Aa
Low temperature/ side effects/relapse
I just had my #2 shot last night. I forgot the riba this morning! Brain fog already? I will take an extra one tomorrow. I have achy muscles and a temperature that goes between 95 and 96 degrees. Today I had six blankets, a coat and a hat on in bed! Quite a sight for everyone trying to help me get the memorial together. Not sure if I am going to be much help to them. Has anyone had low temps like this? I had some low temps before tx, but they seemed to go away.
I wrote a very detailed obituary for my dad and was going to put it in the SF chronicle, but it is 8 inches long and they want $86 an inch for one day! I really want to put it all in, so I suppose I will pay, but what a rip-off to charge for someone who did so much for this area.
Sorry to hear about those of you who relapsed. Perhaps you can get into a trial for the protease inhibitor. I read you have to relapse in order to get it.
Linda
I wrote a very detailed obituary for my dad and was going to put it in the SF chronicle, but it is 8 inches long and they want $86 an inch for one day! I really want to put it all in, so I suppose I will pay, but what a rip-off to charge for someone who did so much for this area.
Sorry to hear about those of you who relapsed. Perhaps you can get into a trial for the protease inhibitor. I read you have to relapse in order to get it.
Linda
Sandy,
Thanks for the thoughts. I did NOT relapse, I was giving my best wishes to those who have relapsed lately.
I agree I won't regret the obit. Thankfully the Chronicle is doing their own story, so I don't have to spend the money on that paper anyway. This is the last thing I can do for my dad, it is important to me.
Linda
Thanks for the thoughts. I did NOT relapse, I was giving my best wishes to those who have relapsed lately.
I agree I won't regret the obit. Thankfully the Chronicle is doing their own story, so I don't have to spend the money on that paper anyway. This is the last thing I can do for my dad, it is important to me.
Linda
I am so sorry about the relapse. It really sucks. Hopefully soon, (not soon enough) there will be that magical cure all that won't kill us all while taking it.
Your obituary for your father is something you sure won't regret doing.
Every year after my mother & father passed away, on their birthdays and special days, I too found solace in writing my memories. I have had many people say how much they enjoyed reading them. I came from a small little town so I was not hit that bad with the cost.
I would almost bet that your temps are from the anxiety you are experiencing. I cannot imagine going through this while on treatment.
My thoughts and prayers are with you & your family.
Sandy
Your obituary for your father is something you sure won't regret doing.
Every year after my mother & father passed away, on their birthdays and special days, I too found solace in writing my memories. I have had many people say how much they enjoyed reading them. I came from a small little town so I was not hit that bad with the cost.
I would almost bet that your temps are from the anxiety you are experiencing. I cannot imagine going through this while on treatment.
My thoughts and prayers are with you & your family.
Sandy
While missing a Riba dose every once in a while is not dreadful - please make sure that you don't do this again. It's so early in your tx for you to start messing up meds already.
What I did until I got used to it was bought one of those med/vitamin boxes with an AM and PM slot that way I couldn't forget.
If you don't take the meds on a REGULAR PRECISE schedule it WILL hurt your chances at success.
Brain Fog doesn't generally start THAT quick - once the meds really get in to high doses in your blood stream it will affect your thought process but right now I think maybe it's just stress or something making you forget.
Once you get the real brain fog = you will SEE the huge difference. LIke you forget how to get where you are driving to or where you are going even.........things like that, it's a mess.
What I did until I got used to it was bought one of those med/vitamin boxes with an AM and PM slot that way I couldn't forget.
If you don't take the meds on a REGULAR PRECISE schedule it WILL hurt your chances at success.
Brain Fog doesn't generally start THAT quick - once the meds really get in to high doses in your blood stream it will affect your thought process but right now I think maybe it's just stress or something making you forget.
Once you get the real brain fog = you will SEE the huge difference. LIke you forget how to get where you are driving to or where you are going even.........things like that, it's a mess.
Yes i have had low temps. On this tx. Mine has been anywhere from 95.8 to 96.5, Only had chills once and only ran a slight temp. 99.5 once. Most have been normal, also at times have had achy muscles. Good luck to you, and take care
That stinks. And, there have been several others who have gotten similar news lately. I know how you feel. Since your still focused and seeing your doc soon, do you have another condition that would cause that low hgb with procrit? I'm sure you wern't keen on the idea of low riba dose. Gonna rest the body or jump back in?
So sorry to hear about your father. Temperature comes and goes seems like it has settled in lately. Variations between 96 and 103. Not a clue other than the Nupogen. Only thing that has changed. Hope yours settles down and levels out soon. Dale
Thanks your response.
