Generic Valcyte: start or not?

[Immunity]

Hi everyone, My name is Kate and I'm from Ukraine. I've been suffering from CFS for 16 years and I believe that the underlying cause of it is my chronically active HHV 6 (high titres by PCR DNA). In 2013 I eventually found a doctor who I thought would lead me to cure, but instead I started deteriorating after his therapy. He put me on high dose interferons and Valtrex.

After being on this combination for a month I dropped because of severe pain in muscles and constant low graded fever together with running nose and face flushing. Since than, all these "side effects" haven't gone away and I'm living like in a hell not knowing what to do.
Actually I've been reading this forum for a long time and very well acquainted with up to date therapies, doctors approaches etc. The problem is there is no doctor here in Ukraine who would be competent enough to deal with the immune system and I cannot afford seeing Dr Kauffman or Dr de Meirleir. Given the fact I should find the ways to tackle my condition, I decided to start taking generic Valcyte I can buy through alldaychemist without prescription.

Searching for someone's feedback on this generic. Who has already tried it and can say whether it is worth taking or maybe it is worse that the original one and can cause severe side effects? After the treatment described above I also developed autoimmune issues. From what i can infer i have MCAS or MCAD which is regulated with antihistamines. I sincerely hope that Valcyte can rule out both issues - my Herpes 6 and concomitant masto, since it's my last hope.

To be honest, I'm afraid to start Valcyte without knowledgeable supervision so I continue to desperately trying to find a local doctor who would agree to at least monitor my liver-kidneys etc. I'm currently taking probiotics and vitamins, especially active zinc. Tried Lauricidin but it did nothing. Also wanted to try Equilibrant and other russian immune modulators but afraid it will boost my immune system which is not good because of my autoimmune profile. I would appreciate if someone could share his/her thought on my situation and generic Valcyte.

 

[Jonathan Edwards]

Valcyte has serious and potentially lethal side effects. It is very unwise to take it without medical supervision. There is not enough evidence as yet to indicate that it is useful in ME/CFS. I think it would be unwise to take it on the basis of anything said on PR since nobody here has the expertise to advise you.

You need to get advice from a doctor. I realise that may not be easy.

 

[Immunity]

I understand that, but no one is willing to go down the Valcyte road here. I have visited numerous doctors each defending his own strategy through experiments on my health. I've tried a lot of stuff but not improving. Doctors are saying that Valcyte is for HIV and those who prescribe it are not capable to work with immune system. So, basically, I wanted to know if a generic form is something to consider or it's not worth a try. There is not enough info here, since people take mainly the original.

 

[ukxmrv]

I had no problems with Valcyte (from Cipla) from Alldaychemist although I could only afford a small quantity to try.

Been on Valtrex from Cipla for a couple of years with no problems.

Personally I would take the generic Valctye if I could afford to do so. In my case I do have a doctor that I could consult if there were any problems though and with experience of PWCFS using the drug.

 

[Jonathan Edwards]

I understand that, but no one is willing to go down the Valcyte road here. I have visited numerous doctors each defending his own strategy through experiments on my health. I've tried a lot of stuff but not improving. Doctors are saying that Valcyte is for HIV and those who prescribe it are not capable to work with immune system. So, basically, I wanted to know if a generic form is something to consider or it's not worth a try. There is not enough info here, since people take mainly the original.

I don't think anyone on PR will have any idea about the quality of generic valcyte. We need to make sure that PR is not a place where people come for advice on prescription medicines. We are not in a position to provide that and it would be unethical for us to do so.

 

[Immunity]

I came for people's experience rather than advice

 

[Jonathan Edwards]

I came for people's experience rather than advice

I can understand your position but you are wanting to take a prescription medicine without medical supervision and you seem to have come to PR in the hope of help with making that decision. In reality that means that those that offer their experience are influencing your decision in much the way that 'advising' would. There are serious potential problems with encouraging people to take valcyte and I think PR needs to keep well away from influencing people if they do not have medical supervision. PR is not here to help people to make decisions in that context.

 

[Immunity]

Can you give an example of someone who has experienced serious problems from Valcyte? As for me, I think I am already determined to take it, but still looking for at least private doc to monitor my labs.

 

[Valentijn]

I came for people's experience rather than advice

With many drugs you really do need the cooperation of a doctor. Liver, kidneys, white blood cells, blood pressure, etc, are all areas where potential problems problems can pop up with various drugs. A doctor needs to be aware of and/or monitoring for those problems.

I suggest looking for a new doctor, if your current one is not taking your health problems seriously.

 

[Immunity]

Hi Valentijn and ukxmrv, Thank you for your replies. I plan to see one but have heard he is against Valcyte also. May go for Famvir though. I tried Famvir, not for a long period of time, cause it's expensive here. Did well on it but only while being on it. Then all the symptoms returned.

 

[Jonathan Edwards]

Can you give an example of someone who has experienced serious problems from Valcyte? As for me, I think I am already determined to take it, but still looking for at least private doc to monitor my labs.

All I know is that severe haematological complications are recognised - i.e. enough people have had serious problems for it to be a major concern.

