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Medical Forum / Diseases and Disorders / Hepatitis / October 2006that $%#* Iron level.....
After a visit back to my "blood" doctor a couple of weeks ago, I got the numbers on my iron straightened out to the point I can figure out what I need to do... When I was diagnosed with Hep C a couple of months ago, my initial iron level came back at 960. After being phlebotomized 7 times, my level had gone down to 705. I was shocked too hear that they want me down to 50!! Apparently I'll be giving a unit of blood every week til about mid February to get down where they need me to be, to start treatment. I thought I would be starting at the end of this month, and I was trying to pump myself up for it.. Does the iron level reduction take bigger jumps the lower you get, or will it stay at about a 40 point reduction each time I give a unit of blood right up til the end? Im beginning to wonder if my veins can hold up that long on a weekly basis...lol Lonesomedave- >After a visit back to my "blood" doctor a couple of weeks ago, I got >the numbers on my iron straightened out to the point I can figure out [quoted text clipped - 17 lines] > >Lonesomedave- Intuitively, it's likely to go the other way, with the rate of fall slowing as you get nearer the goal. There are plenty of models for that. Hang in there, you're on the right road. There are plenty of places for them to stick the needles ;-) Cheers /greyhackles > After a visit back to my "blood" doctor a couple of weeks ago, I got > the numbers on my iron straightened out to the point I can figure out [quoted text clipped - 17 lines] > > Lonesomedave- I have a condition called hemochromatosis and have gone through a lot of phlebotomies. In my case it usually takes a while to start showing a reduction in the iron level, but it does start to pick up as time goes on. I think the longest I've ever had to go was 16 weeks straight of once a week phlebotomies. It got to the point I was seeing just how fast I could fill that bag up. About every year or so I have to go through the blood letting again, but it usually only takes a 4 to 6 weeks to get it down now. Hang in there, it will come down and hopefully it will stay down for you. Dwight Dwight and Lonesomedave - Since this is a group for Hep-C, I'm assuming you have both that and Hemochromatosis. While I have the genetic predisposition for HH from both of my parents, I did not have the actual disease until after a couple of months of being on Peg-Interferon and Ribovarin. Since I didn't know about the defective genes, it took about 6 months and just plain luck for my doctor's to figure out why I was having such an extreme reaction to the Hep-C meds. When they realized what it was, I still had 6 months to go on the interferon and also had developed anemia of chronic disease (seems weird to have both iron overload and anemia at the same time, but I guess it's actually not really uncommon). Because of these concurrent conditions, they didn't start me on the phlebotomies until after I had completed the 48 weeks on interferon. It took about 4-5 months of phlebotomies to drop my iron levels and they've been keeping the levels down (as well as treating the anemia) with bi-weekly injections (first they tried procrit and then switched to aranesp) which encourage my red blood cells to propagate and get larger (to help my shortness of breath from the blood cells inefficiency in carrying oxygen). Unfortunately, perhaps because of the HH or for other reasons, the interferon failed to eradicate the virus and while my levels had gone from over 2 million to not detectable after the 48 week treatment, the virus returned within 3 months and now, about 12 months later, it is back up over 1.5 million and the doctor wants me to go back on it. The first time around, I was apprehensive, but now I am outright scared because I've actually been bedridden by all of this for just about 3 years (thank God for laptop computers or I would've gone nuts!). Does anyone else have any experience of being a non-responder (Genotype 1A) or of having such severe reactions that they are (physically) totally debilitated? I have gone through physical therapy where they had to wheel me into the pool in a wheelchair) and my husband even got me a treadmill - but I'm unable to use it for more than 5-6 minutes at a time at only 1.5 mph - whereas before I walked 5-10 miles around a track 3 times a week and tromped around construction sites in a very physical job. I'm "only" 52 - which I consider still young - and just want to get my life back. But to have to give up atleast another year of my life because of the side-effects of treatment is really daunting. Any suggestions or shared experiences? Sparky >> After a visit back to my "blood" doctor a couple of weeks ago, I got >> the numbers on my iron straightened out to the point I can figure out [quoted text clipped - 13 lines] > >Dwight >Dwight and Lonesomedave - >Since this is a group for Hep-C, I'm assuming you have both that and [quoted text clipped - 33 lines] >treatment is really daunting. Any suggestions or shared experiences? >Sparky Well, you clearly weren't a non-responder - you cleared the virus, at least to the level of sensitivity of whatever viral load tests were used by the treating doctor. Trying not to sound trite, but you and your docs need to take the time to get your body and soul back together - get the iron load down, get your strength and stamina - and confidence - back up. Rushing