Trying valcyte again, so far so good

[heapsreal]

Saw my quack today. he's happy with my plans of 2 week cycles when viral symptoms return, they eased up quick like 3 days, so this is telling me im picking up on the cmv reactivation when it happens. Since november i have done 2 x 2 week cycles, i seem to last about 4 weeks between needing avs. Im also totally off famvir for now. I think this has helped improve my neutrophils. Both valcyte and famvir can suppress bone marrow production which effect neutrophil numbers. SO since stopping the avs my neutrophils have risen from 1.2(moderate neutropenia) to 1.7(mild neutropenia), normal is 2-7.5.

Its this neutropenia that are most likely the cause of my sinus infections, if i can get these numbers working then i think i can sort this sinus crap out.

SO anyhow, my cycloferon order arrived today. It increases nk function and can help increase neutrophil numbers through stimulating bone marrow? So im 2 weeks post av's and hoping cycloferon improves on my 4 week post av record. Also took my last antibiotic tonight for sinuses, i usually crash with sinusitis within a couple of days once off abx. so i will see if this interferon inducer, cycloferon, helps keep virial infections down as well as bacterial sinusitis.

I would really like to not be reliant on avs and abx, fingers crossed. I will order more immunovir to use post cyclo course.

cheers!!
I hope some are getting some help from these posts.
cheerio

 

[maddietod]

I got sent to a hematologist by my new GP. Current and past-3-year tests show am WBC counts 3.5-4 (normal 4-11.5) with high lymphs and low neutrophils, low to low-normal platelets. In October my NK cell count was normal (up from a year ago) but activity was very high. Dr. Rey wants to put me on Famvir for HHV-6, but only if this doctor says I'm OK. IgG HHV-6 is the only infection Dr. Rey found.

He's testing for a million things, and immediately said he expects to do a bone marrow biopsy.

From what you say above, Famvir might help with the infection, but further lower neutrophils?

 

[Sparrowhawk]

@heapsreal great to hear things are moving well for you, and those strategies sound very interesting. I've not run into anyone pulsing antivirals like that but if it helps keep NK and neutrophils happy then what's not to like?

 

[SOC]

@heapsreal great to hear things are moving well for you, and those strategies sound very interesting. I've not run into anyone pulsing antivirals like that but if it helps keep NK and neutrophils happy then what's not to like?

One thing not to like is the chance of developing an antiviral resistant form of the infection by killing off the weakest but not staying on the med long enough to knock the infection back completely. Then, only the more resistant variants survive and you're left with an infection that doesn't respond to the medication. Apparently there's already a Valtrex-resistant form of EBV as a result of patients stopping the med too soon or otherwise not correctly taking the meds. It's not like there's a lot of other good medication options for CMV and HHV6 infections.

I think @heapsreal understands the risk and has his own personal reasons for taking that risk, but I wouldn't suggest other people try it unless, 1) they fully understand the risk, and 2) they have no other choice.

 

[Sparrowhawk]

@SOC you are of course right, I hadn't thought that far ahead in terms of possible downsides from that standpoint...

 

[heapsreal]

@heapsreal great to hear things are moving well for you, and those strategies sound very interesting. I've not run into anyone pulsing antivirals like that but if it helps keep NK and neutrophils happy then what's not to like?

My theory is that it initially takes longer to get viral load down so one needs to be longer on antivirals.
I now do short courses of 2 weeks which seems enough to lower the viruses, but i dont think being on antivirals any longer is going to help. What i need is a functioning immune system to keep these buggers down. I am doing this as antivirals can lower neutrophils which they have in me and can leave one open to bacterial infections(sinusitis). Im back on cycloferon to help increase my immune function which it has in the past.

My doc has said before that antivirals are commonly used in short courses, especially at the outbreak of a viral infection. Suppression therapy which is being on continually is for those who have outbreaks more regularly. I know this is referring to different herpes viruses but i think this is common between all these herpes viruses. He also said that antiviral resistance just doesnt occur like is does in antibiotics. This is why some people have used acyclovir off and on for say genital herpes without too many resistance issues. Im sure it happens but i think it may take alot longer. Acyclovir and valtrex have been around along time and only just starting to find some resistant issues, thats not too bad for a drug thats 30 yrs old??

I havent been able to find information on acyclovir/valtrex causing bone marrow suppression(wouldnt suprise me) but have found that its possible with famvir and more so with valcyte. Bone marrow suppression can lower things like neutrophils. For me this seems to be an issue but seems to resolve once antivirals are stopped. Dammed if u do, dammed if u dont. but this is why one needs to be monitored when on antivirals.

There is another antiviral out now or about to come out for cmv so probably works on hhv6, that doesnt cause bone marrow issues. I cant recall the name?

