Started noticing about a month ago that my eyesight was signficantly worse but I attributed it to an outdated eyeglass prescription. Visited my eye doctor on Jan. 19th and got a new prescription. While there he told me my vision had changed dramatically and that I was beginning to get the cloudiness on my eyes that is a precurser to cataracts. BTW, I had a baseline vision exam before starting treatment. He thought that we should wait until my treatment was over and adopt a watch and wait position on the "cloudiness." Anyway, to make a long story short, I got the prescription filled, it made almost no differece in my vision, so I went back for a re-check on Friday. Between 1/19 and Friday, my vision has so deteriorated that I can hardly see to drive. He said the cloudiness has turned into full blown cataracts and that I need immediate surgery. In his opinion this is directly related to treatment. He said the changes in my vision are too "dramatic and rapid" to be coincidental and that there were no signs of cloudiness or cataracts before treatment.
I wasn't that scared about it until now. I went to the clinical options site to check out the link that Jim and Mike provided a few days ago and I CAN'T READ the slides at all whereas just yesterday I oould read my monitor. I'm able to read this board and post but I have it magnified to 170% and it's still blurry, worse than yesterday. On the way home from the eye doctor yesterday, I could barely see to drive.
Has anyone ever heard of anything like this before?
I really dont know whats going on but im glad your on top it, if its cataracts they will put a lenses in the eye and you wont have to wear Glasses, hopefully thats it, i know your scared, you have every reason to be sometimes cataracts will just blow up my moms did, if thats all it is just fix it and be free of your glasses,you are in my prayers, please let us know whats going on ...
Char, you must be very scared and worried to say the least. I am so sorry you are experiencing this. I don't have much info to add but I did notice an hour or so after my injections that my eyes would become dry and red. My vision would blur as well. These symptoms would go away the next day though. I also had "strobing" effects that happened at times throughout tx. I hope you get this resolved.
I haven't posted here before but your post made me write. I have a friend who was on treatment in 2005 and her eyesight deteriorated fast like yours has. She was immediately taken off tx with 2 week left to go. Her eyesight gradually got better but never completely recovered.
She is in Australia and here is a link to the Hep C Review Magazine where her story was printed in the December 2005 issue on page 16.
Her name is Lily and she is a member of the philzone hep forum if you want to contact her for support. Here is the link to that site. http://www.philzone.org/discus/messages/258847/258847.html
I have heard of others having eye problems on tx but never a reaction as severe as Lily's. She couldn't see faces and had to get her daughter to read the posts to her and write for her because she couldn't read. Yours sounds similar. They said hers was toxic retinopathy and yours might be something different.
I hope it stops and heals quickly for you. Nothing is worth losing your eyesight. Good luck to you.
Mine goes bonkers sometimtes and I have found it is because they get really dry. I found some drops Systane a few years earlier. I had Lasick and I suffered from dry eyes. Sometimes they would be so dry that I literaly could not see much. Anyway after years of the Renew drops my doctor recommended Systane. My eyes are so much better. If your eyes are really bothering you but drops in several times a day. When they get better I use drops at night when I get ready for bed. Since I have been on tx it has helped alot. The box is blue and green
I'm sorry. I just reread your post and realized you already answered me. Her's was attributed to toxic retinopathy. I think I'm gonna have to see someone before I do another shot. Thank again for providing that information.
I so appreciate your posting that. It's difficult for me to research right now so it's realy nice for the info to just be right there in front of me. I know how to navigate this site and it's not giving me constant headaches. I'm going to include this in my email to my doctor.
Just so you know, I'm Charlotte. PLN is Pam and everyone does that cuz we're both on the study and PDS is so similiar to PLN. LOL
If I remember correctly, you are stage 0 or 1, so treatment is not a due or die proposition. A good talk with your treating doctor seems in order before you continue on with the drugs. I don't really member your viral load tests, etc, but maybe you've done enough for SVR anyway. In any event, what you describe sounds very serious at face value. Hope it all works out whatever you decide.
oops I get confused on names (pds and pln :) You've given so much of yourself here AND for the trial, and to go what you've already been through and to be faced with what you're faced with now is .... it's gotta be awful, and I feel for you. You know you are not alone - everyone here is pulling for you - big time. You're going to pull on through to a brighter side.
