Generic Valcyte: start or not?

[Immunity]

Good morning and thank you all for your answers!
They were really helpful. I've recently seen a so-called "chief immunologist of Ukraine". He is a rather sceptical man, but was open to my treatment ideas. As my major symptom is muscles pain all over the body and low graded fever he asked for additional labs - neuromarkers in order to see how my CNS is affected. He said my immune system is overdriven as a result of high dose interferons in 2013 and he most probably will put me on suppressive therapy: hormons or immunoglobulins. He is not against Valcyte, but commented that this drug is a sort of chemotherapy and if I am not afraid to lose my hair I may go for it, though he thinks it's completely useless at all (not only in my case). This is where I don't agree with him. He will supervise me and that was my goal. Did someone start losing his/her hair while being on Valcyte?
I would also like to try Freddd's protocol which I printed out and showed to the doc. He commented that all the methyl stuff is not bad as it is better absorbed and if I want I may try it. This spring i had been injecting cyanocobalamin and B6 untill I got worse spending one month in between my home and hospital with an excruciating pain in my upper back. Have never experienced that before.
Can I combine Valcyte, methylation and immunosuppressive therapies? What do you think? Wouldn't it be too much? Since the doc approves of everything he will not be very discerning digging deeper to forecast the effects.

 

[Immunity]

The other thing I should mention though is - if you have consistently tested highly positive for HHV6 by PCR have you ruled out Chromosomally-Integrated-HHV6? This is a genetic condition where the HHV6 virus has integrates into the chromosomal DNA. We don't seem to know alot about it except that it it is quite rare but seems to be more common in people with ME/CFS or encephalitis although it can remain asymptomatic too.
http://hhv-6foundation.org/what-is-hhv-6/chromosomally-integrated-hhv-6

The reason I say this is because normally once your body gets exposed to HHV6 it should build immunity to the virus so viral copies in the blood should quickly fall - and PCR should demonstrate this. If you consistently test for a high viral load than it could be CI-HHV6. The HHV6 Foundation is the group that is gathering information about this.

Redaxe, there is no test here to differentiate between the two types of the virus. I know I have a chromosomally integrated variant, because my mother has the same symptoms and my son has an active HHV6 by PCR. I don't even initiate treatment for my son, as he is not symptomatic and our specialists can only make the situation worse.

Also if you're in the Ukraine could that at all make you eligible to partake in Fluge and Mella's Rituximab studies?

I am in Ukraine, not in the UK, where these studies are running.

 

[JAH]

I've been on valcyte for over a year and no hair loss yet! Just want to caution yet that it is no panacea. I still feel very sick, and have little hope that valcyte will help me in a significant way. Valtrex actually helps me a little more noticeably - when I go off it, I get a flare of the flu like symptoms. Like many others I can't tolerate more than 450mg. of valcyte, anything higher makes me feel extremely ill.

I don't think that Freddds protocol would conflict with the antivirals - maybe just the opposite. Rich V (methylation guru on the forums) thought that his methylation protocol did not work on some people because of active virus. I have no idea about the "immunosuppressive therapies."

Just to echo what the doc and others are saying, Valcyte is a serious drug that needs medical supervision, including regular blood tests. I'm sorry you don't have a CFS specialist in your area - if it makes you feel any better, I have a few around me, and am still sick as ever! But seriously, I hope you are able to find a competent doc to help guide you...JAH

 

[Immunity]

Thank you, JAH,
My greatest fear is that my autoimmune reaction could be irreversible. The doc is not so pessimistic and says he knows how to make immune system work correctly.
Rich's protocol contains folinic acid which made me sick, so maybe he's right. I find Freddd's plan be suitable. A friend of mine who's got Lyme gave me MethylB12 to try and I felt an immediate effect - brain fog disappeared. This was a 10-pill try, which persuaded me to go through a full methylation cycle.
There's a lot of methylation-related info on the forum and it takes time to understand it all, so maybe you can tell me how long should one be on the protocol? Thank you!

