Switching from Famvir to Valcyte.

[Ema]

I hadn't planned to start Valcyte until after the holidays but due to some insurance snafus, it looks like I will be starting it this week when the Famvir runs out.

Does anyone have any tips for the switch over or ideas on what to expect? I didn't really have any side effects or "herxing" with the Famvir (I've been on it about 9 months) but does that happen with Valcyte? I know I need to do a CMP in a week or two to monitor liver enzymes but is there anything else that I should look out for?

What dosage of Valcyte do you all take? I have been prescribed an induction dose of 1800 mg/day followed by 900 mg/day thereafter. Wonder if it would be smarter to ramp up on the dose?

I feel a little worried about this switch for some reason! Reassurance would be appreciated...

Thanks! Ema

 

[RUkiddingME]

I hadn't planned to start Valcyte until after the holidays but due to some insurance snafus, it looks like I will be starting it this week when the Famvir runs out.

Does anyone have any tips for the switch over or ideas on what to expect? I didn't really have any side effects or "herxing" with the Famvir (I've been on it about 9 months) but does that happen with Valcyte? I know I need to do a CMP in a week or two to monitor liver enzymes but is there anything else that I should look out for?

What dosage of Valcyte do you all take? I have been prescribed an induction dose of 1800 mg/day followed by 900 mg/day thereafter. Wonder if it would be smarter to ramp up on the dose?

I feel a little worried about this switch for some reason! Reassurance would be appreciated...

Thanks! Ema

Hi Ema:

I've also just came off high dose Famvir and is starting Valcyte after the holidays. I haven't seen the prescription yet but am hoping that if I can't tolerat the initial high dosage that I might be able to increase it slowly (with my Doctor's blessing) Starting off with the Famvir at 4 grams 4 times a day I had trouble with severe headache and palpitations after each dose then I started back slowly at 2 grams a day and in three days I was back at 4 grams and was able to get to 16 grams a day with no problems for a month then back to 8 grams a day for two months (regular blood work) I plan to blog on this site about my experience with Valcyte, I can't wait to start it!!! My numbers right now are HHV6 1:320, EBV 1:640 and EBV early antigen 1:160 (the magic numbers from Dr. Montoya's study) I also had a PCR, antigenimia and rapid culture which proved reactivation of HHV6. I have been sick for almost 3.5 years, spent 9 months completely bedridden, housebound for 2 years and need wheelchair for any walking outside the house. I can't wait to see if I can get my any type of life back. Even being able to have my eyes open in a car!!! Cheers

 

[Ema]

I can't wait to see if I can get my any type of life back. Even being able to have my eyes open in a car!!! Cheers

I'll keep my fingers crossed that it works for both of us!

 

[L'engle]

Just curious about your experience with famvir and decision to switch to valcyte. I haven't taken either. I'm interested in famvir because it supposedly has few side effects but it sounds like that is not always the case. Best of luck healing to both of you!

Also the amounts of famvir that I've heard of were in mgs, not grams. Do you know if this is the same measuring system and much higher amounts, or if it is a different measuring system.

 

[heapsreal]

i started with just 1 valcyte a day for a few months then increased to 2 tabs a day, i also stayed on a low dose of famvir while on valcyte.
Im also curious as well about how u guys went on famvir, did u get some improvement??
i think initially starting with famvir can help one tolerate valcyte better as viral load is reduced somewhat?? maybe less iris/die off symptoms??

 

[m1she11e]

I still think Valcytes sometimes horrible side effects are from the toxicity of the drug and not "die off." I have never had "die off" symptoms from Famvir. Im now doing Acyclovir 800 mg twice a day with food. My doc seems to think that this is as effective or more effective than Valcyte but without the harmful side effects. The whole thing is confusing but I like to throw in my two cents from time to time on this subject. I had a horrible reaction to Valcyte that I didnt think I would recover from. I WISH we had a better anti viral available to us!!! My plan is to keep the virus at bay with Acylovir at a high dose until something better is approved. Arent there some in the pipeline that Peterson is doing clinical trials on??

