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Those of you who tried Imunovir/Inosine - How fast did you see results or responses of any kind?

SunMoonsStars

Senior Member
Messages
159
Those of you who tried Imunovir/Inosine - How fast did you see results or responses of any kind?

Curious how fast people see affects of this drug / supplement and whether it be positive or negative.
Any reports would be appreciated
Thank you
 
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Hip

Senior Member
Messages
17,824
Here is a Google search of these forums for Imunovir / inosine, in case that helps.
 
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halcyon

Senior Member
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2,482
I took inosine for about 3 months. I'm not able to attribute any specific results to it due to taking it alongside other treatments, but the response to it was immediate. Upon taking it I developed a fever of 100.8F, myalgia, and a sore throat. For the first five days I would develop a fever shortly after taking it and the sore throat lasted for 11 days. My understanding is that this is a common reaction, at least in those with a chronic enterovirus infection.
 

heapsreal

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I was taking immunovir with famvir. I did get a slight increase in nk numbers, no nk function test. I used it for several months a few times. I couldn't really notice anything positive.

I dont think on its own its strong enough or worth it economically unless u can get it really cheap. I did stop the antiviral famvir while remaining on immunovir and had a nasty shingles outbreak. So for me it wasn't strong enough to stop viral reactivations.

Thats just my experience but think it really comes down to an individual trial to weigh it up as others have benefited from immunovir .
 

Seven7

Seven
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3,444
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USA
I relaize is doing something when I stopped for the pulsing after 6 months by week 3 that I stopped I got worst. The progress is slow and mostly is in the NK test, that you know if it is working or not, or if you feel worst when you stop for a while (for me week 3 or 4 after I stopp) it took 3 years for me to start incresing NK (I think it was LDN that finally did it).
 

Jenny TipsforME

Senior Member
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1,184
Location
Bristol
I've ordered inosine from Amazon and done a bit more reading (constant headache limiting my own research).

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.

I'm feeling a little daunted about whether it is a good idea to try it on my own though.
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. On PR people seem to get more viral symptoms sometimes inferring lasting down turns.

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).

I read about the swish and spit method. I think I'll try this week 1 5 days on 2 days off, then go up to half a tablet then a whole tablet by week 3.

Also, do you know if taking very sporadically will give any benefits?Or is the specific Cheney schedule important beyond just talking breaks? Please indicate if your answer is a guess or if you know.
BTW let me know if there's a better thread for these queries.
 

Jenny TipsforME

Senior Member
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Location
Bristol
I took inosine for about 3 months. I'm not able to attribute any specific results to it due to taking it alongside other treatments, but the response to it was immediate. Upon taking it I developed a fever of 100.8F, myalgia, and a sore throat. For the first five days I would develop a fever shortly after taking it and the sore throat lasted for 11 days. My understanding is that this is a common reaction, at least in those with a chronic enterovirus infection.
@halcyon is the inference that this is a good thing? Ie getting an appropriate th1 response? Or do you consider this an immediate side effect? Why did you stop taking it?
 

Chrisb

Senior Member
Messages
1,051
I tried it in around 1989/90 for about 6 months. At first I thought it might be having a slight beneficial effect but then concluded there was no effect.
 

halcyon

Senior Member
Messages
2,482
Do you do anything to prevent these side effects?
As you noted there is an increased risk of uric acid kidney stones. I already suffer from kidney stones, though likely not uric acid stones. To be safe, I switched to potassium bicarbonate (my doctor, Dr. Chia, said you can also use sodium bicarb) and monitored my urine pH with test strips.

Does pulsing the dose also help avoid side effects?
It might. Some doctors use it on a pulsing schedule and some, like my doctor, don't. It seems if you take it continually the side effects should diminish after a week or so.

@halcyon is the inference that this is a good thing? Ie getting an appropriate th1 response? Or do you consider this an immediate side effect? Why did you stop taking it?
Personally I would consider it the desired effect, unpleasant as it may be. I stopped taking at the advice of my doctor who felt I was probably getting enough immune stimulation from Equilibrant and didn't want to push things too far.
 

Jenny TipsforME

Senior Member
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1,184
Location
Bristol
Thanks @halcyon I have some test strips I can use so that will put my mind at rest and sodium bicarbonate better for me.

It is a little strange to choose to start something that may increase viral symptoms and that's a good thing! It will be worth it if it resets things a bit though.

BTW an oddity I get is a brainfog holiday just before catching a new virus. It tends to be the only time I'm clear headed. I've come across this somewhere on PR and people said it's a sign of TH2 dominance. I've read that inosine is a right to left shifter (th2 to th1). Just wanting to double check in case I've got this the wrong way round (acquired dyslexia is a symptom).
Also have any of you who have tried inosine had the prior experience of previrus brainfog holidays?
 

