Aa
failrure to address or admit damage
do you suppose anyone will ever own up to the devastation of treatment for hep c. i am a nurse was treated with peg intron in 02. got toxic was able to work briefly after i learned to talk again then in 03 04 got sicker and sicker - continue to have progressive frontal lobe damage autoimmune nightmare has destroyed my family cant work short term memory shot - yet ask any hepatologist and it didn't happen. now there are black box issues coming out of the wordwork - when did doctors, nurses or anyone altruistic leave medicine. i cannot even use a stove because if forget it. answer from all but one hepatologistg was never heard of it. they really should read and study the meds they are going to use even if they ignore it and continue to fill their pockets./ i am not the only one this happened to but we will be denied and ignored because basically hep c is a bad person disease and who cares. wish i had en ergyh to get active but i don't and didnt seem to matter anyway i have a wonderful doc now who i used to work for so she knows first hand what has happened to me so i get treated well. but i cannot tell you how many weird things i have had or what feeling good is. least i dont zombie sleep for days at the time anymore and sometimes i am not nauseated and in total fog - but now am having so many falls and potentially dan gerous things. i can;'t remember where i put things if anyon e inturrupts me dont really have any concept of time. or anything. they all know what they did and for alll you others affected hang in there and this nurse believes - remember to laugh even if no one else understands the joke. i miss my work, my brother doesnt let me see his kids, my son treats me like i dedliberately did this to affect his life, afterall disability and nursing salary are way different - but cant keep up with money anyway have been know not to check mail for a month or two. probably will never see this post because none of this ever happened or so i have been told. God bless all those affected and han g in there.
I already had alot of drain-bamage, from the adventurous life I had lived, in my youth. I had many head injuries, and worse, etc, and have suffered depression since I was 7 yrs.
I also had joint pain already, before 28 wks of Interferon....but after my 9th shot of Interferon, I seem to have accumulated some sort of reaction where as: if I sit for too long, the cartilidge running from my upper thigh, up into hip/groin area, it seems to have degenerated. I tried to do "hop-scotch" at my kids' school the other night,and the right leg will no longer hop..and it almost colapsed.
Since I am already 50 yrs old, I can accept the fact. But if I had been younger, it would would have been bad. I'm just glad the new meds are on the way~
I also had joint pain already, before 28 wks of Interferon....but after my 9th shot of Interferon, I seem to have accumulated some sort of reaction where as: if I sit for too long, the cartilidge running from my upper thigh, up into hip/groin area, it seems to have degenerated. I tried to do "hop-scotch" at my kids' school the other night,and the right leg will no longer hop..and it almost colapsed.
Since I am already 50 yrs old, I can accept the fact. But if I had been younger, it would would have been bad. I'm just glad the new meds are on the way~
I am not a troll,just a damaged soul.
Most of the folk with long term treatment issues suffer from chronic fatigue and are in constant pain.Using a computer is tiring and so they don't pop up as regularly as you might like in order for the regulars here to accept that they are real people suffering but we are real.I have a diagnosis of Post Interferon Syndrome-it's been 6 years since I finished treatment and attained SVR and it took 5 years to finally get the diagnosis of P.I.S.-I already knew that the treatment had caused the problems as I was a healthy active individual til then.
Most of the folk with long term treatment issues suffer from chronic fatigue and are in constant pain.Using a computer is tiring and so they don't pop up as regularly as you might like in order for the regulars here to accept that they are real people suffering but we are real.I have a diagnosis of Post Interferon Syndrome-it's been 6 years since I finished treatment and attained SVR and it took 5 years to finally get the diagnosis of P.I.S.-I already knew that the treatment had caused the problems as I was a healthy active individual til then.
It does happen. However sx will not cease simply after you stop 24 weeks of tx.
I did 24 weeks and don't feel all the side effects left until a good three month later. Now at 6 months post, I don't have any long lasting side effects.
I do believe staying active throughout treatment, and after, even if it was a short walk on some days, helps immensely.
I did 24 weeks and don't feel all the side effects left until a good three month later. Now at 6 months post, I don't have any long lasting side effects.
I do believe staying active throughout treatment, and after, even if it was a short walk on some days, helps immensely.
