelination- immune system attacking nerve shielding.

And I still feel like I have the drug in my system. It mostly my vision and it feels like it stored somewhere in my bones or muscles or fat and it gets back to blood stream time to time. It's like I can see it.

Lynn K · « **Reply #140 on:** May 04, 2018, 12:12:24 am »

Thanks for checking in type O I hope you all can help the research and get this resolved for your better health

Type0Negative · « **Reply #141 on:** May 04, 2018, 09:37:00 am »

I am Typ0 and i am one person with severalnpersonalities, but we all post under the same username. Lol. Just kidding. I am sitting in a large room with 100 pther people and i can see across the room, but thevquality of image is not the same. Like low pixel per inch or low resolution. Will justwait. Thanks

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