Wednesday, April 16, 2014

Imunovir and Inosine for Treating ME/CFS

(Newly Updated as of September 25, 2019)

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! We used to buy inosine from Amazon (where we buy most of our supplements), but they have been out of stock a lot lately, so we've been buying from eVitamins. I have been very happy with their service, fast and free shipping, and low prices.

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.
Source Naturals Inosine  - 120 Tablet



Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you.

43 comments:

  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

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  2. How much inosine do you take NPG?

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

      Sue

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  3. Anonymous4:59 AM

    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?

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    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:

      http://livewithcfs.blogspot.com/2012/02/mental-energy-and-mecfs.html

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

      Sue

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    2. Anonymous3:38 AM

      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.

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    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.

      Sue

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  4. Anonymous6:49 AM

    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.

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    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!

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  5. Reading about your effect on pulsing the Inosine dose it made me wonder if you do it with other supplements too? I feel that with a lot of the supplements I take the effect is fading over time and is wondering if it will make a difference to vary the dose over time?
    I'm very new with ME and has no doctor to help with any advice so I'm trying a lot of things myself. Using D-Ribose, Q10, l-carnitine, c-vitamin, b-vitamin, d-vitamin, high dose Sct John's wort and has just ordered Inosine

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    1. Pulsing is a special requirement for any medication or supplement that works on the immune system - so, low-dose naltrexone, inosine. Its because your immune system gets used to the same dose every day and it doesn't work as well after a while.

      As for vitamins, the ones that are water-soluble, like vitamin D, C, A, and forms of B are processed by your liver & kidneys, with excess excreted in your urine - so your body can't store these. That means you need them every day in order to keep adequate levels in your body.

      So, bottom line is that pulsing is specific to immune treatments (of which there are very few).

      You should find a doctor who can help you - maybe these databases can help (though I think the first one's been taken down):

      http://livewithcfs.blogspot.com/2011/01/finding-doctor-for-mecfs.html

      And here is an overview of the treatments that have most helped my son and I - many of them do require a doctor's assistance but not necessarily an ME/CFS specialist - our primary care doctor has prescribed most of these:

      http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html

      Good luck!

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  6. Anonymous2:58 PM

    Hi Sue,

    I appreciate this is a really old post. I noticed your comment where you wrote 'Pulsing is a special requirement for any medication or supplement that works on the immune system - so, low-dose naltrexone, inosine. Its because your immune system gets used to the same dose every day and it doesn't work as well after a while.'

    Does this mean you pulse your LDN? I've recently restarted it but never realised pulsing might help.

    Many thanks,

    Jason

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    1. Hi, Jason - it's an older post but still very relevant! Here are details of our LDN dosing & experience:

      http://livewithcfs.blogspot.com/2014/08/low-dose-naltrexone-update-and-dosing.html

      LDN is a bit different because, although it does help to normalize the immune system, it does so in a unique way through endorphins. In the case of LDN, dosing is more about brain chemistry and how quickly (or slow) that endorphin chain reaction happens. Generally, less is often more for LDN! Some people do well on just 1 mg. We take 3 mg. We switched to every other day after about 5 years & that helped again - it's all explained in that post. It also has links for more info on LDN, if you want to learn more about how it works (I think one of those sites has a great video clip to explain it).

      Hope that helps!

      Sue

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    2. Thanks I will have a look. Something for me to consider as my treatment will be ongoing.

      Jason :)

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    3. Sergi6:00 PM

      Can you take inosine and LDN at the same time?

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    4. Sergi - Yes, LDN and inosine are synergistic and work well together. I started both on the advice of the same doctor, Dr. Susan Levine, one of the top ME/CFS doctors in the world. My son and I have taken both for many years now.

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  7. Where/How/How much £,do I get Inosine from? (UK).

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    1. I don't live in the UK, so you'll have to check around. Imunovir (the prescription version) is manufactured in Ireland and available all over Europe & Canada. Here in the US, we can't get Imunovir but inosine is sold as a generic supplement. As I mentioned here, I buy ours through Amazon. So, you can check Amazon UK or wherever you buy supplements, and you can also check with your doctor re: Imunovir.

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  8. I Have "Brain-Fog"/Brain TIREDNESS... :( (Hull).

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    1. Inosine can definitely help with that, Chris. It helps to normalize the immune system - since a dysfunctional immune system is at the heart of this disease, treating and improving that will help ALL symptoms. Your other approach should be to find and treat underling infections. In cases of bad brain fog, there are almost always infections behind the scenes and treating them can bring dramatic improvement. Improvements in mental clarity were the first thing I noticed when I took antivirals.

