Aa
Post Interferon Syndrome
I'm 54 and SVR after 3 treatments starting from 1993, 1994 then Peg & Ribarivin 2003. To say it was a roller coaster ride to hell is an understatement.
I hold strongly that I have Post Syndrome...I have intermittent fatigue after being active, takes me at least 2 days of resting to recover from any strenuous activity, and I mean flat out and sleeping, then I can have periods of insomnia which I never had before. I have had a major shoulder op due to rotar cuff deterioration, carpal tunnel release right hand, and looking at the left soon. Left knee cartilage repair, now due to have my right one done. I have aches in my joints which are random, clumsy as well.
My brain feels like sludge, some days my thought processes are a joke. I forget things like appointments, leave pans on the stove, unable to concentrate, get irritable if the environment is too noisy and crowded. I have depression and get anxious if I feel stressed and that in itself makes me feel unable to cope and make a decision.
I have coped with this by managing my time and environment which basically means, I can't work, I avoid any situations that would provoke stress or over stimulate me. This is not what I was like before, I was outgoing, worked and had a great social life. I have changed and often feel dead inside.
What has this drug regime done to me really? Yes, the hep c is undetectable but I can never donate blood or major organs (even tho I'm cured...joke!) tho I have been reliably informed the little bugger hides away in the lymph somewhere.
I read on here others that have similar symptoms and I wonder if we are a part of the treatment that pharmaceutically companies ignore due to profits from such a global problem. As time goes on more and more people express long term health and mental changes. I'm glad to be SVR but honestly...it has curbed my life and made me feel old no matter what I try to redress it. My GP is great and she agrees that immunologically there is probably changes and I was warned in 1993 that any existing conditions will worsen...so what did they know then?
I am a qualified nurse but not practicing now so any medical information or research that you know of would be of great help to me on my quest.
I would be so happy to hear from others as I would like to correlate the evidence somehow and also share and support.
best to all
Alys.
I hold strongly that I have Post Syndrome...I have intermittent fatigue after being active, takes me at least 2 days of resting to recover from any strenuous activity, and I mean flat out and sleeping, then I can have periods of insomnia which I never had before. I have had a major shoulder op due to rotar cuff deterioration, carpal tunnel release right hand, and looking at the left soon. Left knee cartilage repair, now due to have my right one done. I have aches in my joints which are random, clumsy as well.
My brain feels like sludge, some days my thought processes are a joke. I forget things like appointments, leave pans on the stove, unable to concentrate, get irritable if the environment is too noisy and crowded. I have depression and get anxious if I feel stressed and that in itself makes me feel unable to cope and make a decision.
I have coped with this by managing my time and environment which basically means, I can't work, I avoid any situations that would provoke stress or over stimulate me. This is not what I was like before, I was outgoing, worked and had a great social life. I have changed and often feel dead inside.
What has this drug regime done to me really? Yes, the hep c is undetectable but I can never donate blood or major organs (even tho I'm cured...joke!) tho I have been reliably informed the little bugger hides away in the lymph somewhere.
I read on here others that have similar symptoms and I wonder if we are a part of the treatment that pharmaceutically companies ignore due to profits from such a global problem. As time goes on more and more people express long term health and mental changes. I'm glad to be SVR but honestly...it has curbed my life and made me feel old no matter what I try to redress it. My GP is great and she agrees that immunologically there is probably changes and I was warned in 1993 that any existing conditions will worsen...so what did they know then?
I am a qualified nurse but not practicing now so any medical information or research that you know of would be of great help to me on my quest.
I would be so happy to hear from others as I would like to correlate the evidence somehow and also share and support.
best to all
Alys.
Best Answer
I have been through this for years. Did 20 months high dosage inf and then another year+ Peg/Riba. Could not move for years afterwards. Read a thread on this board about anti oxidant therapy. Some doctor in NM was using alpha lipoic acid,selenium and milk thistle along with B vitamins and D vitamins,whatever was needed according to labs. I read about it and figured it was better than doing nothing. Didn't think it would work but went to GNC and got a bottle of ALA and started doing 900 mgs a day. Within a week I started to move again so I added the other supplements. 400mg Selenium,900 milk thistle. Went to see the doctor and he added in low dose naltrexone which should straighten out your immune system and stop the symptoms. Best of luck.
chemotherapy vs. immunotherapy
I only heard my GPs nurse call it chemo and then some called it immunotherapy...
Anyways, I found those links fascinating and will bring them to my GP.
Thanks both. f
I only heard my GPs nurse call it chemo and then some called it immunotherapy...
Anyways, I found those links fascinating and will bring them to my GP.
Thanks both. f
"It's called "depersonalization syndrome." It's scary and very difficult to deal with."
Wonderful... I don't know how long the list of syndromes is now but here goes another! Actually I have been able to deal with this one a bit better than some of the others! That is why my current therapist keeps congratulating me on a job well done! And I can tell you that AntiDepressant didn't help me on this one!
"...They are caused by immune systems gone haywire from the drugs. Your body attacks itself as the drugs leave the system, and tissues (be it skin, kidney, nerves, brain, bone, thyroid, pituitary, whatever) get inflamed and that's what causes you to feel so whacky. ...