I posted on another site and couldn't find my way back until I finished tx, so, it does happen. I just finished 24 weeks of trip tx and still have sx. I read about all of the sx and took the risk. I'm F3 so I didn't want to waste time.
Thank you, Willy, some of these people finally fond there place in life, the pro's and con's of this terrible treatment, i have Tx'ed,success, 4yrs clearled, there is a support group for Hep C people, but , i don't hear the truth, there just like here, they think their; CEO's running a fortune 500 co. instead of thinking of the poor people who have had to make that fearful decision and hopeing they don't get all the side effects that the NP said, maybe,perhaps,some, not most, but, you know ? I think they need to find another way to get rid of this Hep C. My life has been a mess ever since i treated, i'am homeless now, i hurt my shoulders coming off treatment, NOBODY, told me coming off treatment would be this bad, i lost 35 pds in 30 days, i went in to a deep depression, i was thinking of suicide, that's what i told the NP on the phone, she said; i should'nt of said that, they locked me up at the V.A. hospital for a couple of days gave me paxel, it didn't work , just made things worse, now i'am on disablity and living in a motel, i had money saved and a good job that is gone now, and i didn't make this up to sale another cure or sale my product which i don't have. you know, its bad enough that you have to take this drug and then you have to listen to the nut jobs too, i'am sorry i ever took this drug, Frespirit57
Crime against humanity? Not so. You are not entitled to demand that anybody invest in developing a medication simply because you do not want to try the available cure. As for public funding, don't you live in Argentina? How about approaching that government to fund the research you are demanding.
Mike, I have to possibly disagree with a few things said. Like you I am also impatient. I am a little frustrated that these things move so slowly but I also understand why. There is little doubt that early approval of some of these compounds would save lives and it is tempting to look at the numbers and rationalize that is what should drive the approval process. Even so, I understand that the FDA has to strike a balance..... I mean they have to attempt to satisfy both sides; the greatest speed and yet maintaining standards so that the drugs we end up taking are both safe and effective.
You may not be aware of it but Vertex DID attempt a trial (Prove 2) in which in 1 arm NO RIBA was attempted. What happened was a 40% SVR rate. That means that 60% were not cured and have possibly produced Telaprevir resistant virii that could resist further attempt to be treated with any PI's such as Telaprevir or Boceprevir.
So you can understand that being to willing to try potentially weak or ineffective solutions to a cure may not really be doing people a favor.. I "get" your impatience but I want you to understand there are a few members of this forum who failed in that trial and they are not happy campers; they now can't get into other trials. I know another member here whose trial shut down due to causing low neuts. The drug compound WAS effective just not as safe as it should be. Would you be the person who would approve it? It's tempting but if one goes down that road too easily we could end up with a lot of borderline safe drugs. My own father was a Vioxx patient that died a few years before the recall. We didn't know at the time that it probably caused his death.
I write just to expose a few issues with being to proactive in approving drugs.
One thing that I would really like to see the FDA do for further HCV trials is allow the selected use of EOT-12 week PCR's as equivalent to the official 24 week EOT PCR's. For people on Telaprevir and Boceprevir I don't believe that there is significant difference between the 2 results, but they do end up further slowing the approval process.
By the way...... this is important to consider. In one of the Berkson threads there was a link. I Think it came from Berkson himself in an interview. He asked the interviewer if the knew what it cost to get a drug approved nowadays? The answer was 1 billion dollars. I want to point out that anything that gets done needs money in a HUGE way. Even early failures are immensely expensive. Pushing forward without caution can cause an even worse result. Take a look at the recall that Toyota is now engaged in. There is no easy way.
best,
Willy
You may not be aware of it but Vertex DID attempt a trial (Prove 2) in which in 1 arm NO RIBA was attempted. What happened was a 40% SVR rate. That means that 60% were not cured and have possibly produced Telaprevir resistant virii that could resist further attempt to be treated with any PI's such as Telaprevir or Boceprevir.
