Re: retinal bleeding on tx

[ladybug52]

I didn't think I could spell hemmorraghage correctly and it looks like I'm right. We had a person named Sharen post prior to Christmas on the community forum. She had retinal bleeding behind her right eye and was afraid she was going to lose sight in that eye. I've been so worried about her, and sadly, selfishly worried about my own vision. She never posted again that I am aware of. My dr looks behind my eyes at each check-up for problems, she said she would refer me to an opthamolgist if I get symptomatic, dilation of the retina provides a better picture. Not really worried about my vision, but I can tell it's more dificult to see thru the contacts, maybe due to dryness?

[ChrisDDD]

Yeah, everything you said makes perfect sense.  I was so mad when I was taken off treatment last year I went and saw an ophthlmologist at Beth Israel.  Since he was with the same hospital as Afhdal and, big surprise, works with Afhdal and his patients, he and Afhdal and myself, as well as my local liver doc and ophthalmologist, all agreed I will submit to as many retinal exams as they request.

For convenience's sake, I am 52, female, genotype 1b, diagnosed '93, carried HCV since '76, had three biopsies.  Latest biopsy in July '05 showed Stage 2, Grade III with bridging fibrosis, no cirrhosis.  LFTs remain in the mid 50s.  VL at present is higher than it's ever been.  Failed IFN monotherapy in '98, but did clear to zero at week 4, then rebounded and was kicked out of the trial.  Did Peg/Riba in '00, kicked out again after six months, never cleared.  Started Infergen/Riba January '05, retinal bleeding discovered at week 9, taken off treatment again.  VL at beginning of Infergen/Riba 2.9 million, went to 750,000.  Eyes are completely normal now, and VL is 6.5 million.

I think I said before my starting VL with Infergen was 6.5 million.  That's wrong.  It was 2.9 million, and is now 6.5 million.  Lots of fatigue, brain fog.  Otherwise no symptoms really, except blood work got a little screwy, bilirubin, etc.  Is coming back to normal with blood pressure medication.

[Imagine]

I knew when I typed lightning in prior note that it did not look correct but I guess I was to lazy to fix it, ha.

Yea those lightning bugs made really good war paint :)

[ladybug52]

LOL! I know what you used to do to those lightning bugs! I had a lot of glow in the dark jewelry on my fingers and ears. Plus we were always tring to collect them for science. We heard someone would pay us for them but never got past the collecting them in a jar stage. Darn! I could be living off those bug sales now if I had played my cards right and invested well!:)
Janice

[Imagine]

Hey Bug,

My tx was 48wks. The visual distubances went away a month or so after stopping.

By the way, I use to catch June Bugs, tie a thread to them and fly them LOL. I also use to "play" with the lightening bugs. I won't go detail with what we use to do with them.

[Kalio1]

How about having an opthamologist onboard and having one that is checking you regularly through treatment? Now you have the blood pressure under control seems to me to be part of the solution as your high BP probably did contribute to your dilemma. Because you had that experience once with IFN doesn't mean it will happen again. I hear your frustration. I know your doc is top notch and I understand his concerns but reading here for almost 2 years it is clear one tx experience can be be vastly differant from the next, even with the same person on the same drugs. If you have an eye expert on board checking regularly with the caveat that if any problem arises you will stop, maybe he will let you try again. Maybe consult with another top drawer Heptologist, see if you can get an advocate for giving it another whirl.

I would think the chances of trial acceptance would be slim with that issue in your history, ( very posible I could be wrong there)SOC seems a possibility with the right docs in place. Im just stubborn enough that I would keep consulting until I could get docs that would let me try. Im sorry I cant recall your stats at the moment, having a rough day here, but if it is imperative that you treat maybe aggressively pursuing docs that will give it a shot will do the trick.

Sometimes people are told by their docs to stop therapy due to blood level concerns and they have gone out and hired a Hematologist and been able to stay on therapy because a major portion of the liability is now transferred to the Hemo, maybe that same strategy can work for you with the right Opthamologist onboard.
Hang in there, that would drive me crazy, especially if the problem was now resolved.
Don't give up, a solution might evolve.

[ladybug52]

I'm not a dr but I know that high blood pressure can cause nose bleeds and retinal bleeding from my own Dr. Best of luck getting into tx.
Bug

[ChrisDDD]

P.S.  I also had the cotton wool spots.  Spent all afternoon listening to webcasts about VX-950 from Boston Liver Conference.  No mention of eye problems at all.  It seems best way to cure and achieve SVR is with higher-dose Peg&Riba and/or VX-950 or other protease inhibitor.