 

[heapsreal]

I still think Valcytes sometimes horrible side effects are from the toxicity of the drug and not "die off." I have never had "die off" symptoms from Famvir. Im now doing Acyclovir 800 mg twice a day with food. My doc seems to think that this is as effective or more effective than Valcyte but without the harmful side effects. The whole thing is confusing but I like to throw in my two cents from time to time on this subject. I had a horrible reaction to Valcyte that I didnt think I would recover from. I WISH we had a better anti viral available to us!!! My plan is to keep the virus at bay with Acylovir at a high dose until something better is approved. Arent there some in the pipeline that Peterson is doing clinical trials on??

so your feeling better michelle with acyclovir??
it did take me a few goes to get use to valcyte, my first few tries were awful but once i got a few other issues straightened out like sinuses and adrenal hormones i was able to better tolerate thje valcyte.
i hope there are some new antivirals coming soon but i bet they will be dam expensive, hopefully it drops the price of valcyte for others to try??

 

[Ema]

my first few tries were awful but once i got a few other issues straightened out like sinuses and adrenal hormones i was able to better tolerate thje valcyte.

What do you mean by awful, exactly, heaps?

 

[Ema]

I still think Valcytes sometimes horrible side effects are from the toxicity of the drug and not "die off."

What kind of side effects did you get?

 

[heapsreal]

What do you mean by awful, exactly, heaps?

for me it was just intense fatigue and felt really depressed, but u realise its the valcyte doing this which makes it easier to understand i guess?? but at the time my sinuses were really bad and my dhea were bottomed out, so once this was sorted then i tolerated valcyte much better.

 

[CBS]

<snip>

I feel a little worried about this switch for some reason! Reassurance would be appreciated...

Thanks! Ema

Ema,

I went from acyclovir to Valcyte. BEST thing I've done since my ME progressed from moderate to severe. I had few side effects (off the top of me head I cannot remember any). Lots of improvement over the past 18 months. Still on Valcyte (450 mg BID - with food; helps with absorption. I started at 900 BID for a month). Don't expect any dramatic overnight changes. And don't overdo it if you start to see improvement (consolidate your gains!). Monthly CMP's and CBC's with diff. My PCP didn't want me to try it as it made him "really anxious." At my last visit, he asked how long I would be on Valcyte (likely 24-36 months), then he stated that if he was in my position, he wouldn't let them take it away!

Best of luck!

Shane

 

[Navid]

hey cbs:

congrats on your improvement. hip hip hooray!!!!! is it advisable/possible to start at a dose even lower than 450 bid and titrate up if you are a ptatient with etreme med sensitivities.

also did valcyte help with pots/nmh if htat was one of our symproms...also what abt chest pain.




so HAPPY you are doing better. you deserve. you are one of the good guys!!!!!

 

[niall]

I hadn't planned to start Valcyte until after the holidays but due to some insurance snafus, it looks like I will be starting it this week when the Famvir runs out.

Does anyone have any tips for the switch over or ideas on what to expect? I didn't really have any side effects or "herxing" with the Famvir (I've been on it about 9 months) but does that happen with Valcyte? I know I need to do a CMP in a week or two to monitor liver enzymes but is there anything else that I should look out for?

What dosage of Valcyte do you all take? I have been prescribed an induction dose of 1800 mg/day followed by 900 mg/day thereafter. Wonder if it would be smarter to ramp up on the dose?

I feel a little worried about this switch for some reason! Reassurance would be appreciated...

Thanks! Ema

Ema, I was on Valcyte in 2008 under the same dosing protocol as you intend to take. About nine days into the therapy, I began to feel a lot more body pain (I also have fibromyalgia) and fatigue. This stayed with me for the full six months of therapy. I did not get any perceivable benefit from this regimen but hopefully you will have more favorable outcome.

 

[RUkiddingME]

Just curious about your experience with famvir and decision to switch to valcyte. I haven't taken either. I'm interested in famvir because it supposedly has few side effects but it sounds like that is not always the case. Best of luck healing to both of you!

Also the amounts of famvir that I've heard of were in mgs, not grams. Do you know if this is the same measuring system and much higher amounts, or if it is a different measuring system.

