I am new here!!! I just found this forum. I was telling my husband how great it is. We found out two years ago he has hep c and he waited until 5 weeks ago to start the treatment. Things aren't going well. His platelet count dropped to 100. If he can't tolerate the riboviron/iterferon combo, they will pull him off the treatment.
Has anyone heard a the new gene therapy for hep c that isn't approved yet?
My husband also has HCV and this forum has been my world now for about 4 months. I can't help you on your question about gene therapy but I can provide some insight on Platelets.
Dr. Dieterich is Vice Chair and Chief Medical Officer Department of Medicine at The Mount Sinai Medical Center and an attending physician at New York University Tisch Hospital. He states the following:
I would not reduce dose personally if there were no sign of bleeding. There is a cytokine that can be used to raise platelet counts called Neumega. It is IL-11 and does work reasonably well. You should ask your MD about it. The lower the platelets the more your husband needs the interferon!
My husband is on both Neupogen and Procit, he has not had an easy time with the med's. We (I) am very assertive in doing research and making sure that the Dr's listen to me. Everyday I hold my breath and hope he won't develop some other problem that could potentially take him off his meds. It's one day at a time...
I guess the problem with the platelet booster we are facing is the insurance company. The drug they want him to take has not been fda approved for hcv patients. Funny though, they use the same drug for chemo patients for the exact same thing. Go figure.
I hope things go well for you and your husband. It is very difficult to seem them going through something this tough.
All we can do is stand by them and make sure they know we are there for them.
A platelet count of 100 is not bad at all. Most doctors won't cut dosage until it falls below 50. My daughter's count actually went as low as 28 before they considered cutting dosage or stopping treatment. I would definitely keep an eye on the numbers, but I don't think any insurance company will approve a booster for a number as high as 100 while on treatment.
Hope this helps,
Good luck to you and have a wonderful holiday..
Neumega is FDA approved since 11-1997. It is at the Dr's discretion which can be very frustrating. It took us 4 different Doctors before we found one that listens to us and doesn't automatically reduce meds at the first sign of trouble. Nuemega has a website, click <A href="http://nuemega.com">Here</A>.
Keep us posted,
Go get 'em gal! Stand by your man. It is the only way to get through, with the sides so awful and the success ratio at about 50%! My hubby is 1a with a high viral load, but no cirr and only monderate damage so far. He did 24 weeks, though he didn't clear at 12 weeks. His load went down a LOT, but not 2 logs (2 decimal points), so he gave it a try continuing. Now he is leaning toward trying the other brand, Pegasus. There is a study opening in our area for PegIntron non responders to see if they would do better on Pegasus and the Roche brand of Ribavarin. They are gonna do 72 weeks I think. Oh god. The sides were terrible for mine. Though I see on this site not everyone has them. He was sure since the sides were bad that the little beasties were getting zapped. Not so unfortunately. But he says he is going to be first in line for each new thing until this is GONE. The hardest part for me was the emotional sides. One post discussed Jekel/Hyde changes today. I have seen that...everything going alone, and then whoop, a new person enters the room. Mr. Crabby who is short with everyone and just needs to be alone. We are seeing less of that as it as been 3 weeks off tx now. I wouldn't be looking forward to that again, but maybe we would know ahead of time better and get better ad's before it started.
My husbands platelet count seems to be sitting around 33 or 34 and while we have cut his doseage of interferon by half, nobody has suggested he go off treatment. This is not the perfect solution, but we keep plugging along. Our doc's don't seem to think there is ANYTHING out there that a person can take to boost platelet counts, I'm going to keep investigating.
There is a site on yahoo groups happyheppers, the gal that runs it goes by "alleypat", and she always posts recent articles she finds relating to Hep C. One said that the athritic/antinflammatory "Vioxx" was found to help prevent platelet count reduction during treatment with Pegasys/riba or pegintron/riba.
Christie, thank you for the encouraging insurance news. I will make them KNOW me. His doc said he will call the insurance co. himself and request that he be treated the same as the chemo patients. I will let you know the outcome.
Couch Potato, I started worrying about his platelets when they told us his count was down to 100 (this was two weeks ago). I can't imagine them being lower. He is really pale and gets dizzy when trying to do anything strenuous. I hope your hubby is doing better than mine.