So you can understand that being to willing to try potentially weak or ineffective solutions to a cure may not really be doing people a favor.. I "get" your impatience but I want you to understand there are a few members of this forum who failed in that trial and they are not happy campers; they now can't get into other trials. I know another member here whose trial shut down due to causing low neuts. The drug compound WAS effective just not as safe as it should be. Would you be the person who would approve it? It's tempting but if one goes down that road too easily we could end up with a lot of borderline safe drugs. My own father was a Vioxx patient that died a few years before the recall. We didn't know at the time that it probably caused his death.
I write just to expose a few issues with being to proactive in approving drugs.
One thing that I would really like to see the FDA do for further HCV trials is allow the selected use of EOT-12 week PCR's as equivalent to the official 24 week EOT PCR's. For people on Telaprevir and Boceprevir I don't believe that there is significant difference between the 2 results, but they do end up further slowing the approval process.
By the way...... this is important to consider. In one of the Berkson threads there was a link. I Think it came from Berkson himself in an interview. He asked the interviewer if the knew what it cost to get a drug approved nowadays? The answer was 1 billion dollars. I want to point out that anything that gets done needs money in a HUGE way. Even early failures are immensely expensive. Pushing forward without caution can cause an even worse result. Take a look at the recall that Toyota is now engaged in. There is no easy way.
best,
Willy
One little scientist with a good heart sitting in a lab is going to get this done. "
Correction >>> Is NOT going to get this done.
Correction >>> Is NOT going to get this done.
I don't see collusion or corruption, just regulation and the restrictions that come with it. "
I have to agree whole heartidly with newleaf. Had you been around this forum even five years ago you would have seen that all the drugs in trial did not pan out. It was not the fact that they were not trying, they just did not come to fruition.
Now, these days you see the miracles of PIs shortening the term of treatment and also increasing the odds of succes and it is literally to me miraculous. Watch an "Andiamo" who has treated 90 times win the battle! Wow.
I thank God that there are guidelines and restrictions that come along with this tedious work otherwise God knows what people would willingly subject themselves to in the vain attempt to be healed with things that were not legitimate.
A crime? I just don't see how any educated person can believe that we've come this far already in a few short years because big pharma is out to get us. Rather how far we have succeeded in closing the door to failure.
Business IS business after all and investors do expect to see profits in all aspects of the world - otherwise there is no push to get it done. One little scientist with a good heart sitting in a lab is going to get this done.
it seems hard to keep this thread on topic.
Funding for trials comes from the pharmaceutical companies themselves. There was an early level trial called Inform that used 2 polymerase inhibitors. It was short,it's purpose was to see if patients could tolerate the PI's and the results for the short time frame were phenomenal. Now that they are moving forward into more advanced trials, they have split the 2 PI's into 2 trials, each with SOC. As I understand the reasoning for the design change from 2 PI's together to 1 PI + SOC, is that the FDA will not approve a trial enrolling large numbers of people (phase 2 & expecially 3's, which can enroll thousands) to exclude the standard regimen. They consider it inhumane to treat a serious disease with experimental drugs only and require the inclusion of a proven cure.
I don't see collusion or corruption, just regulation and the restrictions that come with it.
Funding for trials comes from the pharmaceutical companies themselves. There was an early level trial called Inform that used 2 polymerase inhibitors. It was short,it's purpose was to see if patients could tolerate the PI's and the results for the short time frame were phenomenal. Now that they are moving forward into more advanced trials, they have split the 2 PI's into 2 trials, each with SOC. As I understand the reasoning for the design change from 2 PI's together to 1 PI + SOC, is that the FDA will not approve a trial enrolling large numbers of people (phase 2 & expecially 3's, which can enroll thousands) to exclude the standard regimen. They consider it inhumane to treat a serious disease with experimental drugs only and require the inclusion of a proven cure.
I don't see collusion or corruption, just regulation and the restrictions that come with it.
Interferon and ribavirin are dangerous drugs. I don't think anyone would argue with that. A crime (I don't use that word lightly) is being committed if no valid therapies are being funded, supported, and eventually approved that do not include these drugs, and that seems to be the present case, undoubtedly because of collusion between government and the corporations that produce and sell these drugs. In short, corruption. Crime against humanity would not be too strong an expression to use, considering the number of infected people.
