2014: I have been struggling a bit lately because of a shortage of Imunovir, the prescription brand name for inosine, an immune-modulating medication that helps me quite a bit, so I thought I'd give a brief update here, as we switch from the prescription Imunovir (sold in Europe and Canada) to inosine, a generic compound similar to Imunovir, which is sold (far more cheaply) as a supplement in the U.S. and elsewhere around the world.
I looked back at my last post on Imunovir, where I described my experiences with it and how much it has helped me - I was surprised to see that I wrote that over two years ago! So, I am overdue for an update anyway.
While on Imunovir/inosine I have more good days, fewer bad days, fewer virally-induced crashes (caused by exposure to viruses, especially in winter), reduced allergy symptoms, and fewer immune-related symptoms (like sore throat and flu-like aches).
The quick version is that I am still doing well on Imunovir/inosine - in all the ways and for all the reasons I explained in that earlier post. There is no question that while on Imunovir/inosine I have more good days, fewer bad days, fewer virally-induced crashes (caused by exposure to viruses, especially in winter), reduced allergy symptoms, and fewer immune-related symptoms (like sore throat and flu-like aches).
Inosine is classified as both an immune modulator and an antiviral, and inosine is being used in studies with Parkinson's, MS, and ALS patients. Imunovir has also been used in NIH studies on cancer patients, to mitigate the immune effects of chemotherapy. The reason inosine works so well for ME/CFS is that it is an immune modulator. The specific kind of immune dysfunction in ME/CFS is a mixed bag: our immune systems are partly over-active and partly under-active. So, there are treatments (mostly steroids, which suppress the immune system) available for autoimmune disease, where the immune system is entirely over-active, and there are treatments (immune boosters) available for immune deficiency diseases, like AIIDS. But ME/CFS is in the middle - elements of both but not entirely one or the other, which means that none of those treatments works well for us. An immune modulator, like inosine, doesn't either suppress or boost the immune system but helps to normalize and balance it...which is just what we need. Other treatments we've tried that act as immune modulators and help to normalize the immune system include low-dose naltrexone and glutathione injections or nasal spray.
At one point back in 2013, I thought inosine wasn't working as well for me anymore, and then I remembered the advice about constantly varying the dose. I was pretty much sticking with 4 pills a day 5 days a week, weekends off, because I was afraid to go without it. I decided to try a dosing schedule closer to what ME/CFS expert Dr. Cheney recommends (though specific to my own needs). So, we began taking two pills a day for a week, then four pills a day for a week, with weekends off, alternating weeks with two and four pills a day. In addition, every 2-3 months, we take two weeks off completely. Like magic, this worked! He is absolutely right - when you vary the dose and take breaks occasionally, it works better. I had been afraid to take even a week off since it helps me feel so much better, but I have found that I still feel good for those two weeks off...and great when I start back on it!
Now, in 2019, we still take two pills a day (one at breakfast and one at lunch for my son and after my afternoon nap for me) on low-dose weeks, and we are now up to 5 pills a day (3 at breakfast and 2 at lunch/after my nap) on high dose weeks. We discovered that inosine is very stimulating, so we try to always take all of the pills before 3-4 pm so it won't disrupt our sleep. And every 3 months or so, we skip inosine entirely for two weeks.
When Imunovir (a prescription not available in the U.S.) was temporarily unavailable in 2014, we switched to generic inosine, sold as a supplement, and saw no difference at all. There is only one manufacturer of Imunovir in the world - Newport Pharmaceuticals in Ireland - so availability was often an issue, plus we had to pay to ship it from Canada (with a special permission form signed by our doctor, explaining that it is unavailable in the U.S.).
My son and I switched to generic inosine when I first wrote this post in 2014, available as a supplement in the U.S., and we found absolutely no difference from the Imunovir. So, we have remained on inosine since it works the same and is much cheaper this way (and with no international shipping fees either). We have continued using the dosing schedule I describe in this post, which works very well for us. We started with just 1 pill a day for 5 days (always take weekends off) and stuck with just 1-2 pills a day for the first few weeks. Note that you may have to start out very low with the dosing until you get used to it and you may see an increase in immune-related symptoms in the first weeks (if so, start even lower, with a 1/2 pill). You MUST keep changing the dose around to keep it effective - this is true for all immune modulators.
Any brand of inosine seems to work similarly - just make sure you get 500 mg inosine, with nothing else added. Our favorite brand of inosine is Source Naturals, a brand that our dietician recommends because it is known for high-quality and purity that is also inexpensive. Plus, the coated caplets are smaller than most capsules, so we can fit them in our medicine boxes! This website also sells the Source Naturals brand of inosine. Occasionally (as in right now, in February 2021), this brand of inosine gets back-ordered and is not available anywhere. When that happens, we go back to our usual source for supplements, Amazon, and look for another brand. This brand is currently available there. Sometimes, there is none to be found! I think more people have been using it since the pandemic began. When we can't find it anywhere, that's when we take our 2-4 week break, and it is usually available again by the time we need it.
Because ME/CFS is, at its heart, an immune disorder, treating immune dysfunction can improve all of your symptoms. That's certainly been the case for us, with excellent results and significant improvement from inosine, as well as low-dose naltrexone and glutathione. And these are all very inexpensive treatments! Definitely worth a try.
I would love to hear about your experiences with inosine or Imunovir in the comments below.
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