Jim / Everybody
I called the Dr. this morning and set an appt for tomorrow afternoon to discuss why I am going off Ribs. I asked them to fax over a copy of my blood tests so that I can find some answers.
My Hemoglobin is 10.9 L
My Red Blood Count was 3.42 L
My White Blood Count 1.4 L
My Hematocrit is 32.2 L
My RDW is 15.9 H
My Platelet Count is 25 L
My Absolute Neutrophils 0.7 L
My Absolute Lymphocytes is 0.7 L
My Absolute Monocytes is 0.1 L
There are other numbers but I don't know that they mean anything.
This also says that The Hepatitis C Viral-RNA on Real Time PCR is Pending as well as the qualitative TMA is Pending. All of the above values are Highlighted in Bold on the work up except the two Real time PCR because they are pending. My Hepatitis C Antibody is also highlighted in bold nd it indicates Positive.
I do not know what these numbers mean, but they are taking me off Ribivarin immediatly and reducing my peg inferon injections effective immediatly. I am concerned about that. What does the Ribavarin do in conjunction with the shots. I will be asking him about Procrit and or Neupogen tomorrow.
Thanks for all your help everyone. Easywriter
I do not know what my baseline Hemoglobin was before treatment. My Viral Load was 519,000 so I understand that is very low. I am considered a Geno Type 1A and I just finished shot no 12 of a 48 week program. I am also a type 2 Diabetic that I started on pills in June 2005. Hep C treaatment started ist week of Aug 2005
did you also get a copy of your biopsy report?
I am glad you are starting your very own medical chart, excellent step.
the hgb is low, you are anemic, but stopping the riba altogether is an extreme measure most drs would not follow. You might need to start looking for a new dr. I and some others here had to do just that during tx. I was given Procrit at 10.2 and reduced to 800mg from 1000. They were not even going to give me Procrit until I asked. Your dr is not approaching this correctly, it seems. Start printing studies to present your case to him.
this site is an excellent resource. Print the articles on managing anemia while on hcv tx. and start looking in the yellow pages for new hepatologists, just in case.
Yes your baseline number would be important. I don't see why they are pulling you off tx like that - my hgb dropped from 14+ to 9 in ten days and they didn't make me stop, they gave me the epogen and then upped it to 80,000 a week when it wasn't really working.
But I am still on the peg and the 1,000 Riba every day!
They are probably reducing your peg because of low platelets. Different doctors handle this different ways. Not sure about the riba -- depending on how you're feeling (and as Sunspot suggests, your pre-tx hemoglobin) you may or may not need Procrit now, but it seems you should be able to remain on your current level of riba either with or without it. Other numbers look OK.
Also, they're doing a TMA in addition to a rea-time PCR. Perhaps it's a Heptimax. The PCR portion should be ready any day. The TMA takes about a week longer. But if the PCR portion is under the limit (with Heptimax that's <50 IU/ml) odds are you are non-detectible.
As I mentioned in an earlier post, have a good sit-down with your current doctor but at the same time start researching other doctors for a second opinion. As much as we all have opinions here, these are very powerful drugs and you have to be following the medical advice and under the supervision of one doctor or another who has your complete medical history at hand.
Your hemoglobin doesn't seem alarmingly low to me. Most of the information I've seen and heard puts <10 as the time to start procrit or epogen but, as was pointed out, your baseline hmg is a factor because if you've had a sudden and significant drop that could for concern. Still I agree that supplementation with procrit is vastly preferable to a decrease in ribavirin and especially so with type 1s. Your platelet count is low and that may be the reason for the decrease in interferon. Some doctors will discontinue interferon with a platelet count like yours. I got to 25,000 and was allowed to continue with the same dose but I don't think my case is typical - generally interferon is decreased or stopped with that low a platelet count. Also your white blood cell count looks low but I don't know your lab values - some labs are different. Good luck. Mike
I can't speak to all the other concerns your doctor might have, but regarding "treatment not working" based solely on a detectible TMA at week 12, not sure I agree. Most people/doctors are happy with a two-log drop at week 12. You could very well have that drop even though your TMA is detectible. Your quantitative PCR will supply you with a number to compare. When things get complicated, a second medical opinion always makes sense.
Best of luck, Easy; this is anything but easy. That sounds familiar - did someone already say it?
"Treatment can be continued when there is a 2-log drop in HCV RNA level or when HCV RNA is undetectable at week 12. If HCV RNA is detectable at week 24 with a sensitive assay, again treatment should be stopped because the likelihood of achieving a sustained virologic response is virtually nil."
From <a href="http://www.hivandhepatitis.com/hep_c/hepc_test.html">hivandhepatitis.com</a>.
So, I guess you're looking for a number between about 1 and 5,190. Let's all hope for that drop!
I got back toay from an appt with my Dr and the prognosis is not very good. He is indicating that he wanted me off the rib and to lower the dose of peg because of my levels of hemoglobin and red blood count and white blood count as well as low platelets, and because he doesn't think the treatment is working ad those levels are too low. He said that the treatment is not working because (just today) he recieved a partial test from my blood work on 10/31. Under the qualitative TMA it is indicating "DETECTED" The results for the real time PCR are still pending. But because of this he is saying that treatment is not working for me and he is uncomfortable to continue treatment with the Ribavarin because it is affecting so many other things. He is allowing me to continue to take the shots for a few more weeks to see how the blood levels go, but he thinks it is futile. If after 12 weeks that you don't see a huge decrease in the viral load, it is just not going to work for me. He wants me to reduce my peg from 150 at 5.0 to 80 at 2.5. But I can wait until I get the Real Time PCR back before switching and if the PCR isn't significantly lower and he doesn't believe it will be, then he wants to remove me from treatment all together.
I am a little disappointed.... no I am a lot disappointed. I was one third of the way through and now he says it's not going to work. I think he made that decision to early because he just got the TMA test today 11/04/05 and he removed me from the Ribavarin on Wed 11/2/05 and we still don't know what the viral load is.
I asked about procrit as well as neupgen and he said it really doesnt make sense to try any of those things if the treatment is not going to be effective. I don't know what to do. Someone asked earlier what my pretreatment Hemoglobin was and it was 17.5H and now it is 10.9 so I don't think that is a danerous level. Anyway does anybody have any suggestions?
Anxiously awaiting a reply.
2 log drop or not, the numbers from the pcr results themselves should be the determining factor. I was told therapy continues till week 24, and by then if still detectable, tx stops.
Search out a second opinion, as there have been MANY members here that did not obtain the 2 log drop at week 12, and STILL obtained SVR with extended treatment. By that I mean extending from the standard protocol of 48 weeks, to per say 72.
As long as the PCR reveals a drop, you ARE responding, and I would demand the doc administer preventitive medications to stay on full dose meds. Alot of unexperienced Dr's are afraid of lawsuits, and are not familiar with "aggresive" treatment. Procrit has been described by many here as their "hero".. Nuepogen bumps WBC, and wil get you back in the game, but unfortunately there are no meds for platelets. But as MikeS stated above, he continued full dose with levels comparable to yours.
Search out a second opinion, as by dropping meds to half, the Dr is following the HALT C protocol of maintance therapy. One of my docs wanted me to follow that protocol, and do 6 months to a year of half dose peg such as Rev did. But Dr Schiff advised me against it. That is LAST resort.
Wait for your PCR, and do some research in the meantime. Print up some articles about SLOW responders, and the significance of "extended" treatment.
Best of luck to you man!
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