I believe that some day there will be a huge international scandal when the truth about the collusion between supposedly public officials and private drug companies becomes known, even if that collusion is only to the extent of shares in these companies owned by those officials. However, I don't believe that is the extent of the corruption. No, it goes much further.
It is a fact that trials of drugs that can combat HCV independently of SOC are not being funded, and the manufacturers of these drugs are afraid even to propose a trial that does not include SOC. This is obvious from the trials information websites. The funding and support going to new medications is going to those, like the viral gene inhibitors, Alinia, et cetera, that are testing the new medications together with interferon and ribavirin. Those that are not, like the anti-HV vaccine (which is not only preventative but curative), cannot find public funding and are not being supported by the larger medical institutions. What are they afraid of?
Is the prejudice for SOC and against anything else just because doctors and hospitals receive money for prescribing SOC? I think not. The corruption is more far-reaching. It goes all the way back to the AMA and the ways in which medical personnel are chosen for public office in regulatory and other public health agencies, and to the undisclosed pecuniary interests of politicians in supporting those companies whose stock they own, and their interest in defeating alternatives that could lower the value of their shares.
There is an enormous globalized corruption that has set in everywhere, and the terrible problem of treatment for hepatitis is part of it. Make no mistake about that.
I believe that some day there will be a huge international scandal when the truth about the collusion between supposedly public officials and private drug companies becomes known, even if that collusion is only to the extent of shares in these companies owned by those officials. However, I don't believe that is the extent of the corruption. No, it goes much further.
It is a fact that trials of drugs that can combat HCV independently of SOC are not being funded, and the manufacturers of these drugs are afraid even to propose a trial that does not include SOC. This is obvious from the trials information websites. The funding and support going to new medications is going to those, like the viral gene inhibitors, Alinia, et cetera, that are testing the new medications together with interferon and ribavirin. Those that are not, like the anti-HV vaccine (which is not only preventative but curative), cannot find public funding and are not being supported by the larger medical institutions. What are they afraid of?
Is the prejudice for SOC and against anything else just because doctors and hospitals receive money for prescribing SOC? I think not. The corruption is more far-reaching. It goes all the way back to the AMA and the ways in which medical personnel are chosen for public office in regulatory and other public health agencies, and to the undisclosed pecuniary interests of politicians in supporting those companies whose stock they own, and their interest in defeating alternatives that could lower the value of their shares.
There is an enormous globalized corruption that has set in everywhere, and the terrible problem of treatment for hepatitis is part of it. Make no mistake about that.
I'm surprised many people weren't told of the risks. Maybe that has to do with when they treated? I was informed of the thyroid risk, and told of the moods and other symptoms of treatment. I think there are so many possible long term side effects that "could" happen from any significant treatment, be it chemo for cancer, or interferon for this, or MS, that doctors can't list them all, for many are so remote in probability. I don't think it is going to change anytime soon, the new drugs while promising shorter treatment and better % outcomes, may just bring new problems.
I feel like I made an informed decision. It was a good one, I am cured, and aside from some minor nerve damage in fingers (which doesn't really bug me much), my health is 100%. I feel interferon and ribavirin has saved my life, or at least, my lifestyle. It's sad others aren't so lucky, but that is the way with medicine, it isn't the fault of doctors that we picked up something very nasty that there isn't a better cure for yet.
I feel like I made an informed decision. It was a good one, I am cured, and aside from some minor nerve damage in fingers (which doesn't really bug me much), my health is 100%. I feel interferon and ribavirin has saved my life, or at least, my lifestyle. It's sad others aren't so lucky, but that is the way with medicine, it isn't the fault of doctors that we picked up something very nasty that there isn't a better cure for yet.
GUY=I agree, doc should admit it does happen. There is a huge disconnect there.
I actually had to take my docs to task for not knowing that the endocrine system is affected by the disease as well. Research prove that.
I'd suggest everyone get checked for endocrine dysfunction. Long before a person becomes decompensated one can develop a huge number of ailments due to any one of our glands not working.
Fatigue and memory problems occur (and inflammatory responses etc) the moment any one of the glands is affected.
