• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Homemade Isoprinosine/Immunovir

cfs since 1998

Senior Member
Messages
603
See my blog:

In Immunovir versus Inosine Revisited, Part 1, I give an overview of Immunovir/Isoprinosine and discuss my personal experience with using inosine instead. I did not feel much improvement on inosine but did have some significant side effects.

In Immunovir versus Inosine Revisited, Part 2, I examine the true difference between the two, discover how Immunovir is made, and discuss a way to make a homemade version for 1/24th the cost by mixing two over-the-counter supplements (inosine and DMAE). The homemade version is slightly different but is way closer to the real thing than inosine by itself.
 

Marylib

Senior Member
Messages
1,155
Just read your blog. I am sure I am not alone in saying that we so appreciate your efforts in this. Amazing. Should have taken chemistry more seriously myself!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
hi cfs 98

what dose of dmae is used with inosine? Just read that 2.7mg per 1000mg of inosine. Thats a big dose of dmae, most supps of dmae come in 100mg tabs, thats 27 tabs per dose of inosine.

Its all interesting, if any other info keep us informed.

cheers!!
 

cfs since 1998

Senior Member
Messages
603
what dose of dmae is used with inosine? Just read that 2.7mg per 1000mg of inosine. Thats a big dose of dmae, most supps of dmae come in 100mg tabs, thats 27 tabs per dose of inosine.

Yes it is quite a large dose, but I guess I'll just be a guinea pig. :eek:

However you have to be careful of the supplement labeling. It says DMAE on the front but it is actually DMAE bitartrate. Some companies will tell you the total mass of the DMAE bitartrate in the capsule, others will tell you only the amount of DMAE of the total DMAE bitartrate

For example, Twinlab brand sells DMAE in 100mg capsules. On the label it says "DMAE (from DMAE bitartrate) 100mg". So I think they mean capsule of this particular product has 270mg of DMAE bitartrate yielding 100mg DMAE.

This is one reason why it would be better to buy as a bulk powder, and the labeling is much clearer on the products I linked to in my blog.

If you take 3000mg per day of the homemade version, that is roughly 1.6 500mg tablets of inosine per day and 8 capsules of the Twinlab DMAE per day.
 

Marylib

Senior Member
Messages
1,155
Isoprinosine users need to test for gout

Just keep in mind -- isoprinosine can predispose some people to gout. I think it is uric acid that needs to be checked. Ask your doc.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Nice work CFSsince98.
On the subject of how much DMAE we would be getting a day:

For a dosage of 3000mg=3g of isoprinosine a day we would need

0.27 * 3000mg of inosine and 0.73*3000mg of DMAE bitartrate
= 810mg of inosine and 2190mg of DMAE bitartrate = 810mg of DMAE.

800mg a day is a high dose of DMAE, but not unreasonably high, e.g. the Now 250mg DMAE caps have a rec. dosage of up to 3 caps (=750mg) a day. At that dosage some people may experience side effects though (mania, insomnia etc.).

Ideally one would mix up each days dosages in water in the morning, then sip 1/3 three times a day. Could this be possible or would it deteriorate?

Also am I right in thinking that (according to the patent) a chemical reaction occurs? If so do the constituents need to be "in contact" for any length of time?
 

cfs since 1998

Senior Member
Messages
603
800mg a day is a high dose of DMAE, but not unreasonably high, e.g. the Now 250mg DMAE caps have a rec. dosage of up to 3 caps (=750mg) a day. At that dosage some people may experience side effects though (mania, insomnia etc.).
That is interesting about the Now brand labeling. If desired, the amount of DMAE could be decreased slightly so that you're only getting 750mg per day. The ratio does not have to be exactly 3:1 but this is what is used in the real thing. Anyway, it will be interesting to see not only if this homemade substitute can work as well as Immunovir but also if the side effects are similar. I am worried about the possibility of insomnia as a side effect because many ordinary things like Vitamin C and B vitamins give me insomina, even in tiny doses.

