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Medical Forum / Diseases and Disorders / Hepatitis / March 2005Need Advice before going over the edge
Hello group...I have been lurking around here for a couple of months now. I started treatment 9 weeks ago (peg-interferon and ribaviran 800mg. a day)...first labs after a month were good. Doc said RBC count was lower than before treatment but still okay...other than that he said liver function looks better (this was great news to me).....I just got done with doing labs at the 2 month point and the Doc called with results and said stop ribaviran for 3 days then start again with 1capsule 2x's a day...He told me my RBC count dropped into the anemic area (believe me I coulda told him something wa definately wrong but I was trying to tough it out)....in the interim he was going to call the pharmacy and put in a script for something to raise the RBC's back up...this stuff is also an injection...I checked out the internet and this stuff is epogen or procrit or something like that and is commonly given to people with low RBC's who are on chemo for cancer...so other than my head being all screwed up right now I am writing to ask if anyone else has experienced this and how it worked out...I've heard if there are problems with treatment it probabaly ain't gonna work...I'm pretty devastated right now because we all know how important it is to all of us to get this f.cking money off our backs...by the way...my email name is about a machine I run at work....not what I do at work...get your head outta the gutter...lol On Fri, 4 Mar 2005 01:47:19 -0800, stripper1@webtv.net, in message ID <12653-42282EA7-356@storefull-3254.bay.webtv.net>, in the newsgroup alt.support.hepatitis-c wrote: >I just got >done with doing labs at the 2 month point and the Doc called with [quoted text clipped - 6 lines] >this stuff is epogen or procrit or something like that and is commonly >given to people with low RBC's who are on chemo for cancer It's probably procrit. >...so other >than my head being all screwed up right now I am writing to ask if [quoted text clipped - 4 lines] >email name is about a machine I run at work....not what I do at >work...get your head outta the gutter...lol Procrit (and neupogen) are not available for hep-c tx in my country (UK) but I understand from people in the USA that it often works but it can take a little while to become effective. It sounds like your doctor is really on the ball by stopping/reducing your ribavirin temporarily. This would reduce the chance of your RBC dropping to a level where you would need to stop tx totally. Procrit works for many people. I hope it works for you too. Has your doctor requested more frequent blood tests than the usual 4-weekly? If not, then he probably will. If the ribavirin is only stopped/reduced for a short period, then it's unlikely to make a difference to the outcome of your tx. I have known someone to do half their tx without *any* ribavirin and it still worked for them - though they were quite lucky IMO. Best of luck.  SignaturePaul Use the reply by email facility in your newsreader to send email > If the ribavirin is only stopped/reduced for a short period, then it's > unlikely to make a difference to the outcome of your tx. Care should be taken when considering this statement. Signature"Whale Oil Beef Hooked." "Lu Tze." http://boinc.mundayweb.com/seti2/stats.php?userID=1262 On Fri, 4 Mar 2005 16:20:26 +0000 (UTC), Lu Tze <Lztue@ankhmorpok.com>, in message ID <d0a1sa$oo8$1@nwrdmz03.dmz.ncs.ea.ibs-infra.bt.com>, in the newsgroup alt.support.hepatitis-c wrote: >> If the ribavirin is only stopped/reduced for a short period, then it's >> unlikely to make a difference to the outcome of your tx. > >Care should be taken when considering this statement. Hi Lu Tze. Yes I remember tx didn't work for you and your riba was stopped for quite a while. I don't recall how long your riba was stopped for but I think it was more than a few days. I don't know if you saw the post I was responding to but the poster was writing about stopping the riba for just 3 days with a reduced dose for a (hopefully) short period afterwards. In any case, the alternative could be a total stopping of tx so I guess the poster has little choice. Hey Lu. How are you managing on tx this time? Are you able to stay on the full dose so far? Are your