I am on the homestretch of triple therapy, incivek, ribavirin and peg. This Friday will be my 23 injection of 24. I've been undetected since week 2. I've just come from the eye doctor for my annual exam. It seems I now have "cotton wool spot" in both eyes! I was told to go see a retina specialist. I know this is another wonderful side effect of the meds. I've called the nurse coordinator of the study and I'm waiting for direction, continue or not. Anybody out there have this issue? I'm so close to the end but would hate to do further damage to my eyes. HELP
Did your eye doctor refer you to a retina specialist? I mean, did he make the call and get you in to be seen by the retina specialist ASAP on an urgent/emergent basis. If not, you should call an opthamologist who is a retina specialist and be seen on an urgent/emergency basis. Tell them over the phone when you make the appt. that you are on Interferon treatment and you were told you have cotton wool spots by your eye doctor. The specialist should see you the same day you call. They can make room for emergency patients. They will probably do a retinal scan as well.
Also, call and let your Hep C treating doctor know that you have developed cotton wool spots.
As you know, Interferon can cause cotton wool spots as well as retinal hemorrhages.
"Cotton wool spots are small areas of yellowish white coloration in the retina. They occur because of swelling of the surface layer of the retina, which consists of nerve fibers. This swelling almost always occurs because the blood supply to that area has been impaired and in the absence of normal blood flow through the retinal vessels the nerve fibers are injured in a particular location resulting in swelling and the appearance of a "cotton wool spot. " The most common causes of cotton wool spots are diseases, which affect the retina such as diabetes and high blood pressure. Often cotton wool spots will disappear on their own, but new ones may occur because the underlying condition may continue to cause blood flow problems. Most often the cotton wool spots themselves do not cause visual difficulties, but the condition which led to the cotton wool spots can cause retinal damage and the best treatment is to address the disease that caused the cotton wool spots initially. "
"Decrease or loss of vision, retinopathy including macular edema, retinal artery or vein thrombosis, retinal hemorrhages and cotton wool spots, optic neuritis, papilledema and serous retinal detachment are induced or aggravated by treatment with Pegasys or other alpha interferons. All patients should receive an eye examination at baseline. Patients with pre-existing ophthalmologic disorders (e.g., diabetic or hypertensive retinopathy) should receive periodic ophthalmologic exams during interferon alpha treatment. Any patient who develops ocular symptoms should receive a prompt and complete eye examination. Pegasys treatment should be discontinued in patients who develop new or worsening ophthalmologic disorders."
I had the same thing happen to me at around week 36. I saw an opthamologist who referred me to a retinal specialist who then diagnosed cotton wool spots. He told me they were occasionally a side effect of the Interferon, and that they would probably resolve after treatment ended. I am currently 13 or 14 weeks post treatment and the spots have indeed gone away.
You are doing the right thing in seeing an opthamologist and a retinal specialist. This should be monitored by a professional who can properly determine the seriousness of your condition.
Did you continue with treatment? I've had every side effect listed except vomiting. Lucky me. Is it really necessary for me to do the two remaining weeks? I'm still waiting for the doctor to all me back. Soooo frustrated.
Thanks so much for the advise. My eye doctor thought I could wait until end of treatment to see a retina doctor but I think I'll call tomorrow to get an appointment. Better safe than sorry. This as you know is one hell of a ride and yours was twice as long!
The retinal specialist didn't feel that I was in any danger of worsening or permanent damage to my eyesight, so he cleared me to continue my riba/interferon treatment. The eye doctor was also in contact with the gastroenterologist who supervised my HCV treatment, which I think is important.
I'm not a doctor, so I can't answer the question of whether you can/should/shouldn't continue, but hopefully your doctor will be able to tell you.
i'm in week 27/48 of treatment. triple with Inckvek. I also had to see and eye doc for several reasons. i was diagnosed with Oculomotor nerve palsy. it's like double vision, only is vertical not horizontal. also i am getting a lot of flashing and my eye muscles are tired all the time......generally my eyes are a mess. but the eye doc said as long as my retina is not detached, it should clear when i stop treatment.....
at least i don't have optalrectalitis......you figure out that one out. it involves your head being somewhere and you have a #(#^% outlook on life....
sorry i couldn't resist......keep going and finish treatment you are so close.
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