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  9. Hello Sue,
    I have read dr Chaney's dosage for inmunovir and he says to begin with 6 tablets the first week. I am going to begin inosine and I think that 6 tablets for the beginning would be too much. I thought about begin with 1 tablet of 500mg first week, weekends off, and growing the dossage to 6 tablets per day increassing 1 tablet/day per week and then follow dr Chaney's instuctions, what do you think?
    regards
    Sergi

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    1. Hi, Sergi -

      So sorry for the delay in getting back to you - I was on vacation. Your instincts are right - definitely DON'T start at 6 tablets of inosine a day - yikes! That's a lot. After taking it for many, many years, my son and I still don't take 6 tablets a day!

      You are right to think to start low - ALWAYS with ME/CFS. So, yes, start with 1 pill a day (if you have any side effects, go down to just a half pill a day - the Source Natural brand are caplets that could be split in half or you could get capsules and pour the powder out & divide it in half.

      You want to always takes weekends off and always vary the dose from one week to the next. So, if you start with 1 pill a day for 5 days, the next week you work up to 2 pills a day for 5 days and then the 3rd week, you go back to 1 pill a day, etc. In that way - alternating weeks of low dose and "high" dose (however high you've gotten so far) gradually work your way up. We have stayed at 2 pills a day alternating weeks with 4 pills a day for many years - we have just begun to increase our higher dose weeks to 5 pills a day. So, you don't necessarily need to get all the way up to 6 - listen to your body and see what works best for you over time.

      Hope this helps - good luck! Let me know how it goes -

      Sue

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    2. Dizzy7:27 PM

      Hi. Thanks for the information. Do I need to stop my d ribose if I take Inosine? Thanks.

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    3. No, no need to stop D-ribose. It has a completely different function than inosine (provides sugar/food for energy production), so it wouldn't interfere with inosine at all.

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  10. Dizzy5:53 PM

    Thanks so much for the information Sue. Will give it a try.

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    1. Good luck! Remember to follow the instructions on dosing carefully - it only works if you keep changing the dose constantly...and take a break from it once in a while.

      Also, always start very low and slowly build up - start with just 1 pill a day for 5 day (weekends off always) or even a half-pill a day to start (the Source Naturals are caplets rather than capsules so could be cut in half).

      Good luck!

      Sue

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  11. Anonymous8:35 PM

    Have you tried Inosine + DMAE? Some say it is similar to Immunovir and that it makes more of an effect than Inosine alone. Greetings.

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    1. I've never even heard of DMAE! Looking into it now. Thanks for the tip!

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  12. Hello! I found this blog while Googling uric acid. My levels are low (and always have been), and I'm trying to see if these quirks could be an indication of a possible treatment.

    I've had fibromyalgia and chronic pain for 27 years now, and am constantly researching the next "hopeful therapy." Gout is positively correlated with scholastic intelligence and achievement (think Ben Franklin), so it makes sense that it would help with cognition, and that those of us low in uric acid, might struggle with the "fog." (Although that is by far my least bothersome symptom.)

    Thanks for relaying your experience with inosine for those of us contemplating trying it!

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    1. You're welcome! Hope it helps you!

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  13. Hello Sue, I found your blog while looking up side effects of Inosine. My CFS doctor, Dr. John Chia recommended I add Inosine to his supplement, Equilibrant, which is an immune modulator he created. I have CVID and Coxsackie B virus. I started the Inosine two weeks today (2 tabs/day) with 2 tabs/day of Equilibrant and I feel terrible. It feels like a major flare up. Bad fatigue, brain fog and joint and lymph node pain. Do you think it will get better over time and this is just my immune system fighting the virus? It's had been a rough fall/winter with lots of flare ups because I work at an elementary school so that's why Dr. Chia told me to add the Inosine. I'm hopeful after reading about your experience with Inosine but finding it hard to imagine feeling better right now. Thank you for sharing your wisdom and experience with other CFS sufferers.

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    1. Hi -

      Good to hear you are under the care of Dr. Chia - he's one of the top ME/CFS experts. It sounds like you started out on too high a dose of inosine - what you are describing are immune symptoms, signs that your immune system is over-reacting. Try stopping the inosine for a week (see how you feel) and then when ready, restart at a lower dose. Most start with just 1 pill a day, not 2, and some need to start lower at just a half-pill a day (the ones I link to in the post are caplets, not capsules, so they can be cut in half).

      Also, with inosine or any kind of immune modulator, you MUST constantly change the dose - as I describe in this post. So, right from the start, you should only be taking it on weekdays - always Sat & Sun off - and once you are on it regularly, you need to take a complete break for 2-3 weeks every 3 months or so.