 

[Ema]

My theory is that it initially takes longer to get viral load down so one needs to be longer on antivirals.
I now do short courses of 2 weeks which seems enough to lower the viruses, but i dont think being on antivirals any longer is going to help. What i need is a functioning immune system to keep these buggers down. I am doing this as antivirals can lower neutrophils which they have in me and can leave one open to bacterial infections(sinusitis). Im back on cycloferon to help increase my immune function which it has in the past.

My doc has said before that antivirals are commonly used in short courses, especially at the outbreak of a viral infection. Suppression therapy which is being on continually is for those who have outbreaks more regularly. I know this is referring to different herpes viruses but i think this is common between all these herpes viruses. He also said that antiviral resistance just doesnt occur like is does in antibiotics. This is why some people have used acyclovir off and on for say genital herpes without too many resistance issues. Im sure it happens but i think it may take alot longer. Acyclovir and valtrex have been around along time and only just starting to find some resistant issues, thats not too bad for a drug thats 30 yrs old??

I havent been able to find information on acyclovir/valtrex causing bone marrow suppression(wouldnt suprise me) but have found that its possible with famvir and more so with valcyte. Bone marrow suppression can lower things like neutrophils. For me this seems to be an issue but seems to resolve once antivirals are stopped. Dammed if u do, dammed if u dont. but this is why one needs to be monitored when on antivirals.

There is another antiviral out now or about to come out for cmv so probably works on hhv6, that doesnt cause bone marrow issues. I cant recall the name?

Letermovir?

 

[heapsreal]

Letermovir?

could be it, i posted about it within the last week. I guess theres other treatments if one does get resistance to the current antivirals?

 

[heapsreal]

I got sent to a hematologist by my new GP. Current and past-3-year tests show am WBC counts 3.5-4 (normal 4-11.5) with high lymphs and low neutrophils, low to low-normal platelets. In October my NK cell count was normal (up from a year ago) but activity was very high. Dr. Rey wants to put me on Famvir for HHV-6, but only if this doctor says I'm OK. IgG HHV-6 is the only infection Dr. Rey found.

He's testing for a million things, and immediately said he expects to do a bone marrow biopsy.

From what you say above, Famvir might help with the infection, but further lower neutrophils?

Madie, my neutrophils was on the borderline before i started, maybe just a cfs thing?? WHen i started valcyte was when i first got this sinusitis infection that has stayed with me since, maybe a combination of the bacterial infection and the valcyte have contributed to the low neutrophils.

personally i would do the famvir and make sure your doc is doing regular blood work to keep an eye on them. If they drop too low then just stop antiviral treatment. Here in the land of oz normal neutrophil range is 2 to 7.5. so when i started my neutrophils were 2, they stayed around that for awhile but my test at the end of last year showed they were 1.2 and classed as moderate neutropenia and also because my sinusitis is so dam reliant on antibiotics, my doc and i thought its wise to stop. My recent test came back at 1.7, so maybe in a few months i can get them up into the normal range.

I have started cycloferon and going over my notes i can see that while on it, my neutrophils have spike upwards into the 4s where they are normally in the 2s.

So Madie its possible but i think with famvir its alot safer on bone marrow then valcyte, and just a case of being monitored regularly.

 

[ask2266]

If you are going off antivirals, I recommend that you not exercise too aggressively. After being off Valcyte for 6 months, I felt like I had recovered. I quit all antivirals and supplements for 3 years. Then, I started running. After about 6 months of running, I started having a return of problems.

Well, that intense exercise resulted in my viral levels shooting back up. Intense exercise is hard on the adrenals and negatively effects the immune system. I am now having adrenal fatigue issues (not entirely the same as CFIDS [I have energy, but not sleeping]), and I feel certain that had I stayed on Famvir or Valtrex in the interim I would not have these problems.

I am now considering going back on Valcyte to try to get my adrenals back in line. I will take it for 3-6 months on Valcyte and then be on Famvir after that, perhaps for at least a decade if not forever. Ugh. The struggle continues.

 

[Sparrowhawk]

If you are going off antivirals, I recommend that you not exercise too aggressively. After being off Valcyte for 6 months, I felt like I had recovered. I quit all antivirals and supplements for 3 years. Then, I started running. After about 6 months of running, I started having a return of problems.

Well, that intense exercise resulted in my viral levels shooting back up. Intense exercise is hard on the adrenals and negatively effects the immune system. I am now having adrenal fatigue issues (not entirely the same as CFIDS [I have energy, but not sleeping]), and I feel certain that had I stayed on Famvir or Valtrex in the interim I would not have these problems.

I am now considering going back on Valcyte to try to get my adrenals back in line. I will take it for 3-6 months on Valcyte and then be on Famvir after that, perhaps for at least a decade if not forever. Ugh. The struggle continues.

Hey so sorry to hear you've relapsed some, but great that you still have the option to retry the antivirals. I had already committed to myself should I ever see any significant improvements I would not do anything considered straining if it could be avoided. This seems to be a common theme amongst several people here who saw improvements but then relapsed -- exertion, stress, and/or a new illness set them back...