And....I hope you can read what Mremeet said because it was indeed funny as can be :)
Thank you so much for posting that link....wow, it sounds so similiar to what's happening with me. How freakin scary is that? She never really says what caused it probably because she didn't know. The article below it speaks of retinopathy....do you know if they ever figured out if that was the cause?
Goldyn, thanks for answering. Mine probably is due to simple cataracts and if so, I think they can easily be removed. I just need to see a specialist immediately so I can rest more easily.
Willpower, Pdilly and Imagine, I feel better knowing that I'm not the only one that's experienced significant eyesight problems, although I don't think it has anything to do with dry eyes. They don't feel dry but I'm emailing my doctor right now to get to the bottom of this. Thank you guys for replying.
Wow - I am so sorry to hear this, Pam. I know this is scary as heck for you. I've heard many who did have vision problems either on treatment or after (or with Hep C period.) As far as treatment for Hep C, I think we're headed towards more warnings on the potential eye problems, screening, assessment during etc. (My docs, as compared to 3 years ago) have said more about it lately, and it wasn't because I asked - it was more like they volunteered the risk. Immediate surgery, huh? Well - thank goodness you went to the doc and he's on top of things. Hopefully your eyesight will improve 10 fold by the time this is over with.
Here's something about INF retinopathy and other ocular diseases (it's about an MS patient who was on INF and had vision problems), but it gives info on INF retinopathy (cataracts is mentioned in the more rare eye disease assoc. with INF)
Interferons are a group of naturally occurring proteins and glycoproteins which have antiviral, antineoplastic, and immune-regulation properties. They are administered subcutaneously or intramuscularly 1 to 3 times per week. Ribavirin PO is used in conjunction to increase effectiveness. Interferon alpha is used to treat Hepatitis B and C and cancer; interferon beta is used to treat MS. The most common systemic side effects are flu-like symptoms.
Interferon may cause retinal complications as well--and more often than other systemic medication (e.g., hydroxychloroquine or phenothiazines). It may cause vision loss. Some reports state up to 57% of patients taking interferon experience retinopathy (first reported in US in 1993). The two most common signs with interferon-related retinopathy are cotton wool spots and retinal hemorrhages. They are usually found at the posterior pole around the optic nerve head. Unilateral or bilateral. They typically occur within 1 to 3 months of treatment which makes it important to see patient for a baseline exam at the beginning of interferon treatment. Cotton wool spots and retinal hemorrhages normally spontaneously resolve during or after treatment. Supposedly there is no difference in incidence with alpha or beta, but there are many more reports with alpha.
Rarer eye findings
Retinal artery/vein occlusions
Bilateral oculomotor nerve paralysis
Anterior ischemic optic neuropathy
Vascular tortuosity and congestion
Early onset of cataracts
Ocular side effects are more likely if patient . . .
Also has diabetes mellitus, hypertension, or anemia
Is older, female, or has arterial sclerosis
Is on higher dose of interferon
Is also taking antidepressant medication paroxetine (a serotonin-reuptake inhibitor)
Why is this damage occurring? The exact mechanism is unknown. Possibilities include the occlusion of retinal vessels due to deposition of immune complexes related to activation of complement. Direct damage of the vessel walls may be caused by the medication itself or by Hepatitis C virus. Damage may be due to increased viscosity of the blood.
So, what should be our standard of care?
Patient should receive baseline fundus exam before starting interferon treatment. Inform the MD. Let physicians know that patients need to be monitored closely.
Patient should be followed every 3 months.
Take fundus photos to monitor for progression.
Give patient Amsler grid for home monitoring.
Instruct patient to return ASAP if notes any changes in vision.
