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Hep C Low Platelets - Husband hopes to start tx again soon
hello, have been off line for a while but still on this roller coaster with my husband. He hopes to start tx again soon. 58 yr Male Hep C Geno Type 1, platelets have been down as low as 4 (had a couple of platelet transfusions at this point RFDS trip to the city we live in region WA) last tx Feb to April 08. Been off tx since then... platelets have been up & down like a yoyo ranging mid 20's upto mid 30's... he has Chirrosis also. Virus from blood transfusion almost 40 years ago. Tyring to get some positive feedback to help us along on the next tx rollercoaster so that I can be better support for him. Anyone got any useful advice?? We've been told about nitazoxanide anyone heard any good things about this? Will get platelet support during next tx, hopefully via drugs if not via transfusion we think.... next apt October.
Look 4ward to discussing with others...
KB
Look 4ward to discussing with others...
KB
all i know is teleprevar is meant to come out in 2011,i am in australia too,thank god for medicare.good luck with hubby,i know what its like to have a partner real sick from hep c,he stil is.i also hav it and lucky mine is ok at moment.
Thanks for your info, I've checked hubby's bloods fasting bloods done last in January, I assume it is the Glucose which was 5.1 (range 3.0-5.4) - the comment was diaberes mellitus unlikey.
Our councellor mentioned a drug called Telepraver... has anyone any knowledge of this? Usually used for 12 weeks leading up to treatment supposed to help suppress the virus so the Iterferon can work better on the liver I think...
Really apprecaite the feedback, hubby off for more bloods today so we will see what is happening with the platelets in the next few days. Hope the numbers are up significantly as no joy with the drug company... hoping he can treat with platelet transfusions maybe... find out more first week October.
KB
Our councellor mentioned a drug called Telepraver... has anyone any knowledge of this? Usually used for 12 weeks leading up to treatment supposed to help suppress the virus so the Iterferon can work better on the liver I think...
Really apprecaite the feedback, hubby off for more bloods today so we will see what is happening with the platelets in the next few days. Hope the numbers are up significantly as no joy with the drug company... hoping he can treat with platelet transfusions maybe... find out more first week October.
KB
Now that is good news about the new treatments to keep blood platelets up. Next time I get to treat I will do some research on the subject to show my Dr. Thanks for the question and the responses... Love this place...
"We've been told about nitazoxanide anyone heard any good things about this?"
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Cocksparrow got approval to use it. (He's also in Australia). We'd be happy to tell you how to get it approved.
Something else you should look into. Up to 70% of cirrhotics are insulin resistant and that lowers treatment success rate. Would you happen to know what his fasting blood sugar is?
Co
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Cocksparrow got approval to use it. (He's also in Australia). We'd be happy to tell you how to get it approved.
Something else you should look into. Up to 70% of cirrhotics are insulin resistant and that lowers treatment success rate. Would you happen to know what his fasting blood sugar is?
Co
Hello again, thks so much for your comments and feedback FIGuy, hoocbud2 & newleaf09...
the medical system is a little different in Australia and we are well behind the trials taking place in the US, and our system for drug approvals is a whole lot more regulated by govt, mind you they do provided a wonderful system for funding drugs once they are approved for use here PBS ...this link will give you more info on our system if you are interested to find out more... www.nps.org.au/.../how_the_system_makes_medicines_available2
... my husband was not able to go on the trail for eltrombopag here as he had been on peg interferon which excluded him, I was actually relieved about that, too risky for him to have a placebo at that point, in my opionion anyway. He's got a gr8 haematologist and a pretty good hepatoligist they are both now working together whcih is a gr8 achievement! the former is approaching the drug comapies to try to get him on this drug outside of the trials.. also approaching the hospital were he got the transfusion to see if they will fund it all... he's now the the head of dept at that hospital! (ironic really but it was well before they knew about hepC blood transmission and well b4 they began tsting our blood stocks)
... tx history - has been on tx 4 times had a lapsed response x 3 times stopped tx early x 2 times. His first 3 tx were only 6 months duration as was not allowed to tx longer at that time.. and last tx his platelets dropped to 4 which was a pretty scary experience for us both (thought I ws going to loose him... my absolute worst nightmare :(
Anyway we are hoping that he will be getting some good news in october when we go back to see both specialists, hubby wants to email them this week to encourage a tx start sooner rather than later, but all depends on the drug avails... we will even pay for it ourselves if necessary. He already has decompensated liver with ascites been on various fluid tabs but it never improves very much.. he has slowed down a lot in the last couple of years and it breaks my heart to see him going through this ... he is so keen to try something I just hope they don't dessert him and dash any hope of a tx to clear the HepC... far better to fight and clear the disease than to get to the transplant stage .. he is worried that if he doesn't try tx soon it will be too late and he will not get a transplant cause of his age (58 now).
