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Alpha Interferon

Dosage, sources, and other info on the drug based on Linda's experience

I have never had any side effects at all from oral interferon, although some other patients have told me that they experienced an increase in their flu-like CFS symptoms (pain, fever) that lasted a few hours. They have all said that the side effects did not recur after they lowered the dose. I've also talked with a couple of patients who didn't have any significant improvement, but I don't know how much they experimented with the dose. If I hadn't experimented around until I found the right dosage and frequency, I don't think I would have had this much improvement.
It seems that every patient I talk with takes a different dose of oral interferon. I started off at 50 units three times a day; got some fast improvement, but then began to deteriorate again, so I increased the dose; kept doing this for a month or so until I got to 250 units four times a day, at which level I continued to gradually improve with no setbacks. But other patients I know have done wonderfully on 50, 75 or 100 units three or four times a day -- my mother has been on 75 units three times a day since October, and she says that she no longer has fibromyalgia. I don't know anyone else who takes as large a dose as I do. I haven't talked with anyone who has had major improvement taking it less than three times a day, but then I've only talked with a dozen or so patients. I do know that, in the published clinical trials, they found that different dosages work best for different diseases: 150 units three times a day worked best for Sjogren's syndrome, but 50 units three times a day worked best for fibromyalgia. And here's me taking 250 units. And in the trials a few patients did better at 450 units! Go figure.

I couldn't find a local pharmacist who was willing to mix the doses for me (it has to be diluted from the 3-million-unit doses it's usually sold in down to the much lower oral doses, which has to be done carefully and is a royal hassle to do yourself) but I've found a pharmacy in Texas that will ship it in pre-measured individual doses for 80 cents a dose plus $25 shipping (it has to be shipped frozen, overnight) if your doctor calls them and orders it for you. Insurance doesn't cover it, of course, since it's an off-label use. It costs me about $145 a month (120 doses plus shipping). My mother only takes three doses per day, so her cost is $90 per month (hers is shipped along with mine). I've put contact information for the pharmacy, as well as some general information articles about oral interferon, on my website .

A different form of oral interferon -- in lozenges that you dissolve in your mouth like a cough drop -- is in Phase III testing for Sjogren's syndrome and Phase II testing for fibromyalgia. The fibromyalgia testing is being done by Dr. Jon Russell at the University of Texas, San Antonio. The Sjogren's testing is being done at a number of different sites. It's probably going to be quite awhile yet before the testing is completed and the results are published.

By Linda
To read Linda's recovery story click here.