If sight is threatened, contact patient's MD to weigh the risks/benefits of discontinuing the medication.
Char like we discussed, this is just awful. Keep us posted on what both the liver doc and opthamologist says about this. Both my dad and grandmother had cataracts, which were both removed very successfully with no problems. My dad got them at a relatively young age. I think he was only in his mid-late 50's when it happened. He accidentally splashed some cement he was mixing into his eyes for a little masonry project he was working on. It burned his eyes due to the alkalinity of the cement, causing him to go to the hospital. I don't know if that really was what caused his cataracts, but he got them shortly thereafter. Anyway, the surgery was troublefree and completely successful. I've even seen the surgery on television, pretty gross looking without going into gruesome detail - but the actual cataract just looked like some little sliver of cloudy/translucent tissue. They just plucked it out with a pair of tweezers, and then and voila: crystal clear again.
Anyway, the doctors will figure it out quickly. Based on what you say it sounds like you might be able to continue on treatment. The eye doctor hasn't said it's anything more than cataracts right? No wool spots or retinal lesions or anything like that right? I hope so, would hate to see you drop out so early. But if it comes to that, you know your odds are in all likilihood still very good to SVR. Plus even if you do relapse, you nice F0-F1 liver buys you all the time in the world to wait out better treatments. One way or another, you'll get through this. Hang in there and keep us posted on what's happening with you. And if you cant see have someone dial my number for you! ;-)
Take care, I'll be in touch soon.
PS>> Oh yeah, and here's a *completely* politically incorrect joke to add some levity: Did you know that 75% of all chinese men have cataracts by the time they're 50 years old? Yep, the rest of them have chevrorays and rincolns. I TOLD U GUYS IT WAS POLITICALLY INCORRECT, DONT SHOOT ME!
I actually am on treatment drugs, week 25 of 48. I got assigned to Group B in the study, which is 48 weeks. I did the vertex for 10 weeks and got pulled off of the vertex because of the rash but have never discontinued SOC drugs which is one of the reasons I'm concerned.
Hopefully, it's just cataracts that are growing extremely rapidly as opposed to something more serious. I did just email my doctor as my next shot is tomorrow and I'm a litle concerned about doing it......
Sorry to hear about what's happening. If I remember correctly, your currently off the treatment drugs, so hopefully things will star to improve. You mentioned seeing an eye doctor, but what your treatment doctor said. Just hope it's not as serious as it sounds. Not to compare my eye issues with yours, but I also experienced a few days where things went fuzzy and then later returned to normal. In my case, I believe the swelling and sensitivity was a combination of the drugs plus drug-induced ocular rosacea.
Relieved your seeing a good opthomoloigst tomorrow. A word of caution however. From both personal experience and from reading here, just because a doctor is well-respected in his field doesn't mean he knows anything about how combo treatment affects us. I found this out time and time again. The point being that if it turns out this is potentially something serious -- hopefully it isn't -- then I really think you have to assume it was caused by the treatment drugs and take it from there. Just keep remembering whose eyes we're talking about. I had chronic sinutisitis, ear infections and throat problems for over a year and my ENT still didn't get the inteferon connection. Never had them prior like that, never since. Doesn't take a rocket scientist to figure out what caused the problems.
I certainly don't want to be alarmist and I really hope this resolves soon. Lil was a member of our Aussie forum when it happened to her. As she said in her article it happened really quickly, going from pretty normal to near blind in a few days. I was doing her research for her because like you she couldn't see to do it herself. Once her sight got a bit better she would print pages in a large font and read things that way. She found the screen way too glarey.
She saw a few opthalmologists and she was quite peeved because nobody would actually attribute it to treatment. And nobody knew what to do about it. She was 22 weeks into tx at the time. They took her off treatment straight away and suggested she just wait. Nothing much else you can do in that situation. They said to wait 9 months and reassess then, thinking that if it was interferon induced retinopathy it could take that long to fully stabilize.
