Consent form needed for Fumaderm

[phil]

Went to Guys hospital yesterday and asked them for an update on Fumaderm.
Because of the slim chance off getting the Jc virus,which is untreatable,
they have stopped prescribing Fumaderm to any new patients
for the few that are still on them if there lymphocyte drops to 0.7
or lower ( like me ) they are taken off them for good. the ones that have normal
lymphocyte counts are now told if they want to stay on them they have to sign a consent form.
this only applies to Guys hospital.

Phil

[Fred]

Thank you for the information Phil I'm sure this will be very helpful.

[jiml]

That's very interesting I will have to have a word with my dermatologist, but first I will do some research and find out how many on fumaderm have contracted the virus
Thanks Phil I wonder what that means for the future of DMF drugs for other conditions

[Caroline]

That's very interesting I will have to have a word with my dermatologist, but first I will do some research and find out how many on fumaderm have contracted the virus
Thanks Phil I wonder what that means for the future of DMF drugs for other conditions

That is easy Jim.
There are two, no three, known and recorded cases of getting PML with the use of DMF.
So they are very occasional. It is not realistic to have too much fear for it.

On the contrary there are hundreds of cases of PML recorded with the use of MTX.

There is the risk that an excellent medication will be dumped because of fear for three occasional cases where in all cases the protocol was not well followed.

[phil]

That's very interesting I will have to have a word with my dermatologist, but first I will do some research and find out how many on fumaderm have contracted the virus
Thanks Phil I wonder what that means for the future of DMF drugs for other conditions

Jim
it might only be one person but they told me they
dont want to put any of their patients at risk.
but i say again this is Guys hospital
you Dermatologist may have a different view.
as for the future who knows.

Phil

[jiml]

That's very interesting I will have to have a word with my dermatologist, but first I will do some research and find out how many on fumaderm have contracted the virus
Thanks Phil I wonder what that means for the future of DMF drugs for other conditions

Jim
it might only be one person but they told me they
dont want to put any of their patients at risk.
but i say again this is Guys hospital
you Dermatologist may have a different view.
as for the future who knows.

Phil

I have just done some reading and Fred gave me a document to read plus I have read an account of the warnings in America regarding tecfidera use for MS patients.
And as Caroline says they are not telling us anything that wasn't already known and the incidence of getting PML after contracting the JC virus are slim if monitored properly and white blood count stays relatively normal and I would far rather take the risk with Fumaderm than the far greater risk from methotrexate..
The few cases there have been with Psorinovo, Fumaderm, and tecfidera can generally be put down to lack of proper procedure and monitoring.

Yes Guys hospital may just be watching their backs, I will gladly sign a consent form if required but it is a shame as it is such a good drug, that prescribing it in the UK may be curtailed,and there are far worse ones being prescribed some causing depression and suicidal tendencies
Thanks for the information.

[Caroline]

That's very interesting I will have to have a word with my dermatologist, but first I will do some research and find out how many on fumaderm have contracted the virus
Thanks Phil I wonder what that means for the future of DMF drugs for other conditions

Jim
it might only be one person but they told me they
dont want to put any of their patients at risk.
but i say again this is Guys hospital
you Dermatologist may have a different view.
as for the future who knows.

Phil

I have just done some reading and Fred gave me a document to read plus I have read an account of the warnings in America regarding tecfidera use for MS patients.
And as Caroline says they are not telling us anything that wasn't already known and the incidence of getting PML after contracting the JC virus are slim if monitored properly and white blood count stays relatively normal and I would far rather take the risk with Fumaderm than the far greater risk from methotrexate..
The few cases there have been with Psorinovo, Fumaderm, and tecfidera can generally be put down to lack of proper procedure and monitoring.

Yes Guys hospital may just be watching their backs, I will gladly sign a consent form if required but it is a shame as it is such a good drug, that prescribing it in the UK may be curtailed,and there are far worse ones being prescribed some causing depression and suicidal tendencies
Thanks for the information.

Agreed with you Jim. You have summarized it very well.