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Question to HR about 18 weeks protocol for G2/3's
Hello there
My current stats: 44 yo, kinda ow, male hispanic. Baseline 2,8 million VL ALT 170/AST 60... 2 late Fibroscans @ 10 KPA. My first one 1 year ago was 3.7??? don't know if bogus...Cause I didn't fast on my last 2 FS.
Started tx on Nov 21st on 800mg RIBA copegus and 180mikes Pegasys
my 2 wk PCR was UND <615 IU
my 4 wk PCR was UND <50 IU
All the sx in the book but learned to controlled them.
LFTs have normalized to 50 and 30 and Hgb was 12 at week 8. No access to procrit since I'm TXing in spain.
Going for another CBC & pcr highest sensitivity next week.
Told my doctor maybe I should extend due to my negative predictors.
He said the opposite (that if next PCR is UND as he supposes) I should do 18 weeks cause I seem to be responding vey well. He goes to a lot of conferences in the States and he even told me that the New England Journal of Medicine states 18 wks new trend in NA.
Since I've been here I have seen a lot of geno 2/3 relapsing and I kinda see a dicotomy & its hard to decide. I don't want to overexpose specially that vertex is near.
Your opinion on this matter would be greatly appreciated
Thanks and regards
scuba
My current stats: 44 yo, kinda ow, male hispanic. Baseline 2,8 million VL ALT 170/AST 60... 2 late Fibroscans @ 10 KPA. My first one 1 year ago was 3.7??? don't know if bogus...Cause I didn't fast on my last 2 FS.
Started tx on Nov 21st on 800mg RIBA copegus and 180mikes Pegasys
my 2 wk PCR was UND <615 IU
my 4 wk PCR was UND <50 IU
All the sx in the book but learned to controlled them.
LFTs have normalized to 50 and 30 and Hgb was 12 at week 8. No access to procrit since I'm TXing in spain.
Going for another CBC & pcr highest sensitivity next week.
Told my doctor maybe I should extend due to my negative predictors.
He said the opposite (that if next PCR is UND as he supposes) I should do 18 weeks cause I seem to be responding vey well. He goes to a lot of conferences in the States and he even told me that the New England Journal of Medicine states 18 wks new trend in NA.
Since I've been here I have seen a lot of geno 2/3 relapsing and I kinda see a dicotomy & its hard to decide. I don't want to overexpose specially that vertex is near.
Your opinion on this matter would be greatly appreciated
Thanks and regards
scuba
From:http://clinicaloptions.com/Hepatitis/Conference%20Coverage/
RVR was 4 weeks undetectable.
Overall for patients with genotypes 2 and 3, even if they achieved RVR, the SVR was significantly lower after 16 weeks of therapy compared with 24 weeks (82% vs 90%, respectively). <B>For patients with HCV genotype 2, SVR dropped from 91% to 80% when comparing 24 and 16 weeks, respectively.</B> For patients with genotype 3, a nonsignificant decline in SVR rates from 89% down to 84% was observed with a shortened duration of therapy. Therefore, based on these data, it is suggested that patients with genotype 2/3 receive 24 weeks of treatment to achieve the maximal chance of SVR, even for patients with RVR. However, these data also suggest that for patients with RVR, treatment for 16 weeks will result in SVR rates of 80% to 84%. Therefore, patients who have trouble staying on therapy for 24 weeks still have a significant chance of achieving SVR with 16 weeks of treatment. Additionally, these data suggest that relapse following 16 weeks of treatment can result in favorable virologic outcomes with retreatment for 24 weeks.
The graph on the right shows striking data on SVR rates in patients not achieving a RVR. Only 49% of patients with genotypes 2 and 3 achieved SVR if they did not achieve RVR. Furthermore, reducing the duration of therapy to only 16 weeks significantly dropped the SVR rate from 49% to 27%. Clearly, patients who do not achieve RVR cannot possibly have a shortened duration of therapy. The question is, do these patients actually need an extended duration of therapy of more than 24 weeks? The ACCELERATE trial was not designed to address this, but additional studies looking at this population of patients with genotypes 2 and 3 who do not achieve RVR would be of interest to the field.
Mike
RVR was 4 weeks undetectable.
