Rituximab Round Two

[Sangye]

I thought of some more things Dr Seo said yesterday. (I don't know why this program underlines his name every time).

1) Studies of other drugs that are as powerful as ctx and rtx have not panned out. We won't have any other options in the foreseeable future. Basically, we have to make ctx or rtx work. We didn't discuss the less powerful drugs used in milder cases or to maintain remission (imuran, mtx, Cellcept). I think there might be research in the works for alternatives to them, but even if there isn't we still have those 3 choices.

2) I asked if rtx stays circulating in the blood for months or if it stays bound to the receptors on B cells. Neither! He said it goes in, binds to B cells, destroys them and then is removed by normal processes (pee, poop, sweat). I finished the last infusion a week ago and he said any rtx in me was "long gone."

This might not matter to most of you, but it helps me tremendously. There is at least one Ayurvedic herbal remedy that helps cleanse the blood of toxins and "fire" excess. It really helped me in the past way back when I was on CC. I think it was one reason why I didn't flare sooner. Anyway, I didn't take it once I began ctx last July-- not safe-- and I was afraid to take it since starting rtx last October. (I didn't know if it would flush the rtx out of me.) I hesitate to bring this up because I know some of you are going to ask what it is and how much to take, etc.... I know a bit about Ayurveda, but I would never have taken this without seeing a highly-skilled Ayurvedic practitioner who advised me. She also made sure the other drugs I was on were okay with it. If it interests you, find an Ayurvedic practitioner in your area (or travel to one--they can help tremendously) and we can talk about it.

If you want more info on what to look for in such a practitioner, let me know. Maybe I'll start a thread on how to what to look for in different types of holistic providers.

3) I asked him to please-- for the love of all that is good in the world-- update the JHU Vasculitis Center website. He said they want to but don't have the funding to pay someone to do it. *sigh* It's upsetting that, due to the rarity of vasculitides, we can't even get enough money to disseminate current info at a major center!

[pberggren1]

Thanks for the info about ctx and rtx.

I would be very interested in this herbal remedy and Ayurvedic practitioners.

REALLY - how much would it really cost to update the site?

[JanW]

Sangye - do you have any sense of what percentage of WG cases are resistant/become resistant to treatment? I have assumed that the vast majority of 'serious' cases can be treated either with ctx or rtx.

[pberggren1]

I forgot to ask:

Are we not to pretty much stay away from herbal remedies and holistic practitioners?

[Sangye]

I forgot to tell you guys what happened as I was leaving for my two JHU appointments yesterday.

I had 2 appts-- one with my therapist at 11:00 and the other with Dr Seo at 2:00. I knew this. If you asked me what time my appts were I would have told you the correct times. But somehow I had it in my head that I had to LEAVE at 11:00. All morning I mentally reviewed the time I'd have to be in the shower by, feed the dogs by, etc... to be able to leave by 11:00. I also mentally reviewed the appt schedule-- first one at 11:00, next at 2:00. (I have to do all this mental reviewing because I'm so worn out and mentally foggy)

The thing is, those two trains of thought NEVER crossed.

So at 11:00 I looked at my clock and was ready to walk out the door. I reviewed again-- first appt at....11:00!!!! It hit me like a brick. I burst into tears (never far from those lately) and called my therapist. There he was, wondering why I was sitting across from him-- 1.5 hrs away! Seeing how much I needed that appt with him, he rearranged his schedule to see me at 1:00. Thank goodness. I was a mess.

I've never done anything like that-- not even when I was so much weaker. It really is proof to me of how utterly exhausted (mentally and physically) I am. Today is going to be one of those "Sleep for many hours in the middle of the day" days. Every so often I have to do that to restore a bit.

[pberggren1]

Oh Sangye!!

Don't be too hard on yourself. I'm glad that you were still able to see him the same day. I hope you are not too stressed out.

I noticed too that it underlines SEO'S name.

[Sangye]

Sangye - do you have any sense of what percentage of WG cases are resistant/become resistant to treatment? I have assumed that the vast majority of 'serious' cases can be treated either with ctx or rtx.

Jan, I don't know any statistics on it. I do know that a fair amount of people can't take ctx because:
1) they don't tolerate it (suppresses bone marrow)
2) it doesn't work to control the Wegs
3) they've reached their lifetime limit
4) they have kidney or bladder issues that make it unsafe

Up til now, if someone couldn't take ctx they were up a creek.

Rtx works particularly well for refractory (unresponsive) Wegs. There's always the chance of developing an allergy to it that can't be controlled by high-dose pred or benadryl given during the infusion. Dr Seo has only one Weggie who can't take ctx again and has become allergic to rtx. I don't know what they're doing for him. I don't think there's much anyone can do. Dr Seo emphaisized that he has a few HUNDRED patients on rtx and this has only happened to one.

[Sangye]

I forgot to ask:

Are we not to pretty much stay away from herbal remedies and holistic practitioners?

It's not safe to take any herbal remedies without a holistic physician or skilled Ayurvedic practitioner (some are physicians, some aren't) guiding you.

Nothing wrong with either (herbs or holistic) as long as they don't try to treat Wegs or substitute holistic for drugs. I've commented on this several times-- search for holistic and you'll find it.

[pberggren1]

Thanks again Sangye for the info on ctx and rtx and the info on Ayervedic practitioners.

[Jack]

he rearranged his schedule to see me at 1:00. Thank goodness. I was a mess.

I've never done anything like that-- not even when I was so much weaker.

I had a strange thing happen a few weeks ago. I had rearranged a couple of appointments due to the very bad weather we had been having. As luck would have it, I got new appointments made for the same day within an hour of each other. Ideal! However, I did not get any confirmation letters and when I turned up, the clinics were closed and they had no record of me.

What the hell went on there I just don't know. Perhaps I made it all up?