garcia said:
Ideally one would mix up each days dosages in water in the morning, then sip 1/3 three times a day. Could this be possible or would it deteriorate?
Yes, this would help improve the accuracy of the dosage and it would be more convenient. I do not think it would deteriorate but really don't know for sure.

garcia said:
Also am I right in thinking that (according to the patent) a chemical reaction occurs? If so do the constituents need to be "in contact" for any length of time?
I am not sure it creates a chemical reaction. The Wikipedia article for Inosine Pranobex shows the diagram and IUPAC name as 3 separate molecules. However the patent did say something about the resulting substance having a unique spectroscopy rather than just an additive effect so maybe there is a minor chemical reaction. I do not think the constituents need to be in contact for a certain time because the patent actually says you can give the components separately as long as they have a chance to "get together in the body".
 

Marylib

Senior Member
Messages
1,155
for wild daisy

Thank you, CFS Since 1998. It looks like I may not be able to obtain isoprinosine, so I may have to resort to the mixture you have devised. It is unfortunate, since I don't really trust my cognitive abilities to make the mixture. I am grateful, though, to you for this info.

I think people with money, great insurance and a good doc can get isoprinosine in the USA. Do you have any or all of the above:rolleyes:
 

minimus

Senior Member
Messages
140
Location
New York, NY
I think people with money, great insurance and a good doc can get isoprinosine in the USA. Do you have any or all of the above:rolleyes:

Isoprinosine is not FDA approved and it therefore would be excluded from the drug formularies of all US insurance companies. I have very good insurance and Dr. Cheney used to prescribe isoprinosine to me. I still had to pay for it out of my own pocket by ordering from Rivex Pharmaceuticals in Canada, as did all of his other patients.

Cheney now uses inosine in his protocol rather than isoprinosine. He settled on using inosine because it is quite cheap and his patients are supposed to take 500mg sublingually twice a day as a pretreatment for his cell signalling factor protocol because inosine evokes a positive heart function response measured using echocardiography. Unfortunately, a lot of his patients have found that inosine taken sublingually causes severe headaches. This came as a surprise, because isoprinosine taken orally had no such side effects. That is a definite indication that inosine is not identical to isoprinosine.

So CFS_since_1998, please keep us posted on your findings, as the addition of DMAE to inosine may prevent these headaches and be generally more beneficial than inosine alone.

I will even bring some DMAE powder to my next appointment in January for Cheney to mix with the inosine to see if the echocardiography response is the same, better, or worse. I will then post the results here.
 

Marylib

Senior Member
Messages
1,155
Good let's help each other

Wonderful to feel that we can help each other in any way we can, eh?:)
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
hi guys

I had initially good results from inosine then took break from it. Couldnt repeat the results but did have improvement in aches and pains, especially that grating feeling in the joints like u have sand in them. I think maybe results from inosine is because of the raising of uric acid levels having an antioxidant effect.

Depending on the next month or 2 in reguards to other treatments, im going to order real immunovir/isoprinoine from a cheap source i have found and posted on other threads. cheers
 

cfs since 1998

Senior Member
Messages
603
I received the "ingredients" on Friday. The inosine is a white powdery substance and DMAE is crystalline and clumpy, due to its tendency to absorb moisture as noted by the inosine derivatives patent.

I don't plan on starting it full time until after Thanksgiving but wanted to make a few doses to test the side effects. To make roughly 3000mg I mixed a quarter teaspoon of inosine, plus an extra pinch, and 1 and 3/8 teaspoons DMAE into water. I intially used 3/4 cup of water but it did not dissolve completely so used a cup and a half instead. This would give roughly 1000mg in a half cup.

So on Friday I took one dose (a half cup), and planned to take the other two doses on Saturday. The DMAE part is very acidic tasting, even though it is supposed to have a neutral pH. If I had put some sugar into the mix it would probably be like drinking lemonade, but anyway.

