Post Interferon Syndrome

Posted by jerbobs @jerbobs, Jan 31, 2018

What is known?

Liked by bt56

@bt56

I was one of the first people to ever undergo treatment for hep c. I was given an incredible amount of interferon alpha two A although I have been told it must have been alpha 2 b, but I no longer have any paperwork so I don’t know. It was in 1995 and was an experimental treatment. I saw a specialist who wouldn’t allow me to tell him about the side effects I was having except for my top three. I would try to show him my list and notes about all the awful things I was going through but he was very firm. If you don’t like it you are welcome to quit but you will die. During that year I lost over 50lbs and was in so much pain and very weak. He told me my pain was fibromyalgia that would definitely go away when I was finished with treatment. He sent me to a rheumatologist for that who was one of the leading rheumatologists in the country when it comes to fibromyalgia. He told me that there was no hope that fibromyalgia would go away. He said there is no cure but doctors due their best to help control symptoms. All these years later I am not better and in fact the symptoms only get worse the older I get. I am looking for help because I have so many crazy symptoms that doctors don’t know what to do so I get shuffled from doctor to doctor with no real relief. My sister-in-law found this site and sent it to me with This is you! So now I am here to ask for help. Is there a doctor or a clinic that specializes in this syndrome? I would go anywhere to finally find some help
Barb

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Unfortunately that sounds like the answers we are all getting. After being treated by rheumatologist for 5 years (9 years after treatment) for what he diagnosed as fibromyalgia. He said”oh this is Post Inteferon Syndrome. Question, what are supposed to do with this ?? Not getting any answers. Now that I am on a Medicare advantage plan, I can’t get the Tramadol and Elavil for treatment. Seems now that I am 66 these drugs are dangerous, according to our government. Is anyone being treated successfully??

REPLY

This is just my personal opinion but doctor's don't really care about "us." There is no going back to feeling good again. We are the forgotten ones. Hep C is associated with being a drug user. It makes me very angry that everyone gets help and empathy but us. I do not currently have a computer to enable me to continue my research and writing, but my plan is to contact some talk shows with evidence I will have about the enormous checks doctors were getting for prescribing and then not following the protocols to protect us from the deadly side effects. IT IS CRIMINAL! I already have my obituary ready naming the doctor and nurse who treated me. They should have to pay for my medical expenses and much more.

REPLY
@bbsheffield

My name is Barbara… I am 19yrs post-interferon (1yr of PEG, after which I relapsed 3mos post treatment & 1 more year of experimentally high-dose IFN, daily injections, plus 2000mg of ribivirin daily). I was extremely ill theentiretime, completely bed-ridden. The 2nd year finally did cure my HCV, but it triggered Type 1 diabetes… the onset at 10mos into tx. But, I could deal with that, until about 6mos post-tx when I realized that I felt ill all of the time. I was starting to lose my memory gradually. Now, at 69, I am far more chronically ill with the post tx syndrome, in chronic pain from joint and connective tissue deterioration. I am housebound and mostly bed-ridden. I have also become very debilitated with terrible memory loss and mental confusion. This is the worst, because I was intelligent, well-educated and quick-witted. My friends say I still am, but for someone who scored a perfect 800 on the verbal portion of the SATs, I constantly fail to bring forth the vocabularly that stood me in such great stead for my entire life. I also suffer from extreme anxiety and panic disorder, which started after I finished my 2nd year of IFN. This is no way to live, my depression is now severe, even with medication.

I pray for you all that your treatment syndrome doesn't continually get worse, as mine did!

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Hi Barbara from another Barbara. I am 24years post Intron Interferon Alpha 2A. I was given 10 million units of interferon intermuscular shots three times a week for 52 weeks. It was a drug trial and that was the only drug I was given other than some pain pills after life became unbearable. I have felt sick since the day I took the drug. Other than the time I took off for treatment, I did manage to keep working up until three years agowhen I came down with two autoimmune disease. I worked for community colleges for most of my work life and truly miss the students and other staff members. I feel like each day I lose more ability to do just about anything.
I am trying to find treatment for Post Interferon Syndrome that I know I have without ever having a doctor diagnose it. I hit every symptom on the list I found on this site, but now am trying to find a doctor to treat it. I don't know where to turn so I am hoping someone will respond and maybe help both of us as we struggle to get better. I sincerely wish you all the best and hope someone will reach out to both of us with some answers.

