Bleeding behind eyes?

[Gingertumeric]

I was having severe dry eyes and eye pain, so went to see ophthalmologist. He said I had bleeding behind one of my eyes, asked if I had diabetes (no) or HB pressue, (yes, but as far as I'm aware it is controlled. Then he said the peg interferon can cause it.
Anybody have insight into this?

[ChrisDDD]

The same thing happened to me with my eyes, and I was definitely told it was the Interferon that caused it.  I have genotype 1b, infected 1976, failed all three treatments.  The problem with my eyes happened during my third treatment attempt with Ribavirin and Infergen daily.  About 9 weeks into treatment I had just done my shot and the room looked cloudy or hazy.  I saw the ophthalmologist the next day.  He diagnosed the worst case of retinal hemorrhaging and cotton wool spots he'd ever seen, told me to not do my shot that night and that he would call my hepatologist the next day and report his findings.  I had to stop immediately.

I was devastated, so much so that I begged to stay on treatment even if I did lose my eyesight, because I've seen quite a few people here experience this same problem with their eyes, and when treatment was over they had cleared and their eyesight was fine!

That was in 2005.  I had sought a second opinion from one of the top hepatologists in the country, and he agreed with my first doctor.  I was screening for the VX-950 trial and had an irregular heartbeat, so that blew any chances I'd have for any kind of clinical trial.  The top doctor I referred to I think wants to try one of the new drugs that will still necessitate Interferon but only for 12 weeks and not 48.  You see, I can't do ANY kind of treatment with Interferon because that is what caused the retinal hemorrhaging.  I'm very happy for you that you cleared at week 4.  I've never cleared.  I didn't mean to write a book here, but your post caught my eye (no pun intended).  It does get so very frustrating, until I think of cancer patients and AIDS patients and people who are far worse off than me.

[working dog]

thanks for getting back to us kathryn...i hope you will post how you do....you might clear but i don't know...risky...i felt very fortunate to clear in 19 weeks...and am happy to say my eyes are fine now...eyesight is something we all want to keep...please keep us informed and good luck.....billy

[pooh55811]

I am very sorry you had to stop treatment, but it is better than losing your eyesight. It is great that you were UND at week 4. Hopefully there will be some Interferon free Hep C treatments coming along.

You have a great attitude and it is definitely an asset.

Let us know how things work out. It would be wonderful if you reached SVR.

[Gingertumeric]

Well my hepatologist stopped my treatment in week eleven. I tried to get him to reduce the interferon, or at least let me finish my 12weeks till I finished the teleprevir, but he said absolutely not. This is a rare but extremely serious side effect and he would not risk my going blind. That I can never take pegasys again, which is a real disappointment because I understand that they are now adding interferon to GS7977, that really promising drug in trials now, and there isn't much else with as promising results that will be available,e for one with cirrhosis.

While I'm extremely shocked and disappointed, I feel my only option is to believe that this was meant to happen and that either it saved my eye sight or something worse happening later, or it is the universe saying " ah, you are clear no need to do the whole year".

Whatever the reason or truth, I don't have any control over the outcome, but I do have control over my attitude and I'm grateful I was given the chance, there were no guarantees, I'm grateful I cleared In week 4, perhaps that's good enough, but even if it isn't I've got a lot of living to do, and that starts now!

Thanks for you support and my very best to you all.
Kathryn

[Advocate1955]

There are other sources of caffeine.  My husband didn't drink coffee either, but was eating chocolate.
Advocate1955

[working dog]

i had dry eyes before tx for years but thats been gone since tx...i blamed it on something stuck in my eye but it turned out it was caused by sleeping with one off my eyes just a little bit open...it felt like something in it when it was a dry spot..caused by sleeping with my eye open a little bit then when i woke up i would shut my eyes ...open them....and peal off a little bit of the outside layer of my eye making it feel like something was in my eye...turns out this is very common...not sure why tx cured it at least so far.....billy

[Gingertumeric]

Not sure if he is a retinal specialist, but he is an ophthalmologist. He is very concerned though and as I don't have diabetes, I am monitoring my BP. I did have a baseline test, so this is definitely new since treatment. I will follow up with my hepa after weekend.
Thanks everyone, hope I don't have to stop tx at 11 weeks, but not even remotely interested in going blind.

