"again Trish .congratulations on your SVR. :)"
Thanks Will. Especially considering the circumstances, I've never been anything other than extremely grateful.
DD: From all the cases I saw of drug companies that were required to acknowledge new information about the effects of their drugs, it came from doctors and patients reporting. So expecting studies on this might be barking up the wrong tree. I got to wondering what they do with cancer treatment and found some indication that they are much more open about the potential long-term effects and many are similar. I found this site where they promote an after-care program and have forms that patients fill out to log their side effects and health issues during and after treatment. It would be interesting and perhaps valuable if hepatologists / GI's did the same and then correlated their information. That would perhaps be more accurate and compelling as a doctor would be recording existing health issues the patient had prior to treatment (as per comment from Desrt), what meds they were on already, age, gender, length of treatment(s), etc.
Links for your interest - American Society of Clinical Oncology.
Sub-link on that page:
There's a short video presentation on that page from that doc. There are also downloadable forms for anyone to take into their doc. It's interesting that she mentions the common scenario that of treatment ending and the patient being out the door and instead recommends an after-care process.
Just some food for thought on an alternate approach to all this. It would lend itself to more legitimacy perhaps as a compendium of data from treating hepatologists / GI's. The logistics remain to be seen. :)
" Well fnzol..if that wild *** assertion you are referring to is the fact pharmas interest is profit and that they won"t be doing any studies on this problem any time soon,,unfortunately ...... yes that is certainly the assertion from here."
You're literate and perceptive enough to know that that was not what I said, and you've changed my context to make your own claim or complaint.
No, there won't be any post-market surveillance studies done on after treatment effects, not for drugs this old and for drugs that have proved beyond doubt that they are safe and effective for their intended use. Note that that does not mean side effects free. For example, one of the known side effects of ribavirin is death, from myocardial infarction due to reduced red cell function.
Compare that to some of the complaints posted on the internet about post treatment. Tired all the time. My joints ache. Can't think straight. etc. And those are rather mild and perhaps not unexpected. But some of the stuff brought in here is simply over the top. As Trish said, that makes it difficult have a reasonable discussion about the subject.
Internet anecdotes are not data. And the data you seek are not likely to be forthcoming. Unfortunately, the state of affairs regarding post treatment for HCV is like a lot of things in life, full of unknowns and uncertainties. One can attribute causation until one is blue in the face. But the fact remains, the only honest position, all things considered, is to deal with not knowing for sure. Perhaps there is comfort to be taken in the knowledge that one is no longer infected with HCV, for many thousands, anyway.
Fnzol...it was not my intent to change the context of what you said ..rather just a misinterpretation on my part of what you had said. I realised that after I sent.
I'm always interested in this subject. It is not well understood, well documented, is woefully clinically understudied and *perhaps* a larger problem than is reported.
One of the earlier larger threads of this topic was at Hepatitisneighborhood, but due to a bit of "housekeeping" the thread....and a whole forum was deleted. There are numerous threads with the same topic in this forum. The Nomads is interested in the topic and I believe that the topic must surely exist in any HCV bulletin board in existence.
Those people who have treated and who now suffer long term side effects ARE numerous. Many people treat and recover to better than ever health. Some folks have some sides, and a few...... a percentage unknown have serious post TX sides. Some of them after very few doses, some of them after having treated once with no sides only to find that after retreating they were not spared on their second or third attempt.
The companies that make the drugs themselves warn about many side effects. They are documented and proven. I write about an earlier post which in part read;
".....for drugs that have proved beyond doubt that they are safe and effective for their intended use. "
I guess that I disagree. There are FDA black box warnings about many sides which are well documented. If the drugs were indeed "safe" there would be no need for those mandated black box warnings. Had there been any other alternative to the therapy, it may not have even been approved. It was the only thing available. For geno 1's it was a long long treatment, at best perhaps a 50% cure and failure rate.
I wasn't exactly sure why a new thread was started, but I felt that it may have been to get a sort of roll call of all who had treated and to report either their success or to report the even few minor ailments or to list the larger issues that my remain.
For me that is about gather data, albeit anecdotal information. I feel that the intent is to gather info or data. I contrast that with the cry to NOT gather information. I feel that the subject is being dismissed.
The data is anecdotal.
the treatment is proven "safe"
That the lingering sides may just be ordinary "growing old" complaints or re-existing, the effects of HCV, genetic, imagined, made by malingerers.....etc.
I'm not attributing this to any one person, but rather to the generic replies that one hears over the years. One also hears doctors shock that people may have long term POST TX sides.
It is a miracle that people who read bulletin boards have been aware of these for years, that people are granted disability benefits for the same and that doctors....and more than just a handful are almost blissfully unaware of these sides. There are other....better informed doctors who are advising patients to wait for better, shorter treatments.
