Aa
when does the pain stop
i did 6 months of interferon in 2008 and am very blessed to say i beat hep C, but when does the after effects stop? i am only 47 was very active use to jog a mile or two a day, i'm lucky if i could walk a mile now, i have such pain in my legs, feet,and my knees ache and have seemed to have taken on fluid around the fleshy sides of the knee,that some times i can barley walk, especially in the morning.i also am experiencing lots of pain in the injection site i chose to inject into my hips and now they ache so bad and i also ended up with osteoporosis. i have read some other post from fellow interferon users and some have said the after effects should subside in a yr or two, WELL I'TS BEEN 5YRS WHEN DOES IT STOP. i don't know about anyone else but it makes me wonder if someday i will be watching tv and see interferon on one of those BAD DRUG commercials. don't get me wrong i'm grateful to be healed but just seems someone could have told me about the LONG after effects of this medicine. i actually feel worse and more fatigued now then when i had hep, i led a normal life with hep C and now i am physically limited to what i can do, maybe someone will come out with a new drug to counter act the effects left behind from interferon, good luck to you all, i'm gonna try acupuncture will let you all now how it works. Sinclar08 p.s. nice to know i'm not alone
Have been in 3 different trials since 1996...interferon then interferon/riba and then pegaferon. Couple of years between each trial. Had side effects from all 3. Am Geno 1... Was refused tx due to compensated liver. Have said this in other posts but will repeat. It is your choice versus the quality and lenght of life you want. Every drug I was given has precursors listed as to adverse side effects. Research the medication you are planning on taking...evaluate IF you have one of the side effects listed could you live with it. Due to how the drugs effected my mobility and muscles and the reactions after every shot no matter which trial it was plus hair loss, and adverse reactions to the sun...I was taken off the protocals. It was deemed too dangerous to put me on tx due to decompensated liver. HCV load over 250 M...am ESLD 4 on awating approval for transplant. Is the cure worse than the disease? Is the disease worse than the cure. That is for you to decide. I wish I could have had a drug therapy that would have worked because I am not anxious to have a transplant and a God awful Y shape scar across my abdomen and then on suppressents the rest of my life then on tx or whatever is new therapy in a couple of years.. "Regrets are jus realazations that come too late."
I think that anecdotal does not equate with proof. We also often see that even one study does not equal proven. For there to be "proof" it will take many studies, and many of these could involve self reporting. I'm not certain these have been a priority while people still require IFN and RBV to treat and cure their HCV.
As near as I can tell, it a diagnosis that so far has escaped modern medicine. It could be a number of issues and it may not be fair or accurate to blame it only on IFN. It could be several things which present as one panorama of symptoms issue.
I include this link not only because it summarizes some peoples experience, but provides one persons partial solution.
http://books4freedotcom.wordpress.com/2012/03/04/post-interferon-syndrome-headaches-and-celexa-citalopram/
Willy
As near as I can tell, it a diagnosis that so far has escaped modern medicine. It could be a number of issues and it may not be fair or accurate to blame it only on IFN. It could be several things which present as one panorama of symptoms issue.
I include this link not only because it summarizes some peoples experience, but provides one persons partial solution.
http://books4freedotcom.wordpress.com/2012/03/04/post-interferon-syndrome-headaches-and-celexa-citalopram/
Willy
I believe that Willy is correct in the history.
A patient of the Mayo had reported to me that the Mayo (after one of their famous work-ups) diagnosed her with PIS.
Unfortunately, It seems that the Mayo wants to try and patent this P.I.S. or something as it does not appear on their site (I tried to do a search for it a year or more ago and had zero luck in finding any bit of it). Willy then met another person who went to another Mayo and they were diagnosed with PIS as well.
I started using it with my docs and surprisingly more than a few of the younger ones had heard of the syndrome. They must have caught the phrase as they were graduating or somewhere on their rounds???
For some odd reason, maybe financial, or not wanting to stir the pot too much with PIS Mayo seemingly doesnt want to publish a paper on what they seem to have found... I dont know why...
A patient of the Mayo had reported to me that the Mayo (after one of their famous work-ups) diagnosed her with PIS.
Unfortunately, It seems that the Mayo wants to try and patent this P.I.S. or something as it does not appear on their site (I tried to do a search for it a year or more ago and had zero luck in finding any bit of it). Willy then met another person who went to another Mayo and they were diagnosed with PIS as well.
