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Inosine - week 4 and sick

SDSue

Southeast
Messages
1,066
Does anyone have experience with reactions to inosine or immunovir? I just finished week 4 of the following schedule, and this has been a bad week - nausea, vomiting, bad headache, base of skull pain, shortness of breath, insomnia (feels like my onset of ME).

week 1 M-F - 1/2 tab (250 mg)
week 2 M-F - 1/2 tab twice per day
week 3 M-F - 1/2 tab three times daily
week 4 M-F - 1 tab twice daily (my max dose until next doctor visit)

This feels different from a crash. Could it all be the inosine? I plan to take at least a week off to see if I feel better, but it makes me nervous that I've stirred up some bad stuff.

Thanks.
 

SOC

Senior Member
Messages
7,849
Sorry to hear you're feeling rotten. :(:hug: My daughter had no problems with inosine, so I can't help there. Lucky kid has had no problems with any meds, though, so that doesn't mean much.

Stirring up some bad stuff might not be all bad. If your immune system is finally going after something(s) it was too weak to handle before, that would be good. OTOH, if you're having an allergic rxn to inosine, that would be bad. Can you email or call Dr V and see what she has to say?
 
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minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I take Isoprinosine. When I first started I tried to do:

1 2x/day Monday
2 2x/day Tuesday
3 3x/day Wednesday-Friday weekends off.


I didn't get past Wednesday AM. Horrible pounding headache and nausea

I started over and I take

1 1x Monday
1 2x Tuesday
1 3x Wednesday - Friday weekends off

If it's too much back down.
 

Mij

Senior Member
Messages
2,353
@SDSue I took both. I did not have any reaction to Inosine- I took 500mg/x2 daily. I thought I did initially but I was going through the start of menopause and this explained my symptoms.

I have a terrible reaction to Imunovir within 2 weeks, it started with upper back soreness and went on to a complete relapse. I also experienced shortness of breath.

I think it's a good idea to stop and see how you feel. I no longer experiement with immune modulators because they stir things up and I get nervous.

Did a doctor recommend you take Inosine?
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
I had a very revved up feeling after taking inosine for a couple of weeks, tried again months later and revved up feeling returned after a few days. Last week started taking tiny doses of it with other herbal anti-virals last and so far no revved up feeling, knock on wood.

I get this hyper, caffeinated effect with a lot of things that actually work: equilibrant is another. I think my problems are autoimmune- supplement gets immune system fighting a virus, and my immune system on 'overdrive' starts going after other toxins, or my own body. In my experience, when this happens, it can be damaging to continue therapy- or at least I have to reduce dosage.

I never had the headaches or vomiting you describe with inosine, but the rest of the symptoms I have had. Most anti-viral supplements eventually cause some sort of abdominal pain, insomnia and nausea with me.

In addition to autoimmune effects of anti-viral agents, I wonder if the pain and nausea could be due to the success of the treatment. :woot: These anti-virals REALLY eradicate body aches with me, so I wonder if my immune system has finally containerized it to the gut/stomach! :nerd: And my body is waging a full attack on the virus in the gut alone- as if the virus has been backed into a corner there!

Nevertheless, when I have had violent reactions like you are having, I am forced to back off therapy for a while, and/or switch to something easier on my system.

To counter these reactions, I recently started do a psylium fiber colon detox a few times a week to try and mop up residues of supplements and other misc. toxins that could stick around and send my immune system on overdrive later. I am hoping this will eliminate the side-effects I keep having with the stuff that helps me so much at first. Will let you know if it works long term.

Good luck with inosine. Perhaps you could stop for a while and bring it back in small doses and see what happens? When I was doing well on it it really curbed many viral symptoms.
 
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minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@heapsreal has said he had no effect from inosine.

I've been alternating between 3 immune modulators. It is stirring stuff up but i do have some small improvements.

I was tired if doing nothing and letting this damn disease run things.
 
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Gingergrrl

Senior Member
Messages
16,171
@SDSue, I would contact your doctor as it is so hard to know if the Inosine is stirring up something helpful or you are having a dangerous reaction. I felt terrible bothering my doctor during my over-methylation reaction but he said I absolutely did the right thing. It led to completely stopping the supplements for two weeks, I will re-start at a MUCH lower dose, and I will be having my thyroid and some other tests checked as a result.

I wouldn't mess around with this and call your doctor (or whoever is on-call for them.) I know it is a holiday weekend but this is very important and you don't want it to affect your kidneys.