side effects more manageable this time around? Good to hear from you again. SignaturePaul Use the reply by email facility in your newsreader to send email > On Fri, 4 Mar 2005 16:20:26 +0000 (UTC), Lu Tze > <Lztue@ankhmorpok.com>, in message ID [quoted text clipped - 18 lines] > time around? > Good to hear from you again. Unfortunately, I as yet, have nothing positive of note to contribute to the group. I am now on week thirteen of at least 52 weeks treatment, yes even with genotype 3. I am maintaining a dose of 800mg of riba daily, which once again has driven my haemoglobin levels down to 7.2 at last bloodwork count 2 weeks ago. I get my next bloodwork done next Wednesday with results on Thursday, this is academic anyway as I have no intention of ceasing or reducing the Riba and can bullshit the medical staff as to my general overall condition sufficient to convince them to keep their views with regard continuation in check. I know my blood work will betray me to a point but Alistair Campbell has nothing on me when it comes to spin. You are correct in that I did halt the riba for 3/4 weeks last time to enable a partial recovery of haemoglobin levels but this will not happen this time round, I will not permit such and have sufficient supply to last me all but the last 4 weeks so they cannot refuse to supply scripts until such time as it matters not. The side effects are many fold with the itching be the most distressing but these I will tolerate. Due to the fact of my Cirrhosis, I will possibly require transplantation sooner rather than later and I will only accept this if clear of the virus. My views on this may change with circumstance. I got myself into this and will do my best to get myself out. Signature"Whale Oil Beef Hooked." "Lu Tze." http://boinc.mundayweb.com/seti2/stats.php?userID=1262 Lu Tze, you hang in there buddy. Wishing you the best of luck man! NUKE THE LITTLE f.ckers MAN!!!! SignatureRuss Visit Alaska @ http://www.tannersacre.com > > On Fri, 4 Mar 2005 16:20:26 +0000 (UTC), Lu Tze > > <Lztue@ankhmorpok.com>, in message ID [quoted text clipped - 39 lines] > this if clear of the virus. My views on this may change with > circumstance. I got myself into this and will do my best to get myself out. > Lu Tze, you hang in there buddy. > > Wishing you the best of luck man! NUKE THE LITTLE f.ckers MAN!!!! Lu Tze, I agree with Russ, hang in there and kill them all this time. If they try to hold back on your Riba let me know. Not sure about mailing overseas, but I've got about 400 of them left. Dwight >> On Fri, 4 Mar 2005 16:20:26 +0000 (UTC), Lu Tze >> <Lztue@ankhmorpok.com>, in message ID [quoted text clipped - 39 lines] >this if clear of the virus. My views on this may change with >circumstance. I got myself into this and will do my best to get myself out. It's a damn shame they won't give you the meds to boost your RBC. But I admire your fighting spirit. Kill the dragon. On Fri, 4 Mar 2005 20:46:33 +0000 (UTC), Lu Tze <Lztue@ankhmorpok.com>, in message ID <d0ahf9$afv$1@nwrdmz04.dmz.ncs.ea.ibs-infra.bt.com>, in the newsgroup alt.support.hepatitis-c wrote: >Unfortunately, I as yet, have nothing positive of note to contribute to >the group. I am now on week thirteen of at least 52 weeks treatment, yes [quoted text clipped - 16 lines] >this if clear of the virus. My views on this may change with >circumstance. I got myself into this and will do my best to get myself out. Lu Tze. Please take care. If you take the drugs against medical advice, you could end up killing yourself. I am quite pissed off with the NHS in this country that they won't give an equivalent of procrit or neupogen to lift the blood counts. My reasoning is that if they are going to offer tx to someone then they should be prepared to give whatever is necessary in order to allow that tx to be completed. Maybe things will improve if/when viramidine is marketed (it's like riba but without the drop in blood counts). Best of luck Lu Tze but please please take care. SignaturePaul Use the reply by email facility in your newsreader to send email > On Fri, 4 Mar 2005 20:46:33 +0000 (UTC), Lu Tze > <Lztue@ankhmorpok.com>, in message ID [quoted text clipped - 33 lines] > riba but without the drop in blood counts). > Best of luck Lu Tze but please please take care. Paul. I understand what you are saying but I also accept that there