 

[redaxe]

Thank you, JAH,
My greatest fear is that my autoimmune reaction could be irreversible. The doc is not so pessimistic and says he knows how to make immune system work correctly.
Rich's protocol contains folinic acid which made me sick, so maybe he's right. I find Freddd's plan be suitable. A friend of mine who's got Lyme gave me MethylB12 to try and I felt an immediate effect - brain fog disappeared. This was a 10-pill try, which persuaded me to go through a full methylation cycle.
There's a lot of methylation-related info on the forum and it takes time to understand it all, so maybe you can tell me how long should one be on the protocol? Thank you!

Hello. Yes some of us have interesting reactions to B12.
Early on I took a generic multi-vitamin that had a lot of B12 cyanocobalamin - That seemed to make no difference to me.

Yet 6 months later when I tried Hydroxycobalamin B12 I got an almost immediate lift from it - not a cure by any means but still it seemed to make things a lot better.
There should be no issues with taking methyl supplements with Valcyte. So am I right in saying that your immunologist is ok with you doing Valcyte? I haven't heard of people suffering hair loss to be honest.
Dr Lerner's guide for Valcyte can be found here
http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf

The usual treatment for either/both is valganciclovir (Valcyte) one 450-mg capsule daily for three days, followed by two 450-mg capsules in the morning daily. Liver function tests are studied very carefully. If there is any abnormality, one alters the dosage. Given the patient’s ability to safely tolerate two 450-mg capsules, dosing can be increased to two, 450-mg capsules in the morning and a one additional 450-mg capsule twelve hours later. Liver function tests, again, must be studied carefully and frequently. Both valacyclovir and valganciclovir are absorbed with a 20% increment if there is food in the stomach. The most common side effect of valganciclovir is hepatotoxicity. If this occurs, the drug is stopped, the dosage is decreased, and is again restarted. When monitoring reveals AST and ALT are normal, the monitoring can continue every four to six weeks, but more frequent with hepatotoxicity. The rule is no valganciclovir at all if there is any abnormality in liver function.

If you do go the Valcyte road - I'll add my own recommendations. No cigarettes (if you smoke), no alcohol and minimize paracetamol, codeine and other drugs that can affect liver function. I'd also supplement with 1200mg of N-Acetyl Cysteine daily. If you do this I suspect you'll decrease your risk of side-effects to the drug.

 

[SOC]

Did someone start losing his/her hair while being on Valcyte?

Ridiculous. Hair loss has never been a known side effect of Valcyte. Valcyte can have some very serious side effects -- neutropenia and liver damage, for example -- but hair loss, no. I suspect the immunologist is playing some kind of mind game with you to discourage you from taking Valcyte. It's not "chemotherapy" in any standard sense of the word. It's an antiviral like Valtrex. That doesn't mean it's not a serious medication that needs careful monitoring.

FWIW, three members of my family have been on Valcyte for years and all of us have nice, thick heads of hair.

I'd go with immunoglobulins before I'd take Valcyte because it's generally safer and has the potential to affect more pathogens than just HHV6 and CMV. This is not because I don't like Valcyte. I'm a big fan, actually. Valcyte did the most for me (and other family members) of all the treatments we've had. I am eager to take it when I need it, but I'm well aware of the potential side effects. I'm currently getting IVIG (intravenous immunoglobulins) which I was not eligible for until this year. I'm hoping it will have a broader impact on my immune problems than other treatments I've been able to get so far.

 

[Immunity]

I'd go with immunoglobulins before I'd take Valcyte because it's generally safer and has the potential to affect more pathogens than just HHV6 and CMV. This is not because I don't like Valcyte. I'm a big fan, actually. Valcyte did the most for me (and other family members) of all the treatments we've had. I am eager to take it when I need it, but I'm well aware of the potential side effects. I'm currently getting IVIG (intravenous immunoglobulins) which I was not eligible for until this year. I'm hoping it will have a broader impact on my immune problems than other treatments I've been able to get so far.

Hi, @SOC. I've read a lot of your posts and know about your and your daughter's experience with Valcyte. Your story was also inspiring for me.
Can you give me the names of the iv immunoglobulins you're getting, please? Our local version is "Bioven", but I know of better variants like "Gamunex", "Intratect" and "Octagam".
Have you had any side effects from them? Among the listed I can see allergy symptoms. And I'm already allergic...

