Inosine Reaction

Hmm, I've been taking Inosine 500mg/x2 day for the past 2 weeks and I think I may be having a strong reaction to this. I had a terrible relapse from Imunovir 12 yrs ago so I was reluctant to take this but they were neurological symptoms and since I had no reaction to Equilbriant I thought I would give it a try and see. I'm not taking both as suggested by Dr.Chia!

Sore neck and glands and feeling incredibly HOT. I just can't cool down at all even with the A/C going full blast. If it continues I will stop because I don't think this is a good sign. Did anyone has this reaction?

I have had enlarged, sore and painful glands in my neck from immunovir.(not inosine) They went down a couple of weeks after stopping the drug.

As a general rule if you notice anything unpleasant from a drug it is best to stop. I have had very different reactions to all drugs/diet over time. I think our immune systems just make our reactions very dynamic. If you cant take it now you may be able to tolerate it later on.

sounds like its getting your immune system to work, if getting too many symptoms from it just take a break for a day or 2 and/or use a lower dose for awhile

This thread is very timely. I started Inosine 3 days ago, doctor gave this Rx: add Inosine 500 mg tablets - start at 2 tabs 2X/day and then increase after one week to 3 tab 2X/day Mon-Fri, and 2 tabs on Sat and Sun. etc. etc.

Knowing how I react to almost everything (not well!) I thought I'd start lower at 1 tab. 2X/day. I did this for 2 days. I too am having a very strong reaction except different than Mij. I feel horrible - .more pain, very fatigued and really weak, heart jumpy. At first I checked online to see if Inosine had these effect and did not find adverse reactions. Then thought to look at PR. I did not realize Inosine was somehow in same category as Immunovir - it's amazing what I have learned by reading, reading, reading forums and threads on PR. Thanks everyone. I had no idea it was antiviral. I am also taking valacyclovir which I seem to tolerate just fine.

@currer and @heapsreal - I am stopping altogether and will start again at 1/2 cap. when this clears up. Thanks .

alice

I am in imunovir and they started me VERY slow, half a pill for 3 days if no symptoms then 1 pill a day for 3 days then 2 pills a day for 1 week... So maybe you can lower and if you get bad side effect you are suppose to go back to the lower doses until tolerated. Also, I have to stop on weekends. I know another patient who chose Inosine instead of imunovir. Will find their instructions and post again.

Inester7: Thank you. I would really appreciate if you would post again re other patient. Do you know how Imunovir is different from Inosine?
Here I thought Inosine had to do with 'body building' (not to say I couldn't use some help in that direction too with all my inactivity, lol). My doctor did warn me that Inosine increases histamine in stomach and if my stomach starts hurting from too much gastric acid production, I should just chew the tablets , swish and spit. I think I remember reading somewhere that Dr. Cheney uses this method of swish and spit with Inosine (maybe it was Imunovir).

How does Inosine compare to Inositol?

GG

It appears the reaction I was having was due to the Inosine. I didn't take any yesterday or today and now I back to base, no sore neck, glands or feeling hot. interesting. I'm feeling pretty ok today. I will pulse the doses.

Alice, the dosage your doctor recommended is high, no? I think you're wise to start lower/slower.

The virologist who put me on Imunovir years ago put me on too high of a dose and that may be why I relapsed badly and never went back to baseline.

Hi Mij,
I'm still not feeling well today, a lot of pain, headache, fatigue, eyes hurt. I will definitely wait a few more days and then start again at 1/2 capsule a day.
Please let me know how you fare. I was glad to hear that you are feeling "pretty ok" today. If you are like me, it difficult to say exactly how one feels, since symptoms seem to change by the minute sometimes. .

Hello GG, sorry I am not familiar with inositol. Just looked it up in Google, here's a short description. -

http://www.nutritionalsupplementshq.com/inositol-benefits/
"What Exactly is Inositol Anyway?



In short, inositol is a member of the vitamin B complex and is often referred to as vitamin B8 (although it’s not really a vitamin at all). Inositol is actually a naturally occurring glucose isomer — if you want to get technical!
Inositol benefits your body in a number of ways by transporting fat throughout your body and it also aids the neurons in your central nervous system to make sure everything is running smoothly. Inositol also functions very closely with another popular nutrient, choline, and both have huge health benefits."