Jenny TipsforME

Senior Member
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Bristol
I'm just wondering if anyone has any knowledge about how this thread http://forums.phoenixrising.me/inde...inergic-receptors-in-patients-with-cfs.40109/ relates to inosine and similar things that have anti viral properties?

My limited understanding is that it seems a bad idea to increase immune response if there are auto antibodies involved. Perhaps the downregulation of th1 is an adaptive response? The auto antibodies and b cell research does seem to offer one explanation of why we get post viral reactions. Relapses and setbacks are complicated to predict for me but they do always involve a virus.
 

Jenny TipsforME

Senior Member
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1,184
Location
Bristol
Also, in terms of my response so far:

I was intending to measure before and after quantified self stylie (eg cognitive tests, symptom rating) but when the inosine arrived I had a cold virus so I scrapped that plan and started taking it. I did swish and spit 1st day, no bad reaction and then 1/2 tablet a day no obvious reaction but I had a virus anyway. I then took a whole week off. That week was ALOT BETTER than I've been in recent years (well this is relative of course! I went out to buy an electric wheelchair to put it in context...). However, I don't know if that was inosine related as I also managed to get several consecutive nights decent sleep (combining paracetamol, valerian and melatonin) which is just as unusual.

I took 1/2 tablet Monday and felt rough and emotionally low (could be PEM rather than inosine). Then in the night I developed fever and labyrinthitis symptoms which made me feel terrible. My first relapse in 2000 felt like that. The ear infection I had then has left me with an inner ear legion. I've had recurring dizziness problems since then but for a few years it's been one thing that improved (everything else got worse).

Does it mean my body thinks I haven't cleared the 2000 virus?

I'm now wondering whether inosine is going to take me through a gruelling history of viruses-I-have-known! I'm not sure I have the emotional strength at the moment to hear that tale...
 

halcyon

Senior Member
Messages
2,482
Does it mean my body thinks I haven't cleared the 2000 virus?
It's possible that you didn't depending on what kind of virus it was. Dr. Chia told me that I might expect to experience a recurrence of the symptoms of the initial enterovirus infection that triggered everything while on these treatments. That was more or less the case, though luckily I haven't experienced a recurrence of any of the vestibular neuritis symptoms so far.
 

Jenny TipsforME

Senior Member
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1,184
Location
Bristol
@halcyon
They are particularly unpleasant symptoms. I'm still getting a sense of disorientation in space, despite taking stemitil to calm the nausea. The question is now whether to continue the inosine and push on through or back off? The auto antibody paper is making me more inclined towards backing off. Obviously I don't know if I have that specific problem but I seem to fit the profile (infectious onset, POTS, post viral flares, IBS problems). The inosine approach seems like the opposite of taking rituximab, or am I missing something?
 

heapsreal

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Inosine is an attempt to increase nk cells which is apart of your innate immune system, so the initial infection fighters before the immune system can make antibodies.nk cells hopefully stop viruses and cancer cells early in their tracks.

rituximab depletes B cells which is apart of your adaptive immune system so things like antibodies etc

but its also more complicated than that too.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Inosine is an attempt to increase nk cells which is apart of your innate immune system, so the initial infection fighters before the immune system can make antibodies.nk cells hopefully stop viruses and cancer cells early in their tracks.

rituximab depletes B cells which is apart of your adaptive immune system so things like antibodies etc

but its also more complicated than that too.
Does that mean it's separate and unrelated to b cells and auto antibodies? Could it actually mean it helps so that intercepting the virus more effectively before the antibody stage means less b cell response?

Wish we didn't need to understand so many aspects of medicine to manage this effectively/ doctors would do this for me!
 

heapsreal

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Does that mean it's separate and unrelated to b cells and auto antibodies? Could it actually mean it helps so that intercepting the virus more effectively before the antibody stage means less b cell response?

Wish we didn't need to understand so many aspects of medicine to manage this effectively/ doctors would do this for me!


I dont think you're going to get a black and white answer. But u would think nk cells help keep a lid on infections while they wait for antibodies for back up. There is some theories where they think b cell depletion may help increase nk function??

yes its painful having to try and understand all this on your own . I have had 2 recent appointments with an immunologist trying to explain to him between an nk function test i have had in the past and the common nk cell number counts which he had just done. i think until they actually teach cfsme in university and have it as a specialty, we are mostly on our own. Thank god for the internet.
 

Mary

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Southern California
When I first tried inosine maybe a year and a half ago, I felt nothing, good or bad, so stopped it. This was after initially trying Equilibrant, and having no response good or bad to it.

Then I tried inosine again several months later, and had a little boost in energy, so I figured that was a good thing and have continued to take it since. I recently had an NK function test done and I think my number went up 2 points from 2 years ago - almost nothing. But the inosine is not hurting me and I keep remembering how it helped my energy so I continue to take it. I'm taking Swanson brand inosine which is the best price I've found.