my sister

[JanW]

That's an interesting comment about cytx, onatreetop. When I said that my rheumo said the same thing about it, Sangye said that was a red flag. Sangye I know that you go to JHU as well -- has this been a recent change, do you know? Not trying to needle you ;-), but I was assuming that they used cytx even without renal involvement at JHU because it seemed unusual to you that my rheumy would even make that comment. Maybe cytx is somewhat "going by the wayside" in less global cases of Weggies because of its high toxicity and unpleasant side effects even though it still seems to be the starter drug for lots of people on here not being treated at major centers?

Another thing on the drug front -- my insurer (Cigna) confirmed that I don't have to fail on any other drugs to get rituxan (not that I need it right now, but perhaps I might in the future). It just has to be precertified through the physician. Maybe this is another positive change coming for us Weggies. Wouldn't it be nice if we could get the best treatment to control the disease with the least amount of toxicity?

[Sangye]

It's not as straight-forward as that, unfortunately. They try not to use ctx when other options are there, but there aren't any hard and fast rules like "No kidney involvement= No ctx" (No rules for the other meds, either) It would sure make it easier for non-Wegs docs to treat properly if that were the case.

I have never had kidney involvement. Last summer when my lungs started hemorrhaging again, my Wegs doc at JHU put me on ctx. We only switched to rtx because the ctx failed again.

There are many other variables involved that your doc may not explain unless you delve into it with him/her. Impossible to do in the first few visits, usually. I've been seeing my doc for over a year and I'm just getting around to asking him some of this stuff. One of the variables is this: They know ctx is highly toxic and can only be given a limited number of times in one lifetime. They also know rtx is very new to Wegs treatment and don't have years and years of data concerning the long-term efficacy OR safety in Weggies. The age of the patient-- and therefore how many years of Wegs treatment and damage may lay ahead-- is often the deciding factor. My doc told me that because I'm only 46 and have had refractory Wegs since dx, he would feel uncomfortable giving me tons of rtx. I don't know if I'm explaining this well.

[onatreetop]

Thanks.Just got my explorer out from being stuck again Husband tried to get out to the store and didnt make it out of the driveway. It is a giant slush pit out right now. Just switched back to snow again. I am better than last night sleeping proped up was hard ended up on the couch with lots of pillows and waking with dry mouth bad. Nose is packed. Sleep was bad but if thats the worst of it now thats not so bad. We are hoping the snoring will be helped by this too!!! I asked when my husband would go in? He said never! Nice right!!

I am relieved for Lila and her sister now too. The trip is a big one but so worth it!!! Congrads!

[Jack]

onatreetop - do you flush your nose with saline to clear it? You may have mentioned this before, but I can't remember. If not, please give it a try, everyone swears by it and it certainly worked for me.
See - Sinus irrigation bottle - do you know about it?

[JanW]

I use the Neilmed nose wash -- the saline stuff (I used the brand name Saltaire) was much, much too strong for me. It was the saline, not the water that was burning like crazy. It seems liked the water flush alone cleared everything well.

What is 'refractory' Wegs, Sangye?

[elephant]

I use the Neilmed nose bottle wash twice a day. Sometimes I only do once a day. It helps, and it keep things clean. No need for nose picking.

[Sangye]

Jan, refractory means "unresponsive to treatment." I've never been in remission-- not even close-- in 3.5 yrs post-dx. Some of the research on rtx has been specifically aimed at people with refractory Wegs.

Rtx has been shown to work better in refractory Wegs vs non-refractory Wegs in at least one study. (I don't remember the others) This makes me think that perhaps refractory Wegs is toxin-based. Ctx is a major toxin, but rtx isn't. So giving ctx would make an already toxin-overloaded person even sicker. I do believe the Wegs I have was caused by toxins. I lack any of the other common associations (infection, heredity, etc...) but have a strong history of exposure to toxins.

[JanW]

Very interesting, Sangye. Do you doctors have any stats on what percentage of cases are refractory? Reading on the internet seems to suggest that as many as 50 percent of Weggies go into remission entirely and never flare again after the first flare, but on this board it doesn't seem as though I am seeing any (although admittedly the bias is towards the newly diagnosed and perhaps some of those for whom Wegs has affected multiple systems)...I haven't seen the term refractory before, although my rheumy made very clear that remission is not a "given" outcome in any case.

[elephant]

My thought is that it depends on what is the definition of" Remission" ....Is it defined by the doctor that is treating you? I think many Weg are on some kind of medicine to keep them from flaring for the rest of thier life.
The chart the Sangye and Lightwarrior made " list of symptoms" helps but ...I don't have any zero's or is this the "New Normal?" I think I'm developing a twitch in the left eye. wink wink..

[Sangye]

There are 2 types of remission: drug-maintained or drug-free.

Remission doesn't necessarily mean "symptom-free." It just means the symptoms are not active Wegs.

Some people do achieve drug-free and symptom-free remission. I can only think of one in our group--Mike Caven, who was in total remission for about 27 yrs and was completely fine. Maybe there are others, but his is the most extreme case I've ever heard.

I've never asked my doc about stats for refractory Wegs. I'm not sure I want to know.

The stats on the JHU website are:
90% of patients with severe disease respond to treatment
75% are able to achieve disease remissions
50% of those who achieve remission will relapse

Which means
10% die or remain refractory
25% never go into remission or die
50% who achieve remission never relapse