Hi, am in same boat as you, if you look down the board some you will see where I posted about transplant with Hep C, went to see transplant team yesterday where problem was I had never had PCR or genotype done so now I have to wait two more wks to see what I am, I have totally normal liver function, no elevated ezymes, and no cirrios, just slight inflammation said liver looks real good from biopsy, not on dialysis, was 2 mths 2 yrs ago which was mistake, I was dehydrated.They didn't take time to check. Now the creatinine is rising and they want me to go back on, I said no. My access recently clotted off after 2 yrs of not being used and as I have very bad veins they will most likely keep clotting. So I decided to try for transplant again. They turned me down once cause my Hep C was also discovered during pre-transplant testing, but now having experienced dialysis first hand would rather try to get new kidney. Some people do really well with dialysis I was just not one of them. My transplant Dr. said if the viral load comes back fairly low we will go ahead and do transplant as I have living related donor. If not we will do the interferon and see if I can clear or at least lower viral load to acceptable level for transplant. Then it's my choice if I want to do transplant with Hep C donor. But like someone posted they don't want to use Ribivarin, because of my kidneys. Good luck with whatever you decide, but I think transplant is definately the way to go, Hope we talk again Linda
I think you misunderstood what I said about ribavirin and patients with kidney disease.
It appears that macanhan's doctors ARE going to treat with ribavirin. I was just curious what formulation they were going to use to decide on dosage, since it probably will be lowered according to your kidney function.
If your doc will not use ribavirn, you might want to speak to another heptologist who will. Of course, someone with experience with hep c and kidney disease.
The reason the ribavirin is important is because it gives you much better odds of keeping the virus clear after you stop treatment. Once you find your genotype, have a heart to heart talk with your doc on your odds of clearing the virus with and without ribavirin.
Thanks, I will make sure I do that, all help is greatly appreciated. Thank You!!!!!!!!!!!
rearfang; you really need to come clean and tell the team you were on antibiotics, they need to take your fevers more seriously and prescribe medications as prophylaxis or just as a test to see if it is bacterial infection that has gone undetected by their tests. it seems like it was. you need to tell them.
your fever reminded me of Judi's(hepcgetlost) ordeal with spiking fevers of unknown origin, maybe she will come by and share her experience, I believe she also had to stop tx for a short period. Unfortunately after extending to 70 wks or so, she still relapsed. You might need to start all over, but mostly, you need a team that is more agressive with your tx and realize the importance of maintaining dosage, especially in the begining.
linth; I don't understand why they are placing so much importance on the lowering of VL as opposed to clearing the virus to allow the transplant. VL has not been demonstrated to correlate with severity of disease. If they think that lower VL means less HCV activity and thus less imflamation, there is no medical data to sustain that belief. They need to increase their knowledge of HCV.
GL to both
The most important thing is to clear the virus if we can, if not and lowering is the best we can do then that's what we have to go with since I am refusing dialysis, the rejection drugs accelerste the Hep C in soome people, sending them into acute liver disease, so the lower the VL, the better the chance of not making the Hep C go crazy, which makes sense to me. At any rate virus needs to be cleared. That's my goal.But time is of the essence here so just have to do what they say.
Very sorry to hear about your health problems.
Genotype 2 has a greater than 80% SVR rate and a shorter duration of treatment. About 70% of all hepatitis C cases in the US are the harder to treat genotype 1.
I wish you well
Your doc has very good credentials so take his advice with reservations. Meaning, do your homework and keep looking over his shoulder -- something I would say about any medical professional these days.
The fact that he will treat with ribavirin is a good sign as many docs have been reluctant to use ribavirn in patients with kidney disease. (The kidneys are where the riba is metabolized.) I'd therefore ask him how he plans to dose your ribavirin in that context, and how agressive he would be in treating anemia. The gold standard is Procrit, but not sure if they use it with kidney disease.
If you want to delve into this issue a little more, here's an article by our Swedish friends, Lindahl and Company, who have been leading the research in plasma riba levels.
Well, good luck, like everyone is telling you, you have an excellent chance of clearing the virus given your genotype.