Now 18 months later her eyesight is still not what it was before tx. And sadly she didn't clear. She has cirrhosis and soldiers on but she's very wary now and tries to let people know that there is a possibility of serious sides to tx. Not alarmist but say experienced.
Anyway I've been following your story with your VX950 trials. That rash sounded pretty intense and I've been keeping an eye on this site to see how you are doing and waiting with bated breath to see what kind of results you guys get. I'm a geno 1 relapser myself and waiting for the vertex and roche trials to make their way down under.
Glad to meet you and really I hope your eyes are okay.
Sorry to carry on here like this but I just want to stress that Lil's doctors told her to stop tx immediately. You said you have a shot tomorrow. I know I'll probably get blasted for giving advice, especially when nobody knows me here, but seriously I suggest you speak to your doctor again before doing your shot. If it is toxic (interferon) retinopathy then doing another shot doesn't sound like a good idea.
What stage fibrosis do you have? My research suggested that the chance of getting retinopathy increased when liver disease was already quite advanced. I'll see if I can find any more articles.
Did the doctors in the trial do a baseline reading on your eyes BEFORE you started treatment at the Opthamologist? Mine INSISTED and wouldn't let me start until I did - which made me wait two weeks and I was MAD.
I don't know all the details but I know there are HUGE problems that can happen because of the IFN and it can cause blindness (not that I think that is what is happening to you) so they are VERY insistent on making sure you have the eye tests.
But since you were in the trial I am wondering if they made you do it or not?
I think you better get to an Opthamologist doc RIGHT AWAY and stop asking us on the board. This is a SERIOUS sounding problem and you got to get it checked out right away!
GO NOW. GO - WAIT UNTIL SOMEBODY WILL SEE YOU IF YOU HAVE TO WAIT THERE ALL DAY LONG. IT'S NOT WORTH THE CHANCE THAT IT GETS WORSE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi, thank you so much for all your helpful information. I actually emailed my study doctor yesterday after reading the info about your friend, Lil, in the Hepatits Journal. He emailed me back immediately, on Super Bowl Sunday, and has already gotten me an emergency appointment at Wilmer Eye Institute with a leading opthamologist for tomorrow at noon. He told me not to do my shot today until we find out what's going on.
He emailed me that my eye doctor isn't an opthamologist but a doctor of optometry. All this time, for some crazy reason, I thought my eye doctor was an opthamologist....don't know how I missed that. I feel so much better about the whole thing because my doctor does seem really concerned and right on top of it. He's actually emailed me 3 separate times regarding it since yesterday so I know he's taking it really seriously.
Again, thank you very much for all the information that you provided and all your concern and I will let you know what happens tomorrow.
NYGIRL, thanks for always being so concerned. You probably just read that I'm getting in to see a top opthamalogist tomorrow. I'm crossing my fingers that it is just cataracts. That's what my eye doctor said but as it turns out, he's an optometrist. I'm so concerned because it's happening so quickly. I've never heard of cataracts taking hold so quicly but either way, I should know something tommorrow.
CONGRATULATIONS, on doing your last shot Friday night. You're going in two weeks for a pcr? All of us with no exceptions will be waiting with baited breath for those results!!
Good one! Laughing..... Our doctor is right on top of this. In his email this a.m., he said that "If your symptoms turn out not to be related (in the specialist's professional
opinion) to peginterferon, we'll need to discuss where to go - stop or
continue. If, after discussion with the doctor, we decide that it's safe to
continue peginterferon alfa-2a, the slight delay in the shot will not be
important." So, we'll see what happens. I have to say when I got that email, I wasn't devastated about the possibility of stopping treatment. It'll be a different thing if it actually happens of course. I'll definitely let you know.
Thanks again for your help the other day in interpreting my results. I have to admit, I've kind of gotten brain dead since treatment or maybe I've always been that way. LOL
Hi, I just wanted to say it's reallly nice to meet you too. I've been going on and on about myself and didn't even ask about you or your friend. To answer your question, using the Knodell score which I'm not totally familiar with, my score is 5, however the fibrosis portion of it is 0. Inflammation was 3, which is why I made the decision to treat and there are two other components of it that I scored one each on.
