Any Ritixumab successes?

[margaret]

Margaret, I'm sorry your brother is still in such bad shape. Those are serious complications. Wegs is a horrible, horrible disease. I usually just use one "horrible" but reading that news today justified an extra. I hope he turns the corner soon.

Thanks Sangye... he's getting a chest tube today for the bum lung, and the antibiotics have already started kicking in for the infection, so he's already feeling better. Hopefully he'll be able to go home soon...

[Sangye]

I've heard chest tubes are incredibly painful. I hope it goes quickly and easily for him. Glad to hear the antibiotics are on it!

[Jack]

My daughter had them on several occasions when she had collapsed lungs and the general surgeon who did the first one messed up and put it in the wrong place! It was not until she came under the care of the Pulmonary specialists that she was sorted out properly. Another lesson in only trusting specialists.

[margaret]

I've heard chest tubes are incredibly painful. I hope it goes quickly and easily for him. Glad to hear the antibiotics are on it!

I guess the procedure itself wasn't terrible - more "creepy" than anything since his face was covered and he knew they were poking a hole between his ribs. He said the pain came afterwards and he can't move his left arm yet... but he's texting me, so thats always a good sign.

[margaret]

My daughter had them on several occasions when she had collapsed lungs and the general surgeon who did the first one messed up and put it in the wrong place! It was not until she came under the care of the Pulmonary specialists that she was sorted out properly. Another lesson in only trusting specialists.

Yikes! I guess this is our advantage in that our mother is a doc... she was able to get a pulmonary surgeon to come in on a Sunday to get this done... I hope your daughter is okay now.

[Jack]

Thanks.
She still has a few twinges and worries that something dreadful is going to happen again, but she should be fine now. It was all quite an ordeal for her and she had to abandon her first year at college, but she has now taken it again and has done very well in her exams.

[Doug]

Jack- Nothing to add. I just realized I haven't crossed paths with you for awhile! I think you need to straighten out Sangye and me on the matter of Tooting. (I thought I was in control, but I succombed to evil influences.)

More seriously, it's great to hear your daughter's doing well in terms of health and school. Health and education: you never can have too much of either!

[Martin Thomas]

Hi everyone,

I am a major success story for Rituximab and highly recommend pursuing this treatment to any WG sufferers. < snip > I give Rituximab my absolute highest recommendation and urge all WG sufferers to pursue it.

Great description of how the drug works and great news. Hopefully I'm not too far away from remission after my exposure to this drug. I sincerely hope this medication receives proper recognition here in the UK and becomes a Gold Standard (it can only currently be prescribed after all other drugs have 'failed' as it's not licenced specifically for WG).

Best wishes


Martin
Cumbria
UK

[Jack]

Jack- Nothing to add. I just realized I haven't crossed paths with you for awhile!

I've been away to the coast for a few days, but unfortunately it did not turn out too well as I have been feeling unwell. Nothing new, just all the old stuff hurting and no energy at all. I'm just waiting for things to improve. They usually do.

[Sangye]

Jack, I've been wondering about you as well. I figured you might be gone for a little vacation. I'm sorry it left you in bad shape. I wish that Wegs would realize it is NOT invited on trips!

Martin, I think the same generally applies for ritux in the US as welll--only gets authorized after cyclo has failed. That's not 100% of course, because it's up to individual insurance companies. But that's what I've heard most often.