Overall for patients with genotypes 2 and 3, even if they achieved RVR, the SVR was significantly lower after 16 weeks of therapy compared with 24 weeks (82% vs 90%, respectively). <B>For patients with HCV genotype 2, SVR dropped from 91% to 80% when comparing 24 and 16 weeks, respectively.</B> For patients with genotype 3, a nonsignificant decline in SVR rates from 89% down to 84% was observed with a shortened duration of therapy. Therefore, based on these data, it is suggested that patients with genotype 2/3 receive 24 weeks of treatment to achieve the maximal chance of SVR, even for patients with RVR. However, these data also suggest that for patients with RVR, treatment for 16 weeks will result in SVR rates of 80% to 84%. Therefore, patients who have trouble staying on therapy for 24 weeks still have a significant chance of achieving SVR with 16 weeks of treatment. Additionally, these data suggest that relapse following 16 weeks of treatment can result in favorable virologic outcomes with retreatment for 24 weeks.
The graph on the right shows striking data on SVR rates in patients not achieving a RVR. Only 49% of patients with genotypes 2 and 3 achieved SVR if they did not achieve RVR. Furthermore, reducing the duration of therapy to only 16 weeks significantly dropped the SVR rate from 49% to 27%. Clearly, patients who do not achieve RVR cannot possibly have a shortened duration of therapy. The question is, do these patients actually need an extended duration of therapy of more than 24 weeks? The ACCELERATE trial was not designed to address this, but additional studies looking at this population of patients with genotypes 2 and 3 who do not achieve RVR would be of interest to the field.
Mike
Hi Scuba,
You might mention to your doctor that the shorter-course studies (at least the ones I've seen) all used weight-based ribavrin while you've been on a fixed 800 mg dose. I'm assuming you're not weight-based unless you weigh <65kg? Standard treatment is 24 weeks which might be prudent since you haven't been on weight based.
That said, you may have been non-detectible at week 2 which might trump your fixed dose, and that is probably why your doctor thinks 18 weeks is enough and he's probably correct. But since the test wasn't very sensitive can't really be sure you were indeed non-detectible.
Given your fixed dosing and not so sensitive tests, I'd probably go the full 24 weeks if I was tolerating treatment well, but frankly I have a good feeling that you will SVR either way. I'm sure HR will chime in later.
All the best,
-- Jim
You might mention to your doctor that the shorter-course studies (at least the ones I've seen) all used weight-based ribavrin while you've been on a fixed 800 mg dose. I'm assuming you're not weight-based unless you weigh <65kg? Standard treatment is 24 weeks which might be prudent since you haven't been on weight based.
That said, you may have been non-detectible at week 2 which might trump your fixed dose, and that is probably why your doctor thinks 18 weeks is enough and he's probably correct. But since the test wasn't very sensitive can't really be sure you were indeed non-detectible.
Given your fixed dosing and not so sensitive tests, I'd probably go the full 24 weeks if I was tolerating treatment well, but frankly I have a good feeling that you will SVR either way. I'm sure HR will chime in later.
All the best,
-- Jim
Your doc seems really gung ho to have you shorten your tx, I'd fax a copy of the information mikesimon posted to your doctor. You don't want to relapse, you are on a fixed dose of 800/riba and you have substantial liver damage. I say do it once, do it right. Why risk relapse.
Mike,
Thanks for the link. The study you posted seems to contradict earlier studies suggesting 16-week results for RVRs were similar to 24-week results. Being a larger study it does give pause. What wasn't touched on was the 12-week shorter course using Peg Intron, as the newer study used Pegasys. As you probably know, one of our members "Rifleman" SVR'd on 12 weeks of Peg Intron, and some others also reported success on the shorter course. (Rifleman was on weight-based ribavirin). But given Scuba's fixed dose, not so sensitive week 2 VL test, and the study you present -- in his shoes I'd go 24 weeks unless I had significant side effects.
It should be noted -- also per article you posted -- that the shorter course is still a very viable option for those having problems with treatment "...Therefore, patients who have trouble staying on therapy for 24 weeks still have a significant chance of achieving SVR with 16 weeks of treatment. " And in fact, the shorter course patients studied still had 80% chance of SVR which we geno 1's would just jump upon if presented :)
Hope this finds you doing well in the New Year.