BobK, there is a treatment called Neumega that helps with platelet loss. Better Angels posted a web site for this treatment in an earlier posting.
What geno type is he? My hubby is a 1. I know now, this is not good news. Guess what, it will not hamper my cheerleading ability for him. We've been married for 14.5 years. We have an 8 year old daughter (on December 5th she will be 8). Until now, insurance has done a world of good. The rebetol is about $850.00 a month. copay $30.00 I am not sure what the future brings, but, if they don't pay for this platelet boosting miracle drug, they will bear the rath of a texas red head!!!!!
god with all!!!
p.s. sorry for the outburst. Need some sort of release!
It makes me crazy when med insurance denies coverage for meds that wil help him fight the disease, that are prescribed by a physician. Our tactic has been to forge ahead and get whatever meds are prescribed and then work it out later. Most of the drug companies have programs to help patients who are uninsured or underinsured. Ours covers no injectibles, but we got the PegIntron, Rebetol, and Neupogen through the manufacturers. It was a great help. Our community was willing to pitch in for the Procrit. Our therory of "just doing it" has helped my hubby so much. He knows we're gonna get through this! At 24 weeks he has stopped treatment though. He didn't clear. We are hoping to switch to Pegasus and try again in the spring...when sides are settled down. And then we'll do whatever to fight again!
Don't take an automatic decline from the insurance company on face value. They HOPE you will go away quietly. Usually, if you appeal (include a letter from the doctor or medical references if you can get 'em) they buckle.
If they deny, appeal! If they deny again, appeal again! It helps get your frustrations out, if nothing else, knowing you are bothering them.
I had to go so far as to get a letter from an attorney once (appealing an unrelated issue)--stating how if my health suffered from their denying payment for care, I would be forced to look into seeking financial recompense, etc etc. They paid so fast after that my head spun.
There is a very good reason why you and others have not heard of patients being treated with neumega for reduced platlet levels during treatment. Dangerous side effects (from my reading)of neumega include plasma volume expansion which would significantly reduce hemoglobin and WBC counts. The edema associated with using this drug could be very dangerous for someone with advanced liver disease or hypertension. Neumega also has been shown to increase rates of fibrosis (particularly pulminary)in animal models. There is very little data for long-term use in humans.
This drug is by no means a magic bullet to combat low platelets and I would be very suprised if you could find a doctor willing to go out on a limb and prescribe this drug.
I would, on the other hand, be very interested in what your doctors say about the potential use of this drug and if they would be willing to prescribe.
Recombinant human interleukin-11 improves thrombocytopenia in patients with cirrhosis.
Ghalib R, Levine C, Hassan M, McClelland T, Goss J, Stribling R, Seu P, Patt YZ.
Transplant Office at Methodist Hospital of Dallas, Houston, USA. ***@****
To elucidate the hematopoietic activity of recombinant human interleukin-11 (rhIL-11, [Neumega, Cambridge, MA]) in patients with cirrhosis and thrombocytopenia, we administered rhIL-11 at 50 microg/kg/d subcutaneously to 10 patients for 10 days with a 30-day follow-up period. All treated patients (n = 9) experienced a gradual, yet significant increase in their platelet count above the baseline value (P < or =.01) reaching the peak value (median, 93,000/microL; range, 60,000-206,000/microL) at a median of 13 days (range, 6-23 days). Eight patients (89%) had a significant increase of > or =50% over the baseline value (P <.05). Moreover, further increases to > or =60,000/microL, > or =80,000/microL, and > or =100,000/microL were observed in 100%, 78%, and 33% of the patients, respectively. A subsequent decline in platelet count was observed at a median of 19 days (range, 7-26 days) after the occurrence of peak concentration. A significant increase in neutrophil count was also demonstrated starting on the third day of treatment (P < or =.01). Concurrent with an increase in the serum level of fibrinogen, transaminase levels declined significantly during treatment period, while bilirubin levels continued to drop for up to 20 days after the initiation of treatment (P <.05). The most frequent effects were due to plasma volume expansion, including conjunctival redness and edema. In conclusion, rhIL-11 can improve platelet counts in patients with early cirrhosis and these patients could benefit from rhIL-11 treatment. However, given the high frequency of regimen-related toxicity, the use of rhIL-11 in patients with cirrhosis should be administered with caution.
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