REPLY
@bt56

Hi Barbara from another Barbara. I am 24years post Intron Interferon Alpha 2A. I was given 10 million units of interferon intermuscular shots three times a week for 52 weeks. It was a drug trial and that was the only drug I was given other than some pain pills after life became unbearable. I have felt sick since the day I took the drug. Other than the time I took off for treatment, I did manage to keep working up until three years agowhen I came down with two autoimmune disease. I worked for community colleges for most of my work life and truly miss the students and other staff members. I feel like each day I lose more ability to do just about anything.
I am trying to find treatment for Post Interferon Syndrome that I know I have without ever having a doctor diagnose it. I hit every symptom on the list I found on this site, but now am trying to find a doctor to treat it. I don't know where to turn so I am hoping someone will respond and maybe help both of us as we struggle to get better. I sincerely wish you all the best and hope someone will reach out to both of us with some answers.

Jump to this post

Has anyone tried researching clinical articles thru Google Scholar ? That’s where I’m looking next. Will let you know if come up with anything.

REPLY
@bt56

Hi Barbara from another Barbara. I am 24years post Intron Interferon Alpha 2A. I was given 10 million units of interferon intermuscular shots three times a week for 52 weeks. It was a drug trial and that was the only drug I was given other than some pain pills after life became unbearable. I have felt sick since the day I took the drug. Other than the time I took off for treatment, I did manage to keep working up until three years agowhen I came down with two autoimmune disease. I worked for community colleges for most of my work life and truly miss the students and other staff members. I feel like each day I lose more ability to do just about anything.
I am trying to find treatment for Post Interferon Syndrome that I know I have without ever having a doctor diagnose it. I hit every symptom on the list I found on this site, but now am trying to find a doctor to treat it. I don't know where to turn so I am hoping someone will respond and maybe help both of us as we struggle to get better. I sincerely wish you all the best and hope someone will reach out to both of us with some answers.

Jump to this post

Hi Barbara, To my knowledge, Post Interferon Syndrome (PIS) has only been recently been acknowledged by a small handful medical professionals. My endocrinologist here in Thailand was the first person to corroborate my conviction that I was suffering as a result of the interferon/ribaviron/bocefprevir test treatment I underwent in 2008-09. I don´t think you will have much luck finding someone who treats out ailment specifically. You might have better luck finding help with a ME/CFS specialist as the PIS is a subset of ME/CFS. I can offer you my experience. Through trial and error I have come to the determination that I must be the primary advocate for my own health. I have not found any one doctor that fits that bill. Consequently, I have a brain trust of doctors in different specialty areas including including a primary doctor (who I consult with frequently), an endocrinologist (I´m showing some indicators of early lupus), a neurologist (I discovered that I was suffering from sleep apnea and now use a CPAP device which has help my sleep considerably, a psychiatrist (I use medication to help with depression and anxiety) to name a few.

After a great deal of false diagnoses Dr. Montoya, previously with the Standford Infectious Disease Clinic, determined that I had ME/CFS. His treatment included antiviral medication. This diagnosis was confirmed by Dr. Meirleir in Brussels who used antibiotics to treat a Yersinia co-infection that I had. I also worked with Dr. Stewart in Austin, TX who did a genetic work up which helped identify liabilities in my immune system. Each of these doctors have helped me and through their guidance and have assisted in my developing my overall health plan. I´ve since added the supplemental herbal formula called "Vital Plan" promoted by Dr. Bill Rawls which has been helpful.

Although I´ve listed them above here are my symptoms:
1. Flu-like malaise, feeling “sick all over” – made worse by physical exercise
2. Insomnia, lack of restful sleep
3. In a state of constant fatigue
4. Severe migraine headaches (after accumulative exertion)
5. Tinnitus (nearly constant)
6. Swollen lymph nodes in neck (daily)
7. Heart murmur, palpitations
8. Cognitive function problems
9. Brain fog
10. Difficulty understanding speech (occasional)
a. I often use subtitles while watching DVDs to aid comprehension.
11. Attention deficit disorder
12. Memory loss – especially short term memory
13. Depression
14. Mood swings
15. Excessive irritability
16. Decreased libido
17. Frequent nightmares
18. Balance problems
19. Tightening of the muscles of the sole of my feet (usually at bedtime)
20. Swelling of hands
21. Sensitivity to light and loud noises
22. Alcohol intolerance
23. Dry eyes and mouth
24. Temperature and weather sensitivity

Over the last three years that I have been treating myself my symptoms have improved. I still suffer from severe relapses triggered from PEM of Post Exertion Malaise (malaise!?…I love that. Obviously whoever coined this phrase never suffered as we have!) which can last anywhere from 5 days to 5 weeks.

