I went for my doc visit this morning. When I had my labs drawn on Monday the platelet count was not available because there were large platelets shown on the test and the NP said that made the platelet count undetectable. Five weeks ago my platelets were 25,000. I am in week 21 of triple therapy (Incivek but I have been done with that part for 9 wks). I asked her how low was too low and she said they would only become concerned if they got to 10,000 or below and then they would reduce the peg. She had me repeat the CBC but told me it would be tomorrow before she could look at the results. As much as I like the center I am using, I am a little frustrated that she acted like she was so busy today that she couldn't take 5 minutes to look at the results and send them to me. I understand that I am not their only patient, but I am my only ME. What do you guys think is 10,000 a little extreme or is this pretty standard?
I'm sitting at the transplant center waiting to get labs drawn. Week 22 of 48 triple. They have never let me leave w/o going over my bloodwork. 10,000 is LOW. Because there are no symptoms w low platelets, it dangerous. Below 20,000 you could have spontaneous bleeding. I was told The same thing- reduce Peg below safety range. Every clinic sets their own ceiling.
I was 180 peg n when I got below 30's (if I remember rite), they took me to 80. Now that I'm up to 40's they have me at 135 Peg. I can't wait to see whassup today. I dread Promacta, but may have to start it.
I'd throw a fit if I were you. It's your freaking life here! You start w "I hate to be a pest" and them if they dont reapond? BE A PEST!! My insurance denied n I screamed like a cat w a mashed tail. How many weeks do u have to go? Keep us posted. Karen :) hang in there..
My platelets were at 71 last week. The nurse that called with the results was freaking out because they were so low, but the doctor didn't seem concerned. I have to have my blood drawn weekly. All of my blood counts are really low. This is my last day on Incevek. I'm waiting for the results from this weeks draw.
Whatever you do, don't cut yourself. :) Good luck.
Thanks, Karen. I am about to email the np and see if she can't just pull up the results. The lab told me they would be ready in about 30 minutes. I already told her this morning I have killed more that one dead horse before. I just NEED the results.
Because I have cirrhosis and I was a NR two times before, I am doing 48 weeks, so I still have quite a way to go.
10K is very low. Ask your Dr. if there are options available to you to keep you in treatment. Mine dropped to 21k and I have hemophilia (not a good combination). I'm also doing 48 weeks b/c of cirrhosis and HIV coinfection. At week 22 now. Promacta worked like a charm and brought my platelets to 80k. Also Inf/Riba reduced to 135mcg inf and 600 qd of riba. I had no ill effects from Promacta (don't know why crossroadsec is dreading it) We all react differently, I guess.
Before calling the hepatologist angrily, take a minute to think if it is really how you feel or some medically-induced irritability. I've been guilty of that more than I care to admit. In the end, they are on your side, don't alienate them. Even if you get the lab results, a treatment change should be determined by the Dr. Hang in there.
Vent here. We can take it and understand it and will not hold it against you.
"I asked her how low was too low and she said they would only become concerned if they got to 10,000 or below and then they would reduce the peg."
How do I state this diplomatically....This NP is obviously clueless. I would contact your doctor directly. They are responsible for your care not the NP. 10,000 is not a value that any competent doctor would not be very concerned with. 10,000 is extremely low and you could have complications at that point. Your peg-interferon should have been reduced (to 90 mcg) if you platelet count is below 50,000 according to the prescribing label on the peg-interferon.
Any platelet count below 25,000 is very low. In fact treatment should be stopped if your platelet count is below 25,000 according Pegasys package insert.
A normal platelet count is 150,000 to 450,000 platelets per microliter of blood. A count of less than 150,000 platelets per microliter is lower than normal. But the risk for serious bleeding doesn't occur until the count becomes very low—less than 10,000 or 20,000 platelets per microliter. Milder bleeding sometimes occurs when the count is less than 50,000 platelets per microliter.
Thrombocytopenia defined as a platelet count of < 150,000 cells/L
Mild - 75,001 - < 150,000
Moderate - 50,000-75,000
Severe - < 50,000
* Easy or excessive bruising
* Superficial bleeding into the skin that appears as a rash of pinpoint-sized reddish-purple spots (petechiae), usually on the lower legs
* Prolonged bleeding from cuts
* Spontaneous bleeding from your gums or nose
* Blood in urine or stools
* Unusually heavy menstrual flows
* Profuse bleeding during surgery or after dental work
Dangerous internal bleeding can occur when your platelet count falls below 10,000 platelets per microliter.
pegasys package insert
2.4 Dose Modifications
If severe adverse reactions or laboratory abnormalities develop during combination PEGASYS/COPEGUS therapy, the dose should be modified until the adverse reactions abate. If intolerance persists after dose
adjustment, PEGASYS/COPEGUS therapy should be discontinued. Table 3, Table 4, Table 5, and Table 6 provide guidelines for dose modifications and discontinuation of PEGASYS/COPEGUS based on laboratory
abnormalities, patient’s depression status, and cardiac status.
When dose modification of PEGASYS is required for adverse reactions (clinical and/or laboratory), initial dose
reduction to 135 mcg (which is 0.75 mL for the vials or adjustment to the corresponding graduation mark for the prefilled syringes) is recommended. Dose modification to 135 mcg per week can also be achieved by using
a 135 mcg/0.5 mL strength disposable autoinjector. Dose reduction to 90 mcg (which is 0.5 mL for the vials or adjustment to the corresponding graduation mark for the prefilled syringes) may be needed if the adverse
reaction persists or recurs. Following improvement of the adverse reaction, re-escalation of the dose may be considered.
Robo- I was concerned about the label warnings on Promacta. After the AASLD conference, my Dr said a lot of centers r using it. They always have here, but my insurance balked. I'm ready for it now.
I agree about not being unkind. But my hmg was at 5 n platelets 20's during week 8 -10 n I was afraid they'd stop tx. She's calling Promacta in again today to appeal.. Keep us posted. Karen :)
Promacta is known to be hepatoxic so they need to monitor your liver function tests (LFT) at least weekly while they are figuring out the dose that works
I am on 25mg/day, also have cirrhosis and it has raised my platelets from 42 to 52 in 3 weeks with minimal LFT increases although they are now waiting on starting Tx as I have high pressure in my pulmonary artery and they want to check it out before starting
Thank you for your responses! I have great news after I emailed her and asked if she had a little extra time if she would please check the results from today's test and let me know, My platelets increased to 40,000. I know that is still low, but it is an improvement from 25,000 5 weeks ago and not close to 10,000. I hope they continue to improve or at least stay the same.
Of course, I was very nice when I emailed the NP. I like to vent here, but I would never be ugly or inconsiderate to my healthcare providers unless I knew they were intentionally trying to harm me, which I know they are not. Plus, I know we have to work together to make this process a success and I want to be a good patient and keep the communication lines open. I also understand when I signed on to do treatment it wasn't going to be an easy process and at times it can be frustrating. I just don't want to get into a situation that can't be undone. I also realize they are the medical professionals and have much more experience than I do when it comes to recommending the proper course of treatment, but we are all human and medical mistakes are made every day.
Can, I know the recommendations on this board can not replace my doctor's advice, but it helps to compare notes and hear from people who truly understand. I do feel I am at a good transplant center, but it never hurts to ask questions, be your own advocate, and ask questions. I just want to be sure I take all the right precautions and get the best care I can.
Thanks again everyone. I wish you all the best of luck.
Great new, so happy to hear you are going up. It is nice to hear something good, a positive for the day so to speak. I completely understand wanting to ask your peers, there are times you can not talk to any one but a receptionist
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