Until very recently, the warnings never mentioned "depersonalization syndrome" or alluded to the fact that interferon alters your immune system. If the warnings were fairly given in plain English, few people would probably take these drugs."
As for my HepC/Liver docs that is all they did talk about actually - the part about the immune system - maybe it wasn't "altering" but "revving up" something like that... and as I recall in reading thru the warnings of both INF / Ribavirin *the print was like the old time Bible and nearly as thick = even my mother was shocked at the warnings and she is a medical experiment in her own right!... even included death. AND, like otterwatcher, riba - I kept asking about those horrible things and they kept telling me they really didn't know much about them after using them for over 10 years!!!
"It has taken a peculiar combination of arrogance and naiveté... It's the perfect scam. Those they damage are mostly silent and incapable of fighting for themselves, best case."
"I think American Western medicine crossed a line in its treatment of this disease (witness the uproar as to the cost of S/O)... Maybe I think too much."
"Pharmaceutical rep replaces used car salesman in more and more people's eyes, that's for sure."
I had a very old Chinese acupuncturist who tried to realign me for a number of months. HE finally gave up saying "Western medicine has damaged you too much for acupuncture to help!". This doctor was also a western physician - I think a surgeon but I forget...
I hope you are correct, and I believe the same as you in that the HUGE push to treat HepC no matter what for the "cure" of a virus! as a scam will eventually become a major problem for all involved - unfortunately all in the medical community from the FDA to big pharma to the docs, reps etc all work very well together in the scam *nearly forgot the insurers!!! attorneys!!! etc.
I made a complaint against an endo doc and her office, I have yet to see the report but with a follow up call can already tell they are covering for the doctor. The patient is the least interested party in it all in most cases until the numbers get so enormous and Congress starts complaining more about just cost!
Anyways, I don't know if my thoughts came out clearly but I just wanted to say I do appreciate your well written post scottie24!
Wonderful... I don't know how long the list of syndromes is now but here goes another! Actually I have been able to deal with this one a bit better than some of the others! That is why my current therapist keeps congratulating me on a job well done! And I can tell you that AntiDepressant didn't help me on this one!
"...They are caused by immune systems gone haywire from the drugs. Your body attacks itself as the drugs leave the system, and tissues (be it skin, kidney, nerves, brain, bone, thyroid, pituitary, whatever) get inflamed and that's what causes you to feel so whacky. ...
Until very recently, the warnings never mentioned "depersonalization syndrome" or alluded to the fact that interferon alters your immune system. If the warnings were fairly given in plain English, few people would probably take these drugs."
As for my HepC/Liver docs that is all they did talk about actually - the part about the immune system - maybe it wasn't "altering" but "revving up" something like that... and as I recall in reading thru the warnings of both INF / Ribavirin *the print was like the old time Bible and nearly as thick = even my mother was shocked at the warnings and she is a medical experiment in her own right!... even included death. AND, like otterwatcher, riba - I kept asking about those horrible things and they kept telling me they really didn't know much about them after using them for over 10 years!!!
"It has taken a peculiar combination of arrogance and naiveté... It's the perfect scam. Those they damage are mostly silent and incapable of fighting for themselves, best case."
"I think American Western medicine crossed a line in its treatment of this disease (witness the uproar as to the cost of S/O)... Maybe I think too much."
"Pharmaceutical rep replaces used car salesman in more and more people's eyes, that's for sure."
I had a very old Chinese acupuncturist who tried to realign me for a number of months. HE finally gave up saying "Western medicine has damaged you too much for acupuncture to help!". This doctor was also a western physician - I think a surgeon but I forget...
I hope you are correct, and I believe the same as you in that the HUGE push to treat HepC no matter what for the "cure" of a virus! as a scam will eventually become a major problem for all involved - unfortunately all in the medical community from the FDA to big pharma to the docs, reps etc all work very well together in the scam *nearly forgot the insurers!!! attorneys!!! etc.
I made a complaint against an endo doc and her office, I have yet to see the report but with a follow up call can already tell they are covering for the doctor. The patient is the least interested party in it all in most cases until the numbers get so enormous and Congress starts complaining more about just cost!
Anyways, I don't know if my thoughts came out clearly but I just wanted to say I do appreciate your well written post scottie24!
it's actually immunotherapy altho it is used in treatment of melanoma and more post treatment info is available for those circumstances than for hcv treatment. Post treatment syndrome does seem to be very similar to chronic fatigue syndrome,in fact some research is being done into cfs using hcv patients undergoing treatment as a model. I felt awful during treatment,started to feel better then approx. 3 months later it all kicked in.
Inflammation of the brain and how it affects your cognitive function, personality, etc. -
http://www.wellnessresources.com/health/articles/brain_inflammation_now_documented_in_chronic_fatigue_syndrome/
The foregoing is a discussion of this article:
http://jnm.snmjournals.org/content/55/6/945
which is freely available only in abstract form.
I truly believe the foregoing - brain inflammation of the primitive parts of our brains - is the key to the damage to our minds and personalities. I did not feel anywhere near as bad during treatment as I did six months afterwards.
