Aa
Double Dosing Correction
I posted a few days ago that Dr. Gish was going to double-dose me starting in January. This is in response to four failed treatments. I am 1a. (I believe Susan and I are the champions of multiple treatments by now, although I could be wrong).
I misunderstood what the doctor's assistant said and had it clarified today. The double dosing will consist of double Pegasys and the standard, torturous Ribavirin. I would like to know if anyone has undergone this double dosing regiment. If so, how was it?
Did you eat and sleep normally? Were you prone to lashing out at your friends? Did you have a hard time breathing? Were you extremely depressed? Was the itching unbelievable? Did most of your hair fall out? Did you finally respond to the double-dosing?
Thanks,
Magnum
I misunderstood what the doctor's assistant said and had it clarified today. The double dosing will consist of double Pegasys and the standard, torturous Ribavirin. I would like to know if anyone has undergone this double dosing regiment. If so, how was it?
Did you eat and sleep normally? Were you prone to lashing out at your friends? Did you have a hard time breathing? Were you extremely depressed? Was the itching unbelievable? Did most of your hair fall out? Did you finally respond to the double-dosing?
Thanks,
Magnum
I am not sure if that is what did it for me or not. I don't know if anyone remembers but when I first started my tx, I was on 1200 riba a day and I was accidently told to draw 7 for my shot of interferon, So, for 12 weeks I did and found out later that I should have been drawing 4, thats when I got so confused I just decided to continue my dose with 5. I still wonder today if that high dose is not what gave me UND at 12 wks.
For me, I think the riba causes more sides than the interferon. But, I was just as nutty on the doses no matter what amount. I hope this will work for you, you need that big break. Keeping my fingers crossed for you and many prayers.
I think you and susan are the two with most relaspes, but you two keep trooping on; and I truly believe your days are on the horizon. Keep the faith.
Have a Great Day,
Cajun
For me, I think the riba causes more sides than the interferon. But, I was just as nutty on the doses no matter what amount. I hope this will work for you, you need that big break. Keeping my fingers crossed for you and many prayers.
I think you and susan are the two with most relaspes, but you two keep trooping on; and I truly believe your days are on the horizon. Keep the faith.
Have a Great Day,
Cajun
I double dosed my riba pretty much - it was one giant big mistake as I lost six full points in just over one week on my hemo. WAY too drastic a drop WAY too fast.
I would much rather double the peg - I actually did a few times when I was paranoid that I wouldn't make it to UND by 24 and once I got a bad headache but thats about it.
I would much rather double the peg - I actually did a few times when I was paranoid that I wouldn't make it to UND by 24 and once I got a bad headache but thats about it.
http://www.hivandhepatitis.com/2005icr/aasld/docs/112305_c.html
also......
(This is a co-infected study but I think that you can infer some similar results with HCV only infection. This is a very interesting study and to me it swuggests that many of us could make a few simple and safe improvements to get an improved chance at an RVR. BTW.....I haven't yet heard the final outcome from this study. Note; generally speaking HIV -HCV coinfected people have a lower response rate compared to HCV only infected folks. -willy)
http://www.hivandhepatitis.com/2007icr/ias/docs/080307_h.html
Good luck and I hope this helps you in your decison. Don't forget that as a past treatment failure your chances of clearing with the same compound may not be equivalent compared to treatment naives.
Willy
http://www.hcvadvocate.org/hcsp/articles/Pockros-2.html
".......The anemia associated with interferon/ribavirin therapy is likely due to a combination of reversible hemolysis and hematopoietic suppression of bone marrow by interferon. It is known that the triphosphate metabolite of ribavirin accumulates in red blood cells and causes oxidative injury to red blood cell membranes, thereby resulting in hemolysis. Patients who develop an anemia on ribavirin therapy have a responsive reticulocytosis. However, DeFrancesci et al. have shown that the compensatory reticulocytosis in patients treated with combination therapy is much less than that seen in patients treated with ribavirin alone, suggesting that interferon bone marrow suppression prevents an adequate reticulocytosis.7 Epoetin alfa has now been shown to effectively overcome this effect—this inadequate reticulocytosis—and to improve the anemia in patients treated with combination therapy......"