into another round of antiviral therapy before you've gotten "ship shape" again would be a mistake. If/when you do another round, hopefully the therapy will be a bit more "interactive", with VL tests at weeks 4 and 12 providing guidance on the dosage and length of therapy. You didn't mention the earliest point that you tested clear - if it really wasn't until the end of the 48 week course, you could have been a slow responder, which could still result in SVR if the duration of therapy was extended - not exactly what one would want to have to deal with, but in for a penny, in for a pound... Cheers /greyhackles >>Dwight and Lonesomedave - >>Since this is a group for Hep-C, I'm assuming you have both that and [quoted text clipped - 22 lines] > >/greyhackles greyhackles- I appreciate your thoughts and encouragement. Your suggestions were not trite - but unfortunately, I simply haven't had the "luxury" of being able to get back in shape. Because of the degree of liver damage already sustained, and the fact that my concurrent conditions also negatively affect my liver, they are strongly advising against my delaying this much longer (I was told that 6 months ago). On top of the Hep C, HH, and Anemia of Chronic Disease, I also have epilepsy,osteoporosis, and a history of a stroke at age 27 and uterine cancer at 46. Despite all that, I had always maintained a positive attitude - and while for the most part I still do my best to keep a sense of humor and optimism, it'd be lying to myself if I denied being scared whether I'm going to have much of a future or not, and frustrated for having suddenly become essentially an invalid. My doctor's (who are really the best the Cleveland Clinic has to offer) cannot say whether my symptoms are from one disease or the other or just the combination of them all, but they are very real and not caused by depression or some other psychosomatic explanation. It's hard for me to believe that I'm the only one that has had such an extreme reaction though and I was hoping to find here someone else who's experienced it and, even better, has found something which can prevent it from getting worse when I go back on treatment - or atleast can help overcome the most egregious symptoms (which are the physical exhaustion, weakness, and shortness of breath). BTW, you are correct in saying that I am not a "non-responder" - rather, I am a relapser. I actually started to respond quite quickly (by the 3 mos. test) - but it returned just as quickly after I was withdrawn after 48 weeks. So this time, they want to extend it for 6 mos more AFTER another 48 week round of treatment. And I did have tests on quite a regular basis (viral load & liver function at 4 weeks, then every 12 weeks plus I have to get a CBC every 2 weeks and my ferritin checked every 2 months for the Hemochromatosis. Not sure what more can be done. If you think of anything, I'm all ears! Leslie >>>Dwight and Lonesomedave - >>>Since this is a group for Hep-C, I'm assuming you have both that and [quoted text clipped - 57 lines] > >Leslie Wow. That's quite the history. You must be one tough chick to still be hanging with us here in this particular Reality :-) That you apparently had a very good response the first time around certainly is in your favor (and you really deserve *something* to be in your favor :-) While it's counterintuitive to me under any "normal" circumstances to start antiviral therapy while in a rather frail condition, I reckon with all that's going on your docs sense of urgency may prevail. The reference to extending therapy six months beyond the 48 week plan was what I was alluding to - supported by VL tests along the way. Hopefully you'll have another strong early viral response, and then it'll just be a matter of your docs keeping you propped up for the duration. It does sound like you were hooked up with some clued-in docs the first time around. The frequent testing really is much more important than many docs appreciate (still). The exhaustion, weakness and breathlessness are what I experienced during therapy, having gotten deeply anemic in the first months. I wouldn't have made it past week 16 without having been put on maximum weekly Epogen/Procrit doses - which I had to continue for the last 35 weeks of tx. Considering you've been there/done that I expect your docs would stay on top of that from day one. Chronic HCV has been shown to cause all kinds of deleterious effects - it's not just the liver that can get whacked. While your docs may not be able to finger it now, hopefully once you've beaten it you'll be able to note the changes for the better... Cheers - and best wishes. /greyhackles Thanks for the good wishes. I guess I've just been too stubborn to die. I figure the best revenge to those who would rather I did otherwise is to live a good life. I've been blessed with a wonderful husband and son and many good friends and have a list 3 yards long of things I still want to accomplish. Now I just need to figure out how to stay alive (and AWAKE) enough to enjoy them. It's a bit of a catch 22 in that the only way to get back my strength is to exercise but I'm too weak and exhausted to do it. I see how Olympic athletes are able to push themselves past the limits of all reason and I just wish I could find that extra "oomph" to do it. >>>>Dwight and Lonesomedave - >>>>Since this is a group for Hep-C, I'm assuming you have both that and [quoted text clipped - 32 lines] > >/greyhackles |
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