Kalio 1, question regarding oxymatrine and lacto...

Hey Kalio,
   You replied to my question about platelets and mentioned taking Oxymatrine and LactobacillusGG. I wondered whether you were taking them specifically for low platelets and the amounts as well as if they need to be taken together. I just returned from my Dr. appt and today's lab work showed my platelets have continued to drop. He's having me cut my pegasys dose in half and may pull me if they don't improve. Sigh!

[sindog]

I'm not Kalio, but I did take neupogen for low wbc's. The drugs for low wbc's work quickly. I would be more worried about dr lowering your interferon, than these drugs working effectivly.

[Kalio1]

How low are they? What number is he using as a threshold? Maybe you can get him to push a bit and see if they come up some or level off. I'd balk at reducing the dose especially in the beginning of therapy. How about going to Gish or one of the docs in his office? Or a Hematologist? eeing a Hemo will take the liability off your doc and a Hemo might be more generous with how low is too low. My doc told me to reduce once and I said "no!" and talked to him about it and he ended up seeing it my way. Many docs tend to take the "path of least resistance" which isn't always the best move for you. Obviously if platelets tank too badly you will have to face med reduction but that you want to avoid if at all possible as Im sure you know.


I am not taking the Oxymatrine for it's possible platelet improving properties,although that would be a nice result, I am taking it for it's antiviral properties to add to the antiviral "cocktail" I am on with SOC to increae my viral attack. The LactobacillusGG I take to maintain intestinal balance with all these antivirals flying around my system.

[orphanedhawk]

My platelets were 98 pre tx. Last week's lab showed them at 40 and today they were 34. He feels that is too fast a drop in 6 weeks. He wants to cut my shot by half (180-90). I have always been such a lightweight that it doesn't surprise me that the interferon is kicking my butt.
   Gish is an option. I can get down to S.F. I don't have insurance but I can probably work that out. At least a second opinion wouldn't hurt. I'm just so tired and my shot is waiting.

[chcnme]

I hope you won't have to stop altogether. 34 is getting pretty low :(   I hope they'll do something for you quick.  I found out today (got second opinion)  that my platelets dropped to 40 something within 2 weeks of starting treatment.  They were in the low 100s going in.  They pulled me right before my 3rd shot (but I also had an infection / had to have invasive procedure.) Doc today talked about Neuopogen helping with low counts  (and it sounded like he meant it could also help low platelets.)  I had low anc and low platelets.  Best of luck to you!

[Kalio1]

That is pretty low. Is he willing to try Neumega? I believe it is Neumega that is the drug that can improve platelet growth but I don't know if it is used with HCV, I know it is used for some cancer patients.

I know what you mean, it feels like a monumental task to try to see a new doc on treatment. It's a task just taking a shower!Maybe cutting the shot in half they will level out? Cutting the dose is better than stopping completely. I hope they pop up soon, hang in there.

[orphanedhawk]

I'm sorry to hear you're having this snafu. I hope you heal well.
   My Dr. wants me to get lab work for the next two weeks to make sure the platelets don't continue to drop. If they do, he'll want to pull me.   My wbc are low too.
    Thanks for your words and best of luck to you, as well.

[orphanedhawk]

Thanks. After thinking tx was easy, I really felt horrid this past week. So, maybe cutting back will help. And my Dr. is open to increasing the amount if, or when, my platelets increase.
    I tried contacting the Gish gang once before.  Between my trying to fax stuff to them and forgetting to include things, I just let the whole thing go.  Like you said, regular life can become a task. I try, really hard, just to get outside and take my daily walk up the ridge. However, I am not that enamored with my Dr.  He is capable, less than an hour away, and returns my phone calls.
    Thanks for the support.

[FlGuy]

At least make the decision, with your doc,  to stop or not with at least one more cbc.  Although you may have establised a downward trend, platelets can bounce around some.  A few month ago, forget who, had a similar near-miss with plates.  A subsequent cbc revealed a bounce-back, on their own.  You've got a lot invested already.

[orphanedhawk]

My Dr. want me to do 2 CBC's next week and the following one, to make sure I don't continue to drop. I don't want to stop tx.  I just wish there was something I could do. I'm such a petite person that everything hits me stronger than other people. So maybe a half dose will actually be better for me. Thanks for the encouragement.

[FlGuy]

At  least the doc is taking the right steps in order not to reduce - and that's good.  You still may have a little wiggle romm. The liverhead who designed my current tx said not to mess with the platelets til they hit 30.  The hematologist who watches my blood said he's ok to 25.  If reduce is the answer, hope it's gradual.  You on Pegasys or PegIntron?  No knife juggling, ok?

[FlGuy]

Oops, I see it's Pegasys.  Does doc have an issue with riba dose, or just the peg?

[orphanedhawk]

Don't know if you're still there but I just returned. My Dr. has said nothing about the riba. He thinks most the sx are from the interferon ( ha! he isn't taking the stuff!)  
I love the term liverhead. I'm stealing it from you.

[FlGuy]

You can use 'liverhead', I stole the term from someone here anyway (think I read it from Goof - who probably also purloined it). Peg is usually the main offender for platelets. Another thought, when you have those cbc's over the next couple of weeks try to time them so they are as far from the prior Peg shot as possible.  The theory being that the max impact of the Peg diminishes over time (the tx week) If you shoot on Fridays, look to do the cbc say on Thurs or friday. Also keep in mind that using Peg you are using as much as a big person (I use 180 and am 185lbs) and you said you were petite.  Although it's PegIntron that's weightbased, I imagine that someone who is , say 80 pounds lighter than me, can have an effective response with less of the same.  But, I'm an amateur and your doc is the doc.

[mikesimon]

<A HREF="http://www.medicalnewstoday.com/medicalnews.php?newsid=35122/">Blood Platelet Levels Significantly Increased With Eltrombopag, Global Study Shows</A>

Mike

[mikesimon]

Here is the link:

Blood Platelet Levels Significantly Increased With Eltrombopag, Global Study Shows

http://www.medicalnewstoday.com/medicalnews.php?newsid=35122

[orphanedhawk]

Thanks for the link. Is it available though, or still being tested?

[mikesimon]

From what I see the drug is still in trial phase.
See: http://www.gsk.com/investors/pp_pipeline_standard.htm and go Product Pipieline PDF file.
Mike

[mikesimon]

I don't know whether it is only in trials or is available now. I can try and find out. I wish I had access to it when I was treating because my platelet count got down to 23,000. I was allowed to continue treating and after I finished TX my count recovered, but it took a while - 4 months I think. I'll look around and see what I can find out for you but my guess is that it's not yet available. Mike

[OceanLiver]

I can't believe you feel so bad and are still walking up to the ridge.  For a few weeks I could barely make it up to my truck, flat ground only.   You are one strong woman no matter how petite.  I agree that maybe the lower dose will be enough for you.  It seems you doc is really watching you carfully.  How many weeks are you now?  Good luck.  Ocean

[orphanedhawk]

Hi Ocean,
   A year ago I was climbing stairways to mountain top temples in Burma. And that was while trying not to eat salt so my ascites wouldn't swell my gut. I didn't realize how bad my liver was.
    It really is an easy up-hill walk along a dirt road to the ridge. Its good for my body and my soul. The views revive me and I love watching the birds. During the worst part of last week, I didn't go anywhere. I did feel like I was falling apart. Now, I feel like I've had a break from tx due to my halved dosage.
   And size has nothing to do with strength. Just have some little Thai lady give you a massage!

[orphanedhawk]

oops, the previous was for you.