Thank you! Yes it's the same measuring system. 1 gram =1000 mg. Famvir is less toxic an crosses the blood brain barrier better. I was on high dose for 4 months but with my HHV6 being confirmed active with PCR and rapid culture and with no improvement on the Famvir my doc said I was a perfect candidate for Valcyte. Some people do improve on high dose of Famvir, just depends where the virus has lodged itself also, i.e, tissue, brain . I'm well aware of all the possible scary side effects of Valcyte and over a year ago I never would have considered it, but after two years house bound I can't wait to start it and ride out the storm if I have a chance of any improvement (Any high dosages need to be closely monitored by doctor with regular blood work)

 

[CBS]

hey cbs:

congrats on your improvement. hip hip hooray!!!!! is it advisable/possible to start at a dose even lower than 450 bid and titrate up if you are a ptatient with etreme med sensitivities.

also did valcyte help with pots/nmh if htat was one of our symproms...also what abt chest pain.

so HAPPY you are doing better. you deserve. you are one of the good guys!!!!!

Hi Navid,

Sorry for the delayed response. I do realize that I am lucky to be part of the sub-group that has so clearly responded to Valcyte with few side effects. As for starting on a lower dose of Valcyte and titrating up, I haven't had any experience with that nor have I needed to discuss it with my doctor. I did have fewer apparent side effects with Valcyte than with acyclovir but that could be attributed to the fact that I had been on acyclovir for over 18 months prior to switching. It might also have been because Valcyte was clearly superior and I was becoming stronger and less susceptible to side effects on Valcyte. My kidney and liver values (amongst other blood values) have actually improved on Valcyte which I had not expected. Interestingly, my HHV-6 IGG levels have also jumped (1:640) but I'm feeling stronger and more resilient suggesting that I may be experiencing an overall improvement in immune function. My doc felt that my initial relatively low HHV-6 levels (1:80) were misleading and were not reflective of my actual level of active infection given my signs and symptoms. In retrospect it appears he was likely correct.

My arrhythmia and chest pain have both improved significantly while on Valcyte (and even more so for the last 12 months while on Equilibrant - I would suggest that both have contributed significantly but in the six months I was on Valcyte alone the improvement was dramatic - especially with regards to cognition, head aches and a pre/post comparison of EEGs which my neurologist attributed to a reduced level of brain tissue "irritation" likely brought about by Valcyte).

POTS/NMH for me is an interesting story. For years I had mild/moderate POTS/NMH. In 2008/2009 that changed dramatically as I hospitalized while experiencing profound fluid loss (eventually reaching 24-25 LITERS a day), profound tachycardia and very low/erratic BP (amongst other symptoms). I was eventually diagnosed with central diabetes insipidus (CDI) and was placed on desmopressin. My fluid loss was brought under control in a day. POTS and NMH have not been an issue since then, nor have I experienced any cold intolerance since starting on desmopressin.

I suspect that many ME patients have issues with at least intermittently insufficient anti-diuretic hormone (the cause of CDI). I've gone into detail on this else where. PM me if you have specific questions. I'll simply reiterate that I believe for some patients intermittent (or more florid) CDI causes a significant amount of stress on the body (actually comparable to being in a constant state of mild shock) and that getting fluid balance under control is the first step towards stabilizing the body and minimizing challenges such as extreme sensitivities to medications/supplements and stabilizing HR/BP, etc. Increased fluid and sodium intake may be sufficient for some ME patients but I suspect in others it is not and I know for myself that increased fluids/sodium was initially sufficient, eventually getting on desmopressin was a matter of life or death. That said, desmopressin is a very powerful hormone and I would not be comfortable taking it without the close supervision of an endocrinologist specializing in the pituitary/hypothalamus. I know a specialist like that is hard to find but anything short of that (with the possible exception of a neurologist specializing the in the mid-brain) and you are likely dealing with someone who has never even recognized, not to mention actually treated, a person with CDI.

Best of luck to you,

Shane

 

[m1she11e]

What kind of side effects did you get?

