Positive nasal biopsy

[rebekah]

I'm glad to hear you are already feeling a little better. I hope you won't need Rituxan, but it's good to know it'll probably be covered if you do need it. Enjoy the steak dinner and I hope you start to feel even better soon.

[gilders]

I'm glad to hear you are already feeling a little better. I hope you won't need Rituxan, but it's good to know it'll probably be covered if you do need it. Enjoy the steak dinner and I hope you start to feel even better soon.

Thank you. To be honest it's more that I'm feeling better mentally rather than physically, but I'm sure that will come soon enough!

[Wegetarian]

Some good news and something that I've been stressing about is that he now thinks he will be able to get funding for RTX. This is especially important for me as I can not have cyclophosphamide. Therefore if the pred and aza don't kick butt I'll be on RTX for the first time.

Looks like the NHS is more positive towards RTX:
Article > Roche's MabThera now favoured by NICE in vasculitis

[gilders]

Looks like the NHS is more positive towards RTX:
Article > Roche's MabThera now favoured by NICE in vasculitis

Thanks for this Wegetarian.
Did you read the full article? The following excerpt concerns me,

"After considering new information submitted, NICE has now concluded that MabThera is indeed a cost-effective use of NHS resources for people with severe ANCA-associated vasculitis who can have cyclophosphamide, but only if further treatment with cyclophosphamide would exceed the maximum cumulative dose, after calculating the cost to be around £12,100 per QALY in this scenario.

However, its independent Appraisal Committee decided that there was insufficient evidence to determine whether the drug is value for money when used in patients unable to receive cyclophosphamide."

This is worrying for me. It looks like like they will authorise RTX so long as cyclophoshamide exceeds the cumulative dose. I can not have cyclophosphamide due to sever reaction to it.

This seems very odd to me. RTX is expensive so surely if they can only use it sparingly then it should go to people who can not receive cyclophosphamide (like me) rather than people who can tolerate cyclo. Or am I just being biased??

Thanks again,but I'm not too sure sure if this is positive news for me?

[Wegetarian]

Yeah, I read it. Their conclusions did seem to defy logic.

I would assume its good news for you as it:
1. shows that the NHS realises that the positive effects of the medicine outweighs its high costs so should be easier for you to get permission for RTX
2. the reason they were unsure about its use for people who can't take CYC was due to insufficient evidence which may well mean there is little research about it (not that it wouldn't be suitable for some reason, I mean we don't know why they couldn't take CYC in the first place and there might be many reasons of which some also prevent RTX use - just a guess though)

[gilders]

Yeah, I read it. Their conclusions did seem to defy logic.

I would assume its good news for you as it:
1. shows that the NHS realises that the positive effects of the medicine outweighs its high costs so should be easier for you to get permission for RTX
2. the reason they were unsure about its use for people who can't take CYC was due to insufficient evidence which may well mean there is little research about it (not that it wouldn't be suitable for some reason, I mean we don't know why they couldn't take CYC in the first place and there might be many reasons of which some also prevent RTX use - just a guess though)

It all comes down to cost is the way I read it. CYC is a much less expensive so they're willing to pay for that and a couple of dose of RTX. But a full course of RTX without the CYC is too expensive. It's certainly more positive news for me than a complete no funding allowed for ANY WG treatment.

Hopefully the high dose pred and AZA I'm on will work well enough that I don't need to worry about RTX, I'm sure in the future when there's more evidence that RTX is working well (and hopefully the cost of RTX comes down) I'll have easy access to it!

It's only day 3 of treatment, but I've noticed a BIG increase in appetite and my heart rate. My virus isn't settling down, but the immuno-suppressants haven't allowed the virus to get any worse.
The nose bleeds are already a little less frequent. I've not noticed some of the "highs" and "happy" feelings that others seem to get with an initial high pred dose, maybe I'm just a miserable bugger

[annekat]

gilders, I'm glad things are at least looking more positive overall. Every case is different, and since you can't take CTX due to a severe reaction, the cumulative dose issue seems irrelevant. They should be able to approve RTX for you under those circumstances. Like others here, I hope you don't need it and that the current treatment gets you out of the woods. I'm glad the virus is not getting worse!

[rebekah]

Happy to hear things are improving some for you and you are having fewer nosebleeds. That's a step in the right direction. I hope you don't need the Rituxan and the virus doesn't get worse... Get some rest and I hope you feel even better soon!

[Wegetarian]

Hey Gliders, how are you feeling? Haven't heard from you in a few days and wanted to know everything is OK.

(Even tried stalking you through your profile to see if you posted updates in some other thread )

[Alysia]

Hey Gliders, how are you feeling? Haven't heard from you in a few days and wanted to know everything is OK.

(Even tried stalking you through your profile to see if you posted updates in some other thread )

I was also worried about him. I sent him PM yesterday and he replied. he will soon write here what he had been through.