Retinal Hemorrhaging on Interferon

[ChrisDDD]

I've searched this board and have yet to find anyone who was taken off treatment, whether Peg and Riba or Infergen and Riba, due to retinal hemorrhaging and cotton wool spots.  I was taken off Infergen and Riba at week 9 last year for this reason.  My eyes healed completely once I was off of Infergen.  I have read many postings of people who had eye problems and were allowed to continue to treat.  At completion of tx, eye problems resolved.  My local doc is reluctant to even put me on maintenance IFN due to the eye problem, and the Prove 3 trial could refuse to accept me as a candidate because of this as well.  It's very frustrating!

Secondly, does anyone KNOW whether it's Vertex that will select candidates for PROVE 3 or the doctors at the clinical trial site?  If it's Vertex who decides, I may be out.  If it's my doctor, I think I'll be in.

Any input would be great appreciated.  Thanks.

[Kalio1]

Glad to hear you aren't pregnant!

That cracked me up, thanks, I needed a laugh.

[mikesimon]

I don't know your friend or the hospital but I have seen wrong medicine practiced at prestigious medical institutions before so I am not willing to rely on an anecdotal example as necessarily the preferred or the up to the date approach. I don't dismiss it out of hand either - I weigh it along with the research studies that I can find and then make my own decision. But, I am not pregnant so it's mainly academic to me. The research studies I have been able to locate seem to run against the practice at the hospital you site but hey, they could both end up being wrong - well, that would be hard since we'd have to figure out a new method of birthing. I posted this above too.
See:http://www.hcvadvocate.org/hcsp/articles/Mother_child_2006.html
Mother-to-Child Transmission of HCV: Update 2006

"Based upon these and other studies, the following guidelines and recommendations can be made:

[Myown]

how about when her neighbor jumped in a thread of mine just to tell me i didn't read something correctly and then said maybe i was having vision problems from the treatment, which i just started. nice huh? then the one you are looking to defend jumped in with a snide remark also. where were you then? where was anybody? nobody seems to see that. don't take me wrong, i am not mad at you or anything, but i am just wondering why do people see just what they want to see. if people are going to police things, then let it be a full time job, not part time, here and there.

rev saw something before most of us saw. some have yet to notice, but give it time. its so obvious to me at this point.

[Myown]

yeah, but ya know what?. try not to curse because you will loose, even though you are right. if anybody looks back at things, she distanced herself from me for no reason other than not liking what i stand for, religious right as she would say. thats no reason. I like you, you're liberal, you like me, I'm conservative ,,yeah okay we're twins, but even in families people fight, we rise above our differences. don't let her get to you. see here's the thing.. I may be wrong in even going back at her for her snide remarks to me, if I am supposed to be 'the Christian,' but I never said God has perfected me,,,,,no way far from it,,,,soooooooo far from it. I don't like when people, whom I did nothing to, (but shown kindness,) not like me for who I am,where's the diversity the left pushes then?

You were right, but unfortunately because of loosing your temper (and believe me I have a had a bad temper, still not great,but  improving)you appeared to be wrong because people don't know.

Know what got to me one time, which really disturbed me. Remember that guy SlowSouthern that would always come on and tell her how much he cares for her or something like that. The guy gave me the creeps. Its like you could feel when he came on. Scary. She was having a debate lets say with a member and slow came on and insulted the person (who was probably off the puter at that point) and slow said, what is he doing here, he probably doesn't have a job, he should find something to do and nobody can say anything to my miss K_____ and get away with it.

Any decent person would have said,,,'hey slowS, wait a minute, don't you insult so and so.....NO she didn't do that, Why? because the discussion/debate they were having bothered her I guess that much that she was happy the Slow insulted the person. That is the day that I said to myself.'MY,my' and my eyes started to open.

