Author Topic: Eye problems with Harvoni? (Read 21609 times)

Teebear · « **on:** September 05, 2015, 09:40:48 pm »

I am on day 14 of my tx of harvoni I have had several side effects which seemed to have subsided but now I seem to be having a problem with one of my eyes I have developed lumps in my eyelid and the eyes is swollen and red has anyone else had any issues like this? Please help me it is very painful!

Lynn K · « **Reply #1 on:** September 06, 2015, 02:37:59 am »

I would see you eye doctor for that.

Teebear · « **Reply #2 on:** September 06, 2015, 07:33:33 am »

This morning my eye was swollen shut it's looks bruised and the right side of my face has a sag it is kinda scaring me.... I think i may need to go to the hospital

Rosie13 · « **Reply #3 on:** September 06, 2015, 08:48:07 am »

Hey Teebear ,I am hoping you have had your eye checked & everything is better today.I live in Florida so we get bites etc all the time but what you described would have sent me to doctor right away. Please let us know how you are feeling ....

andresdelj · « **Reply #4 on:** September 14, 2015, 01:02:47 pm »

I finished eight weeks of the Harvoni treatment. Viral load is undetected. My eyes got really dry the first week on Harvoni. The over the counter lubricant worked at first. Now I am on prescription eye drops .I have to use the drops every two hours to be able to see. I also am wearing glasses to see a little better.. I was wondering if you went to a eye doctor about your issue. If you haven't you need to go before your eyes get worst. I think the Harvoni is causing eye problems and they don't know about it yet. Good luck and let me know what they find.

andresdelj · « **Reply #5 on:** September 14, 2015, 01:02:57 pm »

I finished eight weeks of the Harvoni treatment. Viral load is undetected. My eyes got really dry the first week on Harvoni. The over the counter lubricant worked at first. Now I am on prescription eye drops .I have to use the drops every two hours to be able to see. I also am wearing glasses to see a little better.. I was wondering if you went to a eye doctor about your issue. If you haven't you need to go before your eyes get worst. I think the Harvoni is causing eye problems and they don't know about it yet. Good luck and let me know what they find.

Rosie13 · « **Reply #6 on:** September 14, 2015, 01:13:59 pm »

Hi andresdelj, sorry to hear about your eye problems & hope that iT resolves soon so you can jump up in the air & be extatic about undetected labs!!! So happy for you on your super results & fingers crossed the eye stuff is resolving after treatment. Was there a reason for the 8 wks? I am on the same too & wondered if yours was a low viral load or fibroscan result. Be well, Rosie

andresdelj · « **Reply #7 on:** September 14, 2015, 02:53:02 pm »

Rosie13 Thank you I've had a low viroload and my fibroscan was also good. They can't explain why my liver was in such good condition considering I've had hep c for 20 years. But I still had all of the HCV symptoms. I feel so much better now that I do not have hep c . I would be happier if i could see better.I am in a research group because of my liver condition. Hopefully everybody will only have to put up with the treatment for only eight weeks. It was a long eight weeks for me.

Rosie13 · « **Reply #8 on:** September 14, 2015, 03:29:49 pm »

Hi andresdelj...You are so right ...feeling for the 24 wk.people.Time is dragging on day 10.When I take my pill I just sit down for about 2 hours till I start to feel normal.Amazing the energy bursts & then I get so tired too.Nap was never in my vocabulary till now!

andresdelj · « **Reply #9 on:** September 14, 2015, 04:46:20 pm »

Imagine going to work after Harvoni pill.

Tom1952 · « **Reply #10 on:** September 14, 2015, 04:56:54 pm »

Quote from: Rosie13 on September 14, 2015, 03:29:49 pm

Hi andresdelj...You are so right ...feeling for the 24 wk.people.Time is dragging on day 10.When I take my pill I just sit down for about 2 hours till I start to feel normal.Amazing the energy bursts & then I get so tired too.Nap was never in my vocabulary till now!

I am happy to hear about your energy bursts! I am dreaming about having energy and a clear mind again.

Rosie13 · « **Reply #11 on:** September 14, 2015, 11:50:54 pm »

Now I didn't say clear mind! I left the dogs outside oops & havn't found my truck keys yet...I drove home so they are somewhere!

