Rhumab

Hi! Has anyone taken part in the trials of Rhumab? I did, for three years. What a difference! Now we're waiting for NICE to approve it but that seems to be a major hurdle. Since I finished the injections, 18 months ago, I've managed with Seretide 2x2, Ventolin 2x2 and the occasional pred course. While I was on the injections, I didn't even need these. There's hope, then.

[KateMoss]

Hello Brompton Fossil,

Can you elaborate on what Rhumab is please? what sort of qualities does it have that makes it a drug for treating asthma? Is in a steroid based drug, an anti inflamatory, anti Leukotriens, broncodilator???

thanks

Kate

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Kate, it's a monoclonal antibody: it's been tried in several contexts but this version knocks out the mast cells in the airways so they are less reactive to allergens. The difference was noticeable within a fortnight and after that it was like being cured. Unbelievable. The strongest recommendation of all is that after I gave up the trial, I was able to sustain improvement for a year. During months 13 to 18 after finishing the treatment I sort of reverted to my old pattern but not so severe, and I still have not been in an ambulance after 20 months without it. Nothing else in my life changed durnig this time so no other explanation offers itself. Absolutely no side-effects (they predicted itchy eyes or a runny nose but I didn't even have that). The same inhalers sat in my bedside draw for a year.

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RhuMAb-E25

RhuMAb-E25 is what Xolair (omalizumab) was called whilst it was initially being trialled - it's the same drug. It works by binding IgE in the body and preventing it binding to cells and releasing histamine and other nasty bronchospasm-inducing chemicals.

(The prefix rhuMAb- itself stands for recombinant humanized monoclonal antibody, and its used to initially name any monoclonal antibody type treatment - so rhuMAb-VEGF is now a drug called Avastin which is used to treat some cancers, and rhuMAb-HER2 is what we now call Herceptin)

As most people know, Xolair was licensed in this country in August 2005 but has still not been NICE approved - the last update they gave promised to make a decision by Feb 2008, very useful! However, as some people have said elsewhere on the board, it is possible to get it prescribed on a named patient basis by getting your consultant to apply to the PCT for funding. I know a few people who are in the process of doing this; most of them are people who spend weeks - months in hospital at a time and have HDU/ICU admissions etc so it's easy to argue that a small improvement would produce a great financial saving for the Trust!

I don't know anyone who's going through this process who isn't under a Tertiary referral centre - Heartlands in particular seem very keen on trying to get people on it at the moment.

I'm hoping to try this drug in the near future and having read such a positive result I'm even more keen now, so I'll be hassling my consultant to see where he's at in the process! Obviously it's not going to be a wonder drug for everyone but it's nice to hear that it is for some!

Take care everyone

Emily H (lurker and now occasional poster!)

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hi

i am starting the drug in the next month, my con applied for the funding and they agreed, i know one person on it and it is working slowly so hopefully it will be given to all those allergic asthma sufferers, I must admit it has took a long time to be approved and for me to get funding.Ill let you know the outcome

[KateMoss]

Thanks for the info Emily & Bro'fossil!

Sounds interesting. I have brittle asthma but have a low IgE so isn't suitable for me. (Did ask!)

Nice to have the technical stuff. Did about monoclonal antibodies in A level Biology just as they were emerging in the science world!

Kate

XXX

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Thanks to everyone for so much information. My GP had offered to try to get it for me, but now I'm so well that I doubt he could justify the cost. I only see him occasionally - and that's after a lifetime of treatment. I would encourage anyone to ask about it. Kate knows a lot more about IgE than I do so maybe asthmatics should ask about their IgE level before going any further.

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Kate, I have a friend with brittle asthma whose consultant is trying to get funding for her to have Xolair despite her IgE being very low (0.2 or something)

Apparently the reasoning is that even if the blood IgE level is low, the level in the lungs can still be high.

I'm guessing its going to be that bit more difficult to get funding approved if you're outside the group that it's supposed to work for though!

Emily H