I sincerely hope you can see your way through this to a much better outcome...what was your last biopsy grade? if you don't mind me asking?
Last biopsy was 2003 and was 3 of 6 on the Ishak.
Doc won't biopsy me again.Fibroscan says 10.5.
I am probably borderline cirrhotic,well compensated at present.
I was wondering about your comment "My doctor (top man in the Hep C world) says that the riba build up in my system is so prolific that the low dose could be perfectly efficacious".
How did he come to that conclusion? Did he explain in any more detail? I've been sort of wondering about this myself lately. I seem to be pretty sensitive to riba, at 1200mg I feel like I'm going to crawl right out of my skin. I almost can't take it (and I'm not overly anemic either). Recently, I cut back to 600mg for a few days and started feeling SO much better, MUCH less itching and flaking. Now I'm up to 800mg and will eventually go to 1000mg, and maybe later back to 1200mg if I dare. I've been wondering if each person has a certain "personal threshold" for riba which actually may still be "perfectly efficacious" at doses under the normally considered optimum weight based dose (up to 1200mg). Of course I have no proof of that, but I do know that my body strongly reacts with pretty extreme discomfort at 1200mg of riba (which is what my weight warrants). I wonder if that discomfort level indicates that I'm over my personal toxicity tolerance, and if that might also translate into an indication of being equally toxic to the virus?
If you are not suffering with anemia then stick to the max dose-tests consistently show higher riba,higher SVR.
He did not elaborate on the point other than to say that as my hgb was stable for the first two weeks and then collapsed during the subsequent two that it had taken four weeks for the riba to build up and that there was a good chance we could maintain the level with low dosing as it stayed so long in the system.
Inconclusive I know,but you can never really get into fine detail during a 20-30 min consultation.
i would be interested in the history of your renal problems that lead to the renal biopsy.
History, bloodwork, urine analyses, clinical symptoms, radiology findings,cryo or other immune complexes found?
How did they arrive at the temporary diagnosis "nephritis". How was "kidney dysfunction" defined.
When will you get the results of the renal biopsy?
For example urea 10.1,creatinine 119. as of 18th September.
I have glimpsed the biopsy report on the screen in the consulting room but dont yet have hard copy.Noted reference to necrosis.
Concerns that if interferon induced future possibility of transplantation (liver) would be obviated by renal inability to secrete immuno-suppressant drugs.
On a more optimistic note I seem to infer that urea and creatinine more normal when on combo than off.
I will have copy of biopsy report later this month after I meet with nephrologist.Your further observations welcome.
Urea mMo1/L ref range 3.0-6.5 24th August 2005 6.5 28th July 2005 5.2 7th July 2005 7.4 (H).On combo during this period.
0ff combo 5th July 2006 12.4 27th April 9.0 13 April 7.8.Treatment ceased March 2006 so rising trend as I relapsed.
Creatinine uM01/L ref range60/120 normal except 180 July 2006 111 August 2006 119 Sept,so 'high normal' off combo with blip in July.
I started procrit on day one based on previous experience.Baseline hgb 14.8,after two weeks 13.5,after four weeks 9.5!
Procrit doesn't really work for me even when taking max rec. dose-never has!
Also supplemented with iron B12 and folic acid.
I seem to recall that at least some of your Swedes had to be transfused.
Yes the reduced riba is purely cos of the anemia.
If as I expect I am und at 12 weeks I can always slam the riba down for a few weeks after the hgb has recovered.
You are lucky to be out of all this ****-good for you!
I think two of the ten tranfused but both continued on and SVRd. The whole HPLC testing approached seemed very elegant to me compared to dosing based solely on body weight -- however never really seemed to catch on here. My guess is that that the researchers here were just more interested/too busy with the newer drugs like VX-950 as opposed to maximizing tx response by truly maximizing riba absorption -- a drug many would like to get rid of anyway. I mean what doctor wants to deal with the side effects of high dose riba every office visit, or what patient for that
matter:) Yeah, I'm lucky to be "out of this ****" and thanks for reminding me.
This ties in with a theory I've had for a while that people who have Hb problems seem to achieve SVR at a higher rate.I've of course got no actual evidence for this other than reading through the various forums.It's easier to see in people who don't use rescue drugs obviously.From the Swedish study comments I may not be alone in thinking this,I've always wondered why a bigger study using those methods haven't been tried.Nice work with your personal emulation I guess you concluded a slight cut back in Riba was called for. :))
Did you cross over the creatinine and urea values?
Can you give the units (mg/dL? or mMol/L?
Normal range for serum creatinine is .5 to 1.4 mg/dL, for BUN ( Blood Urea Nitrogen) it is up to 26 mg/dL.
Your lower riba dosing may have to with your kidney function. In fact, in Sweeden, a group of researchers have developed a pharmokanetic (sp)? formula for riba dosing based primarily on kidney function as opposed to the weight-based dosing used here.
This forumla was in part developed by testing serum riba levels with high performance liquid chromatography (HPLC), a test that unfortunatly is not available in this country last time I checked, except in some research institutions. It was this test that the riba dosing was based on in that famous High Dose Riba Study where nine out of ten geno 1's (there were only ten in the study) achieved SVR.