Also when I developed retinal problems my blood pressure was high and other screwy blood work.  High BP is under control now with meds and blood work coming back in line.  I thought maybe the retinal issues were caused or least made worse by high blood pressure?  Had severe nosebleed, for example, 5 weeks into treatment.

Just pisses me off that other people get to treat when I don't, on disability through work, good insurance, remarried, excellent time to treat right now.  I just want to go on with my life!  I don't want to go blind to get rid of HCV, however, but don't want to progress to cirrhosis and lose 30 (?) years of life because I didn't risk treating due to fear of retinopathy.

[ChrisDDD]

A great big thank you to all of you for your support and encouragement!  I don't remember being asked to go through an eye exam on monotherapy or Peg/Riba, but the dilation was required before starting on Infergen/Riba by a retinologist, very thorough.  I thought the retinologist and liver doc were being overly cautious when they insisted on a 3-month follow-up after the first in Dec. '05, which was completely normal.

When I went in for 3-month follow-up, after 9 weeks on Infergen/Riba, they found retinal hemorrhaging and cotton wool spots, and stopped treatment immediately.  I was furious and extremely upset, as I'd had very tolerable side effects and VL dropped from 6.5 million to 750,000 by week 4.  I was afraid to report visual symptoms to the retinologist fearing this very thing, that they would take me off treatment.  I had two separate experiences of hazy, cloudy vision after my shot which only last a few minutes, and one episode of mild floaters.  That's why I went to Ahfdal for a second opinion and also a second opinion at Beth Israel re the severity of the retinal hemorrhaging.  All four doctors concurred, Ahfdal mostly because he didn't consider a drop to 750,000 from 6.5 million very impressive and predicted I wasn't going to clear anyway.

I know I just get myself frustrated doing all this research when I know Ahfdal already knows way more than I ever could, and no research I do will make any difference in whether I get into PROVE 3.  It's up to Vertex and Ahfdal.  I've even offered to have my eyes dilated every day (probably not good for my eyes!) but realistically once a week or whatever they suggest if they'll just give me a chance.

Thanks for listening.  Frightened, frustrated and angry, as are my three daughters!  I hope to hear from Beth Israel this coming week to begin pre-screening.  I wanted to have all this info to tell them to talk them into letting me in, but if I get in, I get in.  If I don't, I don't.  If I respond, I respond.  If I don't, I don't.  Sometimes it's just hard to accept.  Be well!

[chcnme]

Hi Chris. I'm so sorry you're going through this.  I wanted to respond in that other thread when you posted on VX (and whether or not it could keep you out of the trial), but by the time I had time to sit down and respond, the thread had become very long.  My knee jerk (since I believe - just my personal - that subjects are picked according to the ones they believe are most likely to do the  best)  that you could have a difficult time getting in the VX nonresponder trial with that prior history.  Has Dr. Afdhul (sp?) talked to you about being a candidate for regular standard or care (without VX-950)?  If so, and if VX does not pick you, don't give up all hope on not ever being able to treat at some point.  Oh I know it pisses you off and that's very frustrating.  (been there on the trial disappointment with VX). IF you are deemed by Dr. Afdhul a candidate for SOC again, that will be a very good thing, and it's possible - even if VX didn't pick you and that option falls to the wayside - that you can still treat, AND its also possible VX will be available in a few years and you could treat then with VX.  Try to keep your chin up.  Got you in my prayers.

[ChrisDDD]

Hey, thanks for much for the post.  I saw where I did a P.S. about the cotton wool spots, yet had already mentioned it in my prior post.  See?  I don't need to be on treatment to be "not all there" mentally!  I can do that just fine all by myself! :)

My understanding from Ahfdal and my local doc is they would also rule out maintenance interferon, indeed any kind of interferon, because of the retinal issue.  The good thing is the research appears to be headed in the direction of protease inhibitors without IFN.  This should be an interesting month!  Take care.

[ladybug52]

I enjoyed the comments. Myown, I wear the 2 week contacts but often wear them longer if they don't feel tooo gritty. Imagine, How long was your tx when you are referring to 2nd half? How long after tx before the symptoms stopped?
Morgaina, I remember you well and am glad you saw my post. I have missed seeing you around. Feb is just a few weeks away!  Kalio, you say brain tumor and I start getting a headache right above my eyes!
Chcnme, you crack me up! I'm glad you saw that post too. I think the advantage of having a job is that I don't have time to sit around and think up things to worry about. I have way too much time on my hands!