really apprecaite everyone's comments... thanks again and good luck on yoru journey's toward clearing this virus forever :)
KB
the medical system is a little different in Australia and we are well behind the trials taking place in the US, and our system for drug approvals is a whole lot more regulated by govt, mind you they do provided a wonderful system for funding drugs once they are approved for use here PBS ...this link will give you more info on our system if you are interested to find out more... www.nps.org.au/.../how_the_system_makes_medicines_available2
... my husband was not able to go on the trail for eltrombopag here as he had been on peg interferon which excluded him, I was actually relieved about that, too risky for him to have a placebo at that point, in my opionion anyway. He's got a gr8 haematologist and a pretty good hepatoligist they are both now working together whcih is a gr8 achievement! the former is approaching the drug comapies to try to get him on this drug outside of the trials.. also approaching the hospital were he got the transfusion to see if they will fund it all... he's now the the head of dept at that hospital! (ironic really but it was well before they knew about hepC blood transmission and well b4 they began tsting our blood stocks)
... tx history - has been on tx 4 times had a lapsed response x 3 times stopped tx early x 2 times. His first 3 tx were only 6 months duration as was not allowed to tx longer at that time.. and last tx his platelets dropped to 4 which was a pretty scary experience for us both (thought I ws going to loose him... my absolute worst nightmare :(
Anyway we are hoping that he will be getting some good news in october when we go back to see both specialists, hubby wants to email them this week to encourage a tx start sooner rather than later, but all depends on the drug avails... we will even pay for it ourselves if necessary. He already has decompensated liver with ascites been on various fluid tabs but it never improves very much.. he has slowed down a lot in the last couple of years and it breaks my heart to see him going through this ... he is so keen to try something I just hope they don't dessert him and dash any hope of a tx to clear the HepC... far better to fight and clear the disease than to get to the transplant stage .. he is worried that if he doesn't try tx soon it will be too late and he will not get a transplant cause of his age (58 now).
really apprecaite everyone's comments... thanks again and good luck on yoru journey's toward clearing this virus forever :)
KB
Follow hoocbud's advice about the insurance coding for using eltrombopag. It is not yet labeled for keeping platelets up for HCV therapy, so insurance won't cover it yet for use with interferon. Your doctor can help you with supplying an alternate code. There are some studies using it with therapy, so it will be labeled for it, just has not been yet and may take a while longer to jump through the paperwork hoops.
Did your husband respond to therapy before and get taken off for side effects? If he was a poor responder the last time, and he can stay in good enough condition, he may want to wait a little longer to retry with the new protease inhibitor drugs that will come out, projected date 2011.
Did your husband respond to therapy before and get taken off for side effects? If he was a poor responder the last time, and he can stay in good enough condition, he may want to wait a little longer to retry with the new protease inhibitor drugs that will come out, projected date 2011.
To Ozzie
I am currently taking Promacta for my platelets I've gone down as low as 19. Started tx in the 30's. Researched the Promacta and suggested to my hematologist and I been on it every since. Platelets in the 80's !!!! Best they ever been. You and your doctor have to register with the drug maker. The medical condition your hematologist should use is ITT. To get insurance to approve. (Unless things have changed since I started on it.) There are clinical trials how going on showing good results. You could research them and present it to your doctor. That's what I did. Good Luck to you both.
Take care
Debi
I am currently taking Promacta for my platelets I've gone down as low as 19. Started tx in the 30's. Researched the Promacta and suggested to my hematologist and I been on it every since. Platelets in the 80's !!!! Best they ever been. You and your doctor have to register with the drug maker. The medical condition your hematologist should use is ITT. To get insurance to approve. (Unless things have changed since I started on it.) There are clinical trials how going on showing good results. You could research them and present it to your doctor. That's what I did. Good Luck to you both.
Take care
Debi
You might have a sit down with the tx doc and a hematologist (blood doc) to determine an approach for treatment. Before you do, do some research on 'Promacta' (aka eltrombopag) . It's a new drug developed to encourage the growth of platelets and might be helpful with the hcv treatment meds. At least a couple of people on this form use the stuff.
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