-- Jim
Thanks for the link. The study you posted seems to contradict earlier studies suggesting 16-week results for RVRs were similar to 24-week results. Being a larger study it does give pause. What wasn't touched on was the 12-week shorter course using Peg Intron, as the newer study used Pegasys. As you probably know, one of our members "Rifleman" SVR'd on 12 weeks of Peg Intron, and some others also reported success on the shorter course. (Rifleman was on weight-based ribavirin). But given Scuba's fixed dose, not so sensitive week 2 VL test, and the study you present -- in his shoes I'd go 24 weeks unless I had significant side effects.
It should be noted -- also per article you posted -- that the shorter course is still a very viable option for those having problems with treatment "...Therefore, patients who have trouble staying on therapy for 24 weeks still have a significant chance of achieving SVR with 16 weeks of treatment. " And in fact, the shorter course patients studied still had 80% chance of SVR which we geno 1's would just jump upon if presented :)
Hope this finds you doing well in the New Year.
-- Jim
Thanks for you input guys. I'm familiar with the study Mike posted and I have to agree that 24 is not that hard in comparison to the 48 or 72 others have to face. I apologize for sounding so whinney (is this correct?)...But since I never had a needle BX I really don't know accurately my current histology. and I'm a bit fat but I'm tall, 99kg for 1,80mts
What about the turgidity of blood in FS when not fasting?
I was 90/50 LFTs for 3 years until the infamous HEP A&B tetanus vaccine shots. That's when my ALT went to 300 and i started to experience URQ pain and started to read MH on a daily basis.
I'll go the 24 wks then cause I get the meds from SS anyway (not from my private doc) and since I'm tolerating tx.. why risk it? Is that I'd wanted HR's take on this difficult subject...
And sometimes we 2/3 stay at the bottom of the drawer (understandable)
What about the turgidity of blood in FS when not fasting?
I was 90/50 LFTs for 3 years until the infamous HEP A&B tetanus vaccine shots. That's when my ALT went to 300 and i started to experience URQ pain and started to read MH on a daily basis.
I'll go the 24 wks then cause I get the meds from SS anyway (not from my private doc) and since I'm tolerating tx.. why risk it? Is that I'd wanted HR's take on this difficult subject...
And sometimes we 2/3 stay at the bottom of the drawer (understandable)
I re-read your post, and maybe you're considering extending beyond 24 weeks, as opposed to doing the normal 24-course versus the shorter 18 week course?
While it's true we've had some geno 2 and 3 relapses here, nothing that appears to contradict the 20% predicted that are predicted to relapse, based on an 80% overall cure rate for genotype 2/3.
I also don't know of any studies that suggest extending treatment beyond 24 weeks for treatment naive geno 2's EVRs will significantly improve on those 80% odds to the point where you would reasonably want to risk another 24 week exposure to interferon. Of course all this assumes you will still be non-detectible on the very sensitive test your doctor is going to order.
-- Jim
While it's true we've had some geno 2 and 3 relapses here, nothing that appears to contradict the 20% predicted that are predicted to relapse, based on an 80% overall cure rate for genotype 2/3.
I also don't know of any studies that suggest extending treatment beyond 24 weeks for treatment naive geno 2's EVRs will significantly improve on those 80% odds to the point where you would reasonably want to risk another 24 week exposure to interferon. Of course all this assumes you will still be non-detectible on the very sensitive test your doctor is going to order.
-- Jim
I guess our last posts crossed so you can disregard my last post as you don't appear to be considering extending beyond 24.
From the same study and site I found this particularly interesting:
"The observation that utilizing an increased dose of peginterferon resulted in an increased rate of RVR makes sense, as the virologic effectiveness of peginterferon is rapid. The proportion of patients achieving RVR was approximately 2% to 8% in the groups receiving standard-dose peginterferon alfa-2a(180
"The observation that utilizing an increased dose of peginterferon resulted in an increased rate of RVR makes sense, as the virologic effectiveness of peginterferon is rapid. The proportion of patients achieving RVR was approximately 2% to 8% in the groups receiving standard-dose peginterferon alfa-2a(180
Mike,
Thanks again for the studies. As you may know, I double-dosed Peg for the first few weeks. I remember asking my doc about how well that might improve my chances of SVR and he said, maybe like 10%. Seems he was right on the money.
