Imunovir and Inosine for Treating ME/CFS

 

(Newly Updated as of June 20, 2024)

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.

NOTE: As explained in that earlier post, Imunovir is the prescription version of inosine, available in Europe and Canada. For a while, we bought ours from a Canadian pharmacy. We switched to generic inosine supplements, sold over-the-counter in the U.S. and many other places, and saw no difference in performance, though the supplement is much cheaper!

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 (available at the link). Plus, the coated caplets are smaller than most capsules, so we can fit them in our medicine boxes! Occasionally, 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. And when our favorite brand is available, we stock up!

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.

UPDATE as of March 2022: 

I went into an unexplained relapse of my ME/CFS starting in March 2020 that lasted for 22 months. I tried a lot of new/increased treatments during that time that all helped me gradually improve, but the last thing I did, in late Fall 2021, was to increase my "high-dose" weeks of inosine from 5 pills a day to 6 pills a day. This wasn't really brilliance on my part, but a mistake one week when I miscounted the pills and put 6 a day into my reminder boxes! It turned out to be a happy mistake, and that last change finally got me back to my "normal" baseline in December 2021. Just last month, in February 2022, I took my usual 2-week break from inosine (I do that about every 3-4 months). I restarted it, as usual, with my low dose of just 2 pills a day. The following week, I jumped right back up to 6 pills a day ... and it was too much for me! I experienced increased immune symptoms (mainly terrible flu-like aches all week). After my weekend break and then going into my next low-dose week, I felt better. This week, a high-dose week, I am taking just 4 pills a day and doing well. So, I have learned that after a break, I need to gradually build up my "high" dose again, just as I did in the beginning (it took many years for me to get my high dose from 2 pills a day to 6 pills a day). Just another tip learned from hard experience - always learning with this crazy disease!

UPDATE as of June 2023:

Last fall, I again went into a bad relapse, this time triggered by a change in hormone levels (suddenly stopping birth control pills that I had taken for decades to keep hormone levels steady). That one change led to my worst month since the start of my illness, crashed and unable to function 78% of the time! The change in medication led to a cascade of hormonal/endocrine issues, including worsened thyroid dysfunction. I once again had constant flu-like aches, indicating that my immune system was overactive. I noticed that I felt better during my usual 2-week break from inosine and worse after attempting to restart it. So, in addition to treating the hormone issues directly, I also stopped taking inosine in November 2022. As of June 2023, I am still not taking it and feeling quite good, able to function and be active without crashing (though I am still struggling to normalize thyroid function). This just shows you the complexities of how the immune system works and how inosine can help. In early 2022, taking more inosine helped me, and in late 2022, stopping inosine also helped me. it's important to listen to your body and pay careful attention to the effect that each treatment has.

UPDATE as of June 2024:

One of my big issues the past few years has been yeast overgrowth, and I finally got it under control this year, thanks to a very strict diet (almost no carbs), on top of all the other anti-yeast treatments I take. I realized last week that if I "cheat" on the diet in any way--even just a few strawberries or a piece of fried chicken--the thrush is back on my tongue, and I feel worse again. Since yeast is an issue in ME/CFS due to immune dysfunction, I remembered that I've been off inosine for a year and a half. Since it helps to normalize immune function, I restarted inosine last week, and as before, it's helping! My energy is better, and I'm hoping as I increase the dose, it will help with yeast overgrowth so I don't have to be quite so strict with diet (though I'll still need to stick to it most of the time). Note that I took a half caplet each weekday last week, and a full caplet each weekday this week. I'll slowly, gradually get back to a higher dose (on my high dose weeks). That's the way it is with inosine and other immune modulators: if it's not helping any more, increase the dose or take a break.

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