I have neuro symptoms like Vertigo and numbness and from the very first dose of Valcyte (not within minutes of course) my neuro symptoms started getting WAY worse. My doc firmly believed in starting at a lower dose and as symptoms got worse, I was to back off until back to base line and resume at the last dose. I was supposed to do that and gradually work up to the Montoya dosing. (Montoyas original dosing that is.) After a few days of the lowest dose I got Vertigo, and fatigue at a level I did not thnk possible. New parts of my body were going numb and that really scared me. I went from a level of fatigie that I could push through fairly full time work and pass out on the couch to barely being able to walk to the bathroom. I literally would sit up in bed and fall forward to rest back on my pillow and debate the 10 steps to the bathroom. My fear kicked in as I worried that Valcyte was just too hard on my body and maybe other co-infections were running wild. I had to quit my job and I also quit the Valcute intending to return to base line. I did not return to base line for over a year.

When I read Heps and a few of the others posts I am very happy for them! Obviously there are enough positive stories to know that it does really help some and I am not arguing that for a minute! Sometimes I debate (for a split second) going on Valcyte now to see if I do better. I am terrified though because that year it took to return to base line (Actually almost base line. I am not quite there even) was the worst ever in the 30 years I have battled this illness. I didnt understand house bound until then and emotionally it almost did me in.

As far as anti virals helping me... I am no better on anti virals than I was before. Infact, I would rather go back to never taking them at all. My HHv6 was sky high. On Famvir it dropped to almost normal but there was no change in my symptoms at all. I only remain on anti virals because now I seem to need them. I am not the first person to mention this. I beleive undrcvr also experienced this. I am not even to base line (pre anti virals) but if I stop them now I do get sicker. The anti viral have altered something. This is the only reason I am staying on Acyclovir for now.

The decison to take Valcyte or not is obviously very personal and a bit confusing. I was right there looking for positive stories and trying to figure out if I should hang in there. I found very few people with "Montoya like" results although a few were out there.

Again, i hope a better anti viral comes soon. My doctors experience is that you have to test for co-infections like Cpn and treat them at the same time to be successful. He feels when you take any anti viral the co-infections get worse and the patient doesnt recover. Maybe this is why some are more successful with the anti virals.

Just my two cents and personal experience. Tough choices for us!!!

 

[SOC]

Ema
I believe the induction dose has been determined to be a bad idea for PWME. Many of the people who had terrible side effects in the early days were those who did the induction dose protocol.

Dr Lerner starts slow and I believe Dr Montoya does too, now, after having problems with the high induction dose. You might check on that.

I've forgotten the dosage daughter and I took, but I can hunt it up if you want. I was fine until 4 months in when I had what I think was an IRIS rxn. My daughter never had any trouble with it.

My guess is that if you've been on Famvir for 9 months, you might avoid the worst of the Valcyte problems.

We had great luck with Valcyte. I'm just back from a trip to FL to see Dr Rey and am too out of it to read this whole thread or think much about it, but I'd be happy to talk to you about Valcyte after a good night's rest. PM if you'd like to discuss it. You can also search on SOC and Valcyte for some of our history.

 

[Ema]

Ema
I believe the induction dose has been determined to be a bad idea for PWME. Many of the people who had terrible side effects in the early days were those who did the induction dose protocol.

That's good to know. I will start slow then.

Any ideas how they are ramping up now? I haven't seen anything on this lately on the web anywhere.

Yes, please do share the dosage if you can find it.

I was able to get my insurance to approve the Famvir but they will only pay for 500 mg twice a day (I had been taking it 3x/day). So my options are:

1. Take Famvir alone twice a day.
2. Take Famvir alone three times a day and just buy the additional tablets as required.
3. Take Famvir twice a day and add in Valcyte (what dose?).
4. Take only Valcyte.

Now I'm stumped and can't figure out what is the best course of action...maybe I'm overthinking it and should just give the Valcyte a try and see what happens. If I do it now, I can always switch back to Famvir and have a two month supply left to try to fight with my insurance company over their stupid quantity limits.

Has anyone ever appealed a quantity limit successfully? I don't even know where to begin as far as I know there is no literature supporting these doses to use as objective evidence for the dose.

Ema

 

[SOC]

That's good to know. I will start slow then.

Any ideas how they are ramping up now? I haven't seen anything on this lately on the web anywhere.

Yes, please do share the dosage if you can find it.

We worked up to 1350 mg (3 450mg caplets) over time. I don't remember how long, though. It is advised that you don't break them (make sure you read the safety info that comes with it), so I think we increased 1 pill per week as long as we were tolerating it. We ended up taking 2 in the morning and 1 in the evening.