I have only taken very tiny micro doses of Inosine (it is the second ingredient in my Monolaurin supplements) but each pill has 7.5 mg (and I take four pills per day) so only about 30 mg per day so I have no basis of comparison.

Keep us posted!
 

SDSue

Southeast
Messages
1,066
@SDSue Did a doctor recommend you take Inosine?
Yes, as per the schedule above. Apparently that's a lower dose than they often use, as the instruction sheet went as high as 5 tablets per day (pulsed, not continuous)

Thanks so much for all the feedback. I'm really feeling quite unwell. I took the last dose yesterday around noon and am continuing getting more ill, particularly the headache and nausea. I had no idea the power of this stuff. But at least I know what's causing this.

@Mary, this is from the link you provided. Apparently, this is "common".
Common: More than 1 in 100 people who take
Inosine Pranobex
• abnormal laboratory test results
• general feeling of being unwell
• headaches
• itching
• joint pain
• nausea
• skin rash or rashes
• stomach discomfort
• tiredness
• vertigo
• vomiting

Anyone know how long it takes to clear my system?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
@SDSue I was fine the next day after I thought my head was going to explode. Nausea was gone too.

It's apparent that even that low a dose for you is too much. Just back down starting Monday, imo.
 

SDSue

Southeast
Messages
1,066
I just did a quick search of "inosine + brain" on PubMed. 927 hits! While I don't understand the science behind it, I am no longer surprised that headaches are a well-known side effect. Yikes!
 

Gingergrrl

Senior Member
Messages
16,171
@SDSue Florinef can also cause headaches so the effect might be cumulative on both. I can't remember if you are still on Florinef?
 

SDSue

Southeast
Messages
1,066
@SDSue Florinef can also cause headaches so the effect might be cumulative on both. I can't remember if you are still on Florinef?
I, too, wondered if it was the Florinef, but it all started gradually before I started Florinef, and has continued to worsen after I stopped Florinef. Good thought tho :) Thanks!
 

adreno

PR activist
Messages
4,841
You probably stirred up some inflammation. When this happens, taking antioxidants can usually help to calm down the system.
 

SDSue

Southeast
Messages
1,066
You probably stirred up some inflammation. When this happens, taking antioxidants can usually help to calm down the system.
Definitely inflamed, which started that familiar cascade. I stopped the inosine and upped my antiox's. Good advice - thanks!
I did now! ;)
It took about three days for the jitters to wear off.
You were right. I'm at day 4 and finally feeling better. Whew!

I went back to previous dosage today, as per doctor's advice. I will take it realllllly slowly when it's time to up the dose.
 

SDSue

Southeast
Messages
1,066
My update after another week on inosine. I'm noticing a definite pattern.

I dropped the dose back to 1/2 tab three times per day (750 mg total per day), M-F after my bad response to 1,000 mg total per day.

As each week progresses, I feel worse and worse. By Friday, I've got a low grade fever and general blah feeling with a raging headache. The only thing that keeps me going is knowing I get a break on the weekends.

I start to perk up by Saturday evening and have a relatively good day Sunday. Then, as I start inosine again on Monday, I start to go downhill again.

Anyone know if this is a typical response? Is this what happens when one's immune system tries to get going again?

I'm more than willing to put up with some really crappy days if I know it's helping in the long run, so I shall forge ahead, documenting my progress for those who might follow.

Onward and upward!
 

Adlyfrost

Senior Member
Messages
251
Location
NJ
Hi SDSue: idk what a typical response is or how this could be reacting with the other things you are taking. I do feel that this is very potent stuff though: and as my viral symptoms get better, I find my self skipping it all together because it is very strong. I take it only once in a while only because it can get rid of nausea and viral symptoms- but it is just another weapon in my arsenal.

But if I wasn't feeling better from it I would re-evaluate it. I have read trillions of posts about supplements others swear by, and who claim there is a normal amount of "herxing." Well I must say, and I am only speaking from experience and with no medical knowledge, but every time something made me "HERX" it was my body crying out to me: STOP TAKING THIS!!!!! And if I ignored it I would get SCREAMS from my body until I had no choice to stop because it turned into a very serious side-effect.

I also think you should listen to your feelings and gut response. However, as for your question, I have never heard of inosine making someone that sick as a typical response. When it works for me it takes away my nausea and makes me feel myself. That's all. If I take it too much, too often or too long, the side-effects above set in. How much I take it depends entirely on my body's reaction.

Good luck and I hope you start feeling better soon! :hug: :balloons:
 
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