[Gingertumeric]

I have had one coffee in my life, honest made me so sick I never ad another. Also do not drink or eat anything with caffeine, but thanks for the tip it might help others.

[Gingertumeric]

Yes and no, I seem to often have a headache.

[Gingertumeric]

Yes, but ophthalmologist says the pain is from the dryness, not the bleeding.

[Advocate1955]

My husband had serous retinopathy once, prior to receiving his diagnosis of Hep C and undergoing Hep C treatments.  It was apparently caused by consuming too much caffeine.  The retina specialist advised that he cut down on caffeine and then checked his eyes again 6 weeks later and the problem had resolved.
I agree with others, you should be referred to a retina specialist.
Advocate1955

[can-do-man]

Your doctor is right interferon can be the problem, I agree with WD and pooh you should see specialist. Wheather your having a headache or not doesn't matter........ Good luck, wishing you the best.

[working dog]

my eye pain was stabbing back of the eyes only......lasting most times only 15 to 30 seconds.....no headache at all....

[BoceprevirGal]

  I was wondering if your eye pain was accompanyed
by a head-ache?

[working dog]

you need a retina specialist ....i hope you had a real good eye exam before tx to compare to your situation now...some cotton wool spots might not be a big deal but worse bleeding can happen from the interferon....i was taken right off interferon because of eye bleeding stuff.....told i could never take it again...so i had to either svr or look into the new trials....lucky i did svr....get this looked at asap.........billy

[pooh55811]

I should add that hopefully you are seeing an opthamologist who specializes in retinal problems. Hopefully you had an eye exam and a retinal scan prior to starting treatment so it can be used as a baseline.

I don't know how severe the bleeding in your eye is, but any bleeding in the eye is serious. Hopefully your opthamologist is familiar with treating patients who develop retinopathy and/bleeding while on Interferon. If he is not, then he should refer you to a specialist ASAP. Your Hepa or GI should also be informed. People can have retinal detachments while on Interferon and this can cause blindness in the affected eye.

Therefore you need a specialist who is very familiar with Interferon and ocular problems from Interferon. Depending on the severity of the problem, the Interferon may have to be discontinued, but that decision would be made by your opthamologist and your Hep C treating doc.

In addition, you should be having very frequent eye exams until your condition stabilizes. When I started having showers of floaters (but no bleeding) I saw my opthamologist every week for a while.

[pooh55811]

The dry eyes could be from the Hep C itself or from the drugs.

The bleeding can be from the Interferon.

Here are excerpts and links to side effects of Interferon:

"Ophthalmological side effects of alpha interferon include retinal abnormalities such as retinal hemorrhages and cotton wool spots. These side effects arise more commonly in patients who are diabetic and hypersensitive. These side effects are reversible upon treatment completion or discontinuation. However, a few cases have been encountered where patients experienced acute visual loss. Furthermore, retinal ischemia, a common cause of vision loss and blindness, has also been recorded as a rare side effect of alpha interferon."

http://www.ehow.com/info_8553377_side-alpha-interferon-rashes-pimples.html


"Ocular side effects have included abnormal vision, blurred vision, diplopia, dry eyes, eye pain, lacrimal gland disorder, lacrimation, nystagmus, and photophobia in less than 5% of patients. At least seven cases of retinopathy in patients receiving high dose interferon alfa-2b have been reported. Vogt-Koyanagi-Harada syndrome and serous retinal detachment have been reported during post marketing experience."

http://www.drugs.com/sfx/interferon-alfa-2b-side-effects.html