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UK: NHS experiences of getting/being on Valcyte?

S

Sasha

Fine, thank you
Messages
17,863
Location
UK
A private blood test has just shown I've got massively elevated titres of HHV6 and I've approached my GP about giving me Valcyte. I assume it may involve referral to an immunololgist.

Anyone had experience of trying to get Valcyte on the NHS?

Are the NHS's immunologists willing to treat for high HHV6 titres?

Are they willing to treat for long enough?

Anything I need to know to be successful in getting treatment?

Am stunned to finally have an abnormal blood test! :thumbsup:
 
vli

vli

Senior Member
Messages
653
Location
CA
That's really "good news". The one person I cld think of that you cld try approaching on NHS is Amolak Bansal. He is an immunologist.
 
G

golden

Senior Member
Messages
1,831
That is good news! Everyone with M.E. will understand that :)

Could i ask what tests and where privately?

Good luck with ur treatment :)
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
vli said:
That's really "good news". The one person I cld think of that you cld try approaching on NHS is Amolak Bansal. He is an immunologist.
Click to expand...

Thanks, vli - why do you suggest Dr Bansal? I see he runs a specialist NHS CFS centre in Surrey (a long way from me) but that, although they're clear on their website that they believe CFS to be a genuine illness, they are explicit that they only offer the biopsychosocial model and CBT for management. There's no mention of HHV6 or other viral involvement or treatment.
 
Jenny

Jenny

Senior Member
Messages
1,388
Location
Dorset
Sasha said:
A private blood test has just shown I've got massively elevated titres of HHV6 and I've approached my GP about giving me Valcyte. I assume it may involve referral to an immunololgist.

Anyone had experience of trying to get Valcyte on the NHS?

Are the NHS's immunologists willing to treat for high HHV6 titres?

Are they willing to treat for long enough?

Anything I need to know to be successful in getting treatment?

Am stunned to finally have an abnormal blood test! :thumbsup:
Click to expand...

In my experience, whenever I've had a positive private blood test for something not usually tested for on the NHS, any doctor I show it to dismisses it, saying it's not reliable. So I suggest if you find someone to see on the NHS about the result, you need to be armed with evidence for the test's reliability, if you can get hold of it.

It might also be an idea to take journal articles with you that demonstrate that valcyte is effective treatment.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Jenny said:
In my experience, whenever I've had a positive private blood test for something not usually tested for on the NHS, any doctor I show it to dismisses it, saying it's not reliable. So I suggest if you find someone to see on the NHS about the result, you need to be armed with evidence for the test's reliability, if you can get hold of it.

It might also be an idea to take journal articles with you that demonstrate that valcyte is effective treatment.
Click to expand...

Thanks - I'm expecting them to at least want to retest me via their own labs, if they go for it. Have already heard from my GP saying he's not familiar with this on the NHS and wanting more info.

I've started another thread asking for info about trials - I don't know if there are any completed ones. I know Dr Montoya was involved in some but not if the results are out.
 
Jenny

Jenny

Senior Member
Messages
1,388
Location
Dorset
Sasha said:
Thanks - I'm expecting them to at least want to retest me via their own labs, if they go for it. Have already heard from my GP saying he's not familiar with this on the NHS and wanting more info.

I've started another thread asking for info about trials - I don't know if there are any completed ones. I know Dr Montoya was involved in some but not if the results are out.
Click to expand...

I've asked three different NHS consultants for a test for HHV6 - all said there was nothing available.
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
My own hhv positive tests were not taken seriously by the nhs docs I have seen. It was a private doc who first prescribed it for me. The nhs docs I saw did not accept that hhv6 caused any diseases or that I had any priblems from it.
A patients I know have been treated at the Breakspear and I have heard varying reports from Dr Murphy at the royal free.
Good luck!
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
ukxmrv said:
My own hhv positive tests were not taken seriously by the nhs docs I have seen. It was a private doc who first prescribed it for me. The nhs docs I saw did not accept that hhv6 caused any diseases or that I had any priblems from it.
A patients I know have been treated at the Breakspear and I have heard varying reports from Dr Murphy at the royal free.
Good luck!
Click to expand...

Thanks - I don't know much about the Breakspear.

This is my fear - that I'll manage to get my GP to refer me and then I'll be dismissed by the consultant and won't be able to get another referral because it will look like a waste of time.
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
I'd try my luck with Dr Murphy first and see if she would write a script. It would be a private one though. Don't know of anyone who has had a nhs one for Valtrex or Valctye yet. there seems to have been a tendancy to use another drug (acyclovir) first and some patients have not reacted so well. It had no good effect on me but Valtrex was good from the start.
Don't know about Dr Bansal though.
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
ukxmrv said:
I'd try my luck with Dr Murphy first and see if she would write a script. It would be a private one though. Don't know of anyone who has had a nhs one for Valtrex or Valctye yet. there seems to have been a tendancy to use another drug (acyclovir) first and some patients have not reacted so well. It had no good effect on me but Valtrex was good from the start.
Don't know about Dr Bansal though.
Click to expand...
Thanks, ukxmrv. I'm really looking for an NHS script & NHS monitoring, though, at this point. I think my GP would agree to treatment if we can find the right NHS consultant. If it's a private script I think I'll have to pay both for the drug and the monitoring. I understand it costs thousands.
 
Jenny

Jenny

Senior Member
Messages
1,388
Location
Dorset
ukxmrv said:
I'd try my luck with Dr Murphy first and see if she would write a script. It would be a private one though. Don't know of anyone who has had a nhs one for Valtrex or Valctye yet. there seems to have been a tendancy to use another drug (acyclovir) first and some patients have not reacted so well. It had no good effect on me but Valtrex was good from the start.
Don't know about Dr Bansal though.
Click to expand...

I was on valacyclovir (generic Valtrex) for 2 years on a NHS script. Stopped a few weeks ago as it was doing nothing.
 
vli

vli

Senior Member
Messages
653
Location
CA
When i saw bansal in 2007, he gave me valtrex (which like jenny did nothing for me).
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
This is another worry - that even if I get a referral and they agree to treat, they'll try to push a different drug onto me.

Argh!
 
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