Unfortunately, they only test for thyroid (and parathyroid with calcium level) but those don't tell the whole tale. They do NOT test in this country for diebetes correctly.
The HOMA is a much more accurate tool for making sure the pancreas, a gland, is working.
The IGF-1 will tell if the pituitary has been compromised (many HCV people have very low pit. function).
Until the medical community realize these connections there will continue to be people that fall through the cracks not knowing that proper endocrine function is crucial to mental process, metabolism, energy, heartbeat, etc etc. etc.
I have a thread on HGH if you are interested.
BETTY= sorry if I was at alll harsh above, not meaning to be. I think the operative thing is we must be careful, especially medical professionals, not to discourage folks from treating when indeed it may save their lives, allow them to return to work, allow them to not worry about infecting others, etc etc. etc.
It's not that we should not discuss the issues that do come up...but that we need to balance how we word things in order not to discourage others who might succeed, and recover completely...but who are too afraid to treat after reading a horror story.
I also have stove problems etc. and did not SVR. I would suggest you try seeing an endo, getting a sleep study, getting off of any prescriptions that can effect the mind or immune system, and taking a more holistic approach to recovery. Example: Coq10 and many other vitamins and herbs could help you to recover as well.
There is a whole regime recommended for liver patients to do this.
what stage is your LD at? You do realize some of what you describe is common in stage 4 LD right? Even if you SVR at that stage, you may not ever regain full metabolic processes.
feel free to PM me if you want a list of helpful substances.
mb
I actually had to take my docs to task for not knowing that the endocrine system is affected by the disease as well. Research prove that.
I'd suggest everyone get checked for endocrine dysfunction. Long before a person becomes decompensated one can develop a huge number of ailments due to any one of our glands not working.
Fatigue and memory problems occur (and inflammatory responses etc) the moment any one of the glands is affected.
Unfortunately, they only test for thyroid (and parathyroid with calcium level) but those don't tell the whole tale. They do NOT test in this country for diebetes correctly.
The HOMA is a much more accurate tool for making sure the pancreas, a gland, is working.
The IGF-1 will tell if the pituitary has been compromised (many HCV people have very low pit. function).
Until the medical community realize these connections there will continue to be people that fall through the cracks not knowing that proper endocrine function is crucial to mental process, metabolism, energy, heartbeat, etc etc. etc.
I have a thread on HGH if you are interested.
BETTY= sorry if I was at alll harsh above, not meaning to be. I think the operative thing is we must be careful, especially medical professionals, not to discourage folks from treating when indeed it may save their lives, allow them to return to work, allow them to not worry about infecting others, etc etc. etc.
It's not that we should not discuss the issues that do come up...but that we need to balance how we word things in order not to discourage others who might succeed, and recover completely...but who are too afraid to treat after reading a horror story.
I also have stove problems etc. and did not SVR. I would suggest you try seeing an endo, getting a sleep study, getting off of any prescriptions that can effect the mind or immune system, and taking a more holistic approach to recovery. Example: Coq10 and many other vitamins and herbs could help you to recover as well.
There is a whole regime recommended for liver patients to do this.
what stage is your LD at? You do realize some of what you describe is common in stage 4 LD right? Even if you SVR at that stage, you may not ever regain full metabolic processes.
feel free to PM me if you want a list of helpful substances.
mb
its not the fact the treatment should be not given to people, the docs need to admit what it can do to you and tell you this up front. i was told there were no long term affects of this tx and also was told that it was out of my system in a week of ending it. well its all a lie cause its been over 2 yrs since i ended my tx and i still am not the same as i was before and may never be again. yes i am svr but was it worth what i go through now, that is something i am not sure about. all i want is for them to admit that this happened and stop denying what it did to me.
I'm sure you are sincere in your beliefs, and it's sad when anyone has long term side effects from any medical course of action. Yet I just have to say this.
were you nursing when surgery was being practice? Did you not see thousands of folks walk around and live after life saving surgeries?
OR do you know that 170,000,000 that's 170 million people worldwide have this disease....yet half of them will treat and cure, and go on to live out a normal life.
So are you saying that 100 million people who will benefit should give up on the idea because a few will suffer long term side effects?