 

[SOC]

Hi, @SOC. I've read a lot of your posts and know about your and your daughter's experience with Valcyte. Your story was also inspiring for me.
Can you give me the names of the iv immunoglobulins you're getting, please? Our local version is "Bioven", but I know of better variants like "Gamunex", "Intratect" and "Octagam".
Have you had any side effects from them? Among the listed I can see allergy symptoms. And I'm already allergic...

I think I'm getting GammaGard. I have not had any significant side effects. They do give Tylenol and Benadryl along with the infusion. I don't tolerate the maximum infusion rate -- I get body-wide muscle cramping, very uncomfortable, but it goes away when we reduce the infusion rate. I'm usually fatigued enough after the 6 hours at the hospital that I need to go to bed when I get home, but I'm fine to work (part-time) the next day. None of this is a big deal.

If anything, I'd say I have less allergic symptoms since getting IVIG, but that's a vague impression, not a certainty. My allergies certainly aren't worse.

 

[Immunity]

Hi everyone,
I'm still not on Valcyte because I'm afraid to take it. My present doc is not against my taking it but I see he knows nothing about this drug. Neutropenia is what frightens me most. Before you get the blood tests done and get to see the doc you can possibly pass out.
After checking my immune status tests he said he wouldn't give me IVIG because my circulating immune complexes are very high (twofold increase) what accounts for my autoimmune problems and my liver is not coping with smth, so IVIG will also clutter it up. He prescribed glutathione for 10 days before going for any antiviral. I'm still thinking. Famvir seems to be more safe for me, but it won't lead me to a remission. I'm only better while being on it. I was hoping Valcyte would somehow twist my immune system as it has immune modulating properties. But maybe I'm wrong and it will only do its antiviral work leaving my MCAS-associated symptoms aside, though dr. Kaufmann thinks that if we treat the underlying cause autoimmune issues can get better. What are your thoughts about that?

 

[SOC]

Neutropenia is what frightens me most. Before you get the blood tests done and get to see the doc you can possibly pass out.

I've never heard that before.

Neutropenia is indeed a serious potential side effect of Valcyte, so you need to be watched for its development. I've taken Valcyte under two different ME/CFS specialist with years of experience using Valcyte in ME/CFS. Both were very clear that it is critical to have regular labs to check for developing neutropenia, but that it comes on slowly and is completely reversible if caught before severe neutropenia develops. One doctor tested every 6 weeks, the other every 3 months.

My daughter's WBC count started to drop (just barely) after a couple of years on Valcyte. The doc dropped her dosage and her WBC count returned to normal. She's had no other problems with Valcyte before or since. That is not to say that Valcyte is completely innocuous, but it is not a terrifying, likely-to-kill-you medication, either.

IMO, you should not take a medication if it worries you (in most cases). You will survive without Valcyte. It is not a medication I would take without clear evidence that you have the condition it's intended to treat, or a doctor who understands the condition and the med and believes it will help you.

 

[Immunity]

SOC, thank you for your opinion!
Just thinking about being on famvir until something better comes up, like brincidofovir.
Of course I will survive without Valcyte, but the quality of life is in question... I feel bad most of the time but my case is still mild. If I still work 5 days a week, full-time, though struggling through the day, maybe I can take mild pills so far..

 

[SOC]

SOC, thank you for your opinion!
Just thinking about being on famvir until something better comes up, like brincidofovir.
Of course I will survive without Valcyte, but the quality of life is in question... I feel bad most of the time but my case is still mild. If I still work 5 days a week, full-time, though struggling through the day, maybe I can take mild pills so far..

I know you'll survive without Valcyte. My point is that it's not so critical to survival that you should still take it even if it worries you. There are other options. Famvir does seem like a good choice since it has a lower side effect profile than Valcyte. Have you had viral testing? Do you know which viruses you're fighting. Different AVs work better on different viruses; they're not completely interchangeable.

I'm with you 100% on the QOL issue. There are minor risks associated with a couple of meds I take, but the QOL improvements I get are well worth those risks. Remission is asking a lot, though.

Have you looked into orthostatic intolerance as a cause of some of your symptoms? Sometimes getting that under control can make a big difference in QOL. Many (most?) PWME have some form of OI.

