Because of the various things going on with my CBC's and my hyperthyroid situation, etc. the doctor ran a CD4 test this week and it came back with a CD4 count of 200 which is pretty low from what I understand. Low enough that if I had been 199, they would have pulled my interferon injection today totally. I did a quick search at work this afternoon after I got my results and I haven't had ALOT of time to look into this. It's got me just a wee bit offside but not too much just yet. I go for another CD4 this Wednesday and now it's week to week on this test with weekly verdicts on this one also. Here's info I pulled on the CD4 test:
I don't have HIV, incidentally. But that's where this testing seems to come up the most when I'm searching on it. I just recognize that my counts are low but maybe that's normal for an HCV person on treatment?
They apparently sent me for a CD4 test because of the enzymes increasing, the thyroid issues and the blood counts going back down and they're keeping an eye on things.
I'm still on INF reduction this week and now it's a hair away from pulling the INF totally only this time it's not a trial thing, it's the CD4 results. I asked the doc to start the paperwork for neupogen but he won't. He doesn't want me on neupogen and he feels that my INF reduction of 25% at Week 30 (just got off of 4 weeks of INF reduction Week 25 - 28) is not a risk to me. Of course...any reduction is a concern to me which I'm sure many will understand.
Energy wise, I'm okay. Some fatigue but I'm back to the usual management techniques and the usual routine. All in all, I"m holding up well physically.
I've never seen much about CD4 testing on here. Has anyone else had these tests included as part of their treatment management ? Any experiences with this ? I'd be most grateful for any input. Thank you.
btw..Week 31 today, hgb is 10.8, bit of an increase from 10.4, lymphocytes are a wee bit increased from 2.7to 3.0 and bit of a jump in the ANC from 9.* to 1.0. I know that's not a bad ANC if not on the trial.
I also started a mushroom compound this week called Immune Renew. All natural, all mushrooms and contains astragalus root extract that's supposed to make it more effective. I did research on that and it seems to check out okay and got an endorsement on it from a member here too who I trust on these things.
Just trying to do what I can particularly since I don't see me getting the neupogen. I'm back on the eprex as of this week and the doctor wants me doing injections every other week but based on my CBC's each week. I'm thinking the eprex/procrit will help with my whites, they did before, it just took awhile and this time I'm thinking we'll be on maintenance with eprex/procrit til I'm done treatment or nearly done, at a point where it won't matter anymore.
Sorry for the drawn out explanation. Just figure the bigger the picture, the better the responses I'll get from those that have been down similar roads or know a thing or two about these things.
"...Although interferon can cause a temporary drop in your CD4 count, (but not your CD4 percentage), the three major HCV treatment trials for coinfected people did not find more opportunistic infections (OIs) in people with low (under 200/mm3) CD4 cell counts..."
I'll start by saying I don't know much about CD4 counts nor do I remember my doc ordering one even though my ANC was close to 300 at one point.
That said, the above article seems to suggest that what holds for low ANC during treatment also holds for low CD4 counts. And that is that lower counts precipitated by SOC are not associated with more infections as they might be for others.
It shoud not surprise you from prior posts that I still question what appears to be at best an overly conservative approach to treatment and med reduction -- and at worst, a an older or misinformed way of analyzing things. Dr. Dieterich appears to have backed up this position at least with your prior ANC issues.
If it were me, I'd get an outside consult, figure out what you actually believe needs to be done -- or not done -- and then either persuade your medical team to go with the plan or perhaps opt for a new team. I don't know anything about the mushrooms but am skeptical about the benefits of adding unproven elements to treatment when an unknown downside can exist. Not directly related, but something I saw today and posted about: http://www.medhelp.org/posts/show/645674
Interferon is the key ingredient in current HCV and IMO should only be reduced when you truly believe it's necessary. I'm not sold on this in your case and I don't believe you are either, but maybe I'm wrong on that.
Thank you for your very thoughtful and comprehensive response. No, it does not surprise me to read your answer. I'm just grateful to have your response. I agree that the ANC level does not require an interferon reduction. Where you and I always "wrestle" on this one is that I want you to understand that not even my doctors have a choice on this one as it's the trial requirements. So therefore, my choice is to submit to the trial requirement or to get off the trial. I'll come back to that.
As for the neupogen. That is something my doctors DO have a choice over. I fought for eprex/procrit and won when my hgb levels got to dosage reduction territory and now that is an established component of my treatment response. Now I'm fighting for neupogen and I'm not winning that fight. NONE of my doctors want to use neupogen. They give the following reasons: risk to me in adding yet another drug with even more side effects to the mix when they feel I already have enough going on, distance away from them travel wise for them to monitor me, the low risk of reducing my interferon at this point in my treatment. I disagree with them on the level of risk on all three. However, they are looking at it from the angle of how much they feel comfortable with introducing neupogen and I know none of them do from various angles and one of them, I personally feel, is not only their professional opinion that it will not help..but their inexperience, for some of them, in using neupogen. If you recall, I was astounded to learn that the one doc in particular has never treated anyone with both eprex/procrit and neupogen. It will take some convincing and I'm working on it. While I agree with you that I don't need it under normal circumstances, I also didn't need the procrit under normal circumstances. I need the neupogen for the same reason I fought for the procrit. To keep me out of dosage reduction territory, Jim. I think the neupogen would act faster than the procrit and I wouldn't be doing this weekly dance if I had neupogen. I am interested in yours and any opinions on that.
