Re: Rituxan (rituximab) experiences

[Guest guest]

Why not send a short email to one of the pioneers of the therapy, Jo ?

Correspondence to: J. C. W. . E-mail: jo.edwards@...

http://www.ucl.ac.uk/~regfjxe/JoE.htm

http://rheumatology.oxfordjournals.org/cgi/content/full/46/4/626

http://rheumatology.oxfordjournals.org/cgi/content/full/kem164v1

http://rheumatology.oxfordjournals.org/cgi/content/full/46/1/29

http://rheumatology.oxfordjournals.org/cgi/content/full/44/2/151

Not an MD

On Tue, Aug 26, 2008 at 12:10 PM, Petheram

<chris65peth@...> wrote:

> Hello everyone in this great group,

> Hope your recent days have been good and kind...

>

> This is just an update request posted on behalf of my friend with

> active,resistant rheumatoid,and other medical conditions (chiefly

> pre-existing lung problems from childhood,(bronchiectasis, asthma) for any

> experiences with Rituxan ,good and bad, as she approaches making a decision

> whether to go for this.

> I have seen first hand very encouraging results with this drug in a

> different field (haematology/oncology; (I am a retired doc in this field)

> but am only too aware the scenario is very different here. Could not begin

> to weigh up the risk /benefits here and definitely must not advise... It

> must be my friend's informed decision, with her medic's imput. But they

> don't have much experience of similar cases to hers with other pathologies.

> The decision boils down to:

> If you are in the 1 per cent or less, certain complications could be

> devastating.. yet her present quality of life is so poor and changed at 60

> when she was previously fit and active.

> Your imput would be appreciated.Thank you.

> Chris

> UK,for friend without computer

[Guest guest]

Thanks ,

for that good suggestion.

With my friend's permission I might try this, but I'm sure she will want to

tread very carefully because of medical  'etiquette' !! here in UK.  I am

naturally sensitive to this too, but I suppose it would be anonomised.Oh dear.

We are not so used to this approach  in the UK although it makes good sense.

Her rheum and resp doc, though both very nice, seem to feel an opinion 'out of

region' would not be funded on NHS by our local trust. The rheum doc has said if

she could pay to be seen privately, she could be referred to a specialist in a

neighbouring county, but he has no specific resp expertise and the

ridiculous double wammy is if seen privately he would not have access to all her

notes/tests/ Xrays.The funding of the rituxan locally is not in doubt though, if

it is to proceed.

In the oncology field I know she could have been referred easily for one -off

advice in London, or other specialist centre because of the complexities of her

multiple pathologies.

I could myself very easily write a clear convincing letter on her behalf and I

am sure the Trust would accept, if I were the doc/(s) concerned!! It is just so

very frustrating, and I feel bad that this system,which I was proud to be part

of, is letting her and others down. Sorry for the 'whine'.

UK

> Hello everyone in this great group,

> Hope your recent days have been good and kind...

>

> This is just an update request posted on behalf of my friend with

> active,resistant rheumatoid,and other medical conditions (chiefly

> pre-existing lung problems from childhood,(bronchie ctasis, asthma) for any

> experiences with Rituxan ,good and bad, as she approaches making a decision

> whether to go for this.

> I have seen first hand very encouraging results with this drug in a

> different field (haematology/ oncology; (I am a retired doc in this field)

> but am only too aware the scenario is very different here. Could not begin

> to weigh up the risk /benefits here and definitely must not advise... It

> must be my friend's informed decision, with her medic's imput. But they

> don't have much experience of similar cases to hers with other pathologies.

> The decision boils down to:

> If you are in the 1 per cent or less, certain complications could be

> devastating. . yet her present quality of life is so poor and changed at 60

> when she was previously fit and active.

> Your imput would be appreciated. Thank you.

> Chris

> UK,for friend without computer

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