 

[Immunity]

Yes, I have HHV 6 high titres in blood by PCR (probably chromosomally integrated) and CMV high antibodies (the latter has not been detected in blood serum by PCR). So, probably i feel better on famvir because it's fighting CMV, but I don't think it could significantly lower HHV6.
OI is something I've learnt about not so long ago and I seem to have the major symptom: for example, cannot stand for more than 10 minutes or even less. This appeared together with aggravation of my MCAS and I seemed to take that under control a bit by taking antihistamines and quercetin. Will have a look at possible treatments, but isn't it just a concomitant condition which could be cured with antivirals?

 

[SOC]

Yes, I have HHV 6 high titres in blood by PCR (probably chromosomally integrated)...

Ouch, that's bad.

...and CMV high antibodies (the latter has not been detected in blood serum by PCR). So, probably i feel better on famvir because it's fighting CMV, but I don't think it could significantly lower HHV6.

I think you're right there, if I remember the relevant information correctly. Have you seen the HHV6 Foundation website? There's info on current research, testing, treatment, and even a section on ciHHV6.

OI is something I've learnt about not so long ago and I seem to have the major symptom: for example, cannot stand for more than 10 minutes or even less. This appeared together with aggravation of my MCAS and I seemed to take that under control a bit by taking antihistamines and quercetin. Will have a look at possible treatments, but isn't it just a concomitant condition which could be cured with antivirals?

Not necessarily, and not quickly. If you have OI, you can get some improvement in symptoms within days or weeks with the right treatment. Waiting to clear the infections and for your body to heal (assuming it will completely) could take years. And that assumes that the infection alone is causing the symptoms, and that may not be true in ME. If you're looking for QOL improvements, getting OI treatment now could make a big difference.

 

[Immunity]

Yes, I have read almost everything oh HHV6-foundation, but have to admit this forum contains more useful and practical info.
Among the other treatments with mininal side effects it is possible to try Artemisinin. Other stuff is highly toxical and is available only in the hospital.
My 12-year old son also has active HHH V6 and he shows signs, but I will not even think about treating him here, at least not until he starts complaining.
Thank you, SOC!

 

[redaxe]

Yes, I have read almost everything oh HHV6-foundation, but have to admit this forum contains more useful and practical info.
Among the other treatments with mininal side effects it is possible to try Artemisinin. Other stuff is highly toxical and is available only in the hospital.
My 12-year old son also has active HHH V6 and he shows signs, but I will not even think about treating him here, at least not until he starts complaining.
Thank you, SOC!

Are you still considering Valcyte?

Regarding toxicity and side-effects its probably blown up a bit. There's far nastier drugs out there more commonly prescribed for many diseases; think accutane for acne; prednisone for sarcoidosis and other diseases. Lets also not forget prozac for depression (this carries a risk of suicide) and the overprescription of ritalin to school aged boys.

It seems like for Valcyte most problems (i.e. liver/blood) build up over time. I think some doctors used to start their patients on a high loading dose which did cause some issues for people so this was discontinued. Dr Lerners latest approach was to start with 2 pills/day (900mg daily).
If you wanted to be especially cautious you could even get a baseline liver/kidney/blood check done (so your doctor can see if there is any change after you start treatment) and start on 1 pill per day or even 1 per 2 days for the first week or 2 if you want to see how your body handles a small amount of the drug before moving up to a higher amount.

Thing is it's not like an antibiotic where you have to take it at a high dose to try to kill the bacteria quickly it's a longterm slow acting treatment so I can't see a reason why you can't introduce the drug into your system more slowly.