The reason to not dismiss such threads are many;
For people with those long term sides, they need to know that they are not insane, not imagining these symptoms, in spite of the fact that they may look OK, be *"cured"* (!!!), may have reasonable labs and no diagnosis for their complaints.
For people who have such existing symptoms it may be that if any doctor could diagnose and attribute a diagnosis it might be a start.
If one affected were to find a cause or partial cure for the said ailment, then such threads might provide the data helping suggest an area of inquiry. It might provide some rebuttal and proof that such ailments do exist post TX. They may provide a listening post and means for tracking any such developments; whether time may improve the issues, worsen them or whether supplements or other therapies my offer some/any relief.
-----If one believes that medical science is NOT going to address this issue, then where is an appropriate forum for the reporting or inquiry? I'd suggest that one such place is this forum.
For those who have not yet treated.......
such threads may provide some food for thought before treating. It seems to me that there are some people who were pushed....prompted into treatment, in spite of having minimal damage; ie, they could have probably safely waited to TX.
Sorry to drone on..... I have done it before in other threads of the same topic but felt motivated to offer a little dissenting opinion.
I would be better comforted if the medical community were to attempt to address the issue with an inquiry into these post TX complaints.
I would be grateful if doctors were made aware of these issues and in turn made them aware to the patients. I don't believe that history shows this likely to occur, therefore we must arm ourselves with the information. I myself support the use of the board to discuss any such issues. That is one on the purposes of a bulletin board IMHO.
" There are FDA black box warnings about many sides which are well documented. If the drugs were indeed "safe" there would be no need for those mandated black box warnings. Had there been any other alternative to the therapy, it may not have even been approved. It was the only thing available. For geno 1's it was a long long treatment, at best perhaps a 50% cure and failure rate."
The legal definition (in the US) of an approved drug is that it is safe and effective for its intended use. The SOC drugs meet those criteria. Warnings and informed consents for use are part of the approved labeling for the drugs. As I stated above, S&E does not mean nor imply lack of side effects. Whether the drugs are appropriate for a particular patient is part of the calculus of consideration that a prescribing physician has to make on an individual basis.
You may consider the universe of complaints about side effects post-treatment as grounds for deciding that the drugs are not safe, but that would be something different from the review of study data, advisory committees' meetings, and other considerations that went into the approval processes those years ago. "Safe and effective" is legal status under US Federal Law.
Look up the definition of "drug" in the US Food, Drug, and Cosmetic Act, Section 201g.
Well stated, and I agree completely with your thoughts. This is a subject that we should NOT sweep under the rug, even if a few poeple on forums try to discourage the discussion, or poo-poo the complaints of those so affected with serious sides. Its like saying to people who took a new blood pressure medication, and a few years down the road a percentage of them started dying , out of the, blue from stroke, or similar event...and telling them not to discuss the impact of their medication on the disproportionate number of deaths, etc. That we all should be quiet and satisfied that the drug accomplished its intended purpose (even if it did kill a bunch of people in enexpected fashion), and just accept that unanticipated side effects might be part of the deal! I think not!!!
This anecdotal information sharing process is exactly how people are able to initially discover that a drug may have much different after-effects than advertised, or may have caused serious damage unlike what was claimed to be the standard experience by the drug makers, and/ or doctors. We are sharing information, and gathering anecdotal experiences by the people that really matter...those who treated and were adversely impacted. I think you make great sense Willy in your explanation of why these threads are important. Even if one or two "over the top" nut cases either exaggerate, or dream up issues, by and large, over time the true side effect experience will become clear through NUMBERS of people commenting and having the same or similar experiences.
For someone on the forum to unilaterally invalidate other peoples actual experiences, and to discount the problems presented...to me holds very, very little weight...and should be ignored. This is a great place (where else would we have an outlet) to surface and discuss, and compile these serious medical after effects. MAYBE this will somehow lead to better doctor awareness, more medical community studies, and even eventually attempts to treat and eliminate the side effects! Now is that an unworthy goal, I would ask all the 'objectors'??? I can't imagine why.
Thanks again Willy for the detailed commentary.
With due respect to the term and definition "safe".
Yes, most of the people who post about long term side effects were not killed. They survived their treatment and many have normal type labs; unremarkable. The drug combinations were deemed safer than not treating. (there was no other treatment available.) I believe that since most hepatologists would advise waiting for newer drugs their input is that it is safer to wait than to treat.
I believe you yourself are aware of this since you wrote that the new combos will be subject to tougher scrutiny. Of course, why would there need to be *tougher scrutiny* for something that is already safe and effective? : )
"Safe" is a relative term. "Cure" is another such word.
With respect to the word cure; many of them are in far worse health than before they treated and doctors seem to be at a loss as to why that may be. This and other threads like it have the intention of gathering information about the troubling result.