With all that said, sending encouragement for your next steps and do please keep us up to date on your progress!

 

[SOC]

I had already committed to myself should I ever see any significant improvements I would not do anything considered straining if it could be avoided.

Same here. I don't think antivirals cure the disease. They can, however, vastly improve quality of life. That quality of life can probably only be maintained by continuing to respect the illness.

My daughter has become fully functional (well, 90-100% depending on various things) with antivirals, but she still has immune dysfunction with a tendency for herpesviral reactivations, OI, and thyroid dysfunction. She is very well aware that overdoing or risky exposures could cause a relapse, so she avoids the extremes of physical activity (heavy labor, running regularly, competitive sports) and serious viral exposure situations (travel to areas with endemic viruses, live virus vaccines, etc). She can do light sports and day-hiking on vacation, for example, so she is not excessively limited, but we believe pushing her limits would be asking for trouble.

Antivirals can be an effective treatment, but they're not a cure (yet).

 

[heapsreal]

Finally got my neutrophils up.

I guess ever since i have had cfs my neutrophils have been mildly low or low normal but the last 4 years have been classed as mild neutropenia to moderate neutropenia. Possibly the course of valcyte didnt help there as its known to cause neutropenia, and since starting valcyte a few years back i have had ongoing sinus infections. So i think the neutropenia has had alot to do with this. Im still glad i did the valcyte as it has improved viral symptoms.

About 3 months ago after last seeing my doc and blood work showing the neutropenia, again, i started testosterone cream as well as some high dose b12 injections, 6000mcg twice a week at first for a few weeks and then tapered down to 1 injection a week. During this time i also toook some herbal immune boosters known to help neutrophil production(i have taken these before) astragalus and minor bupleurum. So all these treatments can help in different ways to help improve bone marrow production of white blood cells/neutrophils.

12 months ago my neutrophils were 1.2 (2-7.5), my other 2 tests this years showed 1.6 and 1.7 for neutrophil numbers. After my above cocktail my neutrophil numbers are 2.8 (2-7.5) after 3 months. I have had a recent sinus infection still but doesnt seem as severe and it seemed to respond alot quicker to abx. We will see how if goes over the next few months if the neutrophils can hammer down the sinusitis or if the neutrophil numbers stay up??

I have tried a number of immune modulators and most seem to help but not really longer than a few weeks, i think many of these might be good for a crash(thinking of keeping cycloferon and arbidol up my sleeve for short term use in a crash)? But i am going to stick with immunovir as it has increase my nk count in the past in just a couple of months, so now im going to stick with it for a longer period of time and see if my nk numbers go up higher and if this helps with viral reactivation. I hope?

Im still using famvir in a sort of cyclic way, every so often i stop to see if my immune system can hold infections back on its own. I seem to last about 4 weeks max and then need antivirals. I am finding famvir does turn things around quickly. I think this is due to being on av's long term and have a much lower viral load, so it doesnt take me too long for avs to have an effect. Im hoping with time immunovir increase my nk numbers and function as well as increased neutrophils, that my immune system can keep these infections at bay and i will not be as reliant of av's and abx.

Im still functioning ok and holding down a job, my aim to to also be able to do some exercise consistently as well. Although sleep has improved compared to a few years ago, its still not perfect, it seems to be one of those cfs symptoms that persist.

Time will tell how things pan out.

 

[Sparrowhawk]

@heapsreal so glad to hear you've made this progress, especially sleep seems to be so key in healing so if you are getting improvements there, after such stuggles, then you've got to be happy with that!

Interesting how at this point famvir seems to help and help quickly -- I agree your interpretation of that makes sense that you have a lowered total viral load, but also perhaps your own immune system is better enough that it only needs a little help as opposed to the big guns from before.

 

[Dan_USAAZ]

If we look at what cholesterol is used for its to make hormones and cells etc etc so its possible that an increase in cholesterol might be away to help make more hormones and or repair cells etc im sure there is other uses of cholesterol. I think the cholesterol could be a secondary effect of valcyte ie the body doesnt have to repair cells as much so doesnt require as much cholesterol??? Just an educated guess though.

This thread is a little old, but I wanted to add my experience with Valcyte and cholesterol. If I am understanding posts in this thread, it appears some people have reported a lowering of cholesterol while on Valcyte, followed by an increase after discontinuing.

My cholesterol has never tested over 165 and usually sits in the range of 120 – 160 for the last 30 years. I was on Valcyte for 3 years and came off in February (2017). I had my cholesterol checked this last week and it jumped to 207. Not sure what is going on here, but maybe there is a relationship.

My testosterone and estradiol also jumped up as well. If I understand correctly, cholesterol is a precursor to many hormones including these two. I wonder if the jump in cholesterol resulted in the increase in these hormones. Also, excess testosterone could be getting converted to estradiol.

Has anyone learned any more about a possible relationship between Valcyte and cholesterol?