Peg reduction because of low platelet count - Have a question

[Trinity4]

Just got a call from my docs office.  Nurse said my platelet count is down to 88 which I'm assuming she meant 88,000.  That would have been after 6th injection.  She said my count has been dropping over the last six weeks. The doctor wants me to reduce peg from 180mcg to 135mcg.  Riba stays the same at 5 per day.  Have to go for another CBC next Wednesday.  I asked about neupegen and because I don't have any rx coverage and my meds are being supplied by the Roche Rep under my docs samples program they said neupegen is very expensive and would look into whether this can be given as samples also.  I'm a bit disheartend right now, I was so hoping this would not happen.  I hate having to reduce the peg because that lowers my chances of SVR.  Have any of you had to reduce your peg while on tx?  If I were to pay for the neupegen out of pocket does anyone know what the cost is and the usual dosage?  I told my nurse I wasn't happy about the peg reduction and she said consider yourself fortunate he's not stopping tx altogether.  Also, what can happen if platelets drop to low?  I know a lot of things can happen but what is the worst case scenario?  I should have asked these questions but my brain went into the "fog zone".  I greatly appreciate any input on this.
Trinity  

[scoop49]

i just read some info you sent to trinity4 (low plates)
just want to say thanks again for your input
i noticed that you are a non responder- my heart goes out to you

please keep up the great mentoring and the best of everything to you in your fight.

scoop49

[scoop49]

i just joined this site so hopefully your situation has evened out
i started at a 74 platelet count and after 6 weeks the doc pulled me off treatment for we hope just one week as my count dropped to low 20's.
treatment had been going very well previous to that so fingers crossed
i would consider 2nd opinion if your doc. doesn't allow tx at your numbers (assuming you don't have other difficulties)

good luck- i'd take your numbers anytime
scoop49

[HectorSF]

Recombinant human interleukin-11, also known as oprelvekin, has been evaluated for the management of peginterferon-associated thrombocytopenia, but the results to date have been mixed and somewhat disappointing.[92,93] Therefore, no therapy is currently available for interferon-induced thrombocytopenia. However, many experienced hepatologists will allow the platelet count to decline to 25,000-30,000 cells/mm3 before reducing the dose or discontinuing therapy.

92. Rustgi VK, Lee P, Finnegan S, Ershler W. Safety and efficacy of recombinant human IL-11 (oprelvekin) in combination with interferon/ ribavirin in hepatitis C patients with thrombocytopenia. Hepatology. 2002;36(4 Pt 2):361A.
93. Lawitz EJ, Hepburn MJ, Casey TJ. A pilot study of interleukin-11 in subjects with chronic hepatitis C and advanced liver disease nonresponsive to antiviral therapy. Am J Gastroenterol. 2004;99:2359-2364.

http://www.hcvadvocate.org/hcsp/articles/current_standards_2006.html
Thrombocytopenia, defined as platelet count of less than 75,000 is another problem seen with PEG-IFN therapy and is also related to IFN-induced bone marrow suppression. Rustgi et al. authored a brief report addressing the role of oprelvekin (recombinant IL-11), the growth factor for platelets, to support thrombocytopenia associated with PEG-IFN therapy. The main side effect of oprelvekin is edema, which frequently requires diuretic therapy. However, it is the opinion of many experts that thrombocytopenia due to PEG-IFN therapy is rarely associated with any clinical manifestations. Even patients who have very low platelet counts appear to do well with PEG-IFN. An alarm level of platelets at 20,000 should prompt immediate therapy discontinuation in any patient, and dose reduction or very close laboratory monitoring at a platelet count of 30,000.

Hector

[TnHepGuy_]

There is at least one drug approved to try and increase platelets: Neumega (http://www.rxlist.com/cgi/generic/oprelvek.htm). Though from what I remember having seen folks talk about in the past on here (MedHelp), it's no guarantee and the sx's can be severe.

And there were a couple small, preliminary studies a few years back that showed that Vioxx and other COX-2 inhibitors taken in low dosage (1/4 to 1/2 normal dosage, if memory serves) could help lessen platelet drop-age during interferon tx. Now, of course, Vioxx has been withdrawn from the market by Merck due to potential increased risk of myocardial infarction and stroke. The other COX-2's (Celebrex, Bextra) are still available, though I'm not sure how willing a doc might be to write an rx for one. And any patient with any kind of heart/hypertension risk would need to rule it out all-together.