I started using it with my docs and surprisingly more than a few of the younger ones had heard of the syndrome. They must have caught the phrase as they were graduating or somewhere on their rounds???
For some odd reason, maybe financial, or not wanting to stir the pot too much with PIS Mayo seemingly doesnt want to publish a paper on what they seem to have found... I dont know why...
An another perspective that as never been investigated is post viral syndrome.
Post-viral fatigue syndrome (PVFS) is a condition or conditions characterized by fatigue following a viral infection. The term is not widely used, but the state of prolonged or severe fatigue after illness is not uncommon. Some people experience fatigue and related symptoms for months or years following a severe viral infection.
http://en.wikipedia.org/wiki/Post-viral_fatigue_syndrome
Post-viral fatigue syndrome (PVFS) is a condition or conditions characterized by fatigue following a viral infection. The term is not widely used, but the state of prolonged or severe fatigue after illness is not uncommon. Some people experience fatigue and related symptoms for months or years following a severe viral infection.
http://en.wikipedia.org/wiki/Post-viral_fatigue_syndrome
I'm so sorry you are suffering so much. I'm a "believer" in interferon therapy in that I prefer it to not treating HCV, but I also believe it has caused a lot of suffering itself. My layperson's opinion is that some people are easily triggered into autoimmune problems. In my case the HCV itself triggered these and I started suffering first, then was diagnosed with HCV and then treated, but I can easily imagine it happening in other orders. Before I began HCV tx both my hepatologist and my rheumatologist warned me that the interferon might make my autoimmune problems worsen, although getting rid of HCV might possibly alleviate them. So far neither one has happened. I've taken interferon for about 29 months (over three different treatments) and none of the treatments have really made the autoimmune problems either worse or better, though I'm still hoping for improvement over time if my 24-week post-EOT test shows SVR (in another 9 weeks). Since we think the HCV was the initial trigger in my case, getting rid of it might eventually allow the autoimmune response to decrease. I wonder if you have seen a rheumatologist for your complaints? It might be worthwhile to consider trying treatment with some of their arsenal of anti-inflammatory or immune-modulating drugs. I really hope we both find some relief soon!
I think the first link I posted is the thread w/ 550+ replies. It's on a second page of that. The first mention of it was from Frank Perotta. To be clear, the report of the use of the term was from doctors at Mayo.
I believe in that thread I may have mentioned the use of the term syndrome. It is used more when things are associated with but one cannot provide a specific diagnosis.
Think of early HCV diagnosis, for instance. They knew it existed, but they could not prove it's existence. Upon the invention of the PCR specific to identifying the HCV RNA they could prove and assert the existence of HCV , not merely as non A, Non b hepatitis.
Surely..... you are not suggesting it does not exist, simply there is not a good tool for identifying exactly what the cause is?
The actual mechanisms are not well understood and I feel that the so called syndrome could be a variety of issues that all manifest as the general malaise. I believe some facilities have used the term something to the effect of interferon induced fibromyalgia.
http://informahealthcare.com/doi/abs/10.3109/08923979909052757
We don't know if it is sensitivity to drugs, genetically based response, whether other underlying latent diseases could work together synergistically, or synergistically w/ interferon.
We do know there is a large pool of people who were "well" before TX but who were not after.
Decisive proof would come from studies...... and who would fund that? Even now, there is no treatment that can cure HCV without the use of interferon.
I am guessing that after interferon and riba free treatments are approved, there will be a pool of people post TX that exhibit different post TX outcomes.
For the sake of argument, lets say there are no post tx sides in that group. This would suggest that IFN was a culprit in the past, but strictly speaking it will not be much more than more evidence. It won't be "proof". Likewise, if there is no change in long term post TX sides following IFN and RBV therapy, they that would suggest they were not the cause. It may narrow things down, but still will not provide the answer.
During the recent Incivek black box warning Vertex mentioned that over 50,000 people have been treated w/ incivek. I believe Vertex has had about a 75% market share and so adding in Victrellis, I would imagine that in the past 1.5 years over 60K people have treated w/ Incivek and Victrellis, and thereby IFN and RBV.
If one was to assert 1-5% of these had issues post TX that may have been related to interferon, the numbers might range from 600 to 3000 people. Obviously, before the PI's were approved, interfeon was used in various forms for over 15 years, but I do not have the numbers who have treated, or retreated. I am just going with conservative numbers, if you read HCV boards you might conclude they could be higher.