I truly feel for your friend...this disease takes so much from us all. I don't know that there's a lot of information out there about toxic retinopathy so it's much appreciated that she shared her story. Like you, I too am anxiously awaiting news regarding telaprevir (vertex). I feel like we should be receiving some significant updates any day now because all participants in Prove 1 were enrolled by the end of Sept. so we should have at least 4 week svr data any day now.
Thank you again for all your help & I'll be talking with you soon.
You're right....a word to the wise as they say. My doctor already emailed me that he's never heard of combo treatment affecting the lens in the eye which does contradict a study that chcnme posted above, however, he seems to be taking it seriously just the same.
I was interested in this post because I was taken off Infergen/Riba therapy last year at week 9 due to interferon-related retinopathy. Cotton wool spots and retinal hemorrhaging were discovered at week 9, after having had a normal baseline retinal exam three months earlier, prior to starting treatment. My only symptoms were cloudy/hazy vision after two different shots that resolved in less than 10 minutes, and one 5-minute episode of floaters.
I never had this problem in my previous two failed treatments, but I agree with whoever posted that we will be seeing a lot more info about HCV treatment, IFN in particular, causing retinal problems. I posted an article earlier that stated this occurs in up to 47% of patients. Patients are usually allowed to continue treatment with close observation, and the symptoms normally resolve once treatment is stopped.
I may not ever be able to take IFN again. One contributing factor to my eye problems was that I developed high blood pressure on treatment, which also can contribute to the eye problem. BP is now under control with medication. I can tell my eyes are a little worse since treatment, but nothing like what you're describing. I want to get well, but not enough to lose my eyesight! Both of my doctors say they have yet to attend a HepC conference where at least one doctor didn't mention a patient having gone blind on treatment.
This is a very serious issue that hasn't received much attention from the media or the drug manufacturers, but it does appear to be much more common than previously thought. I hope my own history of eye problems on IFN will not preclude me from the VX-950 non-responder trial, but it could. Until they come out with drugs that don't involve IFN, I'm screwed. I'm 52, female, geno 1b, Stage 2, Grade 3, non-responder to three different courses of treatment.
I wish you well and hope this comforts you rather than frightens you. You're not alone, and I hope this info is helpful to you. Best wishes, and let us know what you find out.
I have just found this sight- my husband was dx wit hep c in 2007 and by October of 2007 was beginning to lose his eyesight from the interferon and ribavirin treatment( the doctor said that he had never heard of anyone developing that kind of problem from the medication) however I found lots of information about similiar symptons on the internet.
My husband made the decision to stop treatment after on 15 weeks of interferon- but I am afraid that we waited to long- it is now April 2009 and his eyesight is not any better- he is blind in his left eye and sees very little in his right eye.
I would stronly warn anyone against taking this treatment without having your eyes monitored very closely- my husbands doctor did not recommend an eye exam before starting the treatment - but we know he could see very well before he started the treatments... anyone that says the meds did not cause this in my opinion is just crazy.
they have diagnosed by husband with optic neuritis - unknown etiology- but I know the meds caused it...
if anyone has had this experience I would like to hear from them. and if anyone knows of a treatment that would help his vision- please share it with me...
THANKS AND GOD BLESS EVERYONE WHO HAS HAD THE DREADED DX OF HCV AND HAS TO TAKE THIS AWFUL DRUG..
The woman who originally posted this over two years ago (Charlotte aka prettydamscared), mostly recovered her sight after the situation described here (there were a lot of other things going on not described here that were playing a role with her vision problems). She successfully completed treatment and did not go blind because of interferon or the other tx drugs. Charlotte and her husband were killed in an auto accident about 6 months after this post was created (shortly after she concluded treatment). She was doing well at the time and was recovering nicely from the drug's side effects. I treated with her and am very happy to now be hep C free after many years of being infected. You can be cured too, hang in there.
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