Valcyte in the UK.

Discussion in 'Fibromyalgia Main Forum' started by CountDuckula, Dec 12, 2007.

  1. CountDuckula

    CountDuckula New Member

    Since finding out about Valcyte I've been to see my doctor, I presented him with information about Dr Montoya and the Valcyte treatment but he said there's no way any doctor on the NHS would allow me to take it when it hasn't been fully tested. He even said he didn't think viruses were the cause of the illness, one of the doctors at this surgery thinks the condition doesn't exist. So now I don't know what to do, during this time a year I'm pretty much housebound with the tiredness and general flu like feeling, in the summer I'm better and I can go out to do stuff but I want to be better all the time so I can start my life again, what can I do? How can I get tested for those viruses that Valcyte responds to? And how can I get treated with it? I can get the drugs but I read that there is some risk when taking them, and one shouldn't take them without medical supervision so I'm in two minds about what to do. I can't afford to go private, I only get £70 ($140) per week.

    I fit the subset of patients who developed CFS though an initial flu like virus, I was hospitalised with the virus 3 years ago so I think the treament would work for me. Please help.

  2. Bluebottle

    Bluebottle New Member

    Isn't it frustrating to know there's something that would help if only we could get hold of it?

    Like you, my M.E. satarted with a flu like illness, mine 20 ywars ago. Valcyte isn't available to us on the NHS. I emailed the GP at the Abbey Practice to ask if he would prescribe it, & he replied that a month's supply would cost about 1,000 UK pounds. There's no way I could afford a course at this price.

    The ironic thing is that it would actually be cheaper for the country to give me the Valcyte and have me back teaching than to live on benefits.
  3. sascha

    sascha Member

    know about valcyte and that many PWC's have responded to it, even though it hasn't yet been statistically proven. are there ME support groups, or online information that could lead you to some professional who could help you through the process of obtaining the prescription, and then follow your progress? i bet there are a number of people now using Dr. Montoya's protocol over there.

    Roche drug company supplies the medication free to people who qualify financially. i've filled out the forms and sent them in. you have to get a doctor's prescription, and you must be followed carefully with blood tests to monitor liver and kidney function and blood count. i will have to have weekly blood tests the first month, then i think it goes to bi-weekly.

    you can get the protocol from Dr. Montoya at Stanford University. it's easy to find online--probably googling 'chronic fatigue study + Dr. Montoya' would take you to the site.

    so you need the protocol and a doctor willing to work with you. you can also get information on the testing needed at that site; or a contact number to phone for inf. it's just about impossible to reach Dr. Montoya himself- he's too busy and has to work with the people in the ongoing study, but you can still get the information there.

    the testing for viruses checks for presence of EBV, HHV6, and another i can't think of the name for. i didn't test positive for EBV, but tested very high for HHV6 plus one other herpes virus.

    best of luck to you- hope you can find support for trying out this treatment if it's what you want to pursue. Sascha
  4. Leitwolf22

    Leitwolf22 New Member

    Not only our doctor is not going to prescribe it, also you couldnt afford the medication privately. Valcyte treatment costs around 2000$ a month. The indication for valcyte would be a proven, active HHV6 infection.
    Your insurance will hardly pay for testing HHV6, and even if and the results were postive, you still have no doctor to believe in the existence of chronic viral infections.

    CFS is all about money. So what do you need? A miracle!
  5. CountDuckula

    CountDuckula New Member


    "Roche drug company supplies the medication free to people who qualify financially. i've filled out the forms and sent them in."

    Where did you get them from?
    [This Message was Edited on 12/13/2007]
  6. ZahraK

    ZahraK New Member

    My experience in the UK was that doctors are very reluctant to send you for the viral blood tests. I was told the HHV6 test is still unreliable and expensive so they wouldn't do it on the NHS. I was able to see an ME specialist using private health insurance but he refused to believe my illness had anything to do with a virus (despite my main symptom being I felt like had the flu all the time).

    I was very very lucky my husband was relocated to NY so I've managed to get treatment with valcyte here. We're moving back to the UK next year and I'm worried about what will happen if I need another course. I'm tempted to stock up on the valcyte here to bring back with me but it does need constant monitoring. The valcyte can cause serious problems with white blood cell levels so I wouldn't want to take it without supervision.

    People don't seem to have heard much about valcyte in the UK so my only hope is that the results of the Stanford trial create a media frenzy which may trigger some British research...
  7. Lichu3

    Lichu3 New Member

    Someone posted a while back about seeing a doctor in Ireland to get antivirals. Unfortch, I don't remember the poster's name. It seemed like the doc was reasonable.
  8. CountDuckula

    CountDuckula New Member

    I'd like to find out more information about this, would there be any chance you can find out more info for me please.
  9. clo1

    clo1 New Member

    i just happened to peruse your thread and then googled Roche Valcyte...they have a category called "programs and services"...then you can go from there to "patient assistance programs" does say at the top that this is Roche pharmaceuticals USA...but maybe they can guide you to the right department in the UK or elsewhere in europe...i'm sorry to hear that it's so difficult to get throught the NHS...there are MANY (in fact most) private insurance doctors here who will NOT prescribe it for this condition either...but i think many of us may be a bit surprised that with a name like Myalgic Encephalomyelitis, the disease does not get more respect over there than it does here with the absurd name Chronic Fatigue Syndrome...i am fortunately in the stanford clinical trial, and i know that dr. montoya speaks to many doctors on behalf of their patients all over the place, so i hope you can find someone with an open mind who would be willing to speak with him and get his to you, clo
  10. clo1

    clo1 New Member

    hi again count....i did a search by "content" with the word "Ireland", and i eventually came up with a post by a user named "Evadyl" entitled "I got in touch with the doc in Cork"...from 9/8/07...hope that helps...clo
  11. deliarose

    deliarose New Member

    Yes, but unless mistaken, this Cork doctor was prescribing Famvir or Valtrex not Valcyte.