My point is not to assert cause, but to let this person in on the pool of people like the OP who have had this issue, regardless of the cause.
For whatever it is worth...... I have also met in person a person from a different board, who also was seen by Mayo, who also has similar symptoms, and whose physicians also used that term; post interferon syndrome.
willy
I believe in that thread I may have mentioned the use of the term syndrome. It is used more when things are associated with but one cannot provide a specific diagnosis.
Think of early HCV diagnosis, for instance. They knew it existed, but they could not prove it's existence. Upon the invention of the PCR specific to identifying the HCV RNA they could prove and assert the existence of HCV , not merely as non A, Non b hepatitis.
Surely..... you are not suggesting it does not exist, simply there is not a good tool for identifying exactly what the cause is?
The actual mechanisms are not well understood and I feel that the so called syndrome could be a variety of issues that all manifest as the general malaise. I believe some facilities have used the term something to the effect of interferon induced fibromyalgia.
http://informahealthcare.com/doi/abs/10.3109/08923979909052757
We don't know if it is sensitivity to drugs, genetically based response, whether other underlying latent diseases could work together synergistically, or synergistically w/ interferon.
We do know there is a large pool of people who were "well" before TX but who were not after.
Decisive proof would come from studies...... and who would fund that? Even now, there is no treatment that can cure HCV without the use of interferon.
I am guessing that after interferon and riba free treatments are approved, there will be a pool of people post TX that exhibit different post TX outcomes.
For the sake of argument, lets say there are no post tx sides in that group. This would suggest that IFN was a culprit in the past, but strictly speaking it will not be much more than more evidence. It won't be "proof". Likewise, if there is no change in long term post TX sides following IFN and RBV therapy, they that would suggest they were not the cause. It may narrow things down, but still will not provide the answer.
During the recent Incivek black box warning Vertex mentioned that over 50,000 people have been treated w/ incivek. I believe Vertex has had about a 75% market share and so adding in Victrellis, I would imagine that in the past 1.5 years over 60K people have treated w/ Incivek and Victrellis, and thereby IFN and RBV.
If one was to assert 1-5% of these had issues post TX that may have been related to interferon, the numbers might range from 600 to 3000 people. Obviously, before the PI's were approved, interfeon was used in various forms for over 15 years, but I do not have the numbers who have treated, or retreated. I am just going with conservative numbers, if you read HCV boards you might conclude they could be higher.
My point is not to assert cause, but to let this person in on the pool of people like the OP who have had this issue, regardless of the cause.
For whatever it is worth...... I have also met in person a person from a different board, who also was seen by Mayo, who also has similar symptoms, and whose physicians also used that term; post interferon syndrome.
willy
I've read many accounts of people who suffered post tx, but the only mention of "post interferon syndrome" by the Mayo Clinic I found was by random people posting in forums.
I was unable to find any mention of it by the Mayo Clinic or any other medical organization. If you have links please provide them.
I was unable to find any mention of it by the Mayo Clinic or any other medical organization. If you have links please provide them.
I have been officially disabled from "the cure" for about five years now, not sure about the science but getting SSDI is pretty difficult these days and the medical records showed that my health was pretty amazing before and pretty crappy after "the cure" and getting crappier and crappier and crappier - and when given the chance to study my situation the Liver Guru sends me off to another dept because it could never be his medication but just before that meeting his head nurse said to me "Sorry! We destroyed your life!"
Many of the fresh out of med school docs have heard of PIS but as Willy has said - not much one can really do about it all but accept and as with any syndrome one tries to cover up the parts of each issue but it is tough and the meds used have their own issues.
Recently another member has mentioned LDN (Low Dose Naltrexone). Since I have just lost my GP and am searching for a new one I have not done a lot of research into LDN but have mentioned it to my pain doc and she said that she has heard of it in conjunction with PIS so???
Many of the fresh out of med school docs have heard of PIS but as Willy has said - not much one can really do about it all but accept and as with any syndrome one tries to cover up the parts of each issue but it is tough and the meds used have their own issues.
Recently another member has mentioned LDN (Low Dose Naltrexone). Since I have just lost my GP and am searching for a new one I have not done a lot of research into LDN but have mentioned it to my pain doc and she said that she has heard of it in conjunction with PIS so???