Last month I was able to read recreationally for the first time in five years! so I must be doing something right. I recommend keeping an open mind and being patient with your treatment plans. I found that if invariably took longer than I expected to see any positive change.

If anything I have mentioned resonates with you please feel free to follow up.

REPLY
@seakay

Hi Barbara, To my knowledge, Post Interferon Syndrome (PIS) has only been recently been acknowledged by a small handful medical professionals. My endocrinologist here in Thailand was the first person to corroborate my conviction that I was suffering as a result of the interferon/ribaviron/bocefprevir test treatment I underwent in 2008-09. I don´t think you will have much luck finding someone who treats out ailment specifically. You might have better luck finding help with a ME/CFS specialist as the PIS is a subset of ME/CFS. I can offer you my experience. Through trial and error I have come to the determination that I must be the primary advocate for my own health. I have not found any one doctor that fits that bill. Consequently, I have a brain trust of doctors in different specialty areas including including a primary doctor (who I consult with frequently), an endocrinologist (I´m showing some indicators of early lupus), a neurologist (I discovered that I was suffering from sleep apnea and now use a CPAP device which has help my sleep considerably, a psychiatrist (I use medication to help with depression and anxiety) to name a few.

After a great deal of false diagnoses Dr. Montoya, previously with the Standford Infectious Disease Clinic, determined that I had ME/CFS. His treatment included antiviral medication. This diagnosis was confirmed by Dr. Meirleir in Brussels who used antibiotics to treat a Yersinia co-infection that I had. I also worked with Dr. Stewart in Austin, TX who did a genetic work up which helped identify liabilities in my immune system. Each of these doctors have helped me and through their guidance and have assisted in my developing my overall health plan. I´ve since added the supplemental herbal formula called "Vital Plan" promoted by Dr. Bill Rawls which has been helpful.

Although I´ve listed them above here are my symptoms:
1. Flu-like malaise, feeling “sick all over” – made worse by physical exercise
2. Insomnia, lack of restful sleep
3. In a state of constant fatigue
4. Severe migraine headaches (after accumulative exertion)
5. Tinnitus (nearly constant)
6. Swollen lymph nodes in neck (daily)
7. Heart murmur, palpitations
8. Cognitive function problems
9. Brain fog
10. Difficulty understanding speech (occasional)
a. I often use subtitles while watching DVDs to aid comprehension.
11. Attention deficit disorder
12. Memory loss – especially short term memory
13. Depression
14. Mood swings
15. Excessive irritability
16. Decreased libido
17. Frequent nightmares
18. Balance problems
19. Tightening of the muscles of the sole of my feet (usually at bedtime)
20. Swelling of hands
21. Sensitivity to light and loud noises
22. Alcohol intolerance
23. Dry eyes and mouth
24. Temperature and weather sensitivity

Over the last three years that I have been treating myself my symptoms have improved. I still suffer from severe relapses triggered from PEM of Post Exertion Malaise (malaise!?…I love that. Obviously whoever coined this phrase never suffered as we have!) which can last anywhere from 5 days to 5 weeks.

Last month I was able to read recreationally for the first time in five years! so I must be doing something right. I recommend keeping an open mind and being patient with your treatment plans. I found that if invariably took longer than I expected to see any positive change.

If anything I have mentioned resonates with you please feel free to follow up.

Jump to this post

Hi @seakay,
Thank you so much for responding. Much of what you report about the symptoms you have are very familiar although I do have some differences. I think that will be the case with any one of us that has gone through this hell. I do have a primary care provider., a rheumatologist, endocrinologist, a cardiologist and go to a pain clinic. I was really hoping that “post interferon syndrome” would be the magic answer that would lead to one doctor that would have one treatment that would “cure” this illness, but that sounds like it is a dream that will never happen. I have tried cpap with no luck. I had to smile at your remarks on post exertion malaise. That is a term have never heard before but definitely can relate to. I know that every time I spend too much energy I may pay for it during the following days. I was also amazed at your comprehensive list of symptoms. It is much like what I suffer from with just a few differences. I don’t suffer from 5, 6, 17 or 19 and was so glad to hear that I am not the only one that can’t read for pleasure anymore. As a lifelong book lover that has been one of the hardest things for me to come to terms with over the years.
Thank you again for sharing your thoughts. It does help to know that one is not alone in this world

REPLY
@txnurse66

Unfortunately that sounds like the answers we are all getting. After being treated by rheumatologist for 5 years (9 years after treatment) for what he diagnosed as fibromyalgia. He said”oh this is Post Inteferon Syndrome. Question, what are supposed to do with this ?? Not getting any answers. Now that I am on a Medicare advantage plan, I can’t get the Tramadol and Elavil for treatment. Seems now that I am 66 these drugs are dangerous, according to our government. Is anyone being treated successfully??