MikeDsnizzy · « **Reply #12 on:** December 26, 2015, 08:29:57 am »

Yes, I'm having eye problems too. The little red bumps under the eye lids is from Optic Nerve swelling causing vessels to burst in the eye.. I'm have issues with both eyes but, my right is worse. I'm having a specialist (WELL 4 specialists) trying to get to the bottom of this whole thing. I'm very scared right now. The swelling isn't going down. All of this started after starting the Harvoni. Now it's bad. My blood pressure is now up and down. It was 165/96 at one time. I never had any issues with my eyes---ever!! Please, anybody having issues like this let me know please!!
Mike D.

andresdelj · « **Reply #13 on:** December 27, 2015, 06:27:48 am »

Mike, One week after I started my harvoni treatment the migraines started, than the chronic dry eyes . I did an 8 week treatment. The first week after my treatment I woke up with my eyes full of mucous and I was partially blind. My first mistake was going to a optometrist. You need to go to a ophthalmologist. The optometrist gave me predeson eye drops for the swelling every 2 hours. My eye pressure was at 40 in my left.eye and 45 in my right eye. The drops worked bringing the pleasure to 20 and 25. But the optometrist took me off the predeson drops without tapering me off and my eyes got worst. Then he gave me drops to dilate my eyes for 5 weeks with some other drops. Two months passed and my eyes got so bad I was not able to work. He finally gave up on me and sent to a ophthalmologist and a ruemetologist. I was checked for all types of diseases . It has been six months and I can finally see . I am.still using different eye drops. The worst part of this whole thing is that they don't know what is causing my eyes to swell up and I can still go blind from this issue. Hopefully you don't have to go through what I am going through. Good luck and please let me know what your doctors find.

MikeDsnizzy · « **Reply #14 on:** December 27, 2015, 08:09:21 am »

Dear andresdelj, wow, that's what I was looking for!! I have,,,, I've gone to an Ophthalmologist, Retinal Specialist, and on this past Dec.24th at 7am to an Neuro-Ophthalmologist. This has been going on for six months. It started about half way through the Harvoni treatment. I've had a brain MRI and many blood tests before-->**NOTHING**. The Neuro-Op. Dr. Andrew Lee is one of the best in the country and is also perplexed. He ordered 8 more blood tests and an skeletal MRI--which is gonna be around the eyes and the outside of the skull. Their looking for clotting. I have a funny feeling that nothing will be found---and I hope they don't find any clotting. So, prednisone drops worked a? He asked me if I wanted a shot but, I have necrosis and he said it will increase the necrosis with a shot but, maybe the drops will be better. I'll call him Monday and see what he thinks. I thank you so much for this confermation. I wish more would talk about this side effect. I am going through all the things you went through. Thank you and may God Bless you too---maybe we can talk about this further on the phone, if you'd like.

andresdelj · « **Reply #15 on:** December 27, 2015, 08:35:39 am »

I belong to a Harvoni support group on Facebook. The worst thing some people got was dry eyes. Every bodies answer is to drink lots.of water . That wasn't what I needed I drank lots of water. I've had dry eyes for a long time. What I am going through is not dry eyes. We need to get our doctors together so we can then go after gilead for some answers. I'm glad I do not have HCV anyone but its.not worth going blind.

Lynn K · « **Reply #16 on:** December 27, 2015, 02:50:22 pm »

Hi folks

This is on the prescribing information sheet for Harvoni tat came with your prescription.

https://www.gilead.com/~/media/Files/pdfs/medicines/liver-disease/harvoni/harvoni_pi.pdf

-------------------------------ADVERSE REACTIONS-----------------------------
The most common adverse reactions (incidence greater than or equal to 10%, all grades) observed with treatment with HARVONI were fatigue, headache and asthenia (6.1)
To report SUSPECTED ADVERSE REACTIONS, contact Gilead Sciences, Inc. at 1-800-GILEAD-5 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Have any of you reported these symptoms to the FDA? It would help everyone out if you would.