      So, start VERY low dose - just 1 or a half pill in the morning, 5 days a week. Once you feel OK on that, keep that low dose but on alternate weeks, go up a bit (if you started at a half, then your other weeks will be just 1 per day; if you started at 1 per day, then alternate weeks with 1 and 2 pills per day). In that way, you very slowly and gradually work up to whatever dose works for you - remembering you must always take weekends off and always switch dose each week. We have worked up to alternating weeks with 2 pills and weeks with 5 pills, but it took us years to get up to that point. Go slow and listen to your body (even more than you listen to the doctor!). No one knows your own body like you do. The post above goes through the dosing - and the need for constant changes - in detail. Let me know how it goes!

      P.S. Since your goal is to help your immune system ward off all the infectious agents you are exposed to, inosine is good, but we also found glutathione injections or nasal spray to have a HUGE impact in that regard. My son and I used to both get bronchitis 4-5 times a year (with a bad crash each time). Inosine helped in many ways but after we added glutathione, it was a huge shift - now we each only get bronchitis about every 18 months to 2 years! Here's more info:

      http://livewithcfs.blogspot.com/2017/03/increasing-glutathione-in-mecfs-related.html

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    2. Hi Sue,
      Thank you so much for taking the time to respond. I will definitely follow your advice on the Inosine dosing. I currently take glutathione in pill form but will look into the nasal spray or injections as I know it is not easily absorbed in the gut. I know where I can get it in IV form but I've never heard of injections and nasal spray. I will let you know how it goes.
      Thanks again,
      Lauren Sherry

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    3. Oh, IV's are great! Go for that, if it's available to you - my son has been getting weekly glutathione IV's (in addition to the daily nasal spray), and they've had a great effect so far.

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  14. Hi Sue, you mentioned that my symptoms seem like an overreaction from my immune system. Is this the same thing as a herx reaction? If it's my immune system, is it the viral side or the bacterial side or both? Can you you please explain to me what is happening with my immune system or virus that is causing my symptoms from the Inosine? Or is there a place you can direct me where I can read about it? I know this is a complicated question but you seem very good at explaining things in an easy to understand way.
    Thanks in advance, Lauren Sherry

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    1. I was going to say this isn't a Herx reaction, BUT inosine does have some antiviral properties, so if you have some reactivated, chronic viruses behind the scenes (things like EBv and HHV-6), then I guess this could possibly be a Herx reaction. Either way, the advice is the same - take a break & then start back up at a lower dose.

      In ME/CFS, our immune systems over-react to viruses and allergies (hence the symptoms you get when exposed to all those viruses at school!), but we under-react to bacteria - which is why my son and I never caught colds but got bronchitis so often! This explains in more detail:

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

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  15. Hi Sue,
    I followed your advice and restated Inosine at a much lower dose (just one tab). my flare-up symptoms were better but I could not sleep until 3-4am so I stopped again and restarted at 1/2 tab. Again, I couldn't fall asleep until 4am. Do you think I am just too sensitive to Inosine and should stop taking it all together?
    Thank you in advence,
    Lauren

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    1. What time of day are you taking it, Lauren? We do find it a bit stimulating so be sure to take it early in the day - split between breakfast & lunch (though you could take the full dose at breakfast.

      So, if you haven't already, try taking it as soon as you wake up.

      If you are already taking it first thing when you wake up, my 2nd question would be how much time you've given it? I know how horrible it is not to be able to sleep, but your body would probably adjust quickly, within a week, if you can stand it.

      Sue

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  16. Thanks Sue, I was taking it around 3pm. but will start taking it as soon as I get up. Hopefully, this does the trick. I have already taken it for 2 weeks but that was at a higher dose, so it's hard to say if I've given my body enough time to adjust. I'll let you know how tonight goes.

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    1. Oh! Well, that makes sense then - for most people, 3 pm would be much too late in the day. Definitely try it as soon as you wake up - I think that will make a big difference for you.

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  17. Sue, I'm wondering if you have done 23andme to check your genes. I ask because I started on inosine a few weeks ago and it initial made me feel better but then it actually made my ME much worse. One of my most troubling symptoms is what I call "heart tiredness."
    Anyway, I was on PR and someone mentioned that higher uric acid levels can raise a person's IL6. When I researched I found out that my genes mean I have higher levels of IL6 so I think that's why it's adversely affecting me. I am wondering if you are on the opposite spectrum and that's why it helps you and many other ME patients. My 23andme shows I have rs1800795 GG. Here's more on that:https://www.snpedia.com/index.php/Rs1800795
    NIH says IL6 can have an initial protective heart effect and later cause too much inflammation. It sounds like it is working for you though, so I thought I'd mention this. rs1800795 CC people make less IL6.

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    1. Hi, Judee -

      Sorry, I got way behind on my messages!

      Yes, we did do 23andme many years ago and have found the information very helpful. But I'd never heard this particular information before, specific to the action of inosine. It's very interesting and definitely a missing piece of the puzzle. Thanks so much for sharing this!

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    2. Hmmm...I just looked up both of our rs1800795, and they are both CG! Interesting...

      Thanks again!

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