Mike
".......The anemia associated with interferon/ribavirin therapy is likely due to a combination of reversible hemolysis and hematopoietic suppression of bone marrow by interferon. It is known that the triphosphate metabolite of ribavirin accumulates in red blood cells and causes oxidative injury to red blood cell membranes, thereby resulting in hemolysis. Patients who develop an anemia on ribavirin therapy have a responsive reticulocytosis. However, DeFrancesci et al. have shown that the compensatory reticulocytosis in patients treated with combination therapy is much less than that seen in patients treated with ribavirin alone, suggesting that interferon bone marrow suppression prevents an adequate reticulocytosis.7 Epoetin alfa has now been shown to effectively overcome this effect—this inadequate reticulocytosis—and to improve the anemia in patients treated with combination therapy......"
Mike
To my knowledge the peg dosen`t give anemia only the riba does!!
The peg however lowers the platelets and the neuphtros and also the rest of the WBC
ca
The peg however lowers the platelets and the neuphtros and also the rest of the WBC
ca
Dude, still hangin in there...as above post reflect...starting month 9....liver is achey again but hey...fevers and night sweats are gone for first time in years so thats good.
UND as of 6 months, awaiting new PCR.
still watching sopranos reruns here....something old and familiar.....saw the silliest parody tonight, of Johnny Cashes life...what was it, oh yeah Walk Hard...laughed my arsh off...especially the lyrical genius...it was far superior to "A Mighty Wind" which scked by comparison. Especially if you were into Dylan, Dave B's lyrics, and others too were brilliant...
of course I like some of Apatow's stuff...it's not for everyone...but I really wasn't expecting much of John Riley so when expectations are low and it gets funny it's always a nice surprise.
How are you doing on your tx?? Is Dr. F meeting your expectations? where are you at?
mb
UND as of 6 months, awaiting new PCR.
still watching sopranos reruns here....something old and familiar.....saw the silliest parody tonight, of Johnny Cashes life...what was it, oh yeah Walk Hard...laughed my arsh off...especially the lyrical genius...it was far superior to "A Mighty Wind" which scked by comparison. Especially if you were into Dylan, Dave B's lyrics, and others too were brilliant...
of course I like some of Apatow's stuff...it's not for everyone...but I really wasn't expecting much of John Riley so when expectations are low and it gets funny it's always a nice surprise.
How are you doing on your tx?? Is Dr. F meeting your expectations? where are you at?
mb
Not to the same degree....I'm truly sorry I wrote that the way I did...not intending to scare you....that was just my experience.
Although I will say, unless under doc supervision one should not do this.
Since then I've done a fair amount of reading on it...the reactions are intensified by other health conditions and by the stage of liver disease itself. Obviously, if the liver/spleen cannot handle the INF, or the kidneys shut down from the Riba then the cure was worse than the disease.
the whole point of all the trials is to get a drug at a dose that most can tolerate, and keep the dose tolerable in order to create less issues.
One study in Sweden showed greater success with higher Riba blood level. Karen Lindahl did the study, and the issue there was the higher doses caused 2 in 10 to have kidney failure. Ergo there is a delicate balance for each person.
I've also learned 2 other factors affect the degree of depression and other symptoms.
1. is the liver itself makes all your seretonin daytime, and melatonin at night. The SOC drugs interfere with the livers capacity to make either....hence more depression daytime, and more sleep deprivation at night, which is why sleep aides and antidepressants are the 2 most common side effects of treatment, and ones HCV doc readily will help us with..alas with more drugs.
2. Is there is a genetic factor, a couple of genes known to influence how much seretonin, norephinephrine etc a person normally makes. Some have greater capacity than others. That is why bi-polar and other forms of depression run in families...or at least part of it. My mother was bi=polar...but I never was, nor even depressed...but this treatment changed that rapidly. I would say the treatment created some sort of anxiety disorder....because before tx it never happened....but shortly after beginning I began even waking up with my whole abdomen just quivering like a bowl of jello. It was rather like what a bad case of the shakes would be...(I'm guessing here) only it felt like every cell everywhere was wired on 20 pots of coffee.