Best to you all

ggg · « **Reply #17 on:** January 30, 2016, 10:52:12 am »

Hello, i'm evaluating to start with harvoni, I would like to know all side effects related to eyes and vision because I have a congenital retinopathy (r.o.p.) i had surgery with scleral buckle in dx eye for retinal broke, and I had many laser session for retinal tears in both eyes, so my eyes are not very well with many retinal injuries. For me is a MUST to not make worse my retinal condition. (I have waited for interferon free tratment cause of my eyes condition)

@andresdelj do you have any news? how do you feel with your eyes?

somebody have other severe eyes issues?

Rosie13 · « **Reply #18 on:** January 30, 2016, 08:25:04 pm »

Hi ggg, you have some valid concerns about your eyes because of preexisting issues.I wonder what your current viral load is because that would be an important issue to discuss with your specialist about your sence of urgency about tx at this time.I lived with the torture of knowing my disease was incurable for a long time before Harvoni became available.It was a long road to get the drug so I never thought about other issues except to get rid of the disease.HepC is responsible for so many problems that go away during tx.One thing I know for sure I am so happy to be almost over this ordeal & the 8 wks of tx were a walk in the park!!I look forward to hearing more about what your Dr. thinks about waiting.Good luck on your decision .

deidi · « **Reply #19 on:** January 31, 2016, 12:45:35 pm »

MikeDsnizzy... how are the eyes doing?

FutureThinker · « **Reply #20 on:** January 31, 2016, 01:27:38 pm »

ggg: I don't know what genotype you are, but if you're 1, there are now some options to the Harvoni, namely, Zepatier by Merck as of Friday. Merck is recommending getting tested for polymorphisms prior to treatment with Zepatier, so ask your doctor about all options for your specific genotype in making your decision. It's certainly understandable that you're concerned re: eye effects. FT

ggg · « **Reply #21 on:** February 07, 2016, 11:47:45 am »

hi, my doctor opinion is who I have a low infection (in my country I could not have an havoni prescription, it is reserved only for F4, but I found a way to import from outside country) and can wait, but I would like to solve this problem, i don't want to aggravate my liver situation with cirrosis or tumor.. the only obstacle is my eyes problems, my ephatologists have done no weight on it saying that havoni officially has no eye side effects.. but reading this forum i know about side effects eyes related.. my eye doctor say he doesn't know about this drug and eyes side effects because is new on the market and it occurs years to know real effects of a drugs..

for what I read in this forum seem that eyes related problems are caused by high blood pressure, so I would like to know:

there is an effective way to take blood pressure down in case it become too high continuing to take harvoni?

these are my clinical info:
infection estimated at birth (blood transfusion on 1980), but found 5 yeas ago
genotype 1
epatic biopsy (2012): grading 4 fibrosis 2 ishak score
hcv-rna (11/2014): 2.300.000 ui/ml
fibroscan (2015): f0
alt (2015): 45

since now I have no issues.. only easy fatigue as i always had.

Thanks

andresdelj · « **Reply #22 on:** February 09, 2016, 11:54:10 am »

@ggg I am not a doctor and my opthalmologist does not know what caused me to loose my vission. My issue started a week after I finished my Harvoni treatment. It's been five months I my vision is back to normal but I am still using the drops. My Dr. Told me that my eyes are not back to normal yet if I stop the drops I can loose my vision again.

Mr. Bob · « **Reply #23 on:** February 11, 2016, 10:22:50 pm »

I wonder what the medicine did to the brain to cause these headaches............ I had them on treatment and still do and many report the same.... I still have headaches on and off..... never had headaches this frequent before the Harvoni............ I think it screwed up the brain.... scary..... we need to document this in case Alzheimer or Parkinsons happens in the near future..

RJ 8 months post TX

andresdelj · « **Reply #24 on:** February 11, 2016, 10:26:52 pm »

My headaches are less frequent now. Thank god

ggg · « **Reply #25 on:** February 18, 2016, 02:09:49 pm »

@andresdelj so now you're taking drops for lowering eye pressure? increased eye pressure is the only side effect you're affected now? your opthalmologist has reported any retinal issues?
Thanks

andresdelj · « **Reply #26 on:** February 21, 2016, 05:09:09 am »

I do not have any retina issues. Eye pressure was my only side affect . What do you mean by how am I taking drops for.eye pressure.

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Author Topic: Eye problems with Harvoni? (Read 21609 times)