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Reducing PegIntron due to low platelets
I'm six weeks into triple w/Incivek and was UND at four weeks. My NP met with the doctor who said to reduce my PegIntron from 120 mcg. to 80 mcg. due to low platelets. My weekly platelets look like this: Baseline 156, 135, 93, 76, 64, 60. My WBC weekly: 4.1, 3.5, 2.7, 2.8, 2.5. My HGB is at 14.2.
I don't want to drop amount of PegIntron because I want the best chance of beating this thing. I've heard others say that platelet counts in the 50's is still tolerable. The docs can't monitor how much of a shot I give myself so I'm tempted to just reduce my dose slightly. 120 mcg. to 80 mcg. is a 25% drop. Maybe I will just drop down to 100 mcg. and see if my platelets go up or level off. I know you're not doctors and can't give medical advice but I would just like to hear some educated opinions on this matter.
I don't want to drop amount of PegIntron because I want the best chance of beating this thing. I've heard others say that platelet counts in the 50's is still tolerable. The docs can't monitor how much of a shot I give myself so I'm tempted to just reduce my dose slightly. 120 mcg. to 80 mcg. is a 25% drop. Maybe I will just drop down to 100 mcg. and see if my platelets go up or level off. I know you're not doctors and can't give medical advice but I would just like to hear some educated opinions on this matter.
Mine got down to .45 and my NP wanted to reduce from 180 to 90. Then she called in for Neupogen. I did NOT reduce my INF and took my Neup shot as soon I received it. My ANC and WBC skyrocketed back to normal levels before I even started tx. That was 5 weeks ago and I have not had to take another Neup shot since the one. So if I were you I would talk to my Dr about calling in a script for Neupogen.
There are several members on the forum who have taken Neup or are still taking it. Hopefully they will chime in soon.
JMHO...I wouldn't want to be reducing any drug this early in the game.
Have a great day!
Jules
There are several members on the forum who have taken Neup or are still taking it. Hopefully they will chime in soon.
JMHO...I wouldn't want to be reducing any drug this early in the game.
Have a great day!
Jules
Aren't you in or just finishing week 5?
60 is not that low since as you said folks on the forum have functioned on a lot less. I know with some people platelet counts can decrease progressively during first either weeks before stabilizing.
To be honest I am a little unsure what to say. I remember you had no viral load and you are stage three. Is there anything else? Your Hgb looks really good.
The VA site says:
Manufacturer guidelines recommend reducing interferon dosage (to 135 µg peginterferon alfa-2a or to 50% of peginterferon alfa-2b) when the platelet count falls below 80,000/µL, and suspending interferon for platelet counts below 50,000/µL
which I believe means this (from one of Hector's posts. The Peg site is a huge PDF file:
2.4 Dose Modifications
Platelet <50,000 cells/mm3 - Reduce to 90 mcg
Platelet <25,000 cells/mm3 - Discontinue treatment
Just based on that I would find out what your doctor considers dangerous.
I know just how you feel. I have no problem defying a dose reduction in matters I think I understand that pertain to me but this is over my head. I did not dose reduce Interferon since I had Neupogen on the way and my ANC was .4 (or something) but my platelets are quite high.
Lots of folks have very good insight about this.
Hang in there!
*** btw I was wondering if you had a VL at week 4? I can't scroll through posts right now
60 is not that low since as you said folks on the forum have functioned on a lot less. I know with some people platelet counts can decrease progressively during first either weeks before stabilizing.
To be honest I am a little unsure what to say. I remember you had no viral load and you are stage three. Is there anything else? Your Hgb looks really good.
The VA site says:
Manufacturer guidelines recommend reducing interferon dosage (to 135 µg peginterferon alfa-2a or to 50% of peginterferon alfa-2b) when the platelet count falls below 80,000/µL, and suspending interferon for platelet counts below 50,000/µL
which I believe means this (from one of Hector's posts. The Peg site is a huge PDF file:
2.4 Dose Modifications
Platelet <50,000 cells/mm3 - Reduce to 90 mcg
Platelet <25,000 cells/mm3 - Discontinue treatment
Just based on that I would find out what your doctor considers dangerous.
