Trying valcyte again, so far so good

[vli]

heaps I'm very tired but i'll just say:

Vli in the other thread u mentioned not making antibodies, im not sure some of the immune modulators that improve nk and t cells would help with this as its the b-cells that make the antibodies, but that is just a guess.

True

I assume if nk/tcell function is good then that might be enough to keep many of these viruses latent, maybe??

yeah this is *possible*, too...

 

[heapsreal]

It seems to be taking along time for my immunovir order to come through. My sinuses have been troubling me abit and i think i need something to help my immune system so i have just started a product called Ki immune defence and energy formula . It contains 5000mg astragalus, 3000mg lentinula which is shiitake mushroom and olive leaf 2000mg all in 1 tablet and im taking it twice a day.
As far as the valcyte goes everything seems pretty good on 900mg dosage, have had no viral reactivations of late. Im managing work ok and have decided to not even try exercising at all until i have finished valcyte, when im not at work im just trying to rest aggressively for now, although every so often some things need to be done at home. I feel like my condition is stable so long as i stay within my energy envelope and rest aggressively in front of the tv or computer.

 

[terilynn]

I was on 1350 of valcyte and think that is why I had to stop side effects at about 8 month mark got unbearable, felt poisoned. I dont know why just lowering my dose wasnt presented to me as a option.

Heaps, did you ever contact Roche to see if they offer any assistance to people in Oz for valcyte?

I had to stop valcyte also due to unpleasant side effects.I wish I could of hung in there longer than I did,(8 months)but it was unbearable.I had severe back pain constantly,jaw pain so bad I could barely open my mouth to eat,and other symptoms.Since I've been off valcyte I felt all those side effects dissappear.I'm still ill with CFS to the point that I can barely function day to day.

 

[SOC]

I wish they could figure out why some people, like my daughter, can take Valcyte for 2 years with not a single side effect while others have all kinds of side effects from feeling poisoned to back and jaw pain. I can understand that some of it could be differences in liver function -- Valcyte places high demands on the liver -- but many of the side effects we're hearing about seem completely unrelated to the liver.

I had the typical rough patch with Valcyte -- the one that looks like an IRIS reaction. It was like having a really bad relapse plus shingles. I was prepared for it and just lived through it. Some people's side effects are not like that at all, though. They sound definitely toxic and not the type of thing one should "tough through". Wouldn't it be nice if they could figure out those side effects and maybe treat them so people could actually see if the med works for them?

 

[terilynn]

I wish they could figure out why some people, like my daughter, can take Valcyte for 2 years with not a single side effect while others have all kinds of side effects from feeling poisoned to back and jaw pain. I can understand that some of it could be differences in liver function -- Valcyte places high demands on the liver -- but many of the side effects we're hearing about seem completely unrelated to the liver.

I had the typical rough patch with Valcyte -- the one that looks like an IRIS reaction. It was like having a really bad relapse plus shingles. I was prepared for it and just lived through it. Some people's side effects are not like that at all, though. They sound definitely toxic and not the type of thing one should "tough through". Wouldn't it be nice if they could figure out those side effects and maybe treat them so people could actually see if the med works for them?

Yes,that would be nice if they could treat the side effects,then I might have been able to stay with the Valcyte.Maybe some day.

 

[heapsreal]

Just realised i have been on valcyte now for 6 months. Do i feel better then i did before i started, yes. Do i still have some problems, yes sinuses and insomnia which if they play up bring me down to my knees, aarrgghh. Of late i feel i am on top of sleep issues for the moment with the help of phosphatidylserine. Sinuses as long as i stay on antibiotics im fine but dont want to be on them forever either. I think sinus issues are from my crappy nk function so im still waiting for my immunovir to arrive which i hope will help this, also when i finish valcyte and viral load is down then maybe my immune system will be able to sort it out better?? I have tried to exercise some but it hasnt lasted longer then a few weeks then i have a mini crash, so its on the back burner until i finish valcyte.

Montoya's initial studies lasted 6 months with valcyte and the recent info on valcyte treatment length seem to suggest longer. I have 4 more months on valcyte, so i hope there is some more improvement. I would say i was a 6 before valcyte going by dr lerners scale and as long as sleep and sinuses are ok im probably a 7 and an 8 if i dropped 1 work day a week and or well rested. I still can easily over do it so its still important to pace myself. pushing myself could easily wreck my sleep and drop me to tv bound, so i have learnt a few times. Maybe another 4 months can help me to stabilise myself??

Also posting this because its been abit quiet of late on PR and thought i would post something for everyone to have a read.

cheers!!!