is a limit to the financial resources that that can be directed to any one individual. It is unfortunate but a reality, that whilst at I have worked all my life and paid the relevant taxes etc, I am really at the end of my useful contributory stage in this regard and am now a net drain on these resources. I may be in this position for the long or the short term but the fact never the less remains that these details have to be factored in with regards the needs of others and my overall place in the scheme of things. It is good that I exist at a moment in time when there is the medical knowledge and the financial availability to do anything at all about a condition, I, and I alone, have lumbered myself with. There was no hope at all for previous generations and with the vagaries of nature and various man made uncertainties, no guarantee that this opportunity will be in place for future generations. I shall remain resolute and wish you and all others the best that life can offer with regards your individual hopes and aspirations. But do not worry over much with regards me as like a bad penny. I always turn up. Signature"Whale Oil Beef Hooked." "Lu Tze." http://boinc.mundayweb.com/seti2/stats.php?userID=1262 Your doc told you to quit taking riba for 3 days? AAAAAAAHHHHHH!!!!!!!!!! That seems like a pretty stupid thing to tell you. Three days isn't going to make any siginificant difference in your RBC's but may very well make a difference in your viral load, for the worse. Procrit, on the other hand, will benefit your anemia alot. Welcome to the group. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum I got anemic very quickly also. My NP told me to take 5 Ribas per day instead of 6. I didn't reduce my dose...I waited for the Procrit and it took a couple of weeks to start feeling "better". Welcome and keep coming back. Life is good Mark > Hello group...I have been lurking around here for a couple of months > now. I started treatment 9 weeks ago (peg-interferon and ribaviran [quoted text clipped - 17 lines] > email name is about a machine I run at work....not what I do at > work...get your head outta the gutter...lol I was the same way but never changed my dose. I noticed the "shortness" of breath after a month of being on the riba. My nutrifills got real low and almost went on half dose of the peg, but it and my hemoglobin bounced back to acceptable ranges. Welcome to the group and good luck. OH, BTW, I'm a Operating Engineer, local 302 , I can run anything but "scrapers", hahaha.... if you know anything about those you know enough to stay away from them. SignatureRuss Visit Alaska @ http://www.tannersacre.com > Hello group...I have been lurking around here for a couple of months > now. I started treatment 9 weeks ago (peg-interferon and ribaviran [quoted text clipped - 17 lines] > email name is about a machine I run at work....not what I do at > work...get your head outta the gutter...lol >Hello group...I have been lurking around here for a couple of months >now. I started treatment 9 weeks ago (peg-interferon and ribaviran [quoted text clipped - 17 lines] >email name is about a machine I run at work....not what I do at >work...get your head outta the gutter...lol Everybody gets anemic to some degree but most don't get to the point where they need the procrit. It may take a few weeks but you should start feeling better. In additon to the other post: Do what ever you need to do to eat a balance diet and take a good mult-vitamina and mineral suppliment. It will help maintain a good blood count. When I was off feed, mine blookd count dropped, but I used medijuana and that brought it back up and also kept my food down better. A saying I learned in the Puna district on the Big Island, "whatever works". aloha, dave Signature-- davon96720 IM@ yahoo, aim, aol, msn davon96720@hotmail davon96720@yahoo.com http://members.triopod.com/davon96720 No of SETI units returned: 1611 Processing time: 1 years, 344 days, 5 hours. (Total hours: 17021) www.setiathome.ssl.berkeley.edu > Hello group...I have been lurking around here for a couple of months > now. I started treatment 9 weeks ago (peg-interferon and ribaviran [quoted text clipped - 17 lines] > email name is about a machine I run at work....not what I do at > work...get your head outta the gutter...lol |
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