Should the millions of cured cancer patients not have treated because some didn't make it?? Because some didn't do well with the drugs?
Should they have died rather than try?
The way I look at it, it's an individuals choice to treat or not, and there are risks.
Certainly there are risks.
Yet we know what the result will be without treatment...it is a certainty. Left untreated,
absent some other accident or disease getting you first, a hepatitis patient can look forward to dying a long painful death of liver disease AND the memory and energy all go downhill in that painful process as well.
The only way to possibly avert that outcome is to treat.
You did not say whether you SVR'd or not. Might I ask?
What do you think of all the cancer patients treated with interferon who made it?
What about the MS patients who stayed out of wheelchairs for an extra 10 years or more? Should all these people just stop because something bad may happen?
We might as well not drive to work each day then, because bad things happen to a few everyday we do that as well.
mb
were you nursing when surgery was being practice? Did you not see thousands of folks walk around and live after life saving surgeries?
OR do you know that 170,000,000 that's 170 million people worldwide have this disease....yet half of them will treat and cure, and go on to live out a normal life.
So are you saying that 100 million people who will benefit should give up on the idea because a few will suffer long term side effects?
Should the millions of cured cancer patients not have treated because some didn't make it?? Because some didn't do well with the drugs?
Should they have died rather than try?
The way I look at it, it's an individuals choice to treat or not, and there are risks.
Certainly there are risks.
Yet we know what the result will be without treatment...it is a certainty. Left untreated,
absent some other accident or disease getting you first, a hepatitis patient can look forward to dying a long painful death of liver disease AND the memory and energy all go downhill in that painful process as well.
The only way to possibly avert that outcome is to treat.
You did not say whether you SVR'd or not. Might I ask?
What do you think of all the cancer patients treated with interferon who made it?
What about the MS patients who stayed out of wheelchairs for an extra 10 years or more? Should all these people just stop because something bad may happen?
We might as well not drive to work each day then, because bad things happen to a few everyday we do that as well.
mb
so far none of the anti deppressants have worked, cymbalta didnt work i have tried numerous things and they have not helped. so far the only thing that has giving me some form of relief was getting in pain management with morh. sulf. i am in the proccess of trying to get into a neuroligists to see if he can find out anything because something has happened to me and the drugs dont work some help for maybe a month and thats it i am on my 4th sleep aid most of it i can manage but the mental probs i am having are to much
Depression can cause many of the symptoms you have described such as insomnia, suicidal, paranoid, easily frustrated, needy with childlike tendencies, loss of concentration, confusion, daily anxiety attacks. Those problems can usually be manged with antidepressants, counselling or perhaps a type of psychotropic medication.
People with Fibromyalgia can also be prescribed medications like Cymbalta which help with leg pain, insomnia, headaches and other symptoms associated with Fibromyalgia.
There are physicians out there who can treat your physical and psychological problems if you're willing to seek them out and go through the process of trying to eliminate or lessen the problems that are diminishing your quality of life. It may be a lengthy trial and error process but if you're willing to spend the time and some money, you may very well find relief. You had the determination to finish treatment and that took a lot of resolve. You are now cured of hepatitis c so use that same determination to find the best possible solution in getting yourself back on track.
Good luck and I hope things will eventually turn around for you.
Diamond_Lil
People with Fibromyalgia can also be prescribed medications like Cymbalta which help with leg pain, insomnia, headaches and other symptoms associated with Fibromyalgia.
There are physicians out there who can treat your physical and psychological problems if you're willing to seek them out and go through the process of trying to eliminate or lessen the problems that are diminishing your quality of life. It may be a lengthy trial and error process but if you're willing to spend the time and some money, you may very well find relief. You had the determination to finish treatment and that took a lot of resolve. You are now cured of hepatitis c so use that same determination to find the best possible solution in getting yourself back on track.
Good luck and I hope things will eventually turn around for you.