 

[minkeygirl]

I had no problems with ADC valcyte

I cannot take more than 450 mgs. Anything higher I have serious painful bloat. At 900 mgs I had horrible anger and rage. I had the same problem with the valtrex.

I also am on 1000 mgs famvir

Not sure about valcyte yet but famvir has helped when I had a viral reactivation.

 

[minkeygirl]

Oh my first labs came back fine. I made the decision to use it becuase there was nothing else available

Listen to people here, the. Make you're own decision.

Everyone makes decisions based on other people's experience whether it has to do with taking and AV, buying a car are going out to eat.

to say PR is only influencing peoples decisions is absurd. This place is filled with people advising, telling their experiences and others making decisions based on that. Most of us are not half wits who run around nilly willy without an independent thought making decisions only based on something someone else said.

It's very easy for someone who is not sick to talk to use like we're cant think for ourselves and urge us to be conservative.

I for one won't sit around and take acetaminophen , as advised, while I wait for a viable treatment.

Advising us to wait and not so things Dan be just as harmful to us as moving ahead with what could be our only hope at the present.

 

[redaxe]

Hmmm to the OP, I can see your frustration.
A lot of people on these forums try drugs for long periods unsupervised - like Low-dose naltrexone or doxycycline - but the risks of these are pretty low to minimal.

Valcyte though is considerably more risky but that said the few studies that have been published regarding Valcyte with ME/CFS didn't raise drug side-effects as a major issue in those trials but all the patients were all closely monitored..

Are you able to see an infectious disease specialist in Ukraine - they would have the most experience with Valcyte and they could monitor your liver, kidney and blood function.
Additionally you could take this resource in to your doctor - page 6 has the relevant information to ME/CFS with Valcyte. This document is right from Stanford University so that carries a lot of authority and might be enough to convince your doctor to try it.
http://med.stanford.edu/content/dam/sm/chronicfatigue/documents/MECFSNewsletter_Spring_2015.pdf


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.

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

 

[Mij]

@redaxe do you know which anti-inflammatory drugs they are considering?

 

[redaxe]

@redaxe do you know which anti-inflammatory drugs they are considering?

Sorry I don't understand the context of your question - who do you mean when you say 'they'?

 

[Mij]

@redaxe I'm sorry, I meant "they": in general as a treatment for M.E.


In 2013, Dr. Jarred Younger (former Stanford faculty, currently at University of Alabama) generated a machine learning algorithm that measured cytokines, then used those measurements to predict high and low fatigue days in ME/CFS patients with nearly 80% accuracy.
In a separate cytokine related study carried out in partnership with the Human Immune Monitoring Center, we
found that several cytokines, chemokines, and cell factors clearly correlated with the severity of ME/CFS. This
data contradicts claims that ME/CFS is not an inflammatory disease.

Not only does inflammation exist in these patients, but also our study opened the door for using anti-inflammatory drugs or biologics to treat ME/CFS.
Further analysis of mRNA gene expression, in a study led by Dr.Lipkin and Dr. Mady Hornig, showed that the
disease with the closest resemblance to ME/CFS is Systemic Inflammatory Response Syndrome (SIRS). These
two studies provide objective evidence that that ME/CFS is indeed an inflammatory disease.

 

[ukxmrv]

Hi Kate

Maybe consider a Skype consultation with Dr Enlander or contact his office in New York to see what countries on Europe he visits maybe?

He comes to London and Ireland but maybe Germany?

If not he might be able to at least help you with tests if you can find a local doctor who would liase with him.

Also try the HHV6 group to see if they have any contacts.

Sorry I can't think of any better ideas

 

[redaxe]

@redaxe I'm sorry, I meant "they": in general as a treatment for M.E.

Ahhh sorry I don't know what Stanford have been up to lately since their earlier Valcyte studies. The last study they did didn't produce the results as strongly as some of the earlier work showed so I'm not sure what is happening now.

I think part of the problem with the Valcyte studies is this - we just don't know enough about the illness to predict how effective the drug may be. Lerner has concluded that patients with long-term ME/CFS or with co-infections such as Lyme don't respond as well to antivirals.
So these unknown factors could be skewing the results in the Valcyte studies.

I suspect once Brincidofovir comes out there might be renewed interest as it is a safer drug than Valcyte and it should be more effective.
Next year there should be reports from phase 3 trials.
http://globenewswire.com/news-relea...for-Brincidofovir-Phase-3-SUPPRESS-Trial.html

 

[Hip]

I understand that, but no one is willing to go down the Valcyte road here. I have visited numerous doctors each defending his own strategy through experiments on my health.

Have you tried printing out the Montoya studies on Valcyte (valganciclovir) for ME/CFS, and showing these to your doctor(s)? That may help get them to consider this treatment. The papers:

Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue

Response to valganciclovir in chronic fatigue syndrome patients with human herpesvirus 6 and Epstein-Barr virus IgG antibody titers

Randomized clinical trial to evaluate the efficacy and safety of valganciclovir in a subset of patients with chronic fatigue syndrome