[Raglet]

I guess some of us are desperate enough to risk the very small death risk with rituxan from PMD. With lupus nibbling away at my brainstem (which controls all internal organs, breathing etc) then I'm happy to take my chances !

Personally I think the allergic reaction I have to rituxan is much more of a problem (severe bronchospasm), and my memory of the PMD issue is that the risk is very small.

But, if I had the chose of one drug that had NO risk of it (and time will tell with the new drug) then of course I would choose the safer one.

Anyway, best of luck for the trial, hope it helps

Raglet

 

[Raglet]

hi there

I am likely just feeling very touchy because of all the pred I am on, do don't take any notice of me ! In your shoes I'd be trying the new drug too.

With my rituxan sparks severe asthma attacks which continue for the duration of the treatment.

The first treatment they had to abandon altogether, the second treatment they managed to drip into me very slowly over several days, but the bronchospasm (wheezing/asthma) was terrible. I was on nebulizers the whole time, plus large doses of iv steroids (1000mg a time). Each time I had the treatments it took months for the bronchospasm to settle down, and the second time they did the treatment in the icu as my reaction was so severe. Rituxan really helps me, but I am extremely allergic to it. But then again, i am allergic to mice, which is why I have this problem (the anitbody is half mouse). I look forward to the fully humanised version being available to me, then hopefully I won't have this reaction.

As far as the PMD thing goes - I have a memory of it being said after the alert coming out that there was an increased rate of PMD overall in people with lupus, whether or not they have had rituxan, but this is just memory so I could be wrong. Either way, the risk is pretty low I think and in my case I don't have much choice.

hope the new drug helps you

raglet

 

[Raglet]

hi Fran

sorry I missed your post. Rituxan never stopped some of my symptoms (balance continued to deteriorate), but it has helped other parts of my lupus.

I'm definitely no expert on this, but I don't think it would be a blood brain barrier issue as rituxan just works by depleting b cells which are involved in the manufacture of antibodies rather than targeting the brain. So improvement should be a by product of lowering antibodies.

But, my antibody levels never did drop - though parts of my lupus progression did slow down, particularly problems with my tongue, swallowing etc. All those problems have started deteriorating again. Rituxan never actually improved anything for me, my neuro damage is pretty much always permanent, it but I do think it slowed the progression rate.

feel better soon, and sorry i took so long to reply

raglet