About a half hour after taking it I unfortunately got some nausea/acid reflux/indigestion which lasted pretty much the rest of the day. On Saturday I tried diluting it more but it happened again. I do not know if these side effects are special to the homemade version or if I would have this reaction to the real thing (I ordered some so I can compare). Newport Pharmaceuticals lists side effects of Isoprinosine/Imunovir as:

Other adverse events recorded infrequently in post marketing surveillance include:

* Nausea and epigastric discomfort
* Altered Liver function tests
* Itching and rash
* Headaches, vertigo and vague malaise
* Arthralgia

I also got a slight headache and some very slight spasms in my TMJ joint. These are the symptoms I had when I started olive leaf extract (only 10 times worse) so I think these symptoms were part of a die-off/immune reaction and not a side effect. So I think it is having an immune effect but I'm going to have to figure out how to take it and not get GI symptoms.
 
S

starcycle

Guest
Hi folks - I just developed CFS/ME last week. I've had adrenal/neurohormonal fatigue for about 7-8 years, tried everything under the sun for it, then last week my immune system got activated somehow, fever, chills, swollen glands, etc., and I now appear to have actual full-blown CFS. Can barely walk to the mailbox anymore, ugh.

I have some inosine here and am interested in trying a homemade Immonvir, but I took a small amount of DMAE a few years ago to test its nootropic properties and it really messed me up cognitively. Whatever it did lasted long-term, too, so I definitely would be afraid to try that again.

What else might be able to be substituted? I thought of trying alpha ketoglutaric acid, but that gives me massive "volcano chest" esophageal reflux and gastritis. The key point is that it needs to be some kind of acid, or is the type important too? I'm not a chemist, but I have familiarity with a lot of different supplements. Maybe we can come up with something to save some money over immunovir, b/c the inosine itself is so cheap.
 

cfs since 1998

Senior Member
Messages
603
What else might be able to be substituted? I thought of trying alpha ketoglutaric acid, but that gives me massive "volcano chest" esophageal reflux and gastritis. The key point is that it needs to be some kind of acid, or is the type important too? I'm not a chemist, but I have familiarity with a lot of different supplements. Maybe we can come up with something to save some money over immunovir, b/c the inosine itself is so cheap.

The acid is to neutralize the amino alcohol which is a caustic base by itself. When you buy DMAE over the counter it already has acid in it.

Dr. Cheney says inosine alone shows an improvement on his special echo cardiac device, but I don't think it has an effect on the immune system.

I decided to order Isoprinosine from goldpharma.com because the price was too good to pass up. I am finding there are less side effects than with inosine+DMAE. The DMAE made it hard to sleep.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
inosine/CFS Since 1998

Hi CFS Since 1998,

I too finally got a chance to read your blog - incredible work you are doing! Thank you so much for you efforts and thanks for sharing.

I have been lucky enough to get some benefit from the inosine with a slight energy increase and some cognitive dysfunction decrease - but have had some side effects.

I have a question, tho. Altho I like the fact that inosine is inexpensive and I have gotten some good results from it, what I am after is the long term immune modulating effects. I don't know a way to know if I am changing my immune system with it without doing immune system blood work (read expensive). The immune system could be slowing changing and that would not necessarily translate into an immediate noticeable improvement in symptoms?

Do any of you who are taking immunovir or inosine have immune system blood work to know if it is changing NK cells or other parts of the system?

Thanks for any input!

Maxine
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
CFS Since 1998/which one?

The acid is to neutralize the amino alcohol which is a caustic base by itself. When you buy DMAE over the counter it already has acid in it.

Dr. Cheney says inosine alone shows an improvement on his special echo cardiac device, but I don't think it has an effect on the immune system.

I decided to order Isoprinosine from goldpharma.com because the price was too good to pass up. I am finding there are less side effects than with inosine+DMAE. The DMAE made it hard to sleep.

Hi CFS...

I went to the goldpharma.com site, how did you determine which one to order?

Thanks,

Maxine
 

cfs since 1998

Senior Member
Messages
603
I have been lucky enough to get some benefit from the inosine with a slight energy increase and some cognitive dysfunction decrease - but have had some side effects.
The immune system could be slowing changing and that would not necessarily translate into an immediate noticeable improvement in symptoms?

How much did you take and what side effects did you have?