Next you and K______ started going at it and guess what??? The guy disappeared off the planet. He didn't want to tell you to cool it,,what happened to the 'nobody talks to my miss K_____and gets away with it? I haven't seen that guy around. It wouldn't surprise me if he is making the hand dug dungeon under his house where he holds women captive a little larger. Scary.

but that's it. let it go, (like me lol) and forget it. Not worth it. do lunch tommorrow at tavern on the green. see ya at 1 pm sharp.  

[Myown]

It's not worth getting kicked off of site because of this. You proved your point. The nurse just proved your point.  Here's the whole thing in a nutshell.

You believe 1% is very high risk for your CHILD to be exposed to. I believe 1% is very high for my child(o children in reality) OR DOG!! for that matter because I love my dog too. WHO IN THEIR RIGHT MIND WOULD RISK THEIR CHILDS HEALTH OR LIFE EVEN FOR A .00000001 PERCENT CHANCE? NOT YOU, NOT ME. But there's the difference in people and this is an example of differences.

I am glad to hear the nurse say that people choose the c section. Gives me back my faith that not all people are nuts and take chances with their childs life.

[beamishboy]

why must you always resort to name calling and question the mental stability of any & all who disagree with you?...if you do indeed believe that kalio is experiencing 'mental difficulties from trx meds-wouldn't the honorable&compassionate path be silence or sympathy? Rev this is a SUPPORT forum for PATIENTS...think about,please???

[mikesimon]

No offense meant - I just want to try and communicate accurate information. I'm no expert on this topic but I did look at it and  what I gathered is: HCV/HIV c-section appears a better choice - HCV alone - no significant advantage to c-section. Mike

[Kalio1]

You are wrong about women who are HCV positive needing a c section also. You cite info that was for Co infected women, not women who do NOT have HIV and HCV. Avid posted the pertinent info. for the study in FL. which apparently you ignored.
The reason you posted co infected info. is there is no information backing up your inflammatory and false claim that women who are HCV positive and pregnant have to have c sections, it simply isn't true. The study in FL shows even the normally quoted "5%" risk is overstated, the risk is really about 1%.
To make these inflammatory statements does nothing but scare people new to Hep C, and cause them to worry about things they don't need to. They have enough to worry about having HCV, to add to that by creating fear of blindness or pregnancy complications is not helpful.

[njrsl]

wsih we had printer so i can give this to my woman wen she gts back to read an tell me what its say.i dont want toshow her this plce she getspisse when i talk to the women here. hahahahahahahah!!!!!!! i just hate to read that stuff up there cause with all the xtra wrds it dont make sense, right now with all this shits on my mind,ns

[Kalio1]

If a person has diabetes, retinopathy is a symptom of diabetes so you'd have to have a lot more info about the person who was treating and going blind before you could attribute blindness to the treatment, there could be other extenuating health factors that would have to be factored into the equation epecially since so many people with HCV also have diabetes.

[mikesimon]

See:http://www.hcvadvocate.org/news/newsRev/2006/HJR-3.4.html

"As reported in the January 2006 Journal of Hepatology, Louis D

[mikesimon]

I think Kalio's right on this one. I recall looking at this subject a few weeks ago for some reason and my recollection is that with HIV/HCV a c-section is a safer alternative but with only HCV the jury was still out. But, I don't think this subject has been adequately studied to say one way or the other. Mike

[ChrisDDD]

Thanks to everyone for all their input.  I examined my old records from Peg/Riba and noted that there was a comment on each exam report about my eyes, and my eyes were always normal.  I'm hoping this will bode well for my getting into this trial.  I also remember never having had any visual symptoms on monotherapy nor Peg/Riba, where with the Infergen I did have visual symptoms.  Infergen is a very potent form of IFN, right?  I was on 15 mcg per day, 1000 mg Riba, 5'4" and 130 pounds.  I also developed high blood pressure, which is now under control with medication and my labs are coming back into normal ranges, except for LFTs, of course.

I couldn't find it in my records, but was telling my husband that I now remembered being so excited at having cleared at week 4 of monotherapy and the study nurse warning me not to get too excited.  She was right.  PCR VL came right back and I ended up being kicked from the trial as a non-responder.  I had always believed I'd never cleared.  The fact that I have once before is a good sign, right?