I also did not sleep for several days at a time...even though taking no stimulants and a strong sleep aide..so it messed with brain waves and Gaba receptors, etc.
you might not have any of these things, itching is fairly common, I had about 3 weeks where I could not even wear soft cotton...my skin became unbearably touchy..so I went around nude and could only sleep between a pure silk sheet....of course my husband liked that idea...but I could not stand to be touched....think of a cat with all it's fur bristling when it's spoked...that was me.
Now, you'll probably have a much easier ride...they might be figuring on putting you on procrit from the start also...everybody seems to get some sides though, so just be aware they may occur and be more severe than before, and especially so if the liver has advanced in stage. There are reasons for what side effects are on those inserts....like real people that really did have the meds mess them up or worse.
You do need to talk to the doc about the procrit too really..the blood is so likely to tank at those levels it's almost criminal not to. Even on regular dosage I've seen a few in here with tanked blood in record time. Particularly smaller women. One whose blood went to 1/3 the oxygen carrying capacity in 2 weeks. She was too small for the dose they gave her, not weight based therapy as it should have been. Point is...you do need oxygen...
I mean, killing the virus is goood...supplying the brain with oxygen..good too!! Hello?
take care of yourself, and keep us posted. Hope you do really well with it...but be sure and do weekly labs at those doses.
mb
Although I will say, unless under doc supervision one should not do this.
Since then I've done a fair amount of reading on it...the reactions are intensified by other health conditions and by the stage of liver disease itself. Obviously, if the liver/spleen cannot handle the INF, or the kidneys shut down from the Riba then the cure was worse than the disease.
the whole point of all the trials is to get a drug at a dose that most can tolerate, and keep the dose tolerable in order to create less issues.
One study in Sweden showed greater success with higher Riba blood level. Karen Lindahl did the study, and the issue there was the higher doses caused 2 in 10 to have kidney failure. Ergo there is a delicate balance for each person.
I've also learned 2 other factors affect the degree of depression and other symptoms.
1. is the liver itself makes all your seretonin daytime, and melatonin at night. The SOC drugs interfere with the livers capacity to make either....hence more depression daytime, and more sleep deprivation at night, which is why sleep aides and antidepressants are the 2 most common side effects of treatment, and ones HCV doc readily will help us with..alas with more drugs.
2. Is there is a genetic factor, a couple of genes known to influence how much seretonin, norephinephrine etc a person normally makes. Some have greater capacity than others. That is why bi-polar and other forms of depression run in families...or at least part of it. My mother was bi=polar...but I never was, nor even depressed...but this treatment changed that rapidly. I would say the treatment created some sort of anxiety disorder....because before tx it never happened....but shortly after beginning I began even waking up with my whole abdomen just quivering like a bowl of jello. It was rather like what a bad case of the shakes would be...(I'm guessing here) only it felt like every cell everywhere was wired on 20 pots of coffee.
I also did not sleep for several days at a time...even though taking no stimulants and a strong sleep aide..so it messed with brain waves and Gaba receptors, etc.
you might not have any of these things, itching is fairly common, I had about 3 weeks where I could not even wear soft cotton...my skin became unbearably touchy..so I went around nude and could only sleep between a pure silk sheet....of course my husband liked that idea...but I could not stand to be touched....think of a cat with all it's fur bristling when it's spoked...that was me.
Now, you'll probably have a much easier ride...they might be figuring on putting you on procrit from the start also...everybody seems to get some sides though, so just be aware they may occur and be more severe than before, and especially so if the liver has advanced in stage. There are reasons for what side effects are on those inserts....like real people that really did have the meds mess them up or worse.
You do need to talk to the doc about the procrit too really..the blood is so likely to tank at those levels it's almost criminal not to. Even on regular dosage I've seen a few in here with tanked blood in record time. Particularly smaller women. One whose blood went to 1/3 the oxygen carrying capacity in 2 weeks. She was too small for the dose they gave her, not weight based therapy as it should have been. Point is...you do need oxygen...
