adverse reaction to pegintron/ribavirin treatment

[madigram]

My husband was diagnosed with Hepatitis C genotype 1a.  He was prescribed a treatment of ribavirin and pegintron.  He was not monitored until the fourth week when he had spontaneous bleeding in his eyes and as a result has permanent eye damage.  After reading about the medications on line it appears that he should have been monitored during the 1st week, 2nd and 4th weeks.  Is this not the normal procedure for this type of treatment?  If he had been monitored there would not have been the permanment damage to his vision.  When he called the prescribing doctor the day he experienced bleeding in his eyes, the doctor  told my husband that it could not be the medication and that he should see an eye doctor.  The next morning he saw an opthalmologist who referred him the same day to a retina specialist who had to inject his eyes with a drug to stop the spontaneous bleeding and to prevent further damage.  That is when we found out his platelet levels were at 4000.  Normal platelet levels are 150,000 to 400,000.  My husband was in and out of the hospital for 3-4 weeks as his platelet levels and blood levels were affected and totally out of wack.  Several months later his platelets are still at a low level (92,000) but not dangerously low.  As a result of the low platelet levels my husband has had a bone marrow biopsy and we are waiting to hear the results.  Since there was no complete blood count done before the treatment and the last cbc was done in 05 we don't know why his platelet levels are low.  Could the pegintron/ribavirin treatment have caused damage to the bone marrow production?  This is a living nightmare.  I hope by writing this I will help other unsuspecting victims of this medical nightmare and the doctor/hospital bills but mostly permanent damage to their eye sight.  I would like answers to my questions as the doctors seem reluctant to tell us.    

[portann]

Coming back to what you said about 'no complete blood count done before treatment, the last cbc done in 05',  have you double checked with the doctor? Perhaps he didn't communicate clearly. It makes me gasp to think of your husband starting tx without a CBC.

I've been able to rationalize my overworked doctor's decision to not do the baseline viral load or a quantitative test at four weeks because he's the only specialist in town and his policy is ruthless, due to a caseload of five thousand. If I don't clear by 12 weeks, he drops me, plain and simple, no what ifs or buts, so I understand how he'd conclude that he doesn't need extra paperwork to influence his decision.   It was a no-brainer for him, though, that he monitor my blood counts weekly.

What a shocking nightmare. I would confirm that your husband absolutely had no initial bloodwork before tx.

[nygirl7]

The Pegintron booklet recommends seeing an opthamologist to monitor your vision during treatment, although when I saw one, he'd never heard about this and was very indifferent to the possibilityof complications.

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EVERYONE should have a baseline test run by their opthamologist prior to treatment in fact my doc held up my shots for two weeks until I got mine.  Just for the exact reason in this thread.  Also some people have gotten cotten wool spots and other vision problems.

your doc sees a zillion patients however he should know this simple piece of information!

[HCA]

Retinopathy among patients recieving interferon is far from unknown as your doctor should have realised.
The key number is his platelets prior to treatment.
If they were dangerously low you may have a case against your doctor.
Get copies of all his bloodwork.
Google thrombocytopenia and retinopathy  and interferon retinopathy.
The key number is his platelet count prior to treatment.

[orleans]

Hmmmm, My eyes have been a little sore since starting treatment. Almosted posted about it but it's not very bad. My Hep Dr. said nothing about my eyes either. Thanks to this forum, (once again) I knew that a pre-tx eye examine was prudent. I made an appointment. The eye Dr. as well as his staff were aware of this precaution. After the examine,(went swimmingly) he gave me a small chart of sorts, about 5"x5", a grid with a dot at the center. Every couple of days I am supposed to veiw it, one eye covered and to report immediately if the grids become distorted in some way, a sign of degeneration. sorry for your trouble, keep us posted, jerry

[portann]

you could also post this to Dr. D on the HCV expert forum, which sadly hasn't accepted questions for two days, due to being full. What a nightmare. I am so sorry.

i know you'd probably not want to disclose this but i sure am curious as to where this took place. Even though my doctor is a minimalist compared to most others when it comes to testing (he didn't do a baseline viral load test), he orders weekly CBC's for the first 12 weeks of tx.

The Pegintron booklet recommends seeing an opthamologist to monitor your vision during treatment, although when I saw one, he'd never heard about this and was very indifferent to the possibilityof complications.