As to your view on tx "to treat as aggressively as possible without subjecting the patient to any undue risk of serious harm", I can't disagree in principle, but the problem as I see it as that the risks of the treatment drugs are too individual and unpredictable from patient to patient -- therefore one is always gambling on "serious harm" when extending.
I'm convinced, for example, that if I had treated for only 24 weeks -- as opposed to 54 -- not only wouldn't I have had some of my post treatment problems, but I also wouldn't have basically lost two years out of my life (work, relationships, etc) which is also a significant factor for many. Or course, given I was a stage 3, 24 weeks was not considered, but I'm just using this as an example for those where a shorter treatment might make sense. Hopefully, Vertex will make shorter treatments the right choice for everyone.
I do agree about tailoring treatment, too little of which is being done, basically because IMO many doctors are simply too lazy/disinterested to read up on the literature and/or put in the extra time. But again, I see tailoring treatment going both ways, not just by being more agressive, i.e. extending -- but also by considering shorter stop rules for those with little or no liver damage -- i.e. if you don't RVR in __ __ weeks, then cut your losses, stop and try again when better drugs are available.
All the best,
-- Jim
Thanks again for the studies. As you may know, I double-dosed Peg for the first few weeks. I remember asking my doc about how well that might improve my chances of SVR and he said, maybe like 10%. Seems he was right on the money.
As to your view on tx "to treat as aggressively as possible without subjecting the patient to any undue risk of serious harm", I can't disagree in principle, but the problem as I see it as that the risks of the treatment drugs are too individual and unpredictable from patient to patient -- therefore one is always gambling on "serious harm" when extending.
I'm convinced, for example, that if I had treated for only 24 weeks -- as opposed to 54 -- not only wouldn't I have had some of my post treatment problems, but I also wouldn't have basically lost two years out of my life (work, relationships, etc) which is also a significant factor for many. Or course, given I was a stage 3, 24 weeks was not considered, but I'm just using this as an example for those where a shorter treatment might make sense. Hopefully, Vertex will make shorter treatments the right choice for everyone.
I do agree about tailoring treatment, too little of which is being done, basically because IMO many doctors are simply too lazy/disinterested to read up on the literature and/or put in the extra time. But again, I see tailoring treatment going both ways, not just by being more agressive, i.e. extending -- but also by considering shorter stop rules for those with little or no liver damage -- i.e. if you don't RVR in __ __ weeks, then cut your losses, stop and try again when better drugs are available.
All the best,
-- Jim
The 'induction dosing' trial has been out on ClinicalTrials for a few weeks. I think there was a recent new poster who was to be in that trial. It uses varying amounts of peg/riba in it's arms. Limited, however, to naive g1. I'm also a firm believer in the aggressive approach (seems to be working for me so far). I also think that docs who walk on the safe side of the SOC street may be missing out on some of the opportunities to recognize 'hard to treat' situations as candidates for the aggressive approach at initial treatment, before it come to relapse. I relayed this story a year or so back: When I went to see the tx doc, after all the diagnostic stuff, we had our little treatment talk. He asked me my weight. Then he pulled out this little laminated wheel with concentric circles and Schering logos all over it. As he spun the wheels and looked into the windows he said something like '185 lbs, geno 3, easy to treat, your're lucky - look like 24 weeks 800 mg of this and .5 of that'. Being naive, in more ways than one, said somehting like 'ok we're good to go'. Looking back, it wasn't so good to go, which is why I get to go again.
