Questions for Dr Seo

[JanW]

Sangye, can't remember whether you have osteo or not, but if so, can you ask him about the latest studies that show that docs need to do a whole work up on risk of fractures vs. just looking at the bone scan before prescribing biophosphonates? I'm planning on asking my doc next week (since I'm not on pred, and my osteo is really severe in my spine, which this research seems to indicate is better than it being in the hip), but thought maybe Dr. Seo could chime in.

[Sangye]

With regards to the Rtx, can you ask him that once in remission how would he decide on when to give it next to a patient. Does he wait until the patient starts to get sick again, perhaps bloodwork may show signs - what is he finding - is there a "common" indicator for the majority of his patients? The thing that troubles me is that we work so hard to come down to a low doseage of Pred, only then to wait until we get sick again and then with that we have to increase the Pred again!

The other question is like everyone else - Prednisone - does he know if anyone (research co) is out there trying to come up with a safer steroid drug or alternate?

Also, for a response to "beeinformed", to prevent further sensorineural hearing loss, you have to keep the WG in remission and as to which drug that is depends on which one is working for you to get you in remission. Unfortunately, I keep getting in my ears everytime I get a flare up, I'm one of those WG's that has it localized in certain areas in my head - cochlea's specifically! I don't think any of the immunosuppressants are ototoxic drugs - meaning they cause tinnitus in the ears, but there are drugs out there and anyone with hearing loss should be asking the pharmacist and/or prescribing dr. if it is.

As far as I know they repeat the rtx when B cells begin to repopulate and when the patient starts to develop symptoms or their labs start to show problems. There seems to be a lot of variability in all that.

I started getting symptoms of active Wegs 3 months before my B cells returned. We delayed repeating the rtx for as long as I could hold out. (I don't have any other drug alternatives and we are trying to space the rtx rounds as far apart as possible.) Mostly we are winging it. I'm pretty sure that if my B cells returned and I still felt great we wouldn't repeat the rtx. I don't think it's a given that all patients will repeat rtx no matter what.

One note about ototoxic drugs-- I got tinnitus with ctx. Dr Seo said it wasn't ototoxic, but my hematologist/oncologist said it could be. It stopped when I stopped ctx.

[Sangye]

JanW I don't have osteo so I'm not sure I can squeeze that question in!

[pberggren1]

I do know that Methotrexate is ototoxic.

[JanW]

No problem, Sangye, I see my doc next Tuesday anyway.

[Sangye]

Okay, I got a bunch of info from Dr Seo today. (I'll post an update about my own case on another thread) I'm going to post it in a couple chunks so it's easier to read.

1) ANCA and Rituximab: Interesting fact
In about 90% of Weggies the ANCA disappears after receiving rtx. So not only is it a generally useless indicator of active disease for most Weggies, but it's completely useless if you're getting rtx. I had no idea about this.

2) Is Cellcept is falling out of favor?
NO. The recent study showing it wasn't as good at maintaining remission was very flawed. Dr Seo felt the participants weren't given high enough doses and not for long enough. This says a lot--he hasn't been a huge fan of cellcept because of the expense.

3) Why do they put some people on mtx while they're on rtx, but others only get rtx?
Basically this is an outdated treatment. They thought rtx was not strong enough alone. This came from literature on treating RA with rtx; it seemed that mtx prolonged the effectiveness of rtx. However, the data doesn't substantiate this. Dr Seo said 2 years ago he would have done the same thing with patients. He said it isn't necessary but that it is "harmless" if anyone is on both rtx and mtx.

[Sangye]

4) Low-dose Naltrexon
Dr Seo said all the literature and a book are by the same guy, which is suspicious in itself. No one else has been able to replicate his results. The guy believes ALL autoimmune diseases can be treated equally well with LDN, which is also bizarre. Dr Seo said his main issue with the claims are that there is no mechanism of action by which LDN can affect Wegs (or other AI diseases). He did feel it was harmless, though. He was suspicious that the guy is making a lot of money trying to sell his miracle cure.

(From a holistic perspective I agree. There are MANY "miracle cures" out there for various illnesses that are touted by individuals who stand to make a lot of money. If a pharmaceutical company or MD did the same thing I'd criticize them, too. I also agree that there is no mechanism of action whereby LDN could work. I don't agree with"harmless." Maybe at a clinical level, but all drugs disrupt the body at some level.)

5) Causes of Wegs?
He said they still have no idea about a cause and no one seems to be getting closer to figuring it out.

Silica is strongly linked to Wegs, but is not 100% causal. That is, many Weggies have a history of silica exposure, but not all people who are exposed to silica develop Wegs. Only a very small percentage do. Also, there is no evidence that if someone does have silica-induced Wegs that further exposure will be harmful to them. He said "the cat is already out of the bag."

There is zero evidence that Wegs is genetic. There is also no evidence that Wegs is more likely to occur if there is a family history of AI diseases. Wegs occurs in AI-afflicted families at the same rate as in non AI-afflicted families.

[Sangye]

6) Other new drugs
The anti-TNF alpha drug(s) are not looking good. There isn't really anything new right now that is looking good. I didn't ask about how the current abatacept trial is going because I think it just started.

He mentioned another drug that sounded like okra-something. It applies to me, so I'll discuss it on my update thread.

That's all I can think of right now. Dr Seo is so good about taking time answer all my questions. He knows I gather info for our group and that we only want to share correct and updated info. He's a real data-hound and I respect when he says there's insufficient data or the data is wrong.

[elephant]

Thanks Sangye for sharing and helping all of us! Oh did Dr Seo mention how much cellcept is enough and how long a patient should take cellcept? Just wondering...

[Sangye]

He said they were on 2,000 mg and should have been on 3,000 mg. He said something about them cutting the treatment short in the study, but I didn't catch it.