TnHepGuy

[Trinity4]

Thanks CS, I've printed out this entire thread and ready to make my case today.  As I've said before, this doc is way behind the curve on the current thinking in dealing with this disease.  It would be very difficult to change docs right now, but I've planned on doing so for quite some time anyway so that 's probably my next hurdle to get over.  I wish I could just sign a waiver that relinquishes him from all responsibility if I bleed out (which is very unlikely at 88)  I'm sure he has my best interest in mind but I wish he'd get off his butt and do some research about what the Liverheads and hemo's say.  Again, thank you and I will keep you posted.
Trinity

[CockSparrow]

Below is what the Pegasys Product Information Sheet has to say on decreased platelets.
I’d give your Doc a copy and ask what he knows that ARoche don’t.

Bone Marrow Suppression It is advised that complete blood counts (CBC) be obtained pretreatment and monitored routinely during therapy. PEGASYS should be used with caution in patients with baseline neutrophil counts <1500 cells/mm3, with baseline platelet count <90,000 cells/mm3 or baseline haemoglobin<12 g/dL (see Dosage and Administration). As with other interferons, caution should be exercised when administering PEGASYS with other potentially myelosuppressive agents.

Effects on Laboratory Tests
The entrance criteria used for the clinical trials of PEGASYS may be considered as a guideline to acceptable baseline values for initiation of treatment:
• Platelet count ≥90,000 cells/mm3
• Absolute neutrophil count (ANC) ≥15
• Thyroid Stimulating Hormone (TSH) and T4 within normal limits or adequately controlled thyroid function

PEGASYS treatment was associated with decreases in platelet count, which returned to pretreatment (baseline) levels during the post-treatment observation period (see Adverse Effects). Dose reduction is recommended when platelet count decreases to levels below 50,000 cells/mm3, and cessation of therapy is recommended when platelet count decreases to levels below 25,000 cells/mm(see Dosage and Administration).

CS

[Trinity4]

Thank you so much everyone.  You are the best!!!  I have a call in to the doc and hopefully he will call me back tomorrow.  I'm going to try my best to get him to give me a little more time before reducing peg.   My numbers aren't that bad yet and I get what he's trying to do.  I believe his intent is to prevent having to pull me off of tx.  I could just give myself the full dose on Friday but I that might really screw me up because he will think that I've reduced dosage and if my numbers come back next week even lower he may make me stop totally.  Good Lord, what's a girl to do!!!  Anyway, thanks for all the input and I'll let you know what he says tomorrow.
Trinity  

[HectorSF]

No "helper drugs" are currently available for low platelet counts. (That I know of). Most helptologists will allow a patient to drop to 25 – 30 k before reducing PEG-INFN or discontinuing therapy. I’ve been in the 30ks for at least 10 weeks now on tx I was at 26k at 12 weeks and then had to stop anyway because I am a "null responder".

I think you are right on track. You don't want to reduce interferon if you can avoid it. At least not until you are UND.

But it is the doctor's call. They rather have you stop treatment then cause more problems, from their point of view. They all have different baselines as to when they want "to pull the plug" and stop treatment.

In the long run I think it's better to be honest about your med compliance. Most likely if the doctor is good, he will see you are not reducing the interferon. Especially if your level keep failing. Hopefully this is not the case and your platelets will vary over time and not "bottom out".

Only by slowly reducing your meds in a step-wise manner AFTER you have reached UND will you have a good chance to clear the virus.

Basics:
Platelets are clusters of proteins that act like bricks to form blood clots. They are produced by cells in the bone marrow. Platelet counts often drop if you are on interferon and ribavirin therapy. This can put you at a higher risk for bleeding.

* If you have a low platelet count, you should pay particular attention to bleeding. Nosebleeds and bruises are more common. If you are concerned that you are bleeding or can't stop bleeding from a cut, seek medical attention.