You are right, Jim. I don't agree with them on the low risk of reducing my interferon. I agree the risk is lower than if it was earlier in my treatment but the risk is not zero and the longer they reduce, the greater the risk to me. I would feel worse if they reduced my ribavirin however my interferon continuing at extended reduction is increasingly worrisome. I insisted on a Section 8 being started for the neupogen and the doctor, my aggressive favourite doctor, said no.
The CD4 ... I believe they brought that in because they are seeing my liver enzymes go up above baseline levels and my thyroid going out of whack, both that are indicative of immune issues, so they're watching my CD4 levels now too and while CD4 levels also can go up and down, mine are right on the very border so it puts me in the position of having yet one more thing monitored that can impact how much interferon they will want me to take. THIS part is not a trial requirement. I agree that the CD4 is similar in nature to the ANC .. however I'm at that border right now at 200 and I'm one digit away from an interferon removal completely and weekly testing on that too. THIS part is not a trial requirement. You mention the .300 ANC level, from what I understand from what I've read, 200 for a CD4 is the bottom limit and I'm there. This one...I don't know how to fight it. I can ask again for the neupogen but the doctor will say no. I need to bring up my white counts, I believe, to bring up my CD4 counts, but I need to read more about that. To bring up my white counts, I feel I need the neupogen. There is no other way.
The mushrooms....they may bring up my white counts but it's really a cr@pshoot at the moment and really it's one of those can't hurt, hope it helps things when my options are limited..for NOW. I understand your caution on this and felt it myself, I took steps to research it, asked questions from people who thankfully answered and then some (you know who you are, both of you and thank you) and I got them approved by my trial nurse - she checked the list for contraindications, they were not on them and gave me a green light. So .. I did feel the caution myself and felt it warranted proceeding and I'll watch how things go.
As for a second opinion, I'm going to start asking around for people who have been treated by docs who use both neupogen and eprex/procrit. My team is supposed to be among the most experienced in this country however there are pockets of docs doing things all over the place and I'm going to put in some time and see what I come up with and I'm going to keep fighting on this one, Jim. I'm not done yet and I'm not sitting back. If I have to fight my whole way through treatment to the end, then I'll do that instead of wondering if I could have done more. Canada does seem to take a conservative approach to Hep C treatment, in my personal opinion and experience, because we are behind due to regulations that govern everything which means it takes longer to change the regulations. Your doctors in the U.S. are not bound by such things.
Thanks for your opinion and your viewpoint, Jim. It has helped. Just please understand it is not so easy in this country to pull off certain things. I'm doing what I can.
Several different but related issues that you articulated very well.
First, the issue of whether you even need Neupogen or have a choice per trial requirements. Then the issue if they will give you Neupogen. And then the Procrit and Neupogen being given at the same time.
Starting last, Procrit and Neupogen are routinely given together. I won't even venture why this isn't familiar territory with your team other than to say that ... well, nevermind -- I'll just say for a fact that I know Procrit and Neupogen are often administered at the same time by leading Hepatologists in the United States.
First point -- again, I don't think you need Neupogen yet and I don't think Dr. D. would think so either, but of course ask him when you are able to get through on the Expert Forum. That said, it may be a mute point if you continue in the trial if the requirements are in stone.
Second point -- since they are allowed to give you Neupogen -- all the papers I've read suggest adding Neupogen over dose reduction. You do not want to reduce the Peg unless medically necessary and I'm not convinced it is, especially given your medical team's questionable take on other issues. Another Dr. D. question -- but I think you have to go beyond this and figure out what your strategy will be if (and my hunch you will) you get an expert consensus that you should remain on full-dose Peg.
Me, personally, I'd do a full-court press on my team with studies and perhaps even Dr. D's post. And I would go right to the top, not just to my NP. Meanwhile I'd be looking for an alternative team to work with should they insist on the Peg reduction.
As I see it, you have more than met your trial requirements and now it's time for the trial to meet your requirements which appear to be reasonable and to enable you the very best chance of SVR.
Mushrooms, OK, I guess, but not instead of any of the above.
It shoud not surprise you from prior posts that I still question what appears to be at best an overly conservative approach to treatment and med reduction -- and at worst, a an older or misinformed way of analyzing things.
Here is some info on people with HIV/HCV coinfection that states basically that even in those with HIV, lower cd4 counts during hep c treatment do not cause significantly more infections. So for those of us without HIV, I would imagine it would be even less likely that low Cd4 would be terribly problematic.
"Hepatitis C treatment and CD4 cell count
Even if you are on HIV treatment, interferon can cause your CD4 count to drop. However, your CD4 'percentage' usually remains the same, or may even increase. This shows that the drop in the count is unlikely to reflect a real change in your immune system.
To support this, the three major HCV treatment trials in HIIV-positive people did not find more opportunistic infections among people with low CD4 counts (under 200 cells/mm3)."
Perhaps you could print out some studies on this, like the one above, to take to your physician. I always found that if I could back something with a study I got my way more easily with my docs.
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