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I am so sorry you can’t get the medicine that helps you. Are you sure it’s that it is not just your particular doctor that won’t prescribe the meds that helped you? I am on so many drugs now that I can’t imagine someone telling me I had to stop the ones that make me feel at least a bit better.

REPLY
@txnurse66

Has anyone tried researching clinical articles thru Google Scholar ? That’s where I’m looking next. Will let you know if come up with anything.

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I have never heard of google scholar but will see what I can find. Thanks for sharing

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@bt56

I am so sorry you can’t get the medicine that helps you. Are you sure it’s that it is not just your particular doctor that won’t prescribe the meds that helped you? I am on so many drugs now that I can’t imagine someone telling me I had to stop the ones that make me feel at least a bit better.

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I’m sure it’s a little of both. He could appeal for me. Thank you for your kindness.

REPLY
@seakay

I hear you. I feel your pain.

In 2009 -2009 I participated in a 2nd Stage testing of a 12-month HepC drug therapy using interferon, ribavirin and Boceprevir, a protease inhibitor being developed by Schering Plough. It was a terrible drug cocktail and I suffered painful rashes, flu-like
symptoms, insomnia and anemia. After 9 months I could no longer care for myself and had to quit the study before completion in the 11th month. The HepC virus was non-detectable within 3-4 months of starting the drug therapy and has remained so. Unfortunately, I didn’t fully recover from the therapy. I suffered from anemia, low white blood cell count, insomnia, depression and suicidal ideation. I was soon after diagnosed as bi-polar and treated successfully with lamictal (lamotrigine) 25 mg.

Although I was able to manage a normally paced life-style for the next 3 years I began to suffer from strange, periodic 1-2 month bouts of flu-like symptoms. Similarly, I suffered severe reaction to oral surgery in 2014 but this time never never recovered. I was consequently diagnosed with ME/CFS. My symptoms included the following:

1. Fatigue made worse by exercise
2. Flu-like malaise, feeling “sick all over”
3. Insomnia and non-restful sleep
4. Severe migraine headaches (after accumulative exertion)
5. Tinnitus (nearly constant)
6. Swollen lymph nodes in neck (daily)
7. Heart murmur, palpitations
8. Cognitive function problems
9. Brain fog
10. Difficulty understanding speech (occasional)
11. Attention deficit disorder
12. Memory loss – especially short term memory
13. Depression
14. Mood swings
15. Excessive irritability
16. Decreased libido
17. Nightmares (frequent)
18. Balance problems
19. Tightening of the muscles of the sole of my feet (usually at bedtime)
20. Swelling of hands and feet
21. Restless leg syndrome (infrequent)
22. Sensitivity to light and loud noises
23. Alcohol intolerance
24. Dry eyes and mouth
25. Temperature and weather sensitivity

Over the last 4 years I have traveled the world (I reside in Southeast Asia) searching out advice and receiving medical care from specialists including Dr. Stewart (Austin , TX), Dr. De Meirleir (Brussels, Belgium) and Dr. Jose Montoya (Stanford University, CA) as well as numerous authorities that I accessed online including Dr. Rawls at Vital Plan. Over this time and through great effort of experimentation I have cobbled together a self-prescribed treatment plan that has reduced the adverse effects of my condition and vastly improved my quality of life.

It was only recently that I received any feedback from ANY specialist that corroborated my conviction that my ME was caused by the interferon/ bocefivir therapy. My local endocrinologist confirmed that tests had recently been completed confirming averse effects on a percentage of interferon survivors. (I was unable to access any of these tests)

I stumbled on this Mayo chat only recently and was saddened to witness so much suffering. I too share the anger and often suffer from the despair that comes from the terrible isolation of this unrecognized and often maligned condition. Few of my friends and family have any real notion of the suffering I have endured and the pains to which I must go to manage my symptoms.

