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Thursday, May 15, 2014

Inosine vs. Imunovir for ME/CFS

A few weeks ago, I mentioned here that there was a shortage of Imunovir, the prescription immune modulator that my son and I take, and that we would be trying inosine (the generic equivalent, sold in the U.S. and elsewhere as a supplement) as an alternative. Refer back to that post for details on what Imunovir and inosine do.

So, I have now been on inosine for three weeks (and my son for the past two weeks), and I am happy to report that it seems to be working just as well as Imunovir did for us! In fact, we were both exposed to some viruses recently, and the resulting crash lasted only a few days for each of us (that kind of virally-triggered crash used to knock us each out for a month or more). I really can't feel any difference at all between Imunovir (the brand name prescription drug manufactured in Ireland) and inosine (the generic alternative sold in the U.S. as a supplement).

The brand we have been using is Source Naturals, which I bought through amazon for a fraction of the cost of the Rx (about one-sixth)...plus free shipping instead of $30 to ship from Canada!

So, all in all, things are going well. At this point, given the huge price difference, we will probably stick with inosine even if Imunovir becomes available again.

NOTE, as of September 2019: Source Naturals is still our favorite brand of inosine, but all brands of inosine have been unavailable from Amazon lately, so I have been buying ours from e-Vitamins, which has low prices and fast shipping:

Source Naturals Inosine  - 120 Tablet
at

6 comments:

  1. Irena11:18 PM

    I was excited to hear your feedback about Inosine, going to try it myself soon.

    Can you remind the intake schedule that you are currently doing?

    Thanks!

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    1. Sue Jackson5:31 PM

      Hi, Irena -

      It's a complicated dosing schedule - click on the link to the earlier post (the first link here) for an explanation of how we take it. I hope it helps you!

      Sue

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  2. Cloud Cuckoo7:08 PM

    Hi, slightly confused by names here. I look up Imunovir on the UK NHS Choices site and it takes me to 'Inosine Pranobex', which it suggests is the same thing, and is an antiviral only available on prescription and with side-effects. But checking the herbal supplement also named 'Inosine' you highlight, that is available freely on the web and is touted as a muscle supplement for athletes, with no mention of side effects. Are you sure you have the right 'Iosine'?
    Best wishes, Jamie

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    1. Sue Jackson9:41 PM

      Hi, Jamie -

      You did your homework! Yes, you are right - inosine is a slightly different chemical compound than inosine pranobex - but only slightly.

      Imunovir IS officially classified as an anti-viral in Europe where it is sold (which makes it even better for us!), but it also acts as an immune normalizer or immune modulator...that double-effect is double good for people with ME/CFS.

      The two aren't exactly the same for everyone, but a friend had been telling me for years that inosine was far cheaper and worked just as well for her...and fortunately, the same was true for my son and I!

      As for side effects, since it is an immune modulator and antiviral, you might have some increased immune system symptoms - like sore throat, swollen glands, flu-like achiness. If so, go very slowly and gradually and listen to your own body. Most experts recommend 6 pills a day for people with ME/CFS, but that's always been too much for me - I never go higher than 4 pills a day.

      Start with just 1 a day, pay attention to what effects it has, and give your body some time to adjust (remembering to always take weekends off).

      And if you have latent or reactivated viruses in your system, as most people with CFS do (due to our dysfunctional immune systems), then you might experience a "herx reaction", a temporary worsening caused by the inosine killing off virus that floods into your bloodstream. If that happens, it should go away after a while.

      Hope that helps answer some of your questions!

      Sue

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  3. Anonymous6:22 PM

    Glad this is working for you both! I was wondering do you recommend taking this for a person wit CFS/M.E who never catches viruses or has tpical flu symptoms with their CFS? (I am one of those ones) I want to try inosine, but worried it may not be appropriate for me

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    1. Sue Jackson12:17 PM

      If you do have ME/CFS, then inosine can help because ME/CFS is, at its heart, an immune disorder, and inosine helps to normalize the immune system. You can read more about the immune abnormalities here:

      http://livewithcfs.blogspot.com/2012/01/immune-system-abnormalities-in-mecfs.html

      In fact, what you describe - never catching viruses - is one of the characteristics of the dysfunctional immune system in ME/CFS. Our immune systems are over-active against viruses, as explained in that post, but under-active against bacterial infections.

      After several years on inosine, I had my first "normal" cold in 15 years in January! I actually caught a cold and it took a fairly normal course - I was so excited!

      Sue

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