Dr Seo interviewed regarding Rituximab therapy

[Palmyra]

This article was posted in my google alerts this morning, and thought the group might find it of interest:


http://www.medconnect.com.au/tabid/8...V/Default.aspx

[pberggren1]

Thanks Jane.

[Daggar]

I received a luke warm response from the medical team when I asked about the possible use of rtx as a treatment for Holly.

Their explanation was the lack of long-term data and the hesitancy to use it in children at the time based on that.

This article indicates renal involvement as an additional concern... anyone being treated with rtx that has had renal involvement?

[ArlaMo]

I have renal involvement and just finished my 2nd infusion of rtx two weeks ago. I was on ctx for almost a year before trying the rtx. I just did my first labs post-infusion this morning, so I'm anxious to see the results. I visited Dr. Langford at CC in January and she was the one that recommended going in this direction.

[Daggar]

I have renal involvement and just finished my 2nd infusion of rtx two weeks ago. I was on ctx for almost a year before trying the rtx. I just did my first labs post-infusion this morning, so I'm anxious to see the results.....

Let us know how it goes.... we're keeping our fingers crossed!!

It sure would be nice to have another option if there are flare-ups....

[Sangye]

Good article. Dr Seo has expressed to me many times that he is very cautious about using rtx in younger people because the long-term risks are not known. I'm 47 and he considers me "young." He says he still prefers to use the traditional ctx first since those risks are very well-known and the drug is easy to control. He's even cautioned me against being a "cheerleader" for rtx in our group. LOL

Daggar, the article said people with renal failure were ineligible for the study, not just renal involvement. They also didn't include those with lung failure. I don't know why that is; I suppose organ failure is another level of severity and it could pollute the study if they included them.

[Palmyra]

So Sangye,
I consider my daughter one of those that could have 'polluted' the study group. She was very young when diagnosed with WG (20 yrs), and had lung involvement (not failure), with Crohn's disease preceding by 4+ years. I now suspect that she had upper respiratory, including ear and sinus involvement as well, and also suspect the Wegener's was initiated by long term disturbance with her immune system by TNF~a blockers (remicade and humira RX's) that were used to treat her pre-existing and very refractory Crohn's disease. And you know what, on reflection, there really were not any better solutions to treating her Crohn's prior to that. The biologic drugs really were the best choice for treatment, and she has an intact colon to thank for those drugs. Yes, tempting to be angry about the vasculits, but......?

Cytoxin has its known side effects. She has proven to be refractory despite base line drugs. We don't know what Rituxan will result ten years from now, do we? And for someone her age at onset, how to weigh benefit vs gain? Blaaaa, blaaa, blaaaa..... it seems there is no end, as autoimmune disease is so very complex. I have heard it equated with astrophysics in the medical world. These immune scholars are at the top of the food chain as far as medical scholars are concerned. We need to listen wisely, learn more and encourage thier knowledge :-)

Here's to Vasculitis Awareness month of May. I plan to carry a small banner to that effect for a hike in July (yes, I am always late, but the banner will be posted none the less!)

[Sangye]

I should have noted that the term "pollute" is commonly used in evaluating research. I hope it didn't offend you, Palmyra!

I can't use ctx again, either. I was refractory to it twice and it caused bone marrow toxicity both times. Also, the Wegs dog so enjoys living at my house that Dr Seo is now going to have me repeating rtx every 6 months with no end in sight. For me as with Allison, there is no other option. We have to accept the risks and unknowns just to stay alive. It must be very difficult for our docs to be forced into using drugs that they're not certain about. I always make sure Dr Seo knows that it's my choice to take these drugs and he should never worry if something bad happens as a result.

[delorisdoe]

I had a doctor explain to me once that alot of drug tests are not done on young people as the rules and the costs are alot more for children to do these studies. He said that many drugs never get tested on children for this reason-the drug companies want to save money. This is true for most asthma medication.

[Sangye]

Yes, and there are also more ethical issues. Children cannot give informed consent, so it's questionable if it is ever ethical to test drugs on them unless it's a life or death situation. It must be an unbelievably difficult decision for parents to make.