You appear to protest over the gathering of this information, attempt to discredit or dismiss the results people have had saying that it is not data, is anecdotal and without meaning or value. Is it possible that for a certain percentage of people who treat, the current SOC combination is not "safe" and may cause numerous variety of issues which medical science seems currently unable to diagnose or cure and that seem (for some) to be permanent?
Tell the people who have been negatively impacted that the drugs are safe and effective.
Plenty of respected well respected hepatologists are advising HCV patients to wait to treat. Perhaps they are unaware that the drugs are "safe and effective". : )
Without regard to that....this thread was intended for gathering information on people's post TX side effects (if I understood the intent).
It is a separate issue.
"Plenty of respected well respected hepatologists are advising HCV patients to wait to treat."
Because the newer drugs are proving to be more efficacious.
"why would there need to be *tougher scrutiny* for something that is already safe and effective? : )"
Smiley face? Really? There are new rules for post-marketing surveillance that were not in effect at the time that the current generation of drugs were approved. There will be Phase IV Bioresearch Monitoring inspections done based on those rules. One possibility is that those inspections will determine that the drug(s) are NOT safe and effective. Remember that trials are conducted on relatively small populations. Once a drug or device is approved, the entire user population becomes the trial. Much, much more can potentially be learned. That's why some products get pulled.
"You appear to protest over the gathering of this information, attempt to discredit or dismiss the results people have had saying that it is not data, is anecdotal and without meaning or value."
Not so, and I think you know that. It is anecdotal. It's meaning or value is subject to interpretation. Some of the posts about post-treatment "experience" here don't even get replies. At the other extreme is someone like Trish, who lamented the difficulty in having a cogent discussion about it at all.
I've got no agenda other than intellectual honesty about this or any discussion. What can be validated? What's reasonable? What I do have a problem with is jumping to unsupported conclusions, and attributing motives, which can never be examined.
"For someone on the forum to unilaterally invalidate other peoples actual experiences, and to discount the problems presented...to me holds very, very little weight...and should be ignored."
Way to entirely miss my point. I'll take responsibility for not making it very well, however. Nevertheless, ignore me. In other words, unilaterally invalidate my comments, since you apparently have examined my motive and found it wanting. Hence why I stated previously that I came in here with some reluctance. It would appear that not all contributions are welcome in the thread.
Carry on. Regards to all.
Unfortunately most drugs have side effects...some serious and long lasting. Interferon is known to be one of the drugs right at the top of that list. Whether Pharma or the doctors talk about it or not ..they all know .Will they run more studies to do anything ...no.. ..are they running many studies to make it a thing of the past...thankfully yes. Hopfully until then , the harm people are experiencing is outweighed by the benefit .
In the meantime we can discuss and list our problems .. but in the end the docs are only going to listen to those affected and ......prescribe more drugs.
,,, never understood the point of these threads. You start with an endogenous protein evolutionarily tuned to provoke a massive anti-viral defensive response in the host, at significant cost to the host organism. You purify it, splice an add-on to make sure it evades natural degradation and stays in circulation longer. You then inject massive dosage of the stuff, at a system-wide level as opposed to the local level typical of its endogenous use. You keep doing this for insanely long periods of time - years in some cases.
After the dust settles we're surprised the body's natural balance and functioning has been degraded? Uh?
It should be blatantly obvious to any informed patient by now that you do not want to take one more drop of ifn than necessary to stave off a worse fate. Beyond that one can hope for minimal collateral damage and, after the game is over, deal as well as possible with the consequences.
The interferon response is hugely complex. That we'll ever find an "explanation" for the damage tx can leave behind seems naive: our bodies were simply not designed to absorb it in such dose and duration.
Well now, putting it THAT way, makes my day!!!
How are you doing Willing? I agree, it is not surprising to me at all that many of us are just wrecked by the stuff. It really does provoke massive changes to our system at just about all levels, and I guess for some of us, maybe many of us, those changes just keep on charging along...long after we stop the drug. Its like someone doing LSD for a year daily, and then people acting surprised that the after effects seem to be extreme and long lasting. This drug is not user friendly (you just have to read the insert to realize what a 'nuclear bomb' it can be), and we use it for lengths of time that make it feel like we are trying to self destruct...often to the point of semi-psychosis, depression, autoimmunity, etc.
But for me, Willing, the real POINT of these threads is validating what is going on for some of those who have been 'bushwhacked' by the tx, and who had no idea it could produce such toxic, permanent after effects. It may be helpful to some who think they are losing their mind...after being "cured" only to find that they now have a hard time even functioning anymore. At least they can see what is causing the massive problems, and have a forum to discuss them with each other.
MAYBE even down the road, there may be some methods of better dealing with, minimizing, or treating these 'fallout' type medical problems. Its almost like being 'nuked' for some of us...like radiation that completely rewires the nervous system.