I mean, killing the virus is goood...supplying the brain with oxygen..good too!! Hello?
take care of yourself, and keep us posted. Hope you do really well with it...but be sure and do weekly labs at those doses.
mb
So where are you at now? I haven't been reading any long posts lately. Haven't been reading much at all. I'm on season 4 of "Six Feet Under". Must have spent $50 in the last week at the video rental place. Bad cold started my addiction to this show.
Did I ask where are you now?
Did I ask where are you now?
depends on the person...I did one week DD.to try to get my dang PCR to MOVE in the right direction at least....and it was a week of crying/writhing/itching balistically and praying to die. My whole body was quivering for hours on end, Everyone's body is different but there's no way I could have continued...death would have been preferable.
mb
mb
Anemia hit around week 8. It was nasty. I was down to the low 10's but being a male and in a clinical trial, I couldn't get Procrit. So I just had to tough it out and work through it. Ironically, the anemia became more tolerable even though the hematocrit didn't increase a great deal.
Incidentally, I'm in week 43, on a normal dose, still clear. Actually, things looks very promising. I would also note that another person on this board from Hawaii did the Roche trial, cleared before week 12, and to my knowledge is three months post treatment and still UND.
Another lady who is in the trial locally is also clear at week 44. She is relapser I believe,
Incidentally, I'm in week 43, on a normal dose, still clear. Actually, things looks very promising. I would also note that another person on this board from Hawaii did the Roche trial, cleared before week 12, and to my knowledge is three months post treatment and still UND.
Another lady who is in the trial locally is also clear at week 44. She is relapser I believe,
I definitely can agree with your comment that "some... just need the jump start"... and as a geno 1, weighing about 210, my huband definitely might fit those 'particulars', but I'm very concerned about the anemia sx. How soon after starting tx did it hit? How low did it go? Is your trial a no-rescue-drugs trial?
I certainly wish you UND and SVR!
~eureka
I certainly wish you UND and SVR!
~eureka
Yes, went on to svr. Did 46 weeks, of which 4 were double. The fast response, I think, was the key
I'm in a Roche Trial that involved double-dosing of pegasys. Since the trial isn't over, I don't yet know whether I was double dosed the first 12 weeks or not, but I think I was,
At any rate, I cleared the virus (started at 22 million VL, geno 1b) somewhere between week 4 and 12, probably closer to 4 because I didn't have much virus left at week 4. I think you will find double-dosing of great benefit if you'd had trouble getting your viral load zero'd quickly. Personally, I would prefer to do Telepravir instead, but double-dosing pegasys early in the game can definitely get the job done.
As far as sides, I've had them all. Anemia is a particular problem with double-dosing, but I think you're hep doc is right on target. Some 1a's and 1b's just need the jump start, particularly is you're in the 1's, over 187 pounds, and you're viral load is high.
Some would argue that the normal dose is sufficient, but history says it wasn't enough dose in your case.
At any rate, I cleared the virus (started at 22 million VL, geno 1b) somewhere between week 4 and 12, probably closer to 4 because I didn't have much virus left at week 4. I think you will find double-dosing of great benefit if you'd had trouble getting your viral load zero'd quickly. Personally, I would prefer to do Telepravir instead, but double-dosing pegasys early in the game can definitely get the job done.
As far as sides, I've had them all. Anemia is a particular problem with double-dosing, but I think you're hep doc is right on target. Some 1a's and 1b's just need the jump start, particularly is you're in the 1's, over 187 pounds, and you're viral load is high.
Some would argue that the normal dose is sufficient, but history says it wasn't enough dose in your case.
Thanks for your reply. I am a little confused about your answer though. Did you clear? Were you a previous non-responder?
Thanks,
Magnum
Thanks,
Magnum
I did the double-Peg for 4 weeks. Relapser, G-3. Got to und after 2 weeks. Riba was normal (1200) for the full tx, but I started it a week before the first double-Peg. The Peg was not bad at all, I could have tolerated it much longer if I needed. I'm sure compared to your infergen, a walk in the park. Again, I was an 'easy geno 3'. There is someone here (forget who) is on double much longer. Also, Spacecoast did double for a while too (until und, then back off). Thinks he's a G1. The double I did was two shots at same sitting. I think Spaceman did his double as every 3/4 days. He got quick response too, with heavy riba up front.
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