Aa
anyone else experiencing this?
On wk 14 of triple therapy & und at wk 4 & wk8, but last week has been miserable. Am on neupogen 1X per wk & red cells at 9.4, had riba cut from 1000 to 600 at wk 7. Doctor will not increase riba till I am at least at 10(red blood ct.). Feel like I am going to war with half the amount of solders but can't fathom "quality of life" if riba is increased. Will do what I must, cause this is my last attempt at treatment...4th treatment, always a non-responder.. My issue is thyroid, way out of whack, but am having dose adjusted...see what happens. The issue is mylegs. They ache & walking is close to unbearable. Am reluctant to tell dr for fear of another dose reduction. But truly, this is close to unbearable...on top of that, throw in a little restless leg syndrome. Anyone in similar situation & think daily walks would help? Any feed back would be appreciated.....thanks all............
Thank you for the post, I am in similar situation all thank you for your comments.
@flycyclist Thank you so much for suggesting a walk.
@NGirl That will be my mantra tomorrow, Procrit is our friend
Dee
@flycyclist Thank you so much for suggesting a walk.
@NGirl That will be my mantra tomorrow, Procrit is our friend
Dee
You are right about the procrit, I have fallen to 9.8 and the clinical technician is telling me I am stable. I asked about procrit she told me not to look on the web as it was upsetting me unecessarily. She said now that Incivek was out of hospital protocal that the rules change a little from the trial. I have also been told that many new drugs have side effects that no one knew about. I thought Incivek/VX950 had been studied for 10 years and was approved by the FDA, I am getting blood work before my next shot to see if I am still dropping or am I stable. I really do not want to kill the patient while killing the HCV :)
Seems like I've done it all, riba and peg reductions, transfusion, neupogin, procrit. I couldn't have completed treatment without procrit. We are all part of a huge experiment. Who know how all this will play out in SVR. I fought with my docs all the time about dosing and helper drugs. A doc that is treating pt's with 3x therapy and refuses procrit? Not good.
thank you for your thoughts, best source of info is someone that has "walked that road"... will see what blood work shows this Fri. & needless to say, will do whatever is deemed necessary............fear is a waste----knowledge will cure that.................
Procrit is the best stuff ever made so many of us would have never been able to continue treatment without it = dont be afraid of things you don't know about Procrit is our FRIEND!!!!!!!!!!
PS I tx'd 72 weeks lost my thyroid around 24 or 30 did Procrit 40,000 x 2 a week and yet somehow ended up being SVR........yes Procrit is our friend.
PS I tx'd 72 weeks lost my thyroid around 24 or 30 did Procrit 40,000 x 2 a week and yet somehow ended up being SVR........yes Procrit is our friend.
I know the anemia is kicking my butt & combined with thyroid issue, it is tough! Gee.....just 6 more months left if I'm lucky! Seriously am just REALLY grateful these drugs are giving us a shot.........good luck all..........
I cannot even imagine a year on neupogen. For me, it is tougher then peg. Procit scares me & my doc. prefers not using it since it was not in trial or study or something. Tho we do what we must. I have even begun to eat much more iron rich foods in the hope it will help...will see this friday what they may do .I am smiling-- you came back for more (treatment) Warrior!
will take your advice & try walking -- I know exercise is important if at all possible. Neupogen works but it is a difficult med . I was on 2X per week, dc dropped me to 1X per wk-- felt better . Find that 500mg of acetaminophen helps with that little meanie.Actually, the leg thing got unbearable the last week only. think it is result of thyroid being really low, adjustment in dose may help. Have come to realize this really is a "balancing" act....thanks for input........good luck to all..........
CYMBOLS -- I can hear them now! Think I will use that "image" often. During darkest moments, this community ALWAYS comes to the rescue.....THANK YOU ALL! I do believe these new meds are giving all of us a real shot at being finally rid of this curse.
My first time treating in 2001 I was on neupogen for almost the entire year. It caused severe pain in my bones, and the dr gave me Tylenol w codeine. This time around, my and dropped and was low for the entire 24 weeks but my new Dr would,nt put me on the neupogen unless the and fell below 500, and it only got as low as 570. My red count has been in the 9s the entire time, and I only went on procrit when I dropped to 8.9 and then was off when it got back to 9.8 where it held for about a month, then back on for 2 weeks when it dropped to 9.3. Both times they reduced the ribo for about one week.
Hang in there, it ends eventually!
Hang in there, it ends eventually!
It amazes me how our doctors love to order Neupogen and hate to order Procrit.
What was your ANC (absolute neutrophil count) before you started using the Neup and how high is the Neup keeping the ANC. As flcyclist says it sure can cause bone/joint pain. Perhaps you can lengthen the time between shots.
I find it hard to function when HGB is in the 9s. Is there some reason the doctor won't rx Procrit to help with this? If I take a walk in the morning in the 9s, I have to take a nap in the afternoon. It just wipes me out. I have dropped most of my excercise habits (week 16 now). Since this is your 4th treatment and you have been doing so AMAZINGLY WELL, please see if the doctor will rx Pro. I think that may give you a lot of relief.
I hope this is the one.
frijole
What was your ANC (absolute neutrophil count) before you started using the Neup and how high is the Neup keeping the ANC. As flcyclist says it sure can cause bone/joint pain. Perhaps you can lengthen the time between shots.
I find it hard to function when HGB is in the 9s. Is there some reason the doctor won't rx Procrit to help with this? If I take a walk in the morning in the 9s, I have to take a nap in the afternoon. It just wipes me out. I have dropped most of my excercise habits (week 16 now). Since this is your 4th treatment and you have been doing so AMAZINGLY WELL, please see if the doctor will rx Pro. I think that may give you a lot of relief.
I hope this is the one.
frijole
Hello. I am sorry about your discomfort. I also debate revealing all my suffering to my Doc but after the lesson I learned about crashing Hmgs, I must emphasize: It's the squeaky spring that gets the oil. I believe one has to be their own bitchie, kantacorus (?) advocate and demand appropriate attention and explanation until you are very sure everyone concerned is on the same page. This may seem difficult but all good things come with challenge. You have come such a long way. Cymbals clanging now. You have accomplished so much. The darkest hours are just before the dawn. I am inspired by your strength, 4th treatment - Wow. I bow to you. Libzo
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As you probably know, the bone pain in the legs could be related to the neupogen, since achy bones is a common side effect. Did the achy legs start prior to the neupogen? Just a thought to consider.