It's hard to second guess but, in your case, not as hard as if you'd have relapsed after 24 weeks - now that would be hard! I don't really know how to respond to you on that subject Jim. I agree that it is an individual assessment on all fronts. I have treated with full dose interferon, in one form or another, for over 3.5 years and half dose for 6 months. I don't think I have any serious long lasting effects from interferon - at least none that I am aware of anyway. I think the ribavirin was the threat to me. I have been off my mini TX for 3 weeks now and I am still borderline anemic and my platelet count is 120,000 (up from 82,000 at the end of TX - yeah, and I know it's the Peg doing that). I really believe that my doctor was more concerned about the ribavirin because he had me on 800 mg. for the first 2 years of TX and only reluctantly agreed to my desire to increase to 1000 mg for my 3rd TX of 73 weeks. He warned me about the possibility of residual anemia and it does take me a while to recover to a normal RBC, HB and platelet sufficiency. I wonder sometimes whether I am just different because of what I have been through or whether people attribute long lasting sides to TX when that might not be the case. It's the devil we know and so it's understandable that we blame HCV and/or TX - it's an easy target. But I have other easy targets so maybe it's subjective to a very large extent. I am not suggesting that your problems aren't due to TX Jim and maybe in your case it's apparent and demonstrable that they are but I really have no way of knowing. Maybe your relationships have suffered because you're just a crotchety/cranky guy and you'd be that way even if you'd never treated. I'm kidding with you Jim.
Anyway, this year has started out well for me - my labs are good except for the anemia/platelet issues and that's all I need for now. I hope your year is going well too and continues to get better and better. Stay well and happy.
Mike
Anyway, this year has started out well for me - my labs are good except for the anemia/platelet issues and that's all I need for now. I hope your year is going well too and continues to get better and better. Stay well and happy.
Mike
So you mean I'm should not be considered an RVR even though I was UND at week 2? Because of PCR sensitivity <615 you mean? I thought it was a standard to have a quantitative at first.
1400 mg/1600 mg riba safe? Shoot, that's anemia for sure (for what I've seen in MH). I know in the States with the help of procrit it's a nonissue but in the rest of the world we have to fare with 800mg or WBD for geno 1s (that keeps being the consensus in the US) according to ClinicalOptions.
I would extend if I had to, but I would like to shorten it also.
I cannot risk losing my job and like Jim says, If I had a little bit of hope of improving histology for a few years to redo tx with new faster meds, I would.
So Rifleman did clear at 12 with Pegintron? How much riba did he take? u remember his age and stats?
gracias
1400 mg/1600 mg riba safe? Shoot, that's anemia for sure (for what I've seen in MH). I know in the States with the help of procrit it's a nonissue but in the rest of the world we have to fare with 800mg or WBD for geno 1s (that keeps being the consensus in the US) according to ClinicalOptions.
I would extend if I had to, but I would like to shorten it also.
I cannot risk losing my job and like Jim says, If I had a little bit of hope of improving histology for a few years to redo tx with new faster meds, I would.
So Rifleman did clear at 12 with Pegintron? How much riba did he take? u remember his age and stats?
gracias
Thanks for keeping us posted. Sounds like you got some GREAT feedback/advice from jmjm, mikesimon, kalio and Flguy. Do you think they might be trying to speed things up, since you're in a socialized medical system? I don't know, but I regularly went to see one Dr. (a psychiatrist) when I lived in Spain and mine were the fastest appt's I had in my whole life (and I'm not exactly a newbie to Dr's appts). When the HCV stuff happened in another European country (also socialized medical system), I really had to be on top of things and advocate for myself. I do as well here in the US, but I felt like I could "slip throught the cracks" easier over there. I hope you continue to inform yourself AND advocate for YOURself. You're worth it! Aiuta
Aiuta. you're sooo right. Social security here is decent, but there is trend to privatization and Docs have their own economic issues to think about.
That's why i'm visiting a private when I can, and going to SS for SOC...
On the other hand I thank God for MH, Jim, Mike, Kalio, NYG,Lindy, etc, etc...You're the best of the best.
I guess i have to be proactive on this no matter what.
here's an excerpt of the NEJM that talks about geno 2/3 with 1000mg riba :-(
"Conclusions A shorter course of therapy over 12 weeks with peginterferon alfa-2b and ribavirin is as effective as a 24-week course for patients with HCV genotype 2 or 3 who have a response to treatment at 4 weeks."
kinda weird
That's why i'm visiting a private when I can, and going to SS for SOC...
On the other hand I thank God for MH, Jim, Mike, Kalio, NYG,Lindy, etc, etc...You're the best of the best.
