Holes in Vision..... Rare and very serious side effect....

Hello Everyone,  
Just wanted to post this as a question and apprieciate ANY feedback from you all...

After 40 weeks of treatment, I received a new lot of medicine with 4 vials in it took the shot and within 3 to 5 hours was throwing up , until I was dry heaving, and then I went to take out the trash and coming up the stairs I saw a hole in my vision.  

Now my doctor has takin me off treatment because some peopple report this "hole in the vision" and go blind...  

Has anyone heard ANYTHING ABOUT THIS?  ANYTHING AT all!  We are gathering enough information to try to stay on treatment..(I have come so far...!)  

Does anyone know information about people staying at SVR (zero) when having to come off tx sooner.

Monday I have an appointment with a Neuro Opthamalogist to get the facts on my eye.. spots or not...

Pray for me please.. I am so in between a rock and a hard spot.. Quit treatment ...Go blind...Quit treatment... Go blind..

Thanks.

SoFla

[nurse12hr]

I have to ask, b/c yesterday I saw an article on counterfeit prescription drugs that was chilling, to say the least.

Where do you get your drug?  Turns out some drug wholesalers are substituting and diluting prescription drugs (pills and injectables) in order to increase their own profits.  Very expensive drugs are often the target of this scam.  

The article showed two vials of brand name medication--they looked virtually identical, only one was real and the other a counterfeit obtained from a major drug wholesaler.  

If you are having a sudden reaction to a drug that you have been on without incident before, I would save the unused vials or bottles, and ask your pharmacist how to go about having them tested, or try and contact the FDA for the same info.  It is worth a try in any case.  There is very little regulation or detection of drug counterfeiting in this country.  Since many of us get our drugs through wholesalers, we are at their mercy to be honest and reputable.  

Just my 2 cents.

[simpleman]

I'm at 42 weeks. My wife called doc 2 days ago because I argue and fight with everyone. He said last few weeks very important and to try to stay on full dose if at all possible. He had me quit Zoloft and start Zyprexia. Don't jepordize your sight be try to contine if you can. I really trust my doc. He told me he likes to be very aggresive (aggressive) with therapy but not at the risk of ruining your health. I like his approach. He also said he could guarantee 100% success by simply killing the patient the Hep c would be gone, but that wouldn't be an acceptable form of treatment. He seems to be able to put things in a way easy for me to understand and I really appreciate that. Hope you have a doc you have confidence in too. Good luck.

[oldhippiechick67]

I dont remember who it was the other day that claimed they had the same problem with the hole in the vision and the nausea, I cant find that post (drat).  But Pjxak had to stop tx for some reason at week 26 out of 48 and she was SVR but I cant remember how many weeks off tx she said she was.  I surely dont know whether or not you should cont. tx, but if your doc says stop, ya better stop.  Did the vision "hole" go away?  I hope so, hope you are feeling better now.   40 weeks is a good long while, get a SVR test in a week or month, whatever the doc suggests.  Maybe you will be SVR and wont ever have to take the nasty meds again.  Best of luck to you!  OHC

[ner]

Hi, SoFla. I have the same eye problem. It's a difficult choice to make between losing your vision and killing HCV. I went on treatment last year with Peg-intron. Went partially blind at about 11 weeks. Saw two Neuro Opthamalogists and both said the same thing... stop treatment or go blind. I had already cleared the virus, but it came back within one week of stopping tx. 10 weeks  ago I started Pegasys, hoping that it would not bother my eyes. It did. It went after my good eye. Had to stop treatment, again. I am out of options because I am not willing to go blind. I have Cirrhosis as a result of HCV, and hopefully I can continue to "compensate" for a long time.   So, although it's a personal decision, think about what  you give up with losing your eye sight...  driving, seeing your family, fundamental day-to-day things. I guess less than one percent of the people on tx get optic neuritis, but it's very bad, because unlike "cotton wool spots," optic nerve damage is permanent. If you want to ask me more questions, I am in Orlando. Post a respose or post your email and I will get in touch with you. NER

[giddyup]

I have sympathy for your situation. One of things I considered before starting tx was the te posibility of vision damage. People would say "arent you going to start tx" or "you're going to do the treatment right" and I would be thinking "Look this tx thing can be a crisis by itself". I hope You get good medical care.I have to say if it were up to me unless a doctor convinced me otherwise that I would stop the current form of tx if you feel its affecting your vision.Best wishes and prayers

[mrbill]

i have an eye problem as well and hope its not leading to what you are discussing. i have noticed last month when on tx, my eyes were extremely sensitive to certain lights such as the computer. i couldnt go on for 2 weeks. i stopped tx, for other reasons and will have shot 3 tommorow, wich would have been shot 6. i only stopped for 2 weeks in between. currently it aint as bad, but my doctor scheduled me an eye exam. hope you all can get around this somehow and beat this darn thing.
GODBLESS

[Galen]

One of the more unusual side effects of interferon can be retinal hemorraging.  For that reason, it is reccommended that everyone get an eye exam prior to starting tx and report any changes to your doc immediately

Mrbill, I think the symptoms you are having have more to do with the muscle aches we get (your eyes are moved with them) and the light sensitivity most of us get.  You may notice that you are more sensitive to sunlight on your skin, too

[SoFla]

Hi Everyone,

We went to the Neuro Opthamologist and $600 later... The dr.. gave her a clean bill of health, optic nerve is great, retina is great...... said she can continute treatment that the "holes" were probably a product of the dry heaving nausau she was experiencing.

Funny how quick this dr was to pull her off tx... without anyregard to how hard she worked to get to 40 weeks.

At any rate...

We are soooooooooooo thrilled to be finishing this last leg of tx...

Thanks to all of  you for your blessings and information

We couldn't do it without list like this one.. and our list...

Love Anita and Davis
Moderators...

http://groups.yahoo.com/group/HepatitisCLEARINGAndClear

[oldhippiechick67]

Glad to hear the eyeballs checked out great!  And OK to continue tx, thats fantastic.  Good News!  OHC