Good description though in your post Willing. Glad to see you are still hanging around behind the window on the corner, checking out the comments. I tend to come and go here, in waves. When things flare up and get worse, I seem to find myself jumping in more frequently, and putting my two cents into the appropriate threads. Hey, at least the stuff didn't KILL me!!!! I guess doing 35 months, at high doses, comes with a price tag.......but hey, I am SVR. And that, along with my quarter gets me a beer...(or my three bucks)
Best to you Willing.
"but hey, I am SVR. ." nice...congrats on that
It's evident by pharma's race to develop less toxic and shorter treatment that they are well aware of the issues with the current tx. Of course their motives to find an interferon free tx are financially driven. I suppose that in some strange way we are lucky to have a disease that is not so obscure that the incentive to find a cure is almost non-existent and hope is hard to find, at least we have the luxury of something to debate.
In my opinion that financial incentive is far beyond being the first to have a PI approved. Many of those people who had to stop tx because of adverse events, or couldn't start because their platelets were too low, or didn't want to start because of interferon's reputation, or have psychological issues that could or were exacerbated may jump in if tx was less toxic.
Hopefully people who do not have an immediate need to treat will seriously weigh the pro and cons before jumping in. New treatment is no longer a pipe dream and threads like this are invaluable if they help people to make informed decisions.
Thanks. Good solid, helpful comment, and I appreciate your particular slant on things. I agree, it is a great time for new treatment protocols, and should really help cut down on the wreakage from long interferon regimens. Eventually, way down the road, getting Interferon out of the mix altogether, will be a real victory...and will help to end the need for threads like this!!! I wish these drugs could have come about 15 years earlier! But, you can't look back I guess.
The Idea that there is such a thing as pure, objective uninterpreted science that has no anecdotal basis seems as ridiculous to me as believing that anecdotal information is valueless. Many people were diagnosed to begin with because of anecdotal information that they provided to their doctors.
I find it disturbing hat people will make decisions about treatment purely on what other's experience is. I also find it disturbing that people will unquestionably believe something just because our regulatory agencies say it is so.
The only answer I have found for myself is to research all this collective information as best I can, make a decision, and take responsibility for my decision. Sometimes the choice amounts to which of the evils is less harmful.
Bravo, Dave. :)
The long-term side-effects of treatment (as well as the side-effects of long term treatment) are thoughts that run around in my head a lot, sure.
I've watched my husband endure 128 weeks of interferon, and though it's obvious to both of us he's not the same physically, we can only figure things from an *anecdotal* standpoint -- how objective can we be without a *control* situation, after all? Yes, he has fatigue and joint pain; yes, there is obvious cognitive and memory loss; yes, there is hearing loss and there is vision impairment, and more; but can I conclusively blame this deterioration on Interferon? It would surely be easy to point a finger at medication as the cause, but how can I be sure it's the treatment? and not aging? or his cirrhosis?
Even if we were to conclusively decide that all this was the result of treatment, in the end, it would be an exercise in rhetoric only (or perhaps discussions about symptom alleviation) -- for us, anyway -- because the long-term side effect we're most concerned about is SVR. Though I realize this may not be the viewpoint or the circumstances for others, as there are many who have minimal damage and have time to weigh their options, my husband has chosen to take his chances with whatever long-term side effects may come with current treatment in hopes of staving off the long-term side effect of ESLD.
Back to the original subject.
Like some, I believe it is difficult for one to differentiate between what issues are a result of the tx drugs(either immediate or triggering of existing undelying probalems), aging, heredity, life style, work etc.)
(my thinging leans more towards drug inducement of underlying issues)
That said, about 2 years after tx completion, I developed a reddening of the skin on my neck(looks sunburnt). After going to one dermatolgist, and getting an "I don't know", I self diagnosed it as poikiloderma of civatte- later confirmed by a second dermatologist. (his reasoning was a lifetime of sun damage)
My orginal train of thought in simple terms was:
Interferon or ribavirin----drug induced---lupus erthematosus--and finally poikoderma. But the break in the chain, no lupus.....
So imo, inconclusive evidence to make a determination of "cause" to the effect.
1 1/2 years after tx, I had both hips resurfaced/replaced, have since been diagnosed with spinal stenosis, left shoulder rotar cup and right elbow "golfers elbow" (vbg)....I test RA negative, history of arthritis/joint replacement, in my family.
Inconclusive as to whether or not tx has had an effect on underlying probloms or not....I do now test of the scale for metals, specifically cobalt and chromium (wearing or bedding in the of the hips)
Could these high levels of metal have contributed to the surfacing of poikiloderma , as in Metal induction,,,who knows..
(and I haven't seen any follow up research on from the joint manufactureers following up on high levels of metal)
Point being, everyone is an individual, different doses of the drugs, different time length exposure to the drugs................far to many indivdual varibles to do an apples to apples comparison ,imo.