Please make sure you get frequent tests to check for neutropenia and liver problems -- no less than once every 6 weeks. I was told that those dangerous side effects are reversible if you catch them quickly.

I was able to get my insurance to approve the Famvir but they will only pay for 500 mg twice a day (I had been taking it 3x/day). So my options are:

1. Take Famvir alone twice a day.
2. Take Famvir alone three times a day and just buy the additional tablets as required.
3. Take Famvir twice a day and add in Valcyte (what dose?).
4. Take only Valcyte.

Now I'm stumped and can't figure out what is the best course of action...maybe I'm overthinking it and should just give the Valcyte a try and see what happens. If I do it now, I can always switch back to Famvir and have a two month supply left to try to fight with my insurance company over their stupid quantity limits.

Has anyone ever appealed a quantity limit successfully? I don't even know where to begin as far as I know there is no literature supporting these doses to use as objective evidence for the dose.

Ema

If you don't have a chronic HHV-6 or CMV infection, I wouldn't mess with Valcyte. It's a serious medication with serious potential side effects. OTOH, if you do have one of those infections, it's the only known treatment, so worth trying.

Some docs are finding good effect with Famvir over a long time, even with HHV-6 and CMV (if they're not really severe infections, I think). So Famvir could easily be a good option for you. I think they add immune modulators along with the Famvir, which makes a lot of sense to me.

Another thing to consider is that if you have a neurological infection, you need to get the med through the brain-blood barrier, which is not easy. High doses are sometimes used, so that even if only a small fraction of med gets through, it's enough to do some good. My guess is that immune modulators improving immune function also help to get at neurological infection by the immune system's natural methods.

If I was starting over today, I would consider starting Famvir plus one of Imunovir or AHCC and an HHV-6 transfer factor product like this https://www.prohealth.com/shop/product.cfm/product__code/PH172. I would then add or change to Valcyte after a year or so if I didn't seem to making headway with my HHV-6 infection. I suspect it would reduce the nasty period some people experience with Valcyte. Just a guess, though.

There's no easy answer, sadly. Valcyte was huge for both my daughter and I. We both had substantial HHV-6 infections, so that's not surprise. I'd take it again in a flash if our HHV-6 reactivated. and the doc suggested taking Valcyte again. That doesn't mean it's the best answer for everyone, of course.

 

[heapsreal]

That's good to know. I will start slow then.

Any ideas how they are ramping up now? I haven't seen anything on this lately on the web anywhere.

Yes, please do share the dosage if you can find it.

I was able to get my insurance to approve the Famvir but they will only pay for 500 mg twice a day (I had been taking it 3x/day). So my options are:

1. Take Famvir alone twice a day.
2. Take Famvir alone three times a day and just buy the additional tablets as required.
3. Take Famvir twice a day and add in Valcyte (what dose?).
4. Take only Valcyte.

Now I'm stumped and can't figure out what is the best course of action...maybe I'm overthinking it and should just give the Valcyte a try and see what happens. If I do it now, I can always switch back to Famvir and have a two month supply left to try to fight with my insurance company over their stupid quantity limits.

Has anyone ever appealed a quantity limit successfully? I don't even know where to begin as far as I know there is no literature supporting these doses to use as objective evidence for the dose.

Ema

ema, i was on famvir 250mg twice a day. When i started valcyte i stayed on famvir 250mg in the morning and started with just 1 valcyte at night, no nightly famvir. i decided nightly dosing as i thought it might help control some of the valcyte symptoms if i was asleep during this time, plus sleep medication would help with that also. After a couple of months i added the second valcyte at night and remained on famvir. AFter being on this for awhile i then started immunovir which initially like 3 days i felt bad but now im good with immunovir.

I think gradually tapering up is a good thing and can help reduce die off/iris symptoms.

AT this stage i am unsure how long to stay on valcyte but will talk this over with my doc soon. It is abit scary thinking of the day when one staops valcyte after improving so much on it, the thought of relapsing is always sitting there in the back of your head. It seems alot of people who have sustained progress with valcyte have been on it for over 12 months, but there are know hard and fast rules to this, bugger!!