I know just how you feel. I have no problem defying a dose reduction in matters I think I understand that pertain to me but this is over my head. I did not dose reduce Interferon since I had Neupogen on the way and my ANC was .4 (or something) but my platelets are quite high.
Lots of folks have very good insight about this.
Hang in there!
*** btw I was wondering if you had a VL at week 4? I can't scroll through posts right now
Thanks for posting all of the info on your platelet counts. Your baseline was 156, before treatment. Which is the low end of platelet count range but should be plenty to get through treatment. So you are at 60,000 now? That is plenty of platelets and you should not notice and changes in blood clotting. What usually happens first is nose bleeds or bleeding gums.
As Idyllic pointed out the standard for dose reduction is.
2.4 Dose Modifications
Platelet <50,000 cells/mm3 - Reduce to 90 mcg
Platelet <25,000 cells/mm3 - Discontinue treatment
Your doc can look this up easily. Maybe he/she is worried your platelet count will continue to fall and go below 50,000? They shouldn’t be reducing yet.
Normally I don’t agree with people not being transparent with their doctors but in your case, I could see a reason reduce slightly as in my opinion you do not need to reduce yet unless you have other medical issues I don’t know about. Your platelets may rise and you said. The problem when doing this is if you have other problems later on then you could get yourself in trouble because what you are telling the doctor is not true and so any decisions he makes will be based on false data. That is why I would prefer you to find any other doc who will manage your treatment even with platelet counts in the 50s. See further below for more on this.
By the way I have cirrhosis and portal hypertension which causes low platelet counts. For the last 5 years I have platelet counts in the upper 50s to a maximum of 70,000. So you have nothing to worry about as far as bleeding is concerned. Useless you have other health issues I don’t know about.
The heart of the issue is… what platelet counts your doctor is comfortable with. Your doctor appears to be risk adverse and not comfortable which platelet counts below 60,000. It could be for many reasons. Most likely he is very inexperience with treatment and its complications in some individuals. All cirrhotics have this problem for example and many can’t treatment because they don’t have enough platelets to start with. There are other doctors who would have no problem following the dose reduction guidelines. Unfortunately we don’t know if reducing interferon this early in treatment will, or by how much it wil,l reduce your chances of SVR.
I understand your position. There are a lot of unknowns. How much more will your platelet count be reduced if you continue with the same or a little less interferon?
If you follow his/her instructions will it affect you chances of SVR?
I don’t know how advanced your liver disease it and how it will affect your life if you fail treatment.
The choice you always have is to chance to another gastroenterologist or hepatologist who is comfortable managing possibly lower platelet counts then 60,000. Only you can decide, as you are the one who knows best your situation. Everyone here will be glad to help in any way we can but it is only your doctor who has ultimate control over your treatment and its drugs. As an example if you go to a local teaching hospital that does liver transplant and has a hepatitis C treatment center, they will be much more experienced treating people with abnormal blood counts such as lower than 60,000 platelets. So that is one good option you may want to ponder. You are located somewhere that has more options than many other locations in the US so that is an advantage for you.
I hope this gave you soon alternatives or things to think about.
Good luck whatever you choose.
Hector
As Idyllic pointed out the standard for dose reduction is.
2.4 Dose Modifications
Platelet <50,000 cells/mm3 - Reduce to 90 mcg
Platelet <25,000 cells/mm3 - Discontinue treatment
Your doc can look this up easily. Maybe he/she is worried your platelet count will continue to fall and go below 50,000? They shouldn’t be reducing yet.
Normally I don’t agree with people not being transparent with their doctors but in your case, I could see a reason reduce slightly as in my opinion you do not need to reduce yet unless you have other medical issues I don’t know about. Your platelets may rise and you said. The problem when doing this is if you have other problems later on then you could get yourself in trouble because what you are telling the doctor is not true and so any decisions he makes will be based on false data. That is why I would prefer you to find any other doc who will manage your treatment even with platelet counts in the 50s. See further below for more on this.