Note also the following about fasting - it may help reset the immune system after chemotherapy (they never told us it was chemotherapy, either, right? :-) )
https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
http://www.wellnessresources.com/health/articles/brain_inflammation_now_documented_in_chronic_fatigue_syndrome/
The foregoing is a discussion of this article:
http://jnm.snmjournals.org/content/55/6/945
which is freely available only in abstract form.
I truly believe the foregoing - brain inflammation of the primitive parts of our brains - is the key to the damage to our minds and personalities. I did not feel anywhere near as bad during treatment as I did six months afterwards.
Note also the following about fasting - it may help reset the immune system after chemotherapy (they never told us it was chemotherapy, either, right? :-) )
https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/
"In addition I don't know what has happened to me, it's like I lost of my personality which is not from depression, though I do feel i have gotten depressed from feeling this way and what it's doing to my life."
It's called "depersonalization syndrome." It's scary and very difficult to deal with. It also is recognized as making it very hard to work. A whole different flavor than depression. I know what you feel.
Based solely on observations from this forum, Sovaldi seems to bring on post-treatment side effects in about 30 days. Based on observations from this forum and personal experience, INF / Ribavirin takes about 90 days, post-treatment.
The post-treatment side effects are not directly caused by the drugs, in my opinion. They are caused by immune systems gone haywire from the drugs. Your body attacks itself as the drugs leave the system, and tissues (be it skin, kidney, nerves, brain, bone, thyroid, pituitary, whatever) get inflamed and that's what causes you to feel so whacky. These drugs are like throwing a shotgun blast into the body. Never know what they'll hit. Take out some bad stuff maybe, but often take out some good too. In my judgment, anyway.
Until very recently, the warnings never mentioned "depersonalization syndrome" or alluded to the fact that interferon alters your immune system. If the warnings were fairly given in plain English, few people would probably take these drugs.
It has taken a peculiar combination of arrogance and naiveté across the field of hepatology and gastroenterology to give these powerful immune-modifying drugs to patients with no or little counseling and advice ("six months of flu-like symptoms" - we've all heard that, right?) and to just bury their heads in the sand as to what long term effects upon the immune system may remain. There has just been this wide assumption that once you quit taking the drugs, all is well. Then, brain-addled people have a very difficult time making their difficulties known and appreciated. It's the perfect scam. Those they damage are mostly silent and incapable of fighting for themselves, best case.
I think American Western medicine crossed a line in its treatment of this disease (witness the uproar as to the cost of S/O), and it's going to have a lot of repercussions down the road, as to value judgments, what is right, what we should pay for, how much patients value and trust Western medicine doctors, what values doctors should have (are they merely chemists or should they think more about life and living), how intertwined their practice is with the pharmaceutical industry, etc. Maybe I think too much.
Pharmaceutical rep replaces used car salesman in more and more people's eyes, that's for sure.
It's called "depersonalization syndrome." It's scary and very difficult to deal with. It also is recognized as making it very hard to work. A whole different flavor than depression. I know what you feel.
Based solely on observations from this forum, Sovaldi seems to bring on post-treatment side effects in about 30 days. Based on observations from this forum and personal experience, INF / Ribavirin takes about 90 days, post-treatment.
The post-treatment side effects are not directly caused by the drugs, in my opinion. They are caused by immune systems gone haywire from the drugs. Your body attacks itself as the drugs leave the system, and tissues (be it skin, kidney, nerves, brain, bone, thyroid, pituitary, whatever) get inflamed and that's what causes you to feel so whacky. These drugs are like throwing a shotgun blast into the body. Never know what they'll hit. Take out some bad stuff maybe, but often take out some good too. In my judgment, anyway.
Until very recently, the warnings never mentioned "depersonalization syndrome" or alluded to the fact that interferon alters your immune system. If the warnings were fairly given in plain English, few people would probably take these drugs.
It has taken a peculiar combination of arrogance and naiveté across the field of hepatology and gastroenterology to give these powerful immune-modifying drugs to patients with no or little counseling and advice ("six months of flu-like symptoms" - we've all heard that, right?) and to just bury their heads in the sand as to what long term effects upon the immune system may remain. There has just been this wide assumption that once you quit taking the drugs, all is well. Then, brain-addled people have a very difficult time making their difficulties known and appreciated. It's the perfect scam. Those they damage are mostly silent and incapable of fighting for themselves, best case.
I think American Western medicine crossed a line in its treatment of this disease (witness the uproar as to the cost of S/O), and it's going to have a lot of repercussions down the road, as to value judgments, what is right, what we should pay for, how much patients value and trust Western medicine doctors, what values doctors should have (are they merely chemists or should they think more about life and living), how intertwined their practice is with the pharmaceutical industry, etc. Maybe I think too much.
Pharmaceutical rep replaces used car salesman in more and more people's eyes, that's for sure.
I always felt like the riba was the problem for me-I felt sick just looking at those toxic pink pills.Altho I was diagnosed with Post Interferon Syndrome I also feel my fatigue is mitochondrial toxicity from the ribavirin. That feeling of losing something of your essence-something important-the thing that made you who you were...I know that too well.
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