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.
