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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.
Replies to "Hi Barbara from another Barbara. I am 24years post Intron Interferon Alpha 2A. I was given..."
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.
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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.