By the way I have cirrhosis and portal hypertension which causes low platelet counts. For the last 5 years I have platelet counts in the upper 50s to a maximum of 70,000. So you have nothing to worry about as far as bleeding is concerned. Useless you have other health issues I don’t know about.
The heart of the issue is… what platelet counts your doctor is comfortable with. Your doctor appears to be risk adverse and not comfortable which platelet counts below 60,000. It could be for many reasons. Most likely he is very inexperience with treatment and its complications in some individuals. All cirrhotics have this problem for example and many can’t treatment because they don’t have enough platelets to start with. There are other doctors who would have no problem following the dose reduction guidelines. Unfortunately we don’t know if reducing interferon this early in treatment will, or by how much it wil,l reduce your chances of SVR.
I understand your position. There are a lot of unknowns. How much more will your platelet count be reduced if you continue with the same or a little less interferon?
If you follow his/her instructions will it affect you chances of SVR?
I don’t know how advanced your liver disease it and how it will affect your life if you fail treatment.
The choice you always have is to chance to another gastroenterologist or hepatologist who is comfortable managing possibly lower platelet counts then 60,000. Only you can decide, as you are the one who knows best your situation. Everyone here will be glad to help in any way we can but it is only your doctor who has ultimate control over your treatment and its drugs. As an example if you go to a local teaching hospital that does liver transplant and has a hepatitis C treatment center, they will be much more experienced treating people with abnormal blood counts such as lower than 60,000 platelets. So that is one good option you may want to ponder. You are located somewhere that has more options than many other locations in the US so that is an advantage for you.
I hope this gave you soon alternatives or things to think about.
Good luck whatever you choose.
Hector
I did my sixth shot this week. My viral load was UND at my week 4 labs. I am stage 3 fibrosis. Thank you for your reply and I do need to find out what my doctor thinks is dangerous.
Thank you for the detailed reply. Yes, I'm at 60K now. I get some bleeding of gums when I floss but no other signs of excess bleeding. I am at stage 3 fibrosis but no other hidden health issues.
I hear you about not being transparent with my doctor and the risk of complications and then having to tell them I wasn't following their advice. But they're acting like the triple therapy is so new that they don't know what to expect or how to react. I am at a county facility Harbor UCLA which is a teaching hospital. All my costs of treatment are covered by the county since I have no health insurance. I can't just walk into another facility and ask If I can have my treatment managed there.
WIth all this in mind here's what I'm going to do. My shot this week I already dialed down to 105 mcg. instead of 120 mcg. Next week I will do the same and see how my platelets look. If things look good, I'll keep dosing at this level. If not, I will ratchet down to 80 or 90 mcg. If I ever have to explain to the doctor I'll tell him I misunderstood the conversion ratios and made a simple algebra mistake.
I hear you about not being transparent with my doctor and the risk of complications and then having to tell them I wasn't following their advice. But they're acting like the triple therapy is so new that they don't know what to expect or how to react. I am at a county facility Harbor UCLA which is a teaching hospital. All my costs of treatment are covered by the county since I have no health insurance. I can't just walk into another facility and ask If I can have my treatment managed there.
WIth all this in mind here's what I'm going to do. My shot this week I already dialed down to 105 mcg. instead of 120 mcg. Next week I will do the same and see how my platelets look. If things look good, I'll keep dosing at this level. If not, I will ratchet down to 80 or 90 mcg. If I ever have to explain to the doctor I'll tell him I misunderstood the conversion ratios and made a simple algebra mistake.
I see, your medical options are limited by your healthcare coverage.
It looks like you will have to work it out with the doctor. Let's hope your platelet count stops dropping further and starts coming up with these reductions you have made. I think it is good that you have had a good response to treatment so far and are undetectable when cutting the interferon dosage.
Keep us updated on how things go.
Hang in there!
Hector
It looks like you will have to work it out with the doctor. Let's hope your platelet count stops dropping further and starts coming up with these reductions you have made. I think it is good that you have had a good response to treatment so far and are undetectable when cutting the interferon dosage.
Keep us updated on how things go.
Hang in there!
Hector
Theres a really good chance your platelets will level out and might even rise some, platelets do bounce around on treatment... Hang in there
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