PS: I do however, attribute my poor spelling and sentence structure to the tx drugs
LOL!...(still have my sense of humor intact)
"The only answer I have found for myself is to research all this collective information as best I can, make a decision, and take responsibility for my decision. Sometimes the choice amounts to which of the evils is less harmful. "
As usual...well said Dave...and I know when you come out of this with the desired result ,you will be one to realize the price paid(hopfully minimal.... will have been well worth it)
It will be interesting to see what people are saying about the new drugs fifteen years from now. It may come to pass that Interferon was only collateral in the damage factor and long term side effects.
This type of conversation will always exist with any long term drug therapy.
"It will be interesting to see what people are saying about the new drugs fifteen years from now. It may come to pass that Interferon was only collateral in the damage factor and long term side effects.
This type of conversation will always exist with any long term drug therapy."
To some extent I believe this is true. On the other hand as they refine the DAAs for HCV the target will be more specific and the side effects will be reduced. I believe this is the case with long term use of the HIV drugs, although I am not sure.
As Willing put so well in his earlier post:
"You start with an endogenous protein evolutionarily tuned to provoke a massive anti-viral defensive response in the host, at significant cost to the host organism. You purify it, splice an add-on to make sure it evades natural degradation and stays in circulation longer. You then inject massive dosage of the stuff, at a system-wide level as opposed to the local level typical of its endogenous use. You keep doing this for insanely long periods of time - years in some cases."
Messing with the balance of our highly developed and complicated immune system is a bit different then specifically targeting a molecule like HCV
We lament the extremes people go to when complaining about the perceived results of interferon and their lack of rationality that threatens valid information from being taken seriously. To me, the other extreme that is lamentable is to not talk about it at all as if that's some kind of virtue that demonstrates the degree to which one appreciates the gift of SVR. There always seem to be some who resort to that extreme in these discussions. If you have ever asked or drawn upon the experiences of others, whether in clinical studies or anecdotal evidence from a group of persons, to help you make your own decision on when, or if, to do treatment or continue treatment, or to manage your health post treatment, you are biting the hand that feeds you to take such a position.
Despite the fact that our health conditions are so individual that it's difficult to determine causal effects, it's clear that when you compile enough data from enough patients and treating physicians, they are able to sift through the variables and come up with conclusions that have resulted in formal updates to information on drugs that are already on the market. We can thank reports from patients and treating doctors for new information that comes to light about approved drugs on the market that helps us and our doctors make good decisions for us as individuals. What is good for one is not good for another and this is all based on what we know about our own individual health situation and what we know of the drugs we are taking. We now talk about insulin resistance for example as something to consider when embarking upon treatment. The more we know, the more effectively we can strategize towards achieving that successful outcome we all want for ourselves and for others.
Hopefully people keep talking about the effects of these or ANY drugs they are taking. Hopefully they report them to their physicians. Hopefully those physicians who see a trend amongst their patients report them to the drug-regulating bodies who can then see that the public is properly informed.
While it's true that we know enough about interferon to know that post treatment leftovers can be like a box of chocolates, and while it's true that many of us would choose to go forward even knowing what the risks are, it's still of extreme benefit to KNOW what those risks are WHEN possible and to manage treatment accordingly. Much of the monitoring over the course of treatment that occurs is because of what is known about the potential side effects of these drugs and some damage can be minimized or avoided because that monitoring takes place and issues can be more quickly responded to and addressed as a result. That occurs when information is shared.
There does not seem to be an effort to collectively gather data on the long-term side effects of interferon. I would see that as a useful exercise that has nothing to do with valuing my SVR. I would see that as contributing to the knowledge available to people to take into consideration when they and their doctors are trying to make good decisions for themselves based on what is known and in combination with their existing health issues.
It's an odd situation to me that we're quick to offer information on all we know while someone is considering treatment, while someone is going through treatment, whether clinical or anecdotal and yet when someone is finished treatment, we stop the dialogue as if that's somehow denigrating your SVR to talk about that.
I frankly found it more tolerable to know that a number of others experienced depression post-treatment as I did. I was grateful for their courage in speaking up. I felt less alone and I felt that "this too shall pass" and I hung in there and weathered it and it did indeed pass. I was then able to turn around and offer support to others who didn't think they should be experiencing this post-treatment. I'm also grateful for the folks who have shared that they also have joint pain post treatment where before there was none. It didn't or doesn't make me value my SVR any less. It actually helps me tolerate my joint pain more as I hobble down the stairs, being fully aware of what the alternative would be and I accept this as part of the price to pay for my SVR and all that means. So, in turn, when someone asks "has anyone experienced this?" - I like to give back to help others manage the challenges that come with treatment the way I've been helped.