Obviously I´m not qualified to recommend treatment strategies. I have witnessed so many variations of adverse effects of the interferon and I´m convinced that there is no "one size fits all" approach to treating the illness. However, because of the apparent unwillingness of the medical profession to properly address post interferon syndrome, specifically, and ME/CFS, in general, I feel we must do what what we can to help each other develop the skills of self-advocacy to carry on. In that spirit, I hope to see the thread of shared anger and pain become a source of information and positive action and offer my experience.

Don´t give up.

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Thank you for sharing your experience. I completed treatment in 2014. My life has never been the same. Interferon/ribovarin has done more damage to my mind, body and emotions than anything else i have ever experienced. It's a personal holocaust only known by those who have been led down this dark tunnel of false hopes. The true hope was to clear the virus and have improved quality of life – health, vitality, opportunities, freedom. What i ended up with was severe and chronic suicidal depression, skin problems, gut problems, immune problems, hypersensitivity to drugs/chemicals/noise/smells/ light etc, chronic fatigue, brain fog, flu like symptoms after stress or exertion, loss of income, connections and thousands of lost dollars trying to treat post inteferon illnesses. I had to do a lot of work to let go of the resentments towards the staff who treated me – how could anyone knowing the side effects ever dispense such brutal and barbaric drugs. God forgive you and the drug companies. Ive lost my life, a successful career, hopes and dreams. I was always a go-getter…active and achieving. Now, my quality of life is lower than ive ever known or could conceive. I still regret i ever agreed to take this drug. Money could never compensate the anguish and suffering it has caused. If there were to be any compensation, its use would be to help access and pay for all the medical treatments to deal with long term side effects. I saw a holistic dr in 2017 for cfs. When i told her i was on inteferon, she said :"no wonder you're fatigued – didnt you know that drug causes wide spread organ damage". Like has been said, most Drs aren't interested in us. But there is a justice in the end, some where, someplace. We are not forgotten. There is One who sees all. May the Force be with you and strengthen you my fellow sufferers. We will have our day in the end.

REPLY

[Correction: I had interferon alpha 2b, not 2a, and yes, it was daily Rebetol.]

Hi,
I was treated for Hep C (genotype 2A) in 2001 with weekly 80 mcg Peg-Intron (interferon alpha 2b) and 400 mg daily Rebetol. (I know I had the ribavirin, I just don't remember the frequency.) The treatment lasted 8 months after which I had SVR.

In 2013 I injured my neck by moving it the wrong way. In 2016 I couldn't work anymore because I couldn't sit behind a computer more than an hour a day. I tried to get better with physical therapy and yoga. In 2010 I had severe exercise intolerance. My doctor said I might be going hypoglycemic, so I tracked my blood sugar. It would go low at the beginning of walking, then spike by the end. After five years, I figured out how to manage that: lower carb diet, protein snack immediately after exercise, and putting my feet up for at least 15 minutes a day.

I also had brain fog. I couldn't go back to my technical job. I tried freelancing, but it took too much effort to do it efficiently. I couldn't remember anything. I still can't remember anything and have to write EVERYTHING down. I attributed it to stress and post-menopausal menobrain.

Nothing improved and eventually I ended up with full-body pain, which is where I am now. My muscles cramp and my bones ache. I tried more exercise (which is what everyone suggested) and that made it worse, so I took two months off from that and just did physical therapy. It still got worse. The doctor ordered an MRI, which showed facet joint arthritis, in addition to knee and hand osteoarthritis that we knew about.

My doctor said to just take Tylenol (acetaminophen). After I picked my jaw up from the floor, I started wondering how something so life-changing would be judged as innocent enough as to be helped by acetaminophen. (I also wondered if acetaminophen was even safe for someone who had had Hep C.)

It wasn't until then that the words "post-interferon syndrome" popped up in my brain. I had read about it before, but didn't think it applied to me. My 8 months of treatment weren't that bad. Yes, I just went to work and slept and had to put my whole life on hold, but the doctor prescribed medicine for the nausea and any other side effects that I mentioned.

But here I am, almost 20 years past treatment, and I'm beginning to wonder. I am thankful that I have a liver left, and I realize that it might have been impossible to forecast such long-term effects, so I'm not angry. But I *am* frustrated by this chronic pain. I also worry that my doctors think I'm a big baby since they can't see reasons for the amount of pain I'm in.