I guess i have to be proactive on this no matter what.
here's an excerpt of the NEJM that talks about geno 2/3 with 1000mg riba :-(
"Conclusions A shorter course of therapy over 12 weeks with peginterferon alfa-2b and ribavirin is as effective as a 24-week course for patients with HCV genotype 2 or 3 who have a response to treatment at 4 weeks."
kinda weird
<you mean I'm should not be considered an RVR even though I was UND <at week 2? Because of PCR sensitivity <615 you mean? I thought it <was a standard to have a quantitative at first.
-----------
It's certainly encouraging but it would have been more definitive if your test went to at least 50 IU/ml or even lower. Quantitative's here in the U.S. go all the way down to 5 IU/ml and I'm sure in Europe they go down to 50 IU/ml, because that's the number of lot of the European trials use.
<<1400 mg/1600 mg riba safe? Shoot, that's anemia for sure (for what I've seen in MH). I know in the States with the help of procrit it's a nonissue but in the rest of the world we have to fare with 800mg or WBD for geno 1s
You make a good point. All the riba in the world is no help if you get so anemic that you have to stop treating. Still, one could arguably start at weight-based riba and then titer down if anemia became severe and rescue drugs like Procrit were not available.
<So Rifleman did clear at 12 with Pegintron? How much riba did he take? u remember his age and stats?
I'm pretty sure Rileman was on weight-based riba and don't know the rest of his stats. And yes, he did report he was SVR after tx only 12 weeks with Peg Intron. Keep in mind the short course Peg Intron trials were also 12 weeks but the Pegasys short course trials were 16 weeks.
-- Jim
-----------
It's certainly encouraging but it would have been more definitive if your test went to at least 50 IU/ml or even lower. Quantitative's here in the U.S. go all the way down to 5 IU/ml and I'm sure in Europe they go down to 50 IU/ml, because that's the number of lot of the European trials use.
<<1400 mg/1600 mg riba safe? Shoot, that's anemia for sure (for what I've seen in MH). I know in the States with the help of procrit it's a nonissue but in the rest of the world we have to fare with 800mg or WBD for geno 1s
You make a good point. All the riba in the world is no help if you get so anemic that you have to stop treating. Still, one could arguably start at weight-based riba and then titer down if anemia became severe and rescue drugs like Procrit were not available.
<So Rifleman did clear at 12 with Pegintron? How much riba did he take? u remember his age and stats?
I'm pretty sure Rileman was on weight-based riba and don't know the rest of his stats. And yes, he did report he was SVR after tx only 12 weeks with Peg Intron. Keep in mind the short course Peg Intron trials were also 12 weeks but the Pegasys short course trials were 16 weeks.
-- Jim
Mike: Maybe your relationships have suffered because you're just a crotchety/cranky guy and you'd be that way even if you'd never treated.
---------------------------------------------
No, that's what turns them on :) But seriously, treatment was a black hole for me being unable to work and even go out of the house for much of the time. It's good that you seemed to tolerate longer term tx well but it's such an individual thing. You only have to read some of the recent threads on post treatment symptomology to know how deep some the sfx go. I'm 10 months post tx now and honestly can say that the only thing I feel better about are when I look at my lab reports :) I certainly don't *feel* any better that I'm SVR, in any which way. BTW I had no plans on re-treating again with the current drugs should I have relapsed unless I was convinced by my doctor (or a slew of doctors) that I had absolutely no other choice. I really feel another year on interferon would have finished me off to the point that I would never be anything like the same person again. Now, at least I see some lights at tunnel's end.
Be well,
-- Jim
---------------------------------------------
No, that's what turns them on :) But seriously, treatment was a black hole for me being unable to work and even go out of the house for much of the time. It's good that you seemed to tolerate longer term tx well but it's such an individual thing. You only have to read some of the recent threads on post treatment symptomology to know how deep some the sfx go. I'm 10 months post tx now and honestly can say that the only thing I feel better about are when I look at my lab reports :) I certainly don't *feel* any better that I'm SVR, in any which way. BTW I had no plans on re-treating again with the current drugs should I have relapsed unless I was convinced by my doctor (or a slew of doctors) that I had absolutely no other choice. I really feel another year on interferon would have finished me off to the point that I would never be anything like the same person again. Now, at least I see some lights at tunnel's end.