 

[niall]

Just realised i have been on valcyte now for 6 months. Do i feel better then i did before i started, yes. Do i still have some problems, yes sinuses and insomnia which if they play up bring me down to my knees, aarrgghh. Of late i feel i am on top of sleep issues for the moment with the help of phosphatidylserine. Sinuses as long as i stay on antibiotics im fine but dont want to be on them forever either. I think sinus issues are from my crappy nk function so im still waiting for my immunovir to arrive which i hope will help this, also when i finish valcyte and viral load is down then maybe my immune system will be able to sort it out better?? I have tried to exercise some but it hasnt lasted longer then a few weeks then i have a mini crash, so its on the back burner until i finish valcyte.

Montoya's initial studies lasted 6 months with valcyte and the recent info on valcyte treatment length seem to suggest longer. I have 4 more months on valcyte, so i hope there is some more improvement. I would say i was a 6 before valcyte going by dr lerners scale and as long as sleep and sinuses are ok im probably a 7 and an 8 if i dropped 1 work day a week and or well rested. I still can easily over do it so its still important to pace myself. pushing myself could easily wreck my sleep and drop me to tv bound, so i have learnt a few times. Maybe another 4 months can help me to stabilise myself??

Also posting this because its been abit quiet of late on PR and thought i would post something for everyone to have a read.

cheers!!!

It is encouraging that you are beginning to show signs of improvement on Valcyte and that you are planning to continue beyond the six month mark. In the Montoya study, Dr. Rey said that the relapse rate was high when the drug was given only for six months. Maybe you could switch to Famvir or Acyclovir after the ten months on Valcyte so you could preserve the gains in immune function which you will have made. Keep that flag flying!

 

[heapsreal]

I am still taking famvir 250mg a day while on valcyte and will continue valcyte at 250mg twice a day when i finish the valcyte and hopefully keep the improvements i have made??

Thanks Niall

 

[heapsreal]

Quick update, still going well with valcyte and at the 6 month mark. Things that make me worse are poor sleep and sinusitis.

Sinusitis i use doxycycline for but when i lower or come off it plays up again, occassionally i increase the doxy to 200mg twice day which at that does actually kills bacteria not just stop replication, but i think its all from having a crap immune system.

Sleep has improved alot since adding phosphatidylserine at night which helps lower high night time cortisol, which i have tested for in the past. Im also down to just 1/2 zopiclone at night for sleep and some tryptophan. sleep quality is good and if i do wake up im able to go back to sleep quite easily.

I have just finally recieved my immunovir order, yeah!! My dosing strategy im going to use is something i saw that nancy klimas uses or has used, all dosing is mon-fri with weekends off. First week is 1 tab twice a day. Week 2-4 is 2 tabs twice a day, week 5-8 is 3 tabs twice a day. Then a month off.

So with the addition of immunovir im really hoping i can stop antibiotics and my immune system can keep those bugs down. Also helping my own immune system gets up to speed for the time when i stop valcyte. Im currently a 7 or an 8 which can drop like a stone if sleep and or sinusitis plays up. If i can get to 9 that would be good but even a stable 8 where i can handle exercise and work better etc. At the moment that 8 function isnt stable, still up and down too much. If i get a 10 then yippy!! but time will tell.

cheers!!

 

[heapsreal]

Took my first immunovir about 5 hrs ago when i woke up, not long after i got a headache that was different to what i would normally get and i just had a 30min sleep which is very unusual for me to do in the middle of the day. Dont know if it works that quickly but its very different to how i would normally feel and function??

 

[heapsreal]

Well, immunovir is doing a number on me. I feel like crap warmed up. sneezing, coughing, spaced out brain fog/headache thingy, pains in my legs, sweating, its bringing back alot of cfs symptoms all at once. I hope those bloody little nk cells are working and clear all those bugs out and i feel better for it later.

I think the way i dose things i will do it by ear, currently taking 1 tab morning and night, if increasing the dose increases symptoms more i will be very hesitant but i think with time and as my immune system clears more bugs out i should be able to tolerate higher doses.

When i used cycloferon which is in a similar class of drugs, i didnt get any die off type symtpoms like this, it actually improved things straight away, but i think for me it had anti-inflammatory effects??

Time to go back to my cave and lie down.

cheers!!

 

[heapsreal]

The first 2 days on immunovir were crap, but yesterday and today have been good with no worsening of symptoms like the first 2 days. Cant say im feeling super fantastic yet but post nasal drip from sinuses at this stage seems to have stopped, maybe a sign my immune system is working?? Im going to take wed and thurs off immunovir and friday i start days off again from work so will try to increase the dose of immunovir to 2 tabs morning and night. I wont be able to get any immune labs/lymphocyte sub set test till about february which is just before i finish valcyte. Hopefully theres good improvement with symptoms as well as corresponding labs, time will tell??

cheers!!