I use a topical CBD cream, which seems to help, and sometimes also CBD drops. The problem with that is that is doesn't last. Every 3-4 hours the pain returns. I recently bought a CBD patch, which I'll be trying soon. CBD, of course, isn't covered by insurance, and I'm not working. The other less-expensive options (ice, heat, TENS unit, menthol rub, lidocaine rub) don't work as well or last as long, but they do help my medical expenses. Prescription lidocaine patches also help, but this is an off-label usage, so it's hard to get them prescribed. My doctor had me try Cymbalta, but stopped the trial because it wasn't showing any effect.

I'm curious to see how many others are around 20 years post-treatment and if you have chronic muscle, bone, and nerve pain — I think I saw a few posts here — and how you're dealing with it.

Mar2a

REPLY
@mar2a

[Correction: I had interferon alpha 2b, not 2a, and yes, it was daily Rebetol.]

Hi,
I was treated for Hep C (genotype 2A) in 2001 with weekly 80 mcg Peg-Intron (interferon alpha 2b) and 400 mg daily Rebetol. (I know I had the ribavirin, I just don't remember the frequency.) The treatment lasted 8 months after which I had SVR.

In 2013 I injured my neck by moving it the wrong way. In 2016 I couldn't work anymore because I couldn't sit behind a computer more than an hour a day. I tried to get better with physical therapy and yoga. In 2010 I had severe exercise intolerance. My doctor said I might be going hypoglycemic, so I tracked my blood sugar. It would go low at the beginning of walking, then spike by the end. After five years, I figured out how to manage that: lower carb diet, protein snack immediately after exercise, and putting my feet up for at least 15 minutes a day.

I also had brain fog. I couldn't go back to my technical job. I tried freelancing, but it took too much effort to do it efficiently. I couldn't remember anything. I still can't remember anything and have to write EVERYTHING down. I attributed it to stress and post-menopausal menobrain.

Nothing improved and eventually I ended up with full-body pain, which is where I am now. My muscles cramp and my bones ache. I tried more exercise (which is what everyone suggested) and that made it worse, so I took two months off from that and just did physical therapy. It still got worse. The doctor ordered an MRI, which showed facet joint arthritis, in addition to knee and hand osteoarthritis that we knew about.

My doctor said to just take Tylenol (acetaminophen). After I picked my jaw up from the floor, I started wondering how something so life-changing would be judged as innocent enough as to be helped by acetaminophen. (I also wondered if acetaminophen was even safe for someone who had had Hep C.)

It wasn't until then that the words "post-interferon syndrome" popped up in my brain. I had read about it before, but didn't think it applied to me. My 8 months of treatment weren't that bad. Yes, I just went to work and slept and had to put my whole life on hold, but the doctor prescribed medicine for the nausea and any other side effects that I mentioned.

But here I am, almost 20 years past treatment, and I'm beginning to wonder. I am thankful that I have a liver left, and I realize that it might have been impossible to forecast such long-term effects, so I'm not angry. But I *am* frustrated by this chronic pain. I also worry that my doctors think I'm a big baby since they can't see reasons for the amount of pain I'm in.

I use a topical CBD cream, which seems to help, and sometimes also CBD drops. The problem with that is that is doesn't last. Every 3-4 hours the pain returns. I recently bought a CBD patch, which I'll be trying soon. CBD, of course, isn't covered by insurance, and I'm not working. The other less-expensive options (ice, heat, TENS unit, menthol rub, lidocaine rub) don't work as well or last as long, but they do help my medical expenses. Prescription lidocaine patches also help, but this is an off-label usage, so it's hard to get them prescribed. My doctor had me try Cymbalta, but stopped the trial because it wasn't showing any effect.

I'm curious to see how many others are around 20 years post-treatment and if you have chronic muscle, bone, and nerve pain — I think I saw a few posts here — and how you're dealing with it.

Mar2a

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Hi Mar2a,
Although my symptoms are different than ours I wanted to reach out. My illness was caused by an test interferon, ribaviron, bocevivir experimental HepC treatment I underwent in 2007. It was a terribly toxic treatment and I finally dropped out of the study after 11 months. I was clear of the virus in 60 days and remain clear. However, I have been severely symptomatic (see above message) since June of 2014.