I don't think Inosine is considered a nutrient. Maybe someone who understands these things better will chime in..

My personal hypothesis for ME/CFS is that it is a mast cell activation disorder. If this is also your case, then inosine is known to be a mast cell activator.

I restarted the Inosine 1 cap/day 3 days ago and now I have severe vertigo! yikes, this is how my illness started initially. I'm wondering what would happen if I took Equilibriant with it?

@nanoung Interesting, I read the list of symptoms regarding mast cell activation disorder, I only have a few of them. Where does one test for this? wow and it's treatable?

@heapsreal It appears as though it does reactivate the immune system and from experience I don't think it's a good thing for some of us. I'm beginning to think it's better to just leave it alone until we know exactly what each of are dealing with.

@alice be careful with this stuff.

There aren't many Mastocytosis/MCAS specialists around. What part of the world are you in?

Mastocytosis/MCAS is somewhat treatable. I am myself using NeuroProtek with some success. The ME/CFS is a mast cell disorder (hypothesis) thread has some info on this.

I am in Canada.

Have you been tested for mastocytosis? I take various anti-oxidants as I feel at least I can help prevent any further damage.

Not yet. Plan on doing so once my kid is back at school and I have more free time.

You may want to look at Mastocytosis Society Canada website, then.

Well the more I read about it the more it sounds like ME. hello?

"Mastocytosis, MCAS and IA, negatively impact working and personal lives. Many of these patients

have a restricted diet of very few foods they can safely eat, constant fatigue, episodes of vertigo and

anaphylaxis, as well as inability to exercise on a regular basis (includes walking) due to fatigue and

weakness and all the other symptoms. On a daily basis, many patients experience difficulty with tasks

requiring concentration, learning, retention or anything relying on memory or information processing

skills. Many people suffering with these rare disorders cannot commit to anything in terms of a

schedule or regular routine because their symptoms vary in type and severity from day to day and

often hour to hour. They are continuously symptomatic with disabling effects such as fatigue, sudden

unexplained episodes of drops in blood pressure (very common), anaphylaxis and anaphylactoid

reactions, flushing, shaking & tremors, and poor concentration.

Triggers can be anything which causes mast cells to degranulate. This includes

hormonal activity, emotions (positive or negative), physical activities, positive/negative stress, foods

and drinks, temperature, and exercise/exertion of any kind. It is only by controlling their exposure to

triggers in addition to taking medications, that they can achieve some relief from the symptoms, but it

is not total relief and this does not return them to functioning normally on a consistent and reliable

basis. Their good days are very few and far between, rarely even lasting a full day. Most of the

patients share this same experience."

@alice be careful with this stuff.[/quote]

Mij, How is your vertigo? Hopefully it's gone. Have you continued with the Inosine?

It's been almost 2 weeks that I took Inosine, 2 caps 2X/day for only 2 days and crashed. I am still not feeling well, still flu-like, frontal headaches, very fatigued, burning pain-especially in back and ribs. I will put this on back burner for awhile. I want to start GcMaf as soon as I feel good enough to try yet another new treatment.
alice

The vertigo started today, I keep my head level and I'm careful not to lie down too fast to prevent spinning. I'm stopping the insoine as of today.

When I took Imunovir the first symptom I experienced was upper back soreness and into the ribs. I couldn't lie on my back, I had to lie on my side. I Ignored the symptoms thinking it was transient. Then the neurological symptoms set in and I went downhill from there.

I agree with you to wait until you feel some level of improvement before starting a new treatment.

I took 1 or 2 inosine last night (I forget!) and in the middle of the night started feeling shortness of breath, which was my very first CFS symptom. I was actually dreaming that I was short of breath as well and dreamed that a nurse plunged a shot of adrenaline in my chest to get me going! The shortness of breath continues through today...will definitely not try it again until it goes away, and then I will probably do the swish and spit method. I do seem to have more strength today - I am also taking equilibrant.