I'm a little down because I found out accidentally that the doc who was going to advocate for me getting into PROVE 3 wrote a letter to my SS attorney saying I will probably never clear this virus.  Well, THAT ruined my day!

Before concluding, I feel compelled to relay my experience in having been HCV-positive, unbeknownst to me, when I gave birth naturally, without C-section, to each of my three children.  When I learned of my diagnosis, I insisted that each of them be tested for HepC.  They all tested negative!  I was delighted.  Just my experience.

I read the thread included at someone's kind behest, and found it very helpful.  Thank you.  Just as a personal aside, I wish we could all get along and work together.  We're all in the same boat with this wretched disease, and the conflicts make me sad.  Of course, it's a free country, right?  I'm new to this board and don't know the history, but that's just my opinion.  Don't blast me, please!  I for one am fragile.  Don't know about everyone else.  Be well!

[njrsl]

whats exactly wool spots???!!!!  man! I had some prblems with my eye on TX. they gone now . thanks god!! hahahahhahaa

[mikesimon]

I had wool spots during TX and recall that, at the time, other people treating said they had wool spots too. Mine resolved after I stopped treatment. I was monitored during treatment by an ophthalmologist and he was said that he believed that they would resolve after I stopped TX and he was right about that. Mike

[AMAZED]

You are freakin' hysterical!!!!!  Almost had OJ coming out my nose from laughing this morning!!!  LOLOLOL

In Him,
Rick

[GoofyDad]

I had some eye porblems but it wasn't tx. Turns out my granny was right. After all those years, it was beginning to make me go blind. But that's another story....

Here's <a href="http://www.medhelp.org/forums/Hepatitis/messages/40278.html">a thread </a>from a delightful lady who used to post here. She stopped due to the wooley spots.

Good luck to you. BTW, you're not getting hairy palms by chance?

[prettydamscared]

I'm in the Prove 1 trial.  What i know about it is that vertex has very definite criteria that must be met, i.e. hemoglobin levels can't be too low, thyroid levels must be in range, most recent bx has to be within 2 yrs., fibrosis can't be beyond stage 3.  These are just a few examples...but having said that, as long as you meet their criteria, it does seem to be up to the trial doctor or in my case, the study nurse.  Imo, a lot of it has to do with being in the right place at the right time.  I made it extremely easy for my study nurse.  I had just had a bx in June of 06, had all my medical records and overnighted them to her, returned all calls, was very available, enthusiastic and appeared to be a willing and compliant participant.  I do think a lot of it is just luck but the above factors can't help but play a role.  Good luck.

[esleighton]

The Peg-Intron medication guide recommends a baseline retinal scan. My doc didn't initiate that, but the day before I started treatment I went to my optometrist and he charged me $39 for the digital image. I haven't personally heard of anyone before you of having this problem, and it is probably very uncommon. I have been very active in a couple forums for 6 months now.

Eric

[domusic]

I've heard about the retinopothy Sx with treatment as well as the disease itself. Don't know much about this side of it but my daughter who is type 1 diabetic has been dealing with Diabetic Retinopothy for some time. She has had many laser treatments to counter it and has had several hemorrhages. As long as she stays on top of the laser treatments she can manage to keep from going blind. Get a little blood inside your eye and it's hard to see. And it take months, sometimes years to clear. There is a procedure to replace the blood clouded fluid in the eye with clear fluid but it is a high risk procedure. Better to keep up the laser treatment.

Retinopothy during INT/Riba treatment is probably a rare side effect but a very real one. You might try googling "Diabetic Retinopothy" and "laser treatment", for it, to learn more about it. You might throw in the search word "Forum" also to see what others have to say about it. It might be worth mentioning to you Hep doctor to see if laser treatments would be any help to stay on top of any hemorrhage risks.

I hope the best for you and good luck,

DoMusic