 

[maddietod]

Does imunovir usually give immediate results?

 

[heapsreal]

Does imunovir usually give immediate results?

I dont know madie, i got an immediate reaction, dont know if i would call it a die off or what but sinuses seem better which could be a sign of immune system working??

 

[maddietod]

Veeeerrrry exciting!!!

 

[heapsreal]

Did my first 5 days on immunovir and had 2 days off. Today i have increased the dose to 2 tabs morning and night, so far know strange immune type reactions and dont feel awful from it. The initial sinus improvement i got from immunovir after 2-3 days was short lived and they did clog up again so back on antibiotics for now. Realistically i think its going to take more time to get my immune system running full steam and sorting sinuses out as well as keep cmv down, but hopefully its up and running by the time i finish valcyte??

cheers!!

 

[maddietod]

I hope this works!

Have you ever explored dairy as a possible factor in the sinus infections? I never thought I had a problem with dairy, but when I went off-on-off-on a few times, I noticed that my vision gets fuzzy every time. So I don't eat dairy when I'll be driving at night. And it doesn't matter if it's cow, goat, cream, skim milk.......it all does exactly the same thing. I tested a LOT because I wanted it to not be a problem!

 

[HTree]

Hey @heaps, hey all!
Glad you got the imunovir Heaps. I decided to try Famvir first in the end (though sort of contrary to docs opinion...) So i'm just on 125 mg of Famvir so far, worked up even to that very slowly! I'm at about a 3 energy-level wise so, am taking things very very slowly. I've had this for over a decade, i figure a little slowly upping the dose is ok.

I was concerned imunovir would be tougher too, Heaps, sounds like it was for you when you started? compared to AVs I mean, seems like imunovir affected you right away?
I was actually told AVs would be tough for me since my NK cells were low....Seems like I will need both at some point...but will be on Famvir first for several months.

Anyway, just saying hello, and after waiting for a year for many reasons, I'm finally starting off on my first av! Famvir
Take care all,
Htree

 

[HTree]

P.S. SOC,
i think one of the reasons we respond differently is how other parts of our immune system are doing-- for example, how are NK cells are. If NK cells also low, than this imbalance makes it even more difficult when the herpes viruses are being destroyed. I believe for example, the increase in neurotoxins etc from herpes viruses/waste etc, and cytokines, are usually "gobbled up" by some parts of the immune system...And if this balance is broken, more of this "waste" is left in the body so we are very symptomatic.
In sum, i think a few people have more of this balance in immune response, so aren't as affected by the AV's work.

Hope this makes sense! tired brain answer (but based in biology )
Take care

 

[heapsreal]

Hey @heaps, hey all!
Glad you got the imunovir Heaps. I decided to try Famvir first in the end (though sort of contrary to docs opinion...) So i'm just on 125 mg of Famvir so far, worked up even to that very slowly! I'm at about a 3 energy-level wise so, am taking things very very slowly. I've had this for over a decade, i figure a little slowly upping the dose is ok.

I was concerned imunovir would be tougher too, Heaps, sounds like it was for you when you started? compared to AVs I mean, seems like imunovir affected you right away?
I was actually told AVs would be tough for me since my NK cells were low....Seems like I will need both at some point...but will be on Famvir first for several months.

Anyway, just saying hello, and after waiting for a year for many reasons, I'm finally starting off on my first av! Famvir
Take care all,
Htree

Its hard to really predict how one is going to react to any treatment, all i can say is you have a to start slow and low. Also meds that have the same affect can also have a different reaction, cycloferon that i have used that increased my nk function made me feel better almost straight away but others i know who tried it made them feel worse. Immunovir only seem to make me feel bad for a few days but im still only in the early stages and have more dosage increases to go??

I think with av's or antibiotics our immune system is so suppressed that when we reduce this infections load with these treatments it then allows the immune system to start working. Alot of infectious symptoms are actually the immune system working not neccessarily the actual infections. Its really hard to tell if one is going to have a bad reaction or how long it will last. It took me several go's before i could tolerate valcyte and i think treating other things helped me to tolerate it better, for me i fixed my dhea levels which were very low and abx for sinuses helped me to tolerate valcyte. I tell people to always revisit old treatments as sometimes our physiology can be different to before and these things can help us second time around. If i didnt retry things then i wouldnt have made the gains from valcyte.