We checked my iron levels during treatment-no reason for such severe anemia found.Doc said I had worse HGB reaction to Riba that he had ever known.
I'm ready to treat again-maybe this time with viramidine,new less toxic Riba alternative.
I'llpost news when I know more.
We checked my iron levels during treatment-no reason for such severe anemia found.Doc said I had worse HGB reaction to Riba that he had ever known.
I'm ready to treat again-maybe this time with viramidine,new less toxic Riba alternative.
I'llpost news when I know more.
What was your pre-tx hgb? Did you start low or did the riba just tank it all by itself? I've decided to take a couple of more months off and re-start later in the summer. To me, this stuff is too all-consuming not to have my head straight before I begin again.
My temp has been running on the high side but nothing to worry about according to doc. I run about 99 - 100 most days.
HCA - sorry about your relapse. It is something that is always on our minds and it makes me ill when I hear someone relapsed.
I hope everyone is well. Been trying to keep up on everyone's stats/progress etc.
Deb in Az
HCA - sorry about your relapse. It is something that is always on our minds and it makes me ill when I hear someone relapsed.
I hope everyone is well. Been trying to keep up on everyone's stats/progress etc.
Deb in Az
I want to tell you how sorry I am about your relapse. I wish you better luck if you treat again. Mike
Linda,
Having a fever durning tx is normal. I will do shot # 19 tomorrow and the last few weeks have had a fever ranging between 100-103. In the beginning it was a low grade fever like 99.4. It seems my sxs change as time goes on, but nothing to be concerned about.
HCA--I'm sorry you relapsed and don't know what to say as nothing I say will make you feel any better. Just wanted to tell you that I have Thalassemia(anemia) and my base is around 11.0. I have been on full dose of riba (800) a day and peg-intron and procrit. Still my HGB dropped as low as 7.1 so I had a transfusion. As it stands now my HGB is again 7.3 and I plan to have another trans next week just to keep me on the meds. After my first trans my HGB only went to 9.1. I'm telling you this because I believe with a transfusion it can be done my friend. When you see the dr next week ask him about a transfusion if need be. In the paper work that comes with the meds it states that those who have thalassemia can not be treated, and I'm living proof that it can. Good luck and let us know how you make out.
BEAGLE
Having a fever durning tx is normal. I will do shot # 19 tomorrow and the last few weeks have had a fever ranging between 100-103. In the beginning it was a low grade fever like 99.4. It seems my sxs change as time goes on, but nothing to be concerned about.
HCA--I'm sorry you relapsed and don't know what to say as nothing I say will make you feel any better. Just wanted to tell you that I have Thalassemia(anemia) and my base is around 11.0. I have been on full dose of riba (800) a day and peg-intron and procrit. Still my HGB dropped as low as 7.1 so I had a transfusion. As it stands now my HGB is again 7.3 and I plan to have another trans next week just to keep me on the meds. After my first trans my HGB only went to 9.1. I'm telling you this because I believe with a transfusion it can be done my friend. When you see the dr next week ask him about a transfusion if need be. In the paper work that comes with the meds it states that those who have thalassemia can not be treated, and I'm living proof that it can. Good luck and let us know how you make out.
BEAGLE
Speaking of brain fog, just this morning when I got back from taking my two dogs for a walk; my wife asked me if they"went" and I couldn't remember! Hard time concentrating at work also.I'm on wk. 5
sfbaygirl
So sorry about your father. How awful to have this happen just shortly after you have begun treatment. I can certainly understand missing the Riba. I take 600 in the morn and 600 in the eve. I have forgotten the morning dose twice on tx and each time I have added 1 pill a night to the evening dose for 3 days to equal out -- doesn't seem to have caused any harm. I have not had low or high temps on tx so cannot help there.
HCA
-damn. lousy. I am so sorry. I appreciate you posting your stats. That 606IU at 12 weeks was foreboding. I also was not clear at 12 weeks and am trying to decide if it would make any difference to extend. It is just so easy to think -- clear since week 24..... and I am so sick of treatment...... Good luck to you on making your treatment decision - with a 3/6 I imagine you will retreat, tho.
NYgirl
ARE YOU READING THIS????? HCA was 606 at 12 weeks and a 1a/1b. If you haven't got your hands on that Berg study yet (the one your doc called you about) let me know and I will email the pdf.
So sorry about your father. How awful to have this happen just shortly after you have begun treatment. I can certainly understand missing the Riba. I take 600 in the morn and 600 in the eve. I have forgotten the morning dose twice on tx and each time I have added 1 pill a night to the evening dose for 3 days to equal out -- doesn't seem to have caused any harm. I have not had low or high temps on tx so cannot help there.
