I am a bit nervous about my platelet level and wonder how low they can safely go. I am in week 42 of tx and I am still on full dose pegintron (150 mcg per week) although my dose has been reduced a couple of times for short periods.
I started tx with platelets at 150,000 (no cirrhosis, stage 2-3) . At week 10 they went to 65,000. Currently they are 35,000 and have been between 35,000-45,000 for much of the past few months. I have had to take nuemega to be able to continue treatment in my trial and to keep my platelets from dropping even lower, that or reduce interferon which I didn't want to do. This is not commonly used for tx as it is highly toxic, nasty drug with potentially dangerous side effects.
I am a bit nervous because the 35,000 was from a cbc yesterday before I took my interferon for the week. perhaps at this point my interferon dose could be lower since I am also taking boceprevir and I have been und for 32 weeks.
I am getting the boceprevir and will till the end (6 more weeks). I have been anemic for most of the past 36 weeks. Even with 60,000 units of procrit per week my hgb remains mostly between 7.7-8.5 occasionally climbing to the 9's. Yesterday hgb was 8.1. I also take neupogen every week. All these "rescue" drugs although welcome have taken their toll.
If I didn't have the Neumega I would have stopped treatment a long time ago so or greatly reduced the interferon and possibly my chance of svr.
I am very thankful to my medical team for keeping me going and not stopping tx. I know how lucky I have been to be getting boceprevir.
Dave, All I know is at 20,000 there is a chance of a spontaneous bleed anywhere in the body, including the brain. I would hope that they are following you continuously with platelet counts very frequently.
Dave, When I started tx I was told they would let my platelets go as low as 24,000. Why precisely that number, I don't know. And they did say that I would be restricted as far as activities, no driving and such - I suppose for potential accidents/injuries.
I wasn't aware that Neumega helped with platelets, but hopefully it will keep them from getting any lower until EOT. Hats off to you with the low hgb. I ended the last few weeks in the low 8's and thought I was at death's door. I can't imagine it for 36 weeks. Hang in there and hope things ease up for you soon. Pam
I gues it's time to skate fast over thin ice, meaning go as far as you can before the docs call it a day. 32 weeks at undetected is a pretty good head start and any additional weeks at this point are a bonus. That's a lot of holes from a lot of shots
Thanks everyone for the info about the platelet levels. I am determined to make it to 48 weeks. Only 6 more weeks and I am too close to stop now. I just took the neumega which will hopefully boost my level a bit higher or not let it go lower. I would guess if the platelet level doesn't go up asap the interferon will be reduced so I can complete. That's better then stopping.
"That's a lot of holes from a lot of shots"
Haha, you're right! I guess this is nothing compared to taking insulin every day though!
Thanks for the encouragement. The platelet thing had me a little spooked when I got the results this morning. I know that 35,000 is okay but was concerned about another drop. As I searched the forum I see that others have had the levels in the twenties so I suppose I shouldn't stress.
I went down to below 20,000. No bleeding or unable to stop bleeding. I started at 80,000 platelets due to cirrhosis.
Each doctor is different about when they will stop treatment.
You should ASK so you know the limit and when they will stop.
There is no way to stop loss of platelets. The med which I can't remember from thombocytopenia is toxic to the liver. Maybe with a transfusion of platelets?
Sorry but I got to run. I can provide details if you need them.
Main pionts: 35,000 is plenty. Many cirrhotics only have 35,000 normally.
The question is what is their lower limit. See if you can find out.
The only content I can add is that mine got low but not that low. Just when I thought they were heading off the cliff, they'd turn around and head up for a couple weeks. Much more volatile than HGB or WBC. Good luck, Dave.
In an adult, a normal count is about 150,000 to 450,000 platelets per microliter of blood.
If platelet levels fall below 20,000 per microliter, spontaneous bleeding may occur and is considered a life-threatening risk.........."
"Hector may be referring to Promacta - eltrompobag"
Thanks FlGuy, I have read about the promacta and the liver toxicity,
The nuemega doesn't work as well to raise the platelet level as promacta but the liver toxicity does not seem to be an issue.
Neumega can cause edema, congestive heart failure and other issues but I am not taking it that often so it will probably be okay. I usually gain about 5-6 lbs in water within a day of taking the neumega but this resolves after about 3-4 days. My chest gets very tight and breathing is labored, It becomes difficult to stand or sit up for a couple of days after the injection. I am not complaining, just thought people that might consider using this drug should know my experience. Of course some people seem to have no bad effect from it and some have much more serious sides.
hector, Goofy- Thanks for sharing your experience with the low levels it makes me realize that I am fairly far from unsafe.
Hector- I am below the 40,000 acceptable level for the trial, but as long as it doesn't stay that low there is a bit of leeway. I realize that the trial guidelines are conservative but I've been lucky enough to keep skating by.
Susie-Thanks for the info about the low levels. It's amazing how low some of our friends levels have gone without issue, not that I want to test it :)
You know it may be that people who have low levels from drugs do better than people who have low levels from disease.......or something like that. But, like you, I wouldn't want to test it either. Good luck on getting those numbers back up to a much more comfortable level.
I had a pre-existing platelet problem before doing tx. For the previous 5 years my platelets stayed between 30,000 and 50,000. The hematologist wanted me to take prednisone, but I'm lucky I didn't because its really bad for people with Hep C. After I was diagnosed with Hep C I really worried about treating with the low platelets. They never got below 30,000 with 48 weeks of tx. When my platelets were so low the doctor didn't want to give me the liver biopsy, I was given infusions of gamma globulin (1/day for 6 hours, 5 days). They really brought my platelets up to the normal range. The only problem is it didn't last but a couple of weeks. I would think that could always be an option if absolutely necessary.
Worry will not make them go up, so as long as you have a good medical team keeping an eye on them, I would just concentrate on getting through tx. You're almost there and I wish you all the very best!
Dave, you are so close. I would not stress about this at this point. You still have some leeway with your platelets and you are almost done and have been adherent the whole time. You're going to get there and you're going to be fine. Hang in there, Dave....getting closer to knee to the ground time. You timed this really well. :)
Different protocols, but you and my husband have had a parallel course of sx it seems. He had been hovering in the 40-50 ranges for months, but when it dipped below 40, the nurse cautioned that going below 20 would mean Interferon cessation, due to risks that Susie addressed above. To that end, when his platelets dipped to 32 a couple of months ago, he was dose-reduced to 135 mcg/week, and he's now finally back up in the 40-50 range again.
I know you're looking for 100% compliance 100% of the treatment time, Dave, but I do think Inf dose reduction, if necessary for continuing plt drop, is preferable to being pulled early... although either way, I hoping you're past of the point of any significant impact on relapse. Wishing you best of luck and platelets! ~eureka
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