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 comment:

  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

    ReplyDelete