HCA
-damn. lousy. I am so sorry. I appreciate you posting your stats. That 606IU at 12 weeks was foreboding. I also was not clear at 12 weeks and am trying to decide if it would make any difference to extend. It is just so easy to think -- clear since week 24..... and I am so sick of treatment...... Good luck to you on making your treatment decision - with a 3/6 I imagine you will retreat, tho.
NYgirl
ARE YOU READING THIS????? HCA was 606 at 12 weeks and a 1a/1b. If you haven't got your hands on that Berg study yet (the one your doc called you about) let me know and I will email the pdf.
sfbay,
Why wait until tomorrow to make up the dose? If you have any with you now, you could take one dose with lunch and another later tonight. Of course, you should check with your doctor, but my doc said taking the dose 12 hours apart wasn't necessary. I often took my doses 6-7 hours apart, sometimes even 4 hours apart.
HCA,
Very sorry about the relapse. If I remember correctly, you weren't too optimisic based on your treatment stats and dosage. Hopefully, your biopsy stage is still 3/6 or even better. If so, you got plenty of time to lick this thing. All the best.
-- Jim
Why wait until tomorrow to make up the dose? If you have any with you now, you could take one dose with lunch and another later tonight. Of course, you should check with your doctor, but my doc said taking the dose 12 hours apart wasn't necessary. I often took my doses 6-7 hours apart, sometimes even 4 hours apart.
HCA,
Very sorry about the relapse. If I remember correctly, you weren't too optimisic based on your treatment stats and dosage. Hopefully, your biopsy stage is still 3/6 or even better. If so, you got plenty of time to lick this thing. All the best.
-- Jim
Very sorry to hear your news. This is a b*tch that we have to work so hard for an outcome that is so uncertain. I wish you the best.
must be something in the air; way too many relapses lately. Welcome to the bench. I'm truly sorry about the news; it's hard. I was undetect (<600) at 12 and recently learned I've relapsed (probably at 599). Is everyone about to take take their 12 week VL taking notes?
HCA, so sorry to hear this, I'm sure youre going to find some answers, if you do want to find out about that viramadine, my girlfriend sure had a positive expereince with it...good luck to you...
SFbaygirl: so sorry to hear about your father, I'm sure youre obit is very inspiring...
SFbaygirl: so sorry to hear about your father, I'm sure youre obit is very inspiring...
I talked to the chronicle today and they want to do a story about my dad with pictures on Sunday or Monday. I am happy to hear this as he was a prominent bay area figure and touched many lives. Besides the $800. per day for my obit, per newspaper. It does mean a lot to me that he is remembered for what he has done, I am grateful that this reporter thinks so too. I feel it is important to post in the paper, no matter what the cost, but my step-mother does not, although she loved my account of his life. I will do it for me and my kids and grandkids. He didn't toot his horm much, so most likely neither of us knows the half of what he did. I learned how to paint by watching him my whole life and painted successfully for over 20 years.
Thanks for the kind thoughts and prayers.
Linda
Thanks for the kind thoughts and prayers.
Linda
On the subject of relapse,I finished 48 weeks in mid-march.
I was certain I had relapsed-my body told me,also my enzymes were raised.
Had 6 week post tx PCR-RNA detected.
I have taken this in my stride so far.I don't think of it as coming back,just as not having left.
I am seeing doctor next week to talk about the future.
Brief stats.
Male age 56
Geno 1a/1b
BX 3/6 (2002)
Date of infection 1979
Dx 2000
Treatment baseline 1.3m
12 wks 606
24 wks n/d
36 wks n/d
48 wks n/d
6wks post tx 450,000.
Ribavirin average 600mg per day owing to anemia.Double dose Procrit didn't work.HGB 7.6-9.3 during treatment.
I was certain I had relapsed-my body told me,also my enzymes were raised.
Had 6 week post tx PCR-RNA detected.
I have taken this in my stride so far.I don't think of it as coming back,just as not having left.
I am seeing doctor next week to talk about the future.
Brief stats.
Male age 56
Geno 1a/1b
BX 3/6 (2002)
Date of infection 1979
Dx 2000
Treatment baseline 1.3m
12 wks 606
24 wks n/d
36 wks n/d
48 wks n/d
6wks post tx 450,000.
Ribavirin average 600mg per day owing to anemia.Double dose Procrit didn't work.HGB 7.6-9.3 during treatment.
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