Wednesday, April 16, 2014

Imunovir Update and Inosine

I have been struggling a bit lately because of a shortage of Imunovir, an immune-modulating medication that helps me quite a bit, so I thought I'd give a brief update here and also find out if any of you have any experience with inosine, a generic compound similar to Imunovir.

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.

The quick version is that I am still doing well on Imunovir - in all the ways and for all the reasons I explained in that earlier post. There is no question that while on Imunovir 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).

I thought it wasn't working well for me anymore at one point last year, 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 Dr. Cheney recommends (though specific to my own needs). So, for the past year or so, I have been taking 2 pills a day for a week, then 4 pills a day for a week, with weekends off, alternating weeks with 2 and 4 pills a day. In addition, every 2-3 months, I 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!

So, that is all well and good, except that Imunovir is now (temporarily?) unavailable. There is only one manufacturer in the world - Newport Pharmaceuticals in Ireland - and they say Imunovir is now on "long-term backorder," with no date for when it will be available again. The good news is that they haven't officially discontinued it (yet?), but it is impossible to get for now.

When I heard this news, my son and I both took our "break" to make our remaining supply last longer. We did our usual two weeks off. Problem is that this is high allergy season, and we both noticed increased allergy symptoms without the Imunovir to even out our over-active immune systems. This week would have been our third week off...but I felt so awful on Monday and Tuesday that I gave in and began taking it again yesterday! Within a few hours, my aches faded, my mind felt clear again, and my energy returned. I felt like myself again! What a relief. However, I only have enough Imunovir left for about another two weeks...then I can try another two week break, but after that, I am out of luck.

So, I am looking for alternatives. A local friend with ME/CFS told me that she used the generic form, inosine, and that it was effective for her. From what I've read, inosine isn't the exact same molecule (Imunovir is inosine pranobex), but it is similar, and - surprise! - it is sold here in the U.S. as a supplement. It's also about a fifth of the cost of Imunovir, so I ordered some from Amazon and will try it starting next week.

I'll let you know how it goes, but I wondered if any of you have experience with inosine and if so, how it worked for you. And if anyone has been able to compare inosine and Imunovir and tried both, I would love to hear about it.

Wish me luck!

P.S. In my research this week, I also learned a couple of interesting things: that inosine is classified as both an immune modulator and an antiviral, and that inosine is being used in some very promising studies with Parkinson's patients. Imunovir has also been used in NIH studies on cancer patients, to mitigate the immune effects of chemotherapy.


  1. Sue, I use inosine. I'm a Cheney patient, but I don't vary it, because I need it for sleep. Dr. Cheney thinks it does that by interfering with a cytokine storm in my brain. I sense that it is very helpful in keeping me stable, but I haven't ever gone off of it since starting it in 2009. -Jocelyn

  2. How much inosine do you take NPG?

    1. Hi, Joanne - I explained our dosing schedule in this blog post (above) - dosing is complicated with inosine/Imunovir.


  3. Sue
    Do you or your sons ever find you feel much clearer headed just before a new virus? For me this is the only time im completely brainfog free (although cognitive problems fluctuate a lot for me). I think this is to do with TH2 dominance immune imbalance from what other pwme say. If you get similar, do you think inosine creates a similar brainfog holiday for the same reason?

    1. Well, we don't normally catch viruses because of the Th2 dominance. We rarely catch colds, for instance. We do sometimes crash from the immune stimulation when exposed to a virus (I call that a virally-induced crash) but the inosine has greatly decreased that - it rarely happens now.

      So, no I've never noticed brain fog actually improving before a crash - quite the opposite.

      However, I - and most other people - saw a big improvement in brain fog after taking antivirals for reactivated viruses (EBV and HHV-6 in my case) - that is true for most people - treat underlying infections and one of the first improvements noticed is improved mental clarity.

      Here's a post I wrote, trying to describe that mental clarity:

      Inosine has definitely helped with the immune dysfunction and greatly reduced the number and severity of crashes.


    2. I've ordered inosine from Amazon and done a bit more reading. It is surprisingly affordable. On top of the immune effects it is involved in mitochondria stuff (not pretending to fully understand! ) AND it's a vasoconstrictor which should help with my POTS concrete legs. On the downside kidney stones are quite frequent (ouch!). Also if you have too much protein you can get gout and I find protein at every meal helps with other things like blood sugar balance. Do you do anything to prevent these side effects? Does pulsing the dose also help avoid side effects? I read something about potassium citrate but I'm cautious with potassium because up potassium means down sodium (and POTS problems).

      BTW I get what you mean about inappropriate response. I had sore throat type symptoms the other day. The first weirdness is I can't tell whether ME symptom or actual new virus. Instead of going into a cold I now ache all over like an inflammatory response. My partner got a standard, mild cold and got over it. My lay person interpretation is I attempted a th1 response but for some reason switched to inappropriate th2 reaction.

    3. Huh, I had no idea it has vasoconstrictor properties - that's great! As for the negative side effects you read about, I have never heard of those before in anyone who uses it, and my doctor who first prescribed Imunovr to me never mentioned them - I wouldn't worry about it. My son and I get liver & kidney function tests all the time - never any problems. And we eat a Paleo diet with plenty of protein so no problems there either.

      As for pulsing the dose, this is a MUST. If you take the same amount every day, every week, it will stop working. Our dosing schedule is explained in this blog post & it has worked well for us. We have never gotten up to a full dose of 6 pills a day but that's what has worked for us.

      Yes, you are describing just what I meant! We don't catch colds, but being exposed to the virus causes our immune systems to over-respond (that's the Th2 dominant response), hence the increased immune symptoms - sore throat, aches, fatigue. Inosine has helped to calm down that over-response a LOT - rarely happens to my son and I now. Low-dose naltrexone helps, too.

      Good luck - let me know how it goes! Be sure to start with a low dose and go slowly - at first, it may cause increased immune symptoms. So start with just 1 pill a day for 5 days (always weekends off) or even just a half a pill a day the first week, if you tend to overreact to meds.


  4. If anyone else reading this is concerned about the kidney stone thing, sodium bicarbonate is meant to prevent too. This would seem better for POTS (some people use this anyway as part of salt loading). Also you can keep an eye on uric acid through cheap urine test strips.

    Reading Phoenix Rising people do seem to get particularly strong reactions to inosine initially but then benefit if they can tolerate sticking with it. One suggestion is swish and spit - you swish a tablet around in your mouth but spit it out before swallowing to start with and then move to 1/2 pill and so on. It's also a weird one because it sounds like viral symptoms show it's doing its job?

    I'll let you know how I get on.

    1. Interesting tips - thanks for sharing!

      I think it causes immune symptoms because it is stimulating the immune system a bit (though its long-term effect is to normalize it). It also acts as an antiviral, so if you have some reactivated viruses (as most of us do), that may be another factor.

      Good luck!