First, sorry for jumping onto this thread mahancan, and I wish you the best. Second/third, this will be long and i'm skipping proofreading because it'll be long. I haven't been around in a week,so I hope I'm not bulldozing over anyone's news, good or bad.I will ytry to skim what i've missed when I'm done writing.. what a week its been. I won't be back to check this till tomorrow. (Background 45 yo f 1b, started tx 8 wks ago). As you might recall, I statred feeling lousy a few days after #7, when I'd been fine prior. Chalked ti up to a bad week of peg, waited a few days. Fever started out abot 100, crept up to 101,101.5 102, 102.5.Up and down, Up and down. Couldn't eat, couldn't move couldn't function. Gastr did a cbc, all looked good. They made me stop the tx till the fever came down (it was a full week since #7, the fever just kept climbing. Paranoia about stopping, feeling like death, day7 was sent for chest x-ray, blood cultures. waiting, sicker and sicker, to th er on day 9. they did another chest x ray, more blood cultures. By then, (2 days ago and 10 days since my last shot,) I was in a panic, thinking why the %!*# don't they do something before I 1: lose the 7 weeks I've invested or 2: DIE. Called a friend who's an er dr. in a nearby state, explained my situation, she called me in a script for doxycycline 9I know antibiotics can be liver unfriendly, but hoped she was making a good choice--she knows my medical sit.) I said screw the gastro, screw my liver I CAN"T TAKE THIS ANY MORE! Started taking them night before last, and temp has been mostly normal, only getting as high as 99.5 except one episode last night where it went back up to 100.6. Today it has stayed around 98-99.2. My appetite is back, I actually ran a couple hundred feet to escape the rain and I feel like I am alive. Now for the concerns: I can't be sure these antibiotics are the reason I'm doing better, but it sure seems coincidental. My gastro, pcp, er staff--NONE of them even suggested trying this route. I saw all yesterday. Thye said my blood cultures came back neg for an infection (Keep in mind, my wbc was a bit low for weeks, is now in the normal range--which means its up.) They want me to go for teasts foe rheumatoid arth. and lupus on Friday. I didn't even tell them about the antibiotics, so yesterday when they saw my temp was near normal, they chalked it up to a virus that was running its course. They said if the temp stays down, I can resume tx on Fri. Did missing this week screw me up for SVR? Has anyone had a similar experience? Is doxycycline okay? Is it me or are these docs idiots for not trying antibiotics just in case?Remember, I'd still have a 101.5-102.5 temp now if I only followed their orders. Those with autoimmune problems brought on by tx have any input? Maybe I do have something more? Help folks. I'm really needing some input. Miss you all.
Sorry you've been having problems with sx. That fever thing sounded like a real nightmare.
I don't know about dosage, but i took doxycycline several times, with several different doctors, pre-treatment. They all knew about my liver situation and cleared the drug. I can understand why you're keeping the doxy from your treating docs, but it's probably wise to fill them in so they will have the big picture.
As far as missing a week of treatment -- I'm assuming that you missed one shot and 7 days of riba? -- you will probably be OK using the 80/80 rule. That states that during the first 12 weeks you should take 80 per cent of your meds, 80 per cent of the time.
But having said that, if you want a decent chance of EVR you should really get back on the meds ASAP. I'd do everything possible to make that happen, including lining up a back-up doc in case your current team is not agressive enough. And unless it's critical that you take your peg on a certain day, I wouldn't wait till the next rotation but take a shot right away.
Another suggestion -- and only if you're feeling much better and with your docs approval -- consider upping your riba by maybe 200 mg and possibly do a double shot of Pegasys to help counterbalance the lost meds. Double Pegasys and a little extra riba are commonly used during the first 12 weeks of treatment so this is not that extreme. The danger, however, is that if it's the peg or riba that caused the sx (hopefully it was something else) then extra meds could force you off treatment again. So this isn't really a suggestion, just something to mull over with your docs.
Thinking over the last paragraph of my last post, given your condition, probably not a good idea to up the meds now. More meds generally mean more sx, and you probably have all you can handle now. Good luck. Hang in there. I had a really rough week 2-3 where I ended up in the ER and had to go off riba for a few days. These things can happen and hopefully you'll be back to your old self real soon.
mahancan and linda: so sorry to hear of your health challenges. all I can do is join everyone else in wishing you well and tell you that you're lucky you're a g2--much easier to treat than g1 or g4. As to the kidney complications, I just don't know enough about that to comment. Others (jmjm530) who are more knowledgable have already posted above, so I would go with that. Good luck to you, and keep us posted.
Lauren: I can only echo what jm posted to you. I went through a similar experience on 72 (of which I only did 71) weeks of tx only it happened 4 times and lasted longer and my fevers spiked to 103 and 104 during 2 of the episodes. I ended up having to be hospitalized those times because of accompanying sympoms (vomiting, headaches, dizziness, etc.) Like you I had a gazillion tests, xrays, CT scans, etc, all of which came back negative. The worst episode was last October during week 40-something when I was hospitalized 11 days in isolation during which tx was stopped. After I got out and resumed tx at full dosage, I continued to have low-grade fevers on and off for about 2 months...I recorded them and ignored it. The next-to the worst episode happened at week 71. Again, same symptoms, had to be hospitalized, and was miserable. Got through it in fewer days and didn't need procrit or neupogen that time because my white and red counts weren't perilously low as they had been during the really bad episode. In both cases, they never figured out what the infection was. I did get plenty of antibiotics both times. No harm done as far as I know. That's about all I can contribute...I also followed the 80-80 rule jm referred to. I believe my relapse had nothing to do with the above, but rather with the persistence of whatever strain of virus I have (I'm a 57yo f, g4 and have had this for 36 years!) Anyway, good luck, and don't give up yet. Judi
cuteus, I'm back in NM and in much better spirits after a visit to NIH. I'll tell you what's up in another thread or privately when I finish unpacking.