The symptom relief from inosine might be due to the increase in uric acid, a "side effect" of inosine. So you shouldn't take it if you have gout. Dr. Cheney said his patients have very low uric acid though. In fact uric acid is also low in MS and there is a trial of inosine for MS currently ongoing, I believe.

When I took 6 tablets (3 grams) total per day of plain inosine (divided) I got really bad pain in my joints. Now I've realized that Isoprinosine (immunovir) is only 25% inosine and they should not be substituted on a 1 to 1 ratio.

The immune system effect could take many months to be noticeable symptomatically, and you may actually feel worse at first due to reactivation of the immune system. The patent for Isoprinosine claims inosine by itself does not have any useful immunological effect.

Hi CFS...

I went to the goldpharma.com site, how did you determine which one to order?

Thanks,

Maxine

When I type "isoprinosine" in the search box only one choice comes up.

http://goldpharma.com/search/isoprinosine/lang/ENGLISH/

By the way, I had a problem when I was trying to enter my address. It wouldn't let me continue. I had to select a different country and then select US again. Then a box came up to select my state, after which I was able to proceed with my order.
 

Hysterical Woman

Senior Member
Messages
857
Location
East Coast
CFS Since 1998

How much did you take and what side effects did you have?

The symptom relief from inosine might be due to the increase in uric acid, a "side effect" of inosine. So you shouldn't take it if you have gout. Dr. Cheney said his patients have very low uric acid though. In fact uric acid is also low in MS and there is a trial of inosine for MS currently ongoing, I believe.

When I took 6 tablets (3 grams) total per day of plain inosine (divided) I got really bad pain in my joints. Now I've realized that Isoprinosine (immunovir) is only 25% inosine and they should not be substituted on a 1 to 1 ratio.

The immune system effect could take many months to be noticeable symptomatically, and you may actually feel worse at first due to reactivation of the immune system. The patent for Isoprinosine claims inosine by itself does not have any useful immunological effect.



When I type "isoprinosine" in the search box only one choice comes up.

http://goldpharma.com/search/isoprinosine/lang/ENGLISH/

By the way, I had a problem when I was trying to enter my address. It wouldn't let me continue. I had to select a different country and then select US again. Then a box came up to select my state, after which I was able to proceed with my order.

Thank you for responding!

I am currently taking 4 one week and 2 the next. When I initially started (with 3 one week then 2 the next) I had a lot of nausea and increased fatigue and fluey feeling. I kept on taking it, but had to skip a dose now and then because I just felt too fricking bad. That went on about a month. The nausea, fatigue and flu feeling went away so I ramped up to 4 one week then 2 the next. This time the side effects were increased pain - more in the muscles than in the joints, I think. This past week I took 4 and as long as I took Aleve when the muscle pain got bad it wasn't too awful. I am considering trying to ramp up to 5.

I don't have any gout symptoms and never have and yes, I believe inosine increases uric acid. I have never had my levels measured. There is some information floating around out there about MS and inosine. I printed some of that out for my neighbor who has MS. She has recently stopped taking copaxone. It believe it has some immune modulating properties. I don't know if she will try the inosine or not.

It's a very interesting comment you made about not substituting 1 to 1. Maybe I will stick to the 4/2 regimen for now.

Not knowing what is going on with the immune system is really frustrating. The tests are just not cheap. I am going to do more research on trying to get insurance to pay for them. I am aware that the immune changes could take a very long time. It is interesting that the patent for isoprinosine claims that inosine by itself does not have immunological effects. I don't mean to be tacky, but they wouldn't want inosine to have those effects would they? Sorry, I just don't trust some of the statements from drug companies.

Thanks for the info on goldpharma. I was typing in immunovir and got a whole list of aciclovir - at least I think that was the way it was spelled. Maybe I did it wrong.

In any case, the price does look incredible. I am going to pass on the website to my friend who sees doctor Cheney. She substituted her immunovir with inosine for a while but believes that she feels better when on the immunovir.

Again, thank you for your incredible methodical look at these possibilities.

Maxine