 

[Immunity]

Hi, redaxe,
I completely agree with you about the drugs. It's after a very high dose of interferons that I got worse and worse. That "doctor" prescribes them to everyone regardless of the virus type. I trusted him and now I don't trust anyone, even the most famous and praised doctors.
Actually it's been my 2nd week of Valcyte. Strange things are happening to my heart. I have never had this symptom before, it's heart palpitations, tachycardia and low blood pressure accompanied by a feeling like my ears are laid (I'm not sure the latter was the right word though), but it happens during the take off of the plane. I hope you understand
I guess it may still be the effect caused by 1 pill of MB12 (5000 mg) which I took 20 days ago, but it was enough to provoke insatiable need for potassium. I added potassium gluconate but still cannot stop the reaction despite i never continued with methylb12. I don't know what to do more. Have visited cardiologist, done EKG. Nothing wrong in terms of the heart. A neurologist said it could be "anxiety syndrome" and I should take something against it....
I've read a lot about methylation and know that the reaction can be stopped with nyacin. I can buy it but not sure what's happening. Does anyone have any ideas?
Speaking about Valcyte effects, I follow a low-dose protocol, discovered by @zzz here and seem to tolerate the drug well. First 2 days I had a headache, severe but bearable. After that - an episode of pain in the upper back. I started with 1/32 pill and plan to gradually increase the dose up to 1 pill per day. Cannot afford more than that.
Will post my progress (if any) here in this thread.
My biggest issue is heart strange behaviour. Cannot attribute it to Valcyte as it had all started before I took a pill. Or maybe, by adding Valcyte I just triggered healing that's why the need for potassium increased. Or it has nothing to do with potassium. I am at a loss...

 

[redaxe]

Speaking about Valcyte effects, I follow a low-dose protocol, discovered by @zzz here and seem to tolerate the drug well. First 2 days I had a headache, severe but bearable. After that - an episode of pain in the upper back. I started with 1/32 pill and plan to gradually increase the dose up to 1 pill per day. Cannot afford more than that.

Ah you are doing the low dose Valcyte. If Im not mistaken Valcyte is supposed to induce some immunomodulatory effect so you are trialling that approach.
If you're trying to fight HHV6 though my understanding is that you need to be on at least 900mg daily because I think from what I've read that Valcyte isn't as active against HHV6 as it is against CMV so that is why the older anti-viral approaches used Valcyte at high doses

 

[zzz]

If you're trying to fight HHV6 though my understanding is that you need to be on at least 900mg daily because I think from what I've read that Valcyte isn't as active against HHV6 as it is against CMV so that is why the older anti-viral approaches used Valcyte at high doses

Valcyte is equally effective against all herpes viruses. The reason that it is used against CMV more than other herpes viruses is that Valcyte is very expensive and also may have serious side effects, but it is the only drug effective against CMV. There are a number of other antivirals effective against the other herpes viruses. However, in many cases, Valcyte may still be more effective. For these reasons, people are often started on an antiviral like Famvir for certain herpes viruses, and only moved to Valcyte if the first antiviral doesn't work.

The autoimmune effects of Valcyte appear to work at very low doses - quite possibly at doses below 1 mg/day. Such doses would be effective against herpes viruses along with other infections in general. For this reason, it is probably not necessary to take 900 mg/day of Valcyte to fight HHV6 or other herpes infections. Far more research is needed here.

The original research was done with IV ganciclovir, which is what Valcyte is metabolized into in its first pass through the liver. The research was done on AIDS patients with CMV retinitis. As CMV retinitis only appears in AIDS patients with advanced immune system failure, the immunomodulatory actions of ganciclovir were not apparent, as there was not enough of a functioning immune system to modulate. For this reason, the full 900 mg/day dose was absolutely necessary for fighting these infections in AIDS patients to obtain the antiviral benefits. But in people with functional immune systems, a few milligrams of Valcyte per day may be enough to achieve the same effect through immunomodulation. The fact that our immune systems are dysregulated does not appear to be a problem, as Valcyte (and more specifically, its ganciclovir metabolite) appears to address this dysfunction.

 

[redaxe]

The autoimmune effects of Valcyte appear to work at very low doses - quite possibly at doses below 1 mg/day. Such doses would be effective against herpes viruses along with other infections in general. For this reason, it is probably not necessary to take 900 mg/day of Valcyte to fight HHV6 or other herpes infections. Far more research is needed here.

Hmmm interesting. Well I all I can say is that Dr Lerner told me to go on 1350-1800mg of Valcyte daily for treating HHV6.

Sadly (not living in the US) I never got to see him again. It would be interesting to have heard his thoughts on that theory though. You might be right but it seems like there isn't much interest anymore in antivirals. Maybe Stanford will do some more once Brincidofovir is more readily available.