I lament the extremes on both sides of this - to blame everything but the kitchen sink on interferon or to consider it a virtue to put up and shut up - and think both do a disservice to being able to have the knowledge to manage the whole journey of treatment including post with these drugs until something better comes along.
Holy ***@**** was long. I truly apologize. Didn't edit before sending at all.
".. as they refine the DAAs for HCV the target will be more specific and the side effects will be reduced."
That's an interesting assumption.
Thanks for providing the link. It really seems contrary to what I would have expected. At the same time I would never believe that just because a drug had fda approval that it was safe.
First off, thanks Trish for your commentary. To me it is right on the nose. I appreciate your detailed explanation of why this discussion makes absolutely great sense, and in no way denigrates the SVR, or someone's attempts to achieve it. I have said many times, I would treat again to get the SVR...and I am glad that I achieved my goal. But the full story is absolutely important to all involved in undertaking tx. And solutions are due to us as well!!!
Desrt: Thank you, Thank you, for the link you included above!!! (here it is again for those that did not open and read it:
This article illustrates EXACTLY how Interferon, and the HCV tx is really a work in progress, and that many, many more long term issues may surface as time goes on, and that all the real side and after effects are NEVER fully known until enough people provide lots of feedback, and enough time has passed. Its a lesson to all who believe that Interferon has been fully 'vetted', and we know all about the long term effects. NOT SO!!! Not even close. Even many doctors will say this as well. They know how powerful this drug really is.
And a final comment to all: If we don't start providing large scale feedback on the serious problems we are left with after interferon, then we will NEVER even have a chance to find any medical treatment, or intervention that might help.., no matter how much a longshot it may be, we might as well just 'slink' off into the sunset licking our wounds saying 'oh well, what can you do', something is really going wrong, but I am not supposed to ask questions or make comments about THAT issue. Just keep thanking our lucky stars we are SVR... Might make somebody, somewhere believe we are opposed to the SVR!!! Oh my......
Well I am just NOT joining that camp.
After 4 treatment failures, I can say my looks have changed. I have darkness under my eyes and my face is thinner. Lately, shoulders, hands knees and elbows joints have been painful. Gastro believes it's Hep C related and will do blood work soon. As for mental problems solving or communicating with others, I see no difference after treatments. As for energy, it has dropped but I still have enough to do what I want. Exercising is more difficult now than before treating. All in all, these are the current treatments available. The choice is to treat or not right now or wait for less destructive drugs. Are you a gambler?
I would never believe that just because a drug had fda approval that it was safe.
In order to be approved, it must be shown to be safe and effective for its intended use based on the pre-market studies submitted to the agency for their review.
Those studies, however, are performed on populations much smaller than those who will be exposed to the drug (or device) once marketed. The general public, then, becomes the actual proving population, given the wider variety of genetics, habits, behaviors, prescribing approaches and behaviors of physicians, etc.
Side effects and user issues that come to light in this larger population can lead to revisions to labeling (new or revised warnings), dosages, and may even cause the product to be recalled and removed from market. It's an imperfect process, but works fairly well overall. We only ever hear about the high profile cases, while thousands and thousands of products remain in use on and on.
A case in point may have been a drug my own father used; Vioxx.
After having been on the drug, one day he stood up from lunch and immediately died. It wasn't until several years later that the drug was to have been found to be unsafe, that a recall was ordered and FDA approval removed. (In this case Merck covered up the data that may have saved several thousands of lives)
RE: our own TX.........I am looking forward to better days ahead. I remain hopeful that if enough people make known the number and types of complaints that current SOC *may* have caused or contributed to some rough type of data base will emerge. If there are sufficient numbers who report damage it may point towards a need and perhaps the needed academic or profit motive for some action.
Failing that..... it may simply establish that indeed SOC in various permutations (monotherapy, pegalated, w/ and wo riba, etc) may induce certain maladies. For people who suffer such lasting side effects such threads may provide some sort of "proof" that such various types of disabilities may exist and may allow a speedier or easier path towards getting various medical or disability assistance from our government.
I believe that a long term followup patient questionnaire may be suitable for this treatment so that it is better understood by the government arms that approve drugs (FDA) or by the arms which administer medicare and disability.
OK, I read this whole thread, and nobody mentioned how we can REPORT our post tx sides. Who do we report it to? FDA? Does anybody know the answer to that? What about the doctors believing that we should be dumped the day after we finish tx? We can argue all we want with each other on this forum, but that won't get their attention. How do we go about getting their attention?
Does anybody know the answers to these questions? If we all sent reports in, THAT may get some attention.
As for blaming SOC for post tx issues... when a person has one personality for 55 years, and after 1 year of SOC they have a completely different personality... going from an extrovert to an introvert... I think that is pretty good evidence that SOC is the culprit.
Just my thoughts..