Everyone take care. Judi :-)
I can't wait!
I have been thinking about calling you for the last week or so, but was not sure where you were. You sound much better, I am glad! Don't want to loose touch, but sometimes time slips by and it feels like it was yesterday when we talked and it has been months in reality.
I'll check the mail, among the 200+ unread messages in my inbox, it should be on top, ;-}
Dr. John Hutchinson among others adhere to the 80/80/80 rule. Do a search under "80/80/80 and hepatitis c" and you'll find many studies including http://janis7hepc.com/hepatitis_c_research17.htm#80%2080%20rule
Of course, it would be better if lauren took 100% of her meds, but based on current thought there's no reason for anything but optimism as long as she can get right back on treatment.
Thanks for asking. Feeling "Lousy" of course, LOL, but at least I'm still clear at week 18.
I can't argue against extended treatment, cause Im doing 72 weeks myself, but I don't know Lauren's stats -- I'm stage 3/4. I think if she clears at week 12, then the week off treatment probably didn't matter. But like you say, this is no science and there's rooms for a lot of opinions.
I also think I misinterpreted what you orignally said, when you suggested she "start treatment over again." I thought you wanted her to stop and then start again. Didn't realize you meant extended treatment which has merit.
So how are you doing these days?
For once I'm at a loss for words. So very, very sorry you've gone through this and let's hope the episode doesn't repeat itself. Personally I'm big on second and third opinions, and if there's no one locally whose hypothesis is worth hearing, perhaps an email to Dr. Cecil would be in order. I don't know how the man does it, but he answers his mail quickly and puts considerable thought into his response.
I really agree strongly with Rev that you need to start over at week 1. (Same thing as adding 7 weeks to your total treatment length.) An interruption like this so early in treatment is pretty dicey, I would think. But more importantly, it would be so helpful to hear an explanation from a good hepatologist who has tons of experience in treating with these drugs. Also, is there any way you can do a PCR right now? Could be very helpful data.
Sorry u didn't make SVR and hear ya on the BVR.
How many weeks did you treat for? Are you planning on re-treating soon or waiting for some better meds?
Lauren,,,Sorry to hear that the meds have gained up on you! I never ran fever during my tx but in beginning so I'm sure you are feeling rotten and hope you see better days soon! Everyone here has such good advice that I can only echo what they say or some are thinking. I hate to say it because I know you don't want to hear it but,,,,You are back at square 1. On the positive side,,,,you are not too far into the game that you wasted lots of time. I know 8 weeks seems like alot to you at this point but I don't think you want to do 10 more months and then relapse to then maybe,,,,go for the Big 72! I have read alot about the 80% of the meds during the duration should get it but,,,,,I think this would apply more in general to the Riba,,,Lost of Mind,,,,and forgetting here and there through the year duration. Maybe taking the morning pills but forgetting evening. For you to miss 1 whole week in a row so early in your tx,,,,Spells out Relapse.
Thanks all for responding. Today I felt 100% better, so I truly feel that the antibiotics were the reason. I actually did not miss a full week of riba (whenever my fever was low at dosage time, I took it anyway. So I missed 4-5 doses in the course of the week.) I fear that I still may be back at square one anyway. Tomorrow I am having a pcr done, as well as resuming my peg-- already resumed the riba once the fever kicked. I am going to fess up to my regular doc on Tues. about the antibiotics, just so that NEXT time, if God forbid there is a next time, they will give me what I need!! (The guy who was taking care of me during this nightmare was filling in while my doc was on vacation.) I will let you all know my results. How long to get back the pcr? BTW-- I will only get on sporadically for the next couple of weeks, but I will be thinking of you all, my wonderful friends.
P.S. Scruffy, Rev, Califia, et al I do not remember ever laughing so hard as I did last night over that thread from the poor "unprotected anal sex" thread. The two different "story lines" it generated made it even funnier!!
I want to than everyone for their input. This forum is very refreshing and I wish I had one for kidney problems when that first started. My Dr. does have me on a low dose of riba - 100 I think, due to my kidneys. He said there was a study done in Colorado and he is following their protocol. I actuallly have had a hard time affording the meds. I am getting on a medicare reimbersment program to help with costs. How do you guys pay for it for 70+ weeks?? Wow. So I haven't started the meds yet. Will be soon, within the week probably. I have just gotten my drug card in the mail. I spent almost two months jsut figuring out this stuff. Started in April, and in May called on the medicare, they get it started June 2 and I ahve to wait until July 1 to be covered. And any meds I were to pay for before that I would not have been able to have it go toward my deductible. I still don't know how I am going to pay for it.