thrombocytopenia

[robo229]

Got mixed news.

Viral load undetectable at 8 days into treatment with Telaprevir + Riba + Interferon.  Am very happy about this but platelets dropped to 37.  Dr. wants to put me on Promacta to raise platelets.  Anybody have any experience with this?

Robo

[crossroadsec]

Not yet, but I wanna track your post. I had transfusion but numbers went back down. Let us know how Promacta works. I hope it makes you sooo strong! Low platelets will drain you. Stay cool n get lotsa rest and water! Have a strong day. Karen

[FlGuy]

You might use the search function to look for posts by hoocbud2.  hoocbud2 used promacta for underachieving platelets.

[nygirl7]

Congrats on the good news part I'm sorry I have no experience with the latter it might be the one side I did not get but FLGuy gave you great advice.  :)

[robo229]

"underachieving platelets", I like that term.  Can I expand that to underachieving clotting factor, immune system, etc?

I will certainly scour the web looking for info.  

My initial reaction is to rejoice in the UND news, so I will focus on that.

Robo

[spectda]

I would follow FlGuy's advice about searching the promacta. It can damage your liver further and that is why it is not used in HCV treatment generally. I used neumega for low platelets in my trial which also has can have serious sides and really hit me hard.

here's a thread that I posted when my platelets were on a downward spiral
http://www.medhelp.org/posts/Hepatitis-C/Promacta-for-low-platelets---/show/1307112


It's not common to have a PCR so early in tx, but personally I like the idea that you did and great to know you were und so quickly.  Was that platelet level also taken at 8 days and what was your starting platelet level?

Good luck-
-Dave

[spectda]

http://www.medhelp.org/posts/Hepatitis-C/Eltrombopag-platelet-drug-Trial-Halted-/show/1240951

Eltrombopag (platelet drug) Trial Halted
by mikesimon , May 14, 2010 06:36AM
Tags: platelets, eltrombopag, thrombocytopenia
Thrombocytopenia Trial Halted
By Kristina Fiore, Staff Writer, MedPage Today
Published: May 13, 2010

WASHINGTON -- Drugmaker GlaxoSmithKline terminated a trial of eltrombopag (Promacta) in liver disease patients due to an increase in thrombotic events in the treatment group, the FDA said.

Six patients (4%) taking eltrombopag had a thrombosis of the portal venous system compared with one patient (1%) on placebo, the company said in a letter to healthcare professionals.

The findings, which were reported at the European Association for the Study of the Liver meeting in April, emerged from an analysis of the ELEVATE Study, a randomized, double-blind, placebo-controlled, multicenter trial.

In the trial, patients with thrombocytopenia due to chronic liver disease were randomized to eltrombopag 75mg or matching placebo for 14 days prior to an elective invasive procedure.

The drug is a thrombopoietin receptor agonist and is approved for the treatment of thrombocytopenia in adult patients.

The researchers found an imbalance of thrombosis of the portal venous system in treated patients compared with those on placebo.

Among the six patients in the eltrombopag group who had a portal venous thrombosis, five had it at platelet counts above 200,000/μL, the company said.

GlaxoSmithKline has notified the clinical trial investigators and regulatory agencies and is working with regulatory agencies to add safety information to the label.

The FDA said the drug is indicated for the treatment of thrombocytopenia in adult patients with chronic immune idiopathic thrombocytopenic purpura and is not indicated for the treatment of thrombocytopenia in patients with chronic liver disease.

The agency also added that treatment should be aimed at increasing the platelet count to a level that reduces the risk of bleeding and shouldn't be used in an attempt to normalize the platelet count.

http://tinyurl.com/2a734bb

[evangelin]

I was able to keep my husbands platelets out of trouble with 10 mg. of melatonin.  It made him groggy in the AM but coffee would generally bring him out of it. Some cancer patients are using 20 mg., or I think possibly even more, to help keep up platelet count.  I was a little uneasy ggoing that high so I settled at 10 mg. at bedtime.  Joe was able to maintain and even ended after 60+ weeks higher than he began.  Of course, I'm not the Dr. so I can't say you should do this but I'm just saying this is what we did and it appeared to work.  Others have used shark liver oil to achieve a higher platelet count, but I just felt more comfortable with the melatonin and it worked sufficiently for us.  The life Extension Foundation website has a really good protocol page for keeping up blood counts.  It is mostly geared to cancer patients but this is where I found the best information about this subject.  If you can't find it, you can call them and ask them for directions to that page.  I have called and asked questions, more than once, and found them helpful to direct me to information I'm looking for.  I looked at some websites addressing this the other day, and there is quite a bit more available than there was a few years back.  There have been discussions of this on Medhelp, in the past.  "Tashka" is knowledgable on the subject and is a member her.  You might try searching her old posts.
Sorry to say that my husband never achieved SVR.
Be careful . I wish you well.,
Ev

[hoocbud2]

Hi, I'm hoocbud2 Glad to hear your viral load in undetectable. My platelets dropped to below 19 while I was on treatment, and the doctor stop treatment.  I did a lot of research and found the site for Promacta. I took the information to my doctor. He said lets give it a try. Within a week my platelets were up. I started back on treatment 2 weeks after starting the drug and stayed above 30 through out treatment. I cleared at 12 weeks but relapsed within a couple of months after finishing treatment. I stopped the Promacta at the same time as treatment and was able to maintain a count in the 70's. I just started back on treatment last Friday. So we will see if the platelets hold up this go around or not. I would not have been able to complete treatment without the Promacta. Don't have a lot of time right now. But will get back to in a little while.