This reminds me of a statement I saw in a PegAssist Brochure the other day. It had all the info about Nurse educator phone calls & support and all that and then in larger bold font it says:
PEGASYS, like other alpha interferons, may cause or worsen fatal or life-threatening problems (like mental, immune system, heart, liver, lung, intestinal and infections). Your doctor should monitor you during regular visits. If you show signs or symptoms of these conditions, your doctor may stop your medication. In many patients, but not all, these conditions get better after they stop taking PEGASYS (see the Medication Guide for more information and Warnings).
___________________________-
In other words there is more to it than the Interferon ~ even if you suspect it was the catalyst. Whatever is happening with you may or may not be a condition that was triggered or exacerbated by the Peg. If it were me I would regard it as an entirely new condition and start from there. Have a physical and perhaps see a specialist and see if you can get a diagnosis.
I hope this works out and you keep us posted.
Best of luck ♥
PEGASYS, like other alpha interferons, may cause or worsen fatal or life-threatening problems (like mental, immune system, heart, liver, lung, intestinal and infections). Your doctor should monitor you during regular visits. If you show signs or symptoms of these conditions, your doctor may stop your medication. In many patients, but not all, these conditions get better after they stop taking PEGASYS (see the Medication Guide for more information and Warnings).
___________________________-
In other words there is more to it than the Interferon ~ even if you suspect it was the catalyst. Whatever is happening with you may or may not be a condition that was triggered or exacerbated by the Peg. If it were me I would regard it as an entirely new condition and start from there. Have a physical and perhaps see a specialist and see if you can get a diagnosis.
I hope this works out and you keep us posted.
Best of luck ♥
If you use the search engine from this board and type in long term effects of interferon, or post TX sides, that sort of thing...... I think you'll find many threads.
You can do some reading. You may not find answers, but you will certainly find some comfort knowing you are not alone, that this is probably associated with treating w/ peg and riba
There are just so many who it has affected.
It is difficult to get a diagnosis, but I believe that the mayo clinic has dubbed it "post interferon syndrome", or PIS.
http://www.medhelp.org/posts/Hepatitis-C/Long-term-side-effects-of-interferon/show/866107?page=1
http://www.medhelp.org/posts/Hepatitis-C/long-term-after-effects-post-interferon/show/89426
You can read up on a few threads. Each thread has other similar type links to common thread topics. You will have hours of reading.
I am sorry to say that many doctors have no knowledge this even exists, many of the lab tests cannot detect any irregularities; often times everything looks just fine.
I might consider trying to get basic vitamins and micro-nutrients levels checked. Vitamin B, E, A helps for some. Magnesium, zinc or selenium may be low. There are limits of how much of some of these you can take, so don't just take them hoping for the best; you can "OD" on them. : )
I might try to improve diet and lean more towards fresh fruits, vegetables, less processed foods, no GMO's, more organic, that sort of thing. Read the threads. It will help a bit, but unfortunately there is not a lot known about solutions, but many people are working towards one.
Sorry I could not be of more help.
willy
You can do some reading. You may not find answers, but you will certainly find some comfort knowing you are not alone, that this is probably associated with treating w/ peg and riba
There are just so many who it has affected.
It is difficult to get a diagnosis, but I believe that the mayo clinic has dubbed it "post interferon syndrome", or PIS.
http://www.medhelp.org/posts/Hepatitis-C/Long-term-side-effects-of-interferon/show/866107?page=1
http://www.medhelp.org/posts/Hepatitis-C/long-term-after-effects-post-interferon/show/89426
You can read up on a few threads. Each thread has other similar type links to common thread topics. You will have hours of reading.
I am sorry to say that many doctors have no knowledge this even exists, many of the lab tests cannot detect any irregularities; often times everything looks just fine.
I might consider trying to get basic vitamins and micro-nutrients levels checked. Vitamin B, E, A helps for some. Magnesium, zinc or selenium may be low. There are limits of how much of some of these you can take, so don't just take them hoping for the best; you can "OD" on them. : )
I might try to improve diet and lean more towards fresh fruits, vegetables, less processed foods, no GMO's, more organic, that sort of thing. Read the threads. It will help a bit, but unfortunately there is not a lot known about solutions, but many people are working towards one.
Sorry I could not be of more help.
willy
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