Diamond_Lil
i am 2 yrs removed from tx and i am still hep c free. i do have lots of post tx issues simular to what debnevda has just not as worse. i have been reading this post as i have others looking for answers to my problems. i geuss looking for others like me, people who were above average before going through the tx but now can barely hang on day to day. before tx i was healthy no problems what so ever mine was discovered in a reagular physical by a new dc i started seeing. since the tx i have actually gone crazy for awhile did come back somewhat have a hard time seeing now, cant concentrate, have short and long term memory loss, personality changes every couple of months, anger issues easily frustrated have been dia. with fibromyalga, had heart problems, severe leg cramps, insomnia, depression, migrane headaches, nausia, cordination problems fatigue, i am now suicidal, parinoid, needy with childlike tendicies, chronic pain, anxiety attacks daily, i got lost on a regular basis, forget what i,m doing, have comprehension problems, on the verge of losing my job of 23 yrs., have almost totally ruined my relationship with my fiancee, 3 months after moving in together i found out i had hep c. before tx i was perfectly healthy none of these issues, i had an IQ in the high 130s, 6'-2'' tall 210 strong, confident, easy going, physically fit 45 yr old man. now 3 yrs later here i am a shell of myself and wondering if it was all worth it now. to be honest i dont think it was. i was never warned of any of these possible problems even asked about long term issues and was told there was none just that it was an 80/20 chance of being cured. when i went back 6 months after tx was told there was no way that it had done this to me and that the drugs were gone from my system a week after i stoped and did do a 46 wk program. now as to people posting on these things and never coming back and reposting, there are 2 possible reasons for that 1 they forget where they were, the other is that just like me are looking for answers and you get frustrated by being told its not the drugs that did this to you when you know it is the only answer to your problems. so if i dont find my way back here or i forget about coming here you can contact me at guy_humphreys2001***@**** with any information you might have on anything that might help improvre my situation. any and all help will be appreciated
Thanks so much deb.
Sounds like the Mayo has really come thru for you (and maybe us).
Wonder if your docs would talk to my docs?
but what a breakthru to hear this from such a well established "real" group, lol.
thanks for posting and best of luck with your symptomatic treatments. I am pretty much in the same boat.
Sounds like the Mayo has really come thru for you (and maybe us).
Wonder if your docs would talk to my docs?
but what a breakthru to hear this from such a well established "real" group, lol.
thanks for posting and best of luck with your symptomatic treatments. I am pretty much in the same boat.
I have had a ton of post tx problems, joint issues, gastric issues, kidney issues. After doing every test known to man, mayo has diagnosed me with "post interferon syndrome". There are abnormalities on blood work, EGD's, etc., and also a renal artery problem, but they put it into the "bucket" of PIS (haha...how appropriate). One of the docs there stated..."It is well documented, but hard to "prove"."
What they do is treat symptomatically. I take an AD, omeprazole (acid reducer to deal with the ulcerations), pain med, urso, vitamin D, calcium, vitamin e, some other stuff.
Mayo also has an opinion about occult Hep C vs. circulating, reproducing virions. In other words, is it "really" gone? The good news is that mine doesn't reproduce. I have had LFTs in the single digits at times.
I am still on the fence about whether i should have treated or not. Because of my acute status, I felt it was the best chance. however.....
What they do is treat symptomatically. I take an AD, omeprazole (acid reducer to deal with the ulcerations), pain med, urso, vitamin D, calcium, vitamin e, some other stuff.
Mayo also has an opinion about occult Hep C vs. circulating, reproducing virions. In other words, is it "really" gone? The good news is that mine doesn't reproduce. I have had LFTs in the single digits at times.
I am still on the fence about whether i should have treated or not. Because of my acute status, I felt it was the best chance. however.....
Oh, now I can read it properly... it is funny how I read that over and over again making sure I was NOT reading it wrong but still...
I did go back and check on some of those who are just posting once and it is really weird. But this C and also the treatment can do funny things to your brain.
Even me, being the most optimistic person ever, had suicidal tendencies on my second month. That was really weird.
Glad we got that straightened out.
I did go back and check on some of those who are just posting once and it is really weird. But this C and also the treatment can do funny things to your brain.
Even me, being the most optimistic person ever, had suicidal tendencies on my second month. That was really weird.
Glad we got that straightened out.
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Herpes sores blister, then burst, scab and heal.
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Condoms are the most effective way to prevent HIV and STDs.
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