Thanks.....I do remember though reading a study that for RVR's/geno 2 they reduced to 16 weeks with very little difference in SVR results. An no.....not that I am wanting to do that even though it sounds good. I want to give myself every chance possible to maintain the undetectable. I actually caress my syringe before injecting because it is my ally and my new best friend. Just kidding, but I do have a new respect for the stuff!
As for lowering the Riba, I agree it would be OK after 12 weeks to drop from 1000 to 800 since that would be an acceptable 20%. So far I have been 100% complient.
Thanks again for your insight and willingness to help others. I hope people thank you enough for what you do. They say what goes around comes around....in your case I hope that is true.
Happy New Year to you!
Pam
Pam,
Checking viral load every 4 weeks is good. Actually, I'm surprised they don't check platelets whenever they do a CBC, mine were -- but in any event, yes, platelets tend to drop on treatment which is normal. Your doctor is just making sure they don't drop too much -- so checking them from time to time is standard procedure.
BTW wasn't suggesting that you shorten treatment -- or not shorten treatment -- just mentioned it in the context of the studies where riba is reduced after UND. The point was that these were probably 24 week studies and that sometimes one has to shorten treatment because of side effects.
As to the odds of SVR, in general, it's 80% for geno 2's, but since you're RVR, I imagine your odds to be better than 80%.
-- Jim
Forgot to ask you again....what is the revelence of checking platelets? He wanted them checked before tx and something made him want to order it again. How are they affected by the medicine? Is that what he is worried about?
Pam
Thank you again. You should charge for your services. This forum is lucky to have people like you.
My doc is out of town until the 2nd and my appt. is on the 3rd. Best I can do is leave a msg with the service.
I have read about the shortened lenght of tx on RVR geno 2's, but there seems to be some controversy over this. If I can tolerate things I will do the whole 24. I do not want to ever do this again if I can help it. But until the fat lady sings (6 months post tx) I will always worry about breakthru/relapse. Can that still happen after a 4wk non-detect? I suspect it can.
Which brings me to my next question.......how often do you recommend I have the PCR done? doc is looking at every 4 weeks I believe. That should be good huh? If I stay that way for 24 weeks I suspect my odds are pretty good? What if the virus shows back up again? Once it is gone, is it not really gone?
Jim, I know that I am one of the lucky ones so far, but this disease makes me so angry. I don't know how some of you have done what you have done. It changes you. Some things for the better. You really appreciate your health. My body has never let me down so far (other than not achieving spontaneous resolution) and it makes me mad that an outisde invader can come in and you have no control over it. I am pretty sure I got this nasty thing from a dentist office.
Well, if I am a better person for it and I can help someone like you have then that makes it worth it.
By the way, my name is Pam...thanks for your help Jim.
Pam
Again, there might be two arguments -- both for and against riba-dose reduction, just wanted to give you a heads up, and what I personally might do. You might indeed be fine with a dose reduction, given your RVR.
That said, if you think Procrit (epo) is an alternative should your hgb keep dropping, then I'm not sure if waiting until 1/3 is in your best interest, especially if you've had a consistent hemoglobin decline. I would try and get a face-to-face earlier, or at least speak to him on the phone with your concerns -- and again, Procrit can take 2-4 weeks to kick in, which you will remind him and at the same time you can discuss what he has up his sleeve should your hgb keep falling below 9.5 while the Procrit still hasn't kicked in. But, if he's going to outsource the whole issue to a hematologist, then maybe that conversation needs to be also with the hematologist, and ASAP.
What I meant about getting the "insurance work started" is that depending on your policy, etc, there might be as much as a week's gap between when the doc writes the Procrit rx and when you actually get the Procrit physically in your hands. This is something you can independently check out by calling your insurance company and finding out what exactly their policy is. Also, since you may be seeing a hematologist, it's possible you will get Procrit injections in the office. Again, something to check out in advance -- both with the hematologist and the insurance company to make sure if your hematologist has the stuff on hand and if your insurance covers injections at the office, as opposed to if you give them yourself.
Assuming, your hematologist does not give the injections in the office, and/or your insurance company won't cover in-office injections -- then one strategy is to have your doctor (or hemo) write the Procrit (epo) rx now, which will start the insurance process as soon as you present the rx to your pharmacist. If you don't need it, you can always not pick it up, or just hold it, but at least it will be on hand if needed as opposed to having to wait a week.
-- Jim
Thanks for your answer....I suspected you would say to keep up the dosage. I do not want to screw this up of course.
I feel pretty good....run out of gas though early in the evening. Not my normal spunky self, I really have been lucky though with little sides. Sometime the bones ache a little like I walked for miles but Tylenol does the trick. Mild headache once in a while but that is about it. Well....have been a bit cranky at times and the appetite is small.
I won't see the doc until 1/3 and he says if he feels helper drugs are in order he will refer me to a hemo and who knows when I can get in. My doc is a Gastro, but is there any reason he can't order the helper drugs? I can see using a hemo if things can't be controlled with the drugs. He did tell me though that if it got down to 9.5 he would worry. He says some people can tolerate it OK. He did tell me to stay off of my elliptical and my outdoors bike. Said I might pass out....OH Joy! Luckily the riba is doing the job of the exercise for I have lost about a pound a week so far. Food tastes yucky to me now.
I don't have my pre-tx results with me, but I want to say it was around 14????
When you say to have the insurance work started...what do you mean? Can I get it done before he (or the specialist) orders the script?
Thanks Jim, you are great!
Just so you should know, I believe (check this out independently) that there was recent study suggesting full-dose ribavirin may not be as important as previously thought in geno 2's, once they are UND. Your doctor may use this as a basis for reducing the riba, or perhaps he's one of those doctors that doesn't believe in using Procrit. Still, previous studies all stress the importance of full-dose meds, especially during the first 12 weeks. Just wanted to give you a heads up. Personally, in spite of the study, I'd probably push for Procrit to stay on full-dose riba for at least the first 12 weeks, especially if I had significant liver damage. Also, those studies may have been 24 week studies, and the possibility always exists that given your RVR, you might either opt for the shorter course (12 weeks) either voluntarily or involuntarily, should side effects cause early termination. So, IMO, not a clear cut call in your case for riba dose reduction in spite of RVR. Just wanted to give you a heads up on what the doc might end up suggesting.
-- Jim
First, congratulations on the RVR!
I don't see any concern re your bloodwork other than your hemoglobin and your instincts seem to be good here. Not sure what your pre-tx hemoglobin is, or how you feel, but yes, you do want to protect that RVR, and staying on full-dose ribavirin is therefore very important. Don't know your other factors, but yes, in general now would be the right time to discuss Procrit (epo) with your doctor. I would not wait another week. Procrit takes 2-4 weeks to kick in, plus it may take some time to get approval from the insurance company. Minimally, have the insurance paperwork started just in case.
-- Jim