Be well,
-- Jim
Mike, just to clarify a little, it wasn't the interferon (or even riba) per say that made me feel so miserable, but it was the constant infections -- sinus, prostate, ears, throat (often all together); frequent antibioitic courses (4-5 months worth); just about continuous GERD/reflux; significant weight loss, as well as skin problems from head to foot so bad at times that I could not wear shoes. And others have reported worse. From the little I remember of the first one or two weeks of treatment, the direct sides of the interferon and riba were somewhat tolerable, but the rest of the stuff eventually just wore me down.
That sounds truly dreadful Jim. I was so lucky that I didn't suffer from any infections and being immune suppressed it's surprising that I didn't. I have always had a very vigorous immune system - it could fight off everything but HCV. Would you believe that I haven't had a cold or the flu since 1980? Of course, I did have rejection issues and they were probably attributable to that same vigorous immune system, so it cuts both ways for me. And my immune system may have contributed in part to the problems I had with the anti-rejection dose reduction. That's still somewhat of a mystery to me. I know you're probably like me and derive major comfort from your labs. As poorly as you feel now I would hate to speculate how you'd be feeling if you hadn't treated and your liver had deteriorated further. I think you were up against it and really had to treat and, if that's true, you cannot have any self recrimination - you did what you had to do and you did it with knowledge and intellect. There's not much more we can do - really. Why do you think that you were so prone to infections - was it simply the TX - reduced WBC? You know Jim, I never paid attention to ANC or WBC because I was so preoccupied with the red blood cell and platelet stuff. I assume my team looked at it closely but I hate to assume anything with serious stuff like this. Anyway Jim, I just hope very much that you feel better and better as time passes. At least you don't have the HCV going on and that disease can get you if you're not careful. Stay well and happy Jim and I wish you great luck. Mike
Thanks Mike. We all get dealt our own cards we must play.
Why all the infections? Age, sensitivity to the tx drugs, pre-existing conditions, too much riba in the beginning, a combination?
Certainly my ANC dropped pretty low but a lot of the stuff started pretty early when ANC wasn't all that bad. I do remember wondering at one time if all the problems I was experiencing -- sinus, prostate, GERD, skin, etc, -- would go away even after I finished treating, since they were only indirectly related to the tx drugs.
My NP said they would and she was pretty much right at least with the acute stuff. My take is that if I wasn't on the drugs I might have had some of the same issues, but much milder, and where my body might have fought off let's say a sinus infection in 1-2 weeks, on the tx drugs it just could never quite win the battle so it just kept trucking for 54 weeks.
I don't think my story is all that uncommon, many have it worse and have had to stop treatment. And yes, I am grateful when I look at my lab reports, because I could have had the same side effects with the prospect of treating again and/or advancing liver disease hanging over my head, as is the case with many. I do also want to say that as hard as I've had it, when I look at what some others here have overcome -- and you specfically come to mind -- I am humbled.
Let's hope we all feel better this coming year !
-- Jim
Why all the infections? Age, sensitivity to the tx drugs, pre-existing conditions, too much riba in the beginning, a combination?
Certainly my ANC dropped pretty low but a lot of the stuff started pretty early when ANC wasn't all that bad. I do remember wondering at one time if all the problems I was experiencing -- sinus, prostate, GERD, skin, etc, -- would go away even after I finished treating, since they were only indirectly related to the tx drugs.
My NP said they would and she was pretty much right at least with the acute stuff. My take is that if I wasn't on the drugs I might have had some of the same issues, but much milder, and where my body might have fought off let's say a sinus infection in 1-2 weeks, on the tx drugs it just could never quite win the battle so it just kept trucking for 54 weeks.
I don't think my story is all that uncommon, many have it worse and have had to stop treatment. And yes, I am grateful when I look at my lab reports, because I could have had the same side effects with the prospect of treating again and/or advancing liver disease hanging over my head, as is the case with many. I do also want to say that as hard as I've had it, when I look at what some others here have overcome -- and you specfically come to mind -- I am humbled.
Let's hope we all feel better this coming year !
-- Jim
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How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