It is my understanding that "post interferon syndrome" is in the basket of disorders often designated as ME/CFS and fibromyalgia. I have treated my disease accordingly with mixed results. I suffer severe relapses after exceeding my limited exertional capacity. Because of the progressive nature of the illness and my increasingly weakening state, my relapses now last as long a 5-6 weeks. PEM or "Post Exertional Malaise" is the overriding, unifying diagnostic that all ME´s share. It sounds as though you too suffer from this. It is unfortunate that even some higher authorities in the medical profession still recommend exercise to treat our disease – the one thing that conclusively makes us sicker!

You have probably realized that there are very few doctors that have any understanding of disorders like ours. We have to be our own advocates which requires effort that few of us have the capacity for. Nevertheless, we carry on… combing the internet for new information, experimenting with supplements to support our compromised systems, trying out different pharmaceuticals to aid sleeping and mitigate our discomfort.

I support your efforts to better understand and treat your disease and am happy to share my experience if it can be at all helpful.

C.K

PS If you haven´t already discovered healthrising.org please take a look. Founder, Cort Johnson, does an amazing job keeping us current with developments in the ME Fibro world.

Liked by mar2a

REPLY
@zak

Thank you for sharing your experience. I completed treatment in 2014. My life has never been the same. Interferon/ribovarin has done more damage to my mind, body and emotions than anything else i have ever experienced. It's a personal holocaust only known by those who have been led down this dark tunnel of false hopes. The true hope was to clear the virus and have improved quality of life – health, vitality, opportunities, freedom. What i ended up with was severe and chronic suicidal depression, skin problems, gut problems, immune problems, hypersensitivity to drugs/chemicals/noise/smells/ light etc, chronic fatigue, brain fog, flu like symptoms after stress or exertion, loss of income, connections and thousands of lost dollars trying to treat post inteferon illnesses. I had to do a lot of work to let go of the resentments towards the staff who treated me – how could anyone knowing the side effects ever dispense such brutal and barbaric drugs. God forgive you and the drug companies. Ive lost my life, a successful career, hopes and dreams. I was always a go-getter…active and achieving. Now, my quality of life is lower than ive ever known or could conceive. I still regret i ever agreed to take this drug. Money could never compensate the anguish and suffering it has caused. If there were to be any compensation, its use would be to help access and pay for all the medical treatments to deal with long term side effects. I saw a holistic dr in 2017 for cfs. When i told her i was on inteferon, she said :"no wonder you're fatigued – didnt you know that drug causes wide spread organ damage". Like has been said, most Drs aren't interested in us. But there is a justice in the end, some where, someplace. We are not forgotten. There is One who sees all. May the Force be with you and strengthen you my fellow sufferers. We will have our day in the end.

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Hi, I still cry when i read these. I had treatment in 2011 n has destroyed my life. PLS EVERYONE…U HAVE TO TURN THESE DRUGS IN THE FDA, THEN CONTACT MERCK AS I AM DOING!!! Pls contact me as i will never give up the fight…i was a RN n have a MPH n now hardly able to function on a daily basis…i feel like i am slowly dying everyday while losing my mind.

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@ldestella

Hi, I still cry when i read these. I had treatment in 2011 n has destroyed my life. PLS EVERYONE…U HAVE TO TURN THESE DRUGS IN THE FDA, THEN CONTACT MERCK AS I AM DOING!!! Pls contact me as i will never give up the fight…i was a RN n have a MPH n now hardly able to function on a daily basis…i feel like i am slowly dying everyday while losing my mind.

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I completed my treatment over 20 years ago. I also feel, like I’m dying and losing my mind. All these years and it’s still a daily struggle. And who do I talk to? The doctors don’t want to hear to hear about it. They will help with symptoms but that’s it. It sucks. If I had to do one thing over in my life I would die from hep c. I wouldn’t wish this on anyone. I don’t talk about it with anyone. Unless it’s happening to you I sound like a whiner. “ At least you’re cured!” F*%k you. Do you want to trade places?

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@ldestella

Hi, I still cry when i read these. I had treatment in 2011 n has destroyed my life. PLS EVERYONE…U HAVE TO TURN THESE DRUGS IN THE FDA, THEN CONTACT MERCK AS I AM DOING!!! Pls contact me as i will never give up the fight…i was a RN n have a MPH n now hardly able to function on a daily basis…i feel like i am slowly dying everyday while losing my mind.

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I just discovered this site. I did year long peg interferon, ribavirin in 2003. I have been sick every since. I have chronic fatigue syndrome. I cannot work anymore. Is there anything I can do?

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