Promacta update

Platelets still dropping went down to 68,  WBC 2.6 and RBC 3.61, HGB 12.8  Everything else still about the same.  platelets were coming up until I started back on tx.  Started this time at 101 dropped to 68 by 3rd shot.  The promacta has to be doing something as by the 3rd shot last time I drop to a 19.  Hopefully they will level out soon.

[frijole]

I have been following your updates but am still a little unclear about your doctor's treatment regiment.  He can't keep pulling you off treatment whenever your platelets tank if you are to clear the virus.  There are members here whose doctors let the platlets drop to the 30s or so.  I am sure you have read their posts.

Everyone seems quite interested in the Promacta and no one knows a whole lot about it except you and a couple of others who have taken it.

Your blood counts seem to be just fine. I really don't know enough about the platelets to comment  -- I just know everytime you stop taking the interferon and ribavirin, you start at week one again.
frijole

[hoocbud2]

I have not made it past 3 wks yet. This friday will make wk 4 on the second go around.  If they stop me again I will most likely give it up. I have not cleared the virus.  On a 48 wk tx.

[newleaf09]

They should let you keep going if the Promacta can keep you above 50,000.  I was dose reduced with the peg every time I went below 50,000.  As platelets went back up after the peg reduction, they increased it again. I was only stopped for low neutrophils (.640) in combo with platelets at 52,000, and then just until I could get hold of the Neulasta to bring the neuts back up.   When I finished TX I was down around 30,000 and looked like walking death, white as a ghost.  There is a danger of spontaneous bleeding (internal bleeding) if platelets get too low, but I don't know what level that is or what guideline number they use when completely stopping you.  Good luck; hope you can hold above 50.  It's a lot more comfortable to accept dose reduction after you've already cleared the virus, pretty unnerving to reduce the meds if you haven't cleared yet.

[can-do-man]

Also been following this with interest, I have cirrhosis whose platelets run about 80,000 off tx, Im now in my second tx, my platelets have been below 50,000 for many weeks, as low as 29,000 without any dose reduction.

What surprizes me is your doctor first started you on tx. with your platelets in the 30's, while my hepatologist is very aggressive when it comes to treating he would have never let me start tx with platelets that low knowing the interferon is going to cause them to drop further.

Thanks for the updates as i would like to see Promacta work for you. Best to you
Cando

[hoocbud2]

If they drop me below 800mg will it do any good to even continue tx.  That is all I take now I thought that was the lowest dose they gave a person.  I only weight 109 and they told me due to my size 800 mg was all I could take.

[can-do-man]

Not sure why they would want to drop the Riba dose, with a HGB of 12.8 i would try and get them to up it to 1000 as its the interferon causing your platelets to drop.

Have you thought about seeing another doctor (hepatolgist) for a second opinion? Good luck to you

cando

[hoocbud2]

How do they determine how much Riba to give someone?

[frijole]

Riba is weight based.  Normally -
(800 mg, 1,000 mg, 1,200 mg or 1,400 mg daily for body weights of less than 65 kg, 65 to 85 kg, 86 to 105 kg, or 106 to 125 kg, respectively

That is 800 mg if under 143# so 800 mg should be sufficient for your body weight.

[hoocbud2]

Thanks I wasn't sure for the determined the amount and some have suggested I should take 1000 mg.

[newleaf09]

This is absolutely fascinating.  The big 3 chemo side effects for HCV TX are low hgb, low neutrophils and low platelets.  The first 2 have been managed with rescue drugs (as well as the miserable interferon mood dysfunction) and platelets are the last big one to require a rescue drug, but one has not existed until eltrombopag (Promacta). If everyone does all right in the trials it would be wonderful to add it to the killer side effect control arsenal.

It will make hep C treatment for cirrhotics and even decompensateds much safer and save more lives.  We live in interesting times.

[hoocbud2]

I sure hope this drug works out.  It has help me to stay on treatment so far.  I hope it will count in the future for others as I'm not includes in a study.  But I'm registered with the Promacta drug makers.  I go today for cbc.