[chcnme]

Hey Ladybug.  I remember her, too.  I hope she's doing OK.  She had a retinal detachment (I think from treatment) and had laser surgery in that one eye.  I knew one other person besides her and ChrisDD who were taken off treatment due to retinal problems. Both my GI docs volunteered the risk of eye problems  (rare).  The doc I've been seeing for the past year said he recommends an eye exam prior to starting treatment.  I had one done a few months ago.  Eye doc told me "the good news is you have no disease process; you have simply reached the ripe age of presbypopia" :)  

Your GI doc can tell with that little light if you need to be referred to the eye doc.  You will also know something is up (if anything ever does happen with your eyes)  - vision loss or intense flashing lights (strobing, like Imagine mentioned). I also used work for an ophthalmologist and have seen patients come in saying  "I can't see over there"  (pointing to the wall).  That was always an emergency.  Quick intervention is the key if you ever have loss of vision on tx,  but your GI doc can tell some things with that little light and will refer you if there are changes in your eyes that warrant further workup.  

Paranoid?  OK (here we go)...close your eyes and repeat after me  "I am not seeing flashing lights, I am not seeing flashing lights, the reason I have sudden loss of vision right now is because my eyes are closed" :)  

Now open your eyes :) Hang in there!

[Kalio1]

Yes that is true, they can see some issues with a lighted scope and it is very good that your doctor does that as part of your exams but to get a full exam and ally your fears, I'd go see an opthamologist and be fully dilated because there are things they can not see unless you are dilated. My lesion were detected with dilation. Then you will know exactly where you stand and know you have had a thorough exam.
I used to work for one of the opthamologists that invented and developed the laser treatments for retinopathy and I learned the importance of dilation from him. I remember him diagnosing a brain tumor in a patient one day, believe it or not! It is true the eyes are "the window to the brain"

( please dont let that make you worry about brain tumors!!)

When I was a young woman, my vision went from 20/20 to blind as a bat in less than 3 months. That experience stays with you, the doctors were extremely concerned and each day when I awoke I could see less and less. It was a frightening experience. Fortunately it halted although my visual acuity is legally blind without my spectacles. I did a lot of research on the eye issues with IFN tx due to that experience. I was worried about tx affecting what little vision I have left. It really eased my worries to discuss it with the opthamologist, even though he did find some issues going on, he explained it well and I don't have to worry  over it so much now.

[Morgaina]

I also had cotton wool spots and flashing lights. Post tx my distance vision actually improved but up close is much worse. Have more floaters but the larger cotton wool spots are gone. I'm really impressed with you Bug, how could you remember my legal battle with all the people you have talked to over the last few months. Seems your brain is going to get through this without many scars!! Mine is limping along but improving (brain fog, short-term memory, ANXIETY, depression, stuff, stuff, stuff!!) The compensation for tainted blood should be through all court sittings by end of Feb. so hoping all goes well. Thanks for asking!

[ladybug52]

BTW, Sharen was also concerned that cleaning her home with bleach was a contributing factor, she wasn't sure. Now I'm a little afraid to clean with bleach too! I just need to get into an opthamologist get my eyes dilated and rest my fears. Doctors can see behind the retina with a lighted scope, I know that is a way to look for indications of high blod pressure. But the best is to have the dilation. Thanks all for your help. Paranoia a symptom of tx?
Bug

[Imagine]

I experienced visual disturbances the second half of my tx. One was "strobing" (light flashes) for a few seconds especially in the mornings. I also had the cotton wool spots. They have all gone away after tx. Before starting tx it was required of me to get a retinal scan, which showed all clear for me.

[Kalio1]

By what you posted, I can't tell if you had an opthamologist examine your eyes prior to tx? The only way to see is if the doc dilates your eye and uses a lighted tool to look. hining a light in your eye and looking doesn't do it.

If you are worried, I'd go see an opthamologist. I had some trouble with bleeds in the white of my eye, very ugly and scary but according to the opthamologist not a big deal. When he dilated my eyes he said he saw some lesions but he felt they were caued by IFN and were OK. They would resolve when treatment ends. I also have the floaty puffy things (cotton wool spots) and occasional flashes of light and reduced acuity but I was assured it will resolve after tx but cautioned to return if it got worse. It might eae your fears to see an opthamologist and have your eyes dilated.

[Myown]

i stopped wearing the contacts now that i'm treating so that my eyes wouldn't start to bother me any more than what they may. also i have the contacts that you change every 2 weeks (take them out daily and clean) so i was afraid of the same worry as with tooth brushes. though no blood in the eye,(hopefully) i don't want to take the chance of any body fluid re-infecting me once i'm clear. Some or many may think that is overly cautious, but i'd rather be on the safe side.