Post Interferon Syndrome

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

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!

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.

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.

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.

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??

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.

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.

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.