Without HPLC testing, some might argue that we're in the dark regarding riba dosing -- especially for someone with an impaired liver as you may have. The Sweeds offer a second barometer -- crude by some of their off the record words -- which is dosing based on the level of anemia. In other words, the more anemic you become, the more riba is being circulated in your serum, etc.
You mentioned that you had quite a hemoglobin drop as well as some possible kidney issues, so perhaps that is why your doc has lowered your dose.
That said, are you on Procrit? I would think that would be a first step unless contraindicated because of your kidneys. Everyone in the Sweedish study was both on Procrit and Iron supplementation, but again, their dosing was quite high -- higher than any standards used in this country. I was actually trying to emulate the Sweedish study when I ended up in the ER at week 2-3. My approach needed a little tweaking :)
All the best,
you probably have your serum creatinine values in umols. The 50-120umols are "normal range". So 117 would still be in that "normal range", but creatinine is not a very good measure of remaining glomerular filtration rate/ functional nephrons. Are you in Canada? They use these units, and Europe.
I assume from your response that there are no other renal diagnostic parameters available. Waiting for your biopsy results when you have it.
Kalio1, here's a comment on the study: http://www.hivandhepatitis.com/hep_c/news/2005/021105_a.html
the actual study is floating about if you search long enough.
I searched PubMed for Lindhal and didn't get any results but I now know more about Aldehyde dehydrogenase of the Mongolian gerbil, Meriones unguiculatus than any sentient human really ought to know, Arf!
If you google "ribavirin Lindahl" you will get more Lindahl than your bargained for :)
Here is their now famous 90% SVR pilot study: http://tinyurl.com/vase5
Don't have the links handy but a couple of other titles to search for:
1) "Evidence that plasma concentration rather than dose per kilogram body weight predicts ribavirin-induced anemia"
2) "Dosage of Ribavirin in Patients with Hepatitis C Should be based on Renal Function: A Population Pharmacokinetic Study"
Then there is the study I can't find online that talks about serum riba levels correlating to anemia. I also believe one of their earlier studies talks about riba dosing in kidney impaired patients.
Thanks to you both for posting those links! Much appreciated by my tx addled brain.
I am sorry to hear you are dealing with kidney issues. Geez, can't anything just be easy?? I hope it can be resolved and soon. You have had so many challenges. Please keep us posted on what you find out. Hang in there.
I too have some of those same suspicions, that those who have to deal with anemia that requires Procrit seem to SVR more frequently. This is only from my observations here, but since my Hgb has never fallen below 10 and in fact this week is up to 12 makes me nervous. I hope it isn't a sign I will relapse again! Do you happen to have that study handy, the Swedish one?
If you go to "PubMed" or similar and search under "Lindhal" you will come up with a bunch of interesting studies in this vein. One of her earlier studies had to do with the relationship between anemia and serum riba levels. I do not believe it is available online and I had to hunt it down "old school" at a medical library.
Yeah, it was quite a trip for me. The famous 90% Lindahl study came out a week after I started treating and for the next three days I got hold of everything that group wrote and switched doctors to someone who would try something more agressive. The article was so new that I actually read it before the doc.
Problem was I upped my riba from 1200mg/day to 2000mg/day over a five day period, when I should have done it more gradually -- say over a six *week* period. I was under the erroneous impression that if I felt OK at 1400mg/day for a few days then it was OK to go to 1600mg, etc, etc. Of course, later found out that riba builds slowly in the system with around a 2-3 week lag between increased riba dosage and a decrease in hgb. I was in the process of researching how best to send my blood to Sweeden for HPLC testing when WHAM I was in the ER :) Needless to say, my enthusiasm for that protocol waned and I pretty much just tried to stay in the game (at 1200 mg/day) for the duration.
Knowing what I do now, I could probably design a regimen for myself to maximize riba absorption without ending up in the hospital but fortunatly that's purely academic. Riba is stong and potentially dangerous stuff and one should only "monkey" around with it under the supervision of a doctor who understands the consequences and is willing to intervene appropriately. In other words, do what I say, not what I did. LOL.
Just to let you know that the riba really affects everyone differently. I am post transplant so that might make a difference but I started on only 200 riba a day, progressed to 400/day. Never went to a higher dose in 70 weeks. Late UND but I did get there. Also had HBG around 9 the entire tx on procrit once a week. Had one drop to H&H 6/19 and had to be transfused. That stuff is potent. Please don't adjust it without someone knowing is my advise
Thanks the addition of Ribavirin found the right studies and I've now got a interest in Mongolian Gerbils :)) .
this means you should drink extra water just to be good to your kidneys.
i have noticed that when i drink more water and eat more fruits, i feel less tired from the tx that day.
my dad, a homeopath, is also a chronic kidney disease patient. he had stones and blood in his kidneys 20 years ago.
he has dissolved his stones with homeopathy, and a berberis preparation taken daily keeps him fit.
You seem to be in a real predicament with the kidney problems. I don't know much about this but Linda - a forum member awaiting a kidney transplant, could not take any riba and did clear the virus on interferon alone. She is currently waiting for the transplant and (so far) the virus has not returned.
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