Debi

[Bill1954]

Hi Rob—

I dropped you a quick note, and see that Spectda and hoocbud2 have already checked in :o)! I don’t have much time right now either, but will try to check back with you later and see how things are coming along. Best to you, take care—

--Bill

[robo229]

Thanks for the info.  Thrombotic event in me would be near impossible given my hemophilia.  The PCR and platelet count were done together on day 8 of triple tx.  Don't know why they did the PCR, but that is a bonus.  Pre-tx platelets were in the 50k range.  Platelet drop was kind of expected.  

My concern is the Promacta will be yet another toxin on board.  I had sides 5 years ago from Infn/riba that forced me to halt treatment before a 4wk PCR could be done.

Robo

[crossroadsec]

Wow. So much to think about. I think what they said is if you have portal vein hypertention not to take it? I've got my Nadolol down to 20 mg daily and my varices is under control.
Why not just transfuse? I felt like I was 13 years old after 2 pints. Of course tx will make it go down again, but if my Dr. is willing, I'll take it. I met a woman through fb who had a transfusion every month. She's und and it's been over a year since her tx ended.
I love you guys w/ all your liver knowledge. I avoided sites after diagnosis n focused on nutrition, mental, physical, spiritual strength. It seemed like the ones I hit were full of fear. Maybe it was jus me. I'm SOO glad to have found you all. Really grateful today. Karen

[crossroadsec]

Oh and big ole congrats on the und. I put on my party hat n grabbed a horn for that one! brava!!

[nygirl7]

You know with a transfusion you are risking getting HCV back again - not just that no test is 100%.  If I had to I would have one (had 4 pre-tx in 2004 unrelated to HCV) but I would not encourage anyone to do it every month.

There was someone in here a while ago that posted a bunch of links to how badly damaged our blood supply really is and how things get through all the time, I thought it was a bunch of BS until I actually looked into it.......andit scared me pretty good.

Just saying not like I wouldn't have one if needed it certainly but I wouldn't advocate it as a good course of treating anything.......the risks are too high.

[crossroadsec]

Well shoot. I'm not counting on becoming anemic. Dr. already mentioned drug support. But for stage 4 cirrhosis? I'm praying hard to keep those levels up. Is there anything we can do naturally? Karen

[HectorSF]

I don't think anyone is counting on or looking forward to anemia during treatment. ;-) As you may or may not know, anemia (hemoglobin < 10 g/dL) is more common in patients with cirrhosis then other HCV patients with less advanced liver disease. But maybe you could be lucky and not suffer from anemia during treatment. Both the ribavirin and interferon contribute to the development of anemia. But ribavirin universally causes early destruction of red blood cells, How much reduction of  hemoglobin a patient will experience (and whether they become anemic or not), varies for each individual.

Dose reduction (which negatively affects SVR rates) and Epoetin alfa are the only proven ways to reduce anemia caused by ribavirin.

Best of luck!
Hector

[robo229]

Thanks for the reply.  

My disease is advanced, yet asymptomatic.  I am determined to do everything in my power to complete this treatment.  I have survived too much (hemophilia[well-managed], HIV[now UND x 11 yrs], and probably 20yrs of hcv) to succumb to to this.

I am not at all concerned about thrombotic event bc of hemophilia.

I am followed by a top Hepatologist in NYC.  Promacta is his idea.  

Nobody is more keenly aware of the downside of transfusions than me.  That's how I got into this mess.  I will defer to my Drs. on the platelet problem.  I've already been overly involved in my management bc I am a physician myself.  

Robo

[child24angel]

Congratulations !! being UND so early is a good sign.

I hope everything works out for you this time around  Robo !
Sincerely I do !

Hugs sent your way
Elaine

[spectda]

I suppose know one understands your condition and risks better then you becuase of your background and what you have experienced medically. It doesn't sound like there is much of a choice about taking a drug to stimulate platelet production.

It might be worth discussing neumega vs promacta with your hepa. The main side from the neumega is edema and specifically having fluid build up around your heart and lungs. Promacta works better at increasing platelet production but the neumega does work. The risks are different, just a choice of the evils as with many treatment decisions.

It was very tough to tolerate the injections for me. My doc said many people he treated with it had no adverse effects, but each time I injected I would gain about 5-6 lbs overnight of water which would take another 2 days to dissipate. I also found it difficult to breath or stand up for about 2 days after the injections but my hgb was very low at the time which probably contributed to the problem.

My platelets started about 180,000 but at one point they were down to 26,000. Victrelis suppresses bone marrow production (don't know about Incivek). My WBC, ANC, HGB and PLTS which were all normal prior to TX became critical and I was taking neumega, neupogen and procrit.

In trials for neumega where the danger of edema became evident I believe they took an injection daily. My tx doc experience and perspective was that once per week would pose little danger.

Good luck and hopefully this will have been worth the pain of tx in the end.
-Dave

[willing]

Congratulations on the UND - it's looking  promising! The eltrombopag seems a good call. If they've already dropped to 37 this early further drop seems likely. The  accepted cutoff seems to be the WHO-grade 4 threshold of 25, though from posts here pts have come close to that line and pushed on. Along with spectda's 26 I believe cando also got into the 20s.  I'm still at 41 and getting in sight of the end so will opt for dose reduction if the drop continues. The body seems  able to muddle on even with seriously depressed blood cell production.  

[robo229]

Thank you all for the feedback and info.  I will do my best to keep on tx and add hep C to the list of assassins that failed to kill me.

Robo