I was off TX for 1 1/2 years and now I am starting another round. During that time, I had my knees checked and was diagnosed with cacification in my knees, which makes sense because I had been so inactive AND was taking Boniva for bone loss. So I did physical therapy, then began yoga classes and took glucosamine. It worked really well for me.
New to the site. I have been a member of another Hep C on line forum for quite a while but talking about long term side effects is kind of taboo there. I get it, we need to encourage people to treat, stay on treatment and beat this nasty disease. I met Willy at a retreat and he told me to check out your site so here I am.
I had acute Hep C in May of 2010, geno 1a, was very sick (liver enzymes were over 1000 both AST and ALT) Doc pushed for me to do treatment, started in June, finished in November of 2010 and am SVR and YES,,,, very grateful to be able to say that!!!!!
Down side is my body has acted like it never went off treatment, typical stuff everyone else has mentioned, joint pain, muscle pain, muscle weakness, fainting/collapsing, vitamin deficiencies, bone pain, headaches, migraines and extreme fatigue. I too saw my gastroenterologist 6 months post treatment to be told my persistent symptoms could not be related to treatment. So my primary sent me to one specialist after another with no answers. I just got back from the Mayo Clinic. The hepatologist said yes we see long term side effects and sent me to their rheumatologist. He said the best diagnosis he could give me and treat for is interferon induced fibromyalgia. I just received my letters from both doctors for my medical records and both doctors state that although the eitiology of my symptoms may be unknown they cause may be due to treatment with interferon/ribavirin. So I feel a bit more validated...finally... but a bit confused...
I have read all the posts and wow there was a lot of them here on the long term side effects and some mentioned signing a consent form. How many of you guys actually signed a consent form? How many of your doctors discussed the possibility of long term effects? I do not feel as a patient I should have to go on line to find out about this later, my doctor has an ethical obligation to provide me all the information for me to be able to provide an informed consent. She basically said I had no option, I needed to treat, most patients work (90%) through treatment and if you have side effects you are usually back to normal within a couple months. I was given a side effects sheet from them, which really down played them and was sent my meds, that was it. I did not learn till I was in to it and got on line. Before my child is given a vaccine my primary gives me a sheet a reviews all the benefits and risks even if the risks are only 1% of the population and I have to sign a consent form. I am confused as to why this did not happen. I downloaded a consent form from the gastroenterology group in Northern California and it states in bold letters for their patients some sidef effects are irreversible, are they the exception to the rule, or did someone file a lawsuit and they decided to cover their butts from now on?
I am grateful to be SVR, grateful every day, but considering I was acute, and did not have any liver damage and interferon free trials were on the horizon I may have waited, got myself through the acute phase. I don't know. But at least if I still pursued treatment I would have been prepared, maybe put some money aside, paid off some bills while I was working as I am on disability and unable to work now. Hindsight is always 20/20.
I would never discourage someone from treating, I would never want to die from Hep C or wish that on anyone. I just do not understand the lack of information, informed consent is part of law and as a medical professional myself I believe in first do no harm and my doctor did not fulfill her ethical responsibility.
Phew.... got that off my chest !!! Thanks!!! And yes, I am thinking of pursuing legal action, it may go absolutely nowhere but maybe someone will take my case and my doctor will at the very least get rattled enough to inform the next patient so that patient can make the best decision for his or her individual situation. Seriously, if someone can sue McDonalds for hot coffee that burns them and win... well one can try....
I believe this thread was started for the purpose of sharing information and questions having to do with long term side effects that some individuals have encountered post treatment. Perhaps you should start a thread for those who have not had any post tx long-term side effects rather than posting here where your point is questionable.
It is difficult to get tested on magnesium since the plasma levels are usually very stable.
There was however one value in my case that was always way below the reference range. It was alkaline phosphatase, but since it often happens together with hypothyroidism I thought that it is due to that and to be honest I didn't know that there is a connection between magnesium deficiency and low alkaline phosphatase.
I went back to my blood tests of alpha-Interferone plus Ribavirin therapy and I can literally see how the alkaline phosphatase was decreasing with each month... it still is very low in my case.
Just google "alkaline phosphatase magnesium deficiency"
If you have your blood tests, maybe you got tested on this as well. It could be an hint on the direction to look at.
none of the talk helps if no one in the medical field can help with the problem! What people want is to feel whole again and talking does nothing
this is a really old thread
It may be a really old thread but it's still relevant, especially to people who have attained SVR but still don't feel well. I did 2 rounds of tx with interferon/riba. Now 3rd round with DAAs just finished.
I just noticed Frieda1979's post. I've been testing for hypothyroid and was shocked when my values to B12, folate and ferritin have all come back very low. My ALP is also low, under the normal range. I am suspecting more widespread deficiency, including low magnesium and low zinc, which as Frieda says is connected to low ALP.
