I am confused!!

Hi everyone.  Well, I am well into 30 days of daily infergen and riba.  Finally, the sides have tapered off enough to where I can at least function on a daily basis.  Don't get me wrong, I am no where near 100% feeling good.  No where near it as a matter of fact.  As most of you know, the docs watch the blood work closely and monitor the whites, reds, and neutrophils.  Well, I had an appointment with my doc last week and they were low, but he wanted to watch them for another week and then consider reducing the dosage of the riba.  He told me the riba was the culprit for the drop in the counts.  Well, now I get a call from the nurse and she tells me that the counts are dangerously low and he wants me to only do 1/2 of the daily infergen.  Now, last week, he told me he would reduce the riba, not the shot.  I have a call into the office.  Does anyone know anything about this?  Also, what happens when the counts are low like this.

Thanks,

Linda

[Southernboy]

Hi Linda,

Interferon is a bone marrow suppressant and this is where the red and white blood cells, as well as the platelets are formed.  The riba causes destruction of existing red blood cells.  This is called hemolytic anemia.  It is the combination of the two that cause the anemia that all of us experience on tx.

Usually, interferon is reduced to help in the production of platelets and white blood cells and thus increase their counts.  Riba is reduced to minimize hemolytic anemia and increase the red cell count and thus hemoglobin.

Low platelets cause blood clotting problems.  There is a drug called Neumega (IL11) that can help with this problem.  Low red cell counts cause anemia and lead to fatigue.  A drug called Procrit can help with this problem.  Low white cell counts leave us open to infection.  A drug called Neupogen can help here.

Please talk to your doc about these alternatives before allowing dose reductions, and if they are done, make sure they are for the correct reasons.

Best,
Steve

[whoaisme]

Hi, I wish I could be more helpful but I will tell you that Giddy who is now in week 37 of daily infergen/riba (on the Intermune study) has had a reduction in riba from 1200 to 600 back up to 1000  now- due to a drop in his hemoglobin (hgb) and a dose reduction of the infergen from 15mc to 9 for a week or two because of the drop in his neutrophil count. The study he is on does not allow for "blood growth products" like procrit, which he needed on Peg/riba. He had an off study vl test done -- but we haven't heard anything yet, its almost two weeks....he had a two log drop at week 24? but hasn't cleared yet. He didn't get the 2 log drop on the peg combo, so we are a little more optomistic. We'll see...good luck to you, Su

[ificu1st]

Hi there, I am glad to see you have posted.  I have been curious about how you are doing.  It is normal for our blood counts to drop as the others have said.  Ask for the procrit.  Last time I went through treatment I went on it and they didn't have to reduce the dose of the peg/riba.  I am on week 8 of the daily infergen and my levels are dropping also but I am hanging in there.  My side effects are also becoming manageable.  The last thing I want to do is cut the doses of the infergen or the riba.  I don't want to go through this again a third time.  I am glad my doctors agree.  Cuttting the doses is really a last resort.  Make sure your docs and nurses are up to speed on this protocol.  Hang in there.  I am still with ya.  
Hi to everyone else out there. I have been silently watching the posts.  It really helps to get through this.

[honey1616]

Linda,,,,Need the figures if you have them.  I always would ask the nurse whenever she received my latest bloodwork to fax to me or if you don't have fax,,,run over and get them or even mail so you have those hot numbers in your hand.  There is so many here with lots of experience and you can then give the latest labs for great advice.  I was once also told to cut back by my dr and would have if not for others here telling me not to.  Found a new dr and he was sooooo glad that I listened to medhelp and not the other LOL   And told me in his experience of treating thousands of people on tx,,,,the ones that relapse alot are ones that skip meds or stop for a few days or reduce.  I know there is some circumstances some have to do this but if your numbers aren't that bad,,,,I wouldn't!