    Do a search under Evadly's name though to confirm.

    For those Brits who cannot get Valycte, have you considered transfer factor such as Chisholm Lab's Immune Factors.

    They're weaker, and act differently from anti-virals..but theyr'e an option.

  12. CountDuckula

    CountDuckula New Member

    Do people respond to Valtrex?

    I've checked up and Valtrex is A LOT cheaper than Valcyte because there's a generic version of it. If people respond to it I could see about giving it a go.
  13. nselissen

    nselissen New Member

    I heard that the UK can try a lot of more things because the medicine does not have to be approved by their government. (FDA) I talk with a lot of people in the UK message boards.
  14. NicolaG2

    NicolaG2 New Member

    I have just returned to the UK and looked into the Roche 'free' Valcyte program before I left the USA. It is a USA thing and Roche Europe are only vaguely aware of the program and they do not have a similar deal.

    I too was told NHS won't cover it and the cost would be £1200 per month. Luckily, miracle of miracles, my insurance not only covered it, but also gave me 6 months worth in one go. Dr Enlander in NY wrote the prescription for 6 months, I have to be monitored by a Doc here and also fax blood work regularly to Dr E.

    I'm sorry to say that it looks as though unless you have masses of savings (and who has after dealing with this illness for so long) you may just have to wait and hope that the Montoya study eventually leads to Valcyte being used and covered in the UK.

    My luck also held when I registered with my local practice. I got a GP who believes in the illness, was willing to monitor me on Valcyte and had tried to help a couple of other ME patients in the past. He admitted his knowledge is very limited, was eager to see which initial tests Dr E had done on me for his future reference with other patients. He had not heard about the Valcyte study and wants me to bring him info on that and 'anything else I want him to read/know about ME' that will help him understand more and may be of use to his other 2 patients.

    I wish you luck and hope you can work this out some time in the near future.
  15. CountDuckula

    CountDuckula New Member

    I could afford Valtrex so I could try that first, the generic Valtrex would cost less than £1000 for a year's course. As for Valcyte I have access to £2000 and I'd see about getting a loan for the rest. If the medication brought me back to a level where I could start working again it would be worth it since i'd be able to pay off the loan. I don't know what I'd do if it didn't though.

    The only problem now is finding a doctor, does ANYONE know any doctor in the UK who would help me with virus tests and monitoring? Or who can point me in the direction of someone who does (UK forum and/or someone in the UK who has been treated) I'm willing to pay for the medication myself.

    My doctor always says the same thing every time I see him "It's not possible for it to be a virus, you'd die." What can I say to that? I'm gonna see about changing surgeries anyway, perhaps a new doctor is in order.


    One more thing, if I request the virus tests, what exactly should I ask my doctor for?
    [This Message was Edited on 12/14/2007]
  16. Bluebottle

    Bluebottle New Member

    Go to Dr Myhill's website for advice on these tests.
  17. sascha

    sascha Member

    i called Roche drug company- gave my inf., address, whatever they asked/needed, then they sent out the forms. you can find tel. number online. google 'Roche' + 'drug company' or equivalent. should be easy to find it online. and good luck! AND report back what happens~~~

  18. ladybugmandy

    ladybugmandy Member

    hi all. roche wont give valcyte for free in canada but maybe they will in the UK....good luck!

    there must be SOME GP's somewhere in the UK who would rx valcyte...i found one in toronto much to my shock!

    you can send your blood in to specialty labs youself and pay for the antibody tests yourself (thats what i did) and find out if you have elevated antibodies.

    a doctor would have to sign the requisition but since you are paying they won't have a problem doing that.

    i wish you the best of luck.

  19. I saw ID people a while ago and meant to ask them about this, but held off, partly due to the fact I'm in the mild band of sufferers and felt as if they'd think I was just mental- which I know I'm not. I've decided to wait until the results of Montoya's study are published to press forward with Valcyte.

    I did become ill as the result of a virus -a confirmed past infection to EBV, which was done on the NHS in Scotland. I think your GP has to ask the lab if they would be willing to do this however.

    Lately though I've just felt so frustrated that I've asked my GP about Valtrex, even though I myself have doubts that it would work for me, but even still, why not give it a shot? I'm sure most of us are willing to try just about anything.

    *off subject*
    The ID guy was supposed to do the C4/CD8 ratio test which I specifically asked for, as did my GP and they agreed that it was possible -also the never checked my complement levels of which my C3 has been borderline twice!
    By the by, since this is more for my own benefit, I originally approached my GP to get these tests done privately- out my own, dust filled, pocket.

    If you go to MEDICHECKS, they do tests in the UK.
    They do a CFS test that includes HHV-6, but only tests for presence i.e. they DON'T tell you antibody levels. You can get all the stuff tested individually as well though.

    Anyhoo, supposed to see them again about Valtrex, which as people have stated here and according to Dr Lerner's work, only works on those without CMV and HHV-6, i.e. single EBV cases only. If your considering that as an option I'd ask your GP about testing for those three.
  20. CountDuckula

    CountDuckula New Member

    Thank you very much Itstooealryinthemorn, I'll write this down and after christmas I will ask my doc if I can be tested for them.

    What should I say to him exactly? You guys seem to know much more about this than I do. I just say I want to be tested for CMV, HHV-6 and EBV? Tested for the presence of anti-bodies or what? Are these all the viruses that people get tested for or are there more?