Lately, the following has been recognized:
"Malnutrition is a well-known complication of
advanced liver disease and is associated with
severe consequences if left untreated. It is critically
important to thoroughly assess the nutritional
status of all patients with chronic liver disease and
to provide nutritional support in these patients."
I don't have 'advanced' liver disease but I think ALL liver disease people would benefit. I would certainly have liked to find out about my nutritional deficits years ago. I am hoping now that if I can correct them then my thyroid will start working normally again. The advice I want to give to everybody with hepC is to get their nutritional levels tested and maintained. You don't need to have cirrhosis to get malnutrition when you have hepC.
I also think it is relevant, since a) there are still plenty of people suffering and b) this is the only place where I could find experience of people suffering after Hep C treatment. And this immensely helped me to understand what might have happened to me and how maybe I could help myself.
I wrote a lot more in another thread. I hope it might help somebody. It took me years of my life to do all the research. I don't know if I understand enough, but at least with respect to the thyroid issue I found the support forums and the exchange of knowledge very valuable.
I got now diagnosed with severe pancreatic insufficiency. Malnutrition part 2 there you go. Exocrine pancreatic function is as far as I know now at least dependent on correct thyroid function and on appropriate amounts of Zinc and calcium.
I was neglecting Zinc and Calcium entirely most of the time, since it is so hard to fill up iron, magnesium, Vitamin C, B Vitamins, Vitamin D, A, think about proteins, Omega3 and so on...
Next week I plan to get my own lab tests on Zinc and Alkaline Phosphatase and then again in few months after supplementing Zinc and Calcium I will test Zinc ALP again to see whether I can observe some correlation between the two.
@dointime also think about Vitamin D. If your too low in Vitamin D the body cannot really absorb magnesium. And also, if you supplement Vitamin D you should always also supplement Magnesium. As otherwise because of the increased bone metabolism VItamin D supplementation can you make magnesium deficient.
I am so glad that I found this information that you have posted. Thank you. I will certainly use it As you say, there is so little guidance available and perhaps multiple issues, none of which are easy to diagnose or treat. A regular GP (at least where I am), is going to look at you as if you have two heads and probably tell you to drink more water and goodbye. I am sorry that you have had such a long ordeal. I get the impression that it is typical for many.
Anyway, while researching thyroid function I came across new information concerning genetic mutations which affect methylation in the body. I had already done genetic testing via 123andme (because I wanted to look at my il28b allele) so I had all my raw genetic data available. Using the website GeneticGenie.org I translated this data into my methylation Profile and discovered that I have multiple mutations that affect my methylation and ability to use certain supplements, methylfolate being a huge issue (mine is low). Apparently these mutations are very common and most people have some degree of methylation impairment. Anyway I am posting an indepth video by Dr Ben Lynch who is a leading researcher in this area.
There's a lot of info but I wouldn't be surprised if these mutations might be a reason why some people have difficulty picking up and restoring their health after tx. Dr Lynch says it is possible to fix IF you understand what you are doing.
Here's an article on methylation that's a bit easier to get through.
Thank you so much for sharing!!! So good to see you!
And you! Not many old timers around here nowadays. But we're still interferon survivors.
You are so right! Would you mind moving this to HCV post treatment? I know people go there for help and I was thinking perhaps it would help others.
Oldtimer is right. I'm still waiting to recover from thing or another :)
So happy to see you are still here.
What surprises me and both Hepatologists I was under treatment with, is that after 4 brutal treatments and finally Harvoni (which destroyed the Hep C), I feel a lot more energy now than in years. Keep in mind I'm two years post liver transplant. My energy level is great and as a performer, I have more energy and sing better than even a few years before the transplant.
The only thing I notice, and I don't know if it has anything to do with the Harvoni treatment, is my vision went from 20-30 to 20-50, which now requires me to wear glasses for distance. Funny thing is, I paid $180 for prescription glasses to see better up close, now I can see perfectly up close but blurry long distance. Strange...
Thanks Dointime, I was hoping you would not mind me asking the MODS to move it. I thought it could help a lot of people desperate for help or even validation of their symptoms
Than you for starting this thread.
I just found this article
another nutrient that is depleted during Hep C and interferone treatment is zinc.
As well as Vitamin A
Good luck to everyone! Don't give up, even after 13 years our bodies have the ability to recover if we provide them with the nutrients they need.
10 years post 26 weeks pegasys/riba. Side effects vision hearing issues,crippling fatigue,joint pain,fibromyalgia,brain fog,concentration problems,personality changes,night terrors,cold,lack of appetite,sleep problems and anxiety. The fatigue is the worst.Was diagnosed with Post Interferon Syndrome by my treating liver consultant 5 years post treatment and he said approx. 4% of his patients were left with similar side effects.