Decreasing the interferon dose can help to improve the platelet count (your provider will advise you about this).
--------------------------------------------------------------------------------------------------------------
THROMBOCYTOPENIA
A decrease in platelet count also may be observed in patients who are receiving interferons, and such decreases are more prominent with the peginterferonspeginterferons. The decrease is caused primarily by a reversible
bone marrow suppression, although autoimmunerelated thrombocytopenia may also occur. The concurrent use of ribavirin may blunt the thrombocytopenic
effect of interferons as a result of reactive thrombocytosis.
With peginterferons, the platelet count decreases gradually over 8 weeks, stabilizing thereafter and returning to baseline values within 4 weeks of stopping
therapy. Bleeding complications as a result of thrombocytopenia are uncommon.
In randomized clinical trials of the peginterferons, the rate of dose reduction attributed to thrombocytopenia ranged from 3% to 6%. However, most patients in clinical trials are carefully selected, and these trials excluded patients with more advanced
liver disease. Patients with cirrhosis may have baseline thrombocytopenia due to hypersplenism from portal hypertension, and these patients may develop
more significant decreases in platelet counts owing to bone marrow suppression during therapy. For these patients, an alternative approach to dose modification
would be beneficial to avoid dose reduction or discontinuation, both of which reduce the chance of SVR.


Watch for the nose bleeds!
Best of luck.
Hector

[sldb]

Most heps do not worry about your plat count til it drops below 50,000.  This is what i was told during tx. Mine would drop ,then inch up back to an acceptable level.  Low platlets can lead to bleeding.

[Tallahassee]

Ditto FLGuy & Mikesimon -- most of my 2nd year of treatment my platelets were in 20,000th area.
I would also try to schedule a consult with a Prominent Dr.(check Universities for it).  You may also try to e-mail to one of LiverHeads.

Good luck and all the best!

[Trinity4]

That's funny - We were thinking the same way at the same time.  

[Trinity4]

Do you think it would be in my best interest to argue this with him or I could just continue the 180mcg and not reduce dosage.  My concern is if I drop to low without giving myself a chance to come back up he'll take me off tx totally.  He's a GI and not a very progressive or aggressive one at that.  I started out at 137 and dropped to 118 and then most recently 88.  I was at 118 after two weeks of tx.  The 13 phlebotomies I had for high ferritin prior to tx probably didn't help in the platelet arena either.  Just wondering if I should try and talk him out of changing dosage for a least a couple of more weeks.  
Thanks
Trinity

[mikesimon]

Different doctors can have significantly different approaches to decreased platelet counts. My doctor, like FLGuy's, wasn't concerned with mine and my count got into the low 20,000's at one point. In my opinion 88,000 doesn't seem to be low enough to warrant a treatment change but apparently your doctor is uncomfortable with your level and he's calling the shots. There isn't much you can do other than find a doctor who has a different approach and that's not easy to do. I guess you could just ignore your doctor and inject the full dose of Peg and see what happens. I wouldn't recommend that but I wouldn't argue against it either. I am not knowledgeable enough regarding the impact a dose reduction could have on treatment response for you at this stage in your treatment. Maybe it won't make any difference at all. I hope that is the case. Good luck, Mike

[FlGuy]

It's not unusal for many tx'ers to continue treatment unchanged when platelets are in the 60's, 50's and 40's.  Many knowledgeable and aggressive docs will monitior only til the 30's. Mine leveled off around the low 60's.  Before treatment the doc's involved (liverhead, tx doc and hemo doc) all agreed no action or concern til 30.  Thing is, not much to be done about them. There is a med in trial right now.  Another (Numega - google it) is apprarently very rugged stuff, not approved for hcv tx and just about guarantees anemia.

[Texas714]

My platelets were low when I started treatment.  They were 114.  After 4 weeks they dropped to 76 and at 8 weeks they were down to 66.  I go back for more test next Monday so I'll see how much more they have dropped.
He's been watching them but has not made any changes as of yet...I hope he doesn't!
Mine have dropped but yours may have dropped more.  I don't have any advice just thought I'd share my personal experience.

[dorsey15]

from what I know if your platelets do drop too low on this treatment...they will have to stop treatment all together...what ?? that market is?? I am not sure...Normal range is 140-400 thousand...anything below 100 is dopping low...certainly 88 is something to be concerned about...
It is not like chemotherapy (cancer) patients where they can give us platelets...they just stop treatment..
Neupogen IS for Low white count...I'm not sure that they would put you on anything for the platelet count...Procrit is usually given for low Red Count--I don't think that helps platelets though--not sure.
Good luck though..
Dorsey

[Trinity4]

I got to thinking (duh) and maybe I have the neupegen thing wrong.  Isn't that for low white blood cells?    In my research, it looks like I have a condition called thrombocytopenia and I'm not sure there are any rescue drugs for that yet?  Please correct me if I'm wrong
Thanks
Trinity