Got Any Questions?

[Sangye]

I see Dr Seo tomorrow. Does anyone have anything they want me to ask him? (Other than "Is there a cure for Wegs yet?")

I'm going to ask how alternating pred dosages works (eg, 3mg one day, zero the next) and how someone would know if they can tolerate it.

Anything else?

[Fran]

Thank you Sangye for your kind offer. My Rheumy thinks it's perfectly alright for me to be on 10mg of methotrexate a week for eleven years and be in remission, but I am worried there might be long term effects. When I questioned it, he just pointed out it was keeping me in remission - stop worrying ! http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

I know it's trivial compared to what you and others are going through but I would love to know what your famous Doctor thinks of this and yes I do count my blessings every day ! http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Unless you or someone on here already knows the answer to this. Thank you.

Hope you get on alright tomorrow Sangye !http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Fran

[drz]

Are there any new drugs being tested that are promising for Wegs?

[ScreaminMeanie]

Have results from the NIH study on CTX vs RTX been published yet?

[Sangye]

Fran, I think I can answer your question now. JanW heard Dr Seo speak at the VF Symposium a few months ago where he said that every patient deserves a chance to live without the Wegs drugs. He's very conservative about these drugs and wants us off them whenever possible.

He's never been the kind of doctor who puts me on a drug "just in case." Early in 2009 I asked if we could increase the cellcept since I felt like it was a subtherapeutic dose. He wouldn't do it because he didn't see signs of active disease. And last summer when my lungs were hemorrhaging, most docs would have put me on huge doses of pred along with the ctx. He only wanted me on 20mg pred for one month while the ctx was kicking in. When I balked at that, he didn't get upset. I went on 5 mg and it was enough.

[Sangye]

drz and ScreaminMeanie, I wrote your questions down. I always ask about new drugs and research anyway.

At my visit in September, he mentioned another drug (long name and I don't remember it) that was taken off the table for Weggies. I don't know if the study was stopped or if it concluded the drug was unsafe or ineffective. He said they had high hopes for it and that it would be a long time before there was anything else coming down the pike to compete with ctx and rtx.

[JanW]

Fran -- I did hear Sangye's doctor say exactly what she reported that he said.

Having a doctor that wants to keep you on drugs for a lifetime is not uncommon with wegs. Nor is it an uncommon belief that the mtx (probably one of the mildest of the chemo drugs -- I take it as well), is 'keeping you in remission.' Researchers are coming around to the notion that people going into remission with these drugs and can remain in remission without them. As an example, my ENT will not repair a saddle nose (which I happen to have) without the patient being med free for six months. I was upset about this but he has also done a couple hundred of these surgeries, so all kinds of patients are having their docs take them off drugs without a flare up (this may also suggest something about saddle nose patients as well -- we do have a rare manifestation of these disease and sometimes don't have others).

A nephrologist from University of North Carolina compared lifetime maintenance on a CHEMO drug to taking cipro for the rest of your life to ward off a sinus infection. Would that be worth it to you? When you could just treat the sinus infection when it arises (especially if you hopped on it right away). Really?

Thirid, chemo drugs suppress your immune system and lower your resistance to all kinds of stuff that is bad for you, and lessens your ability to fight off the rogue cells that might be cancer someday. There are people who think that only ctx raises a weggies cancer risk. Not true.

We are not like RA patients in this -- many of them have to take mtx for years to keep the joint destruction and debilitating pain of RA away. My doc is planning on a reduction of my meds to eventually make me med free, starting in March (he just doesn't like to reduce meds in winter -- he says everyone feels worse when it's cold). I was dx in January and started a therapeutic dose of mtx in March. My ANCA and P3 are still positive (P3 actually high) but I have been completely asymptomatic since before the summer.

[elephant]

Sangye thanks for asking the question about prednisone. I am down to 5 1/2 mg of prednisone. I was wondering what his thoughts are one some of us with upper and lower respiratory involvement usually stay on a low dose of prednisone ( 5mg) for the rest of our lives or are they able to get off prednisone?

[Sangye]

Elephant, I asked him that a few months ago. He said people with sinus involvement have the hardest time getting below 5 or 10 mg pred-- harder than any other involvement. That doesn't mean it's impossible, of course. You go, girl.

[marta]

I have one.

Ask if he would be interested in contributing to our book??? I've talked to Dr. David Jayne from Addenbrooke's Hospital in England (Geoff hooked me up with him) and he said he would be interested in answering questions we have for him. I'll put that out there for everyone in a separate thread... (I just got back from the city for doctor's appointments and had a super busy week last week so I'm just getting back to even looking at the forum in quite a while.) But I think if we have a few specialists in the field talking about the disease (in laymens terms) to patients and perhaps even other doctors it would add quite a bit of value to the collection. He can decide, if he is indeed interested, how he'd like to proceed.

Just food for thought.

[pberggren1]

That's awesome Marta. You are truely the best. You always come up with such good ideas.

[elephant]

You are the best Marta, but remember also take good care of yourself first....I love all your ideas and your passion!

[Fran]

Sangye -

Thank you so much for the information in answer to my question about methotrexate. I just felt, even with my very limited knowledge of WG and medications, that eleven years is going it a bit !

Being of an older generation to most on here, I only became ' computerised ' this year when I received my laptop as a gift, and found this great place. Before, I never questioned my Rheumy too much and literally ' just kept taking the tablets ' but now................ :wink1:

Thanks again. Fran

[Fran]

Jan - Hi,

Wow, thank you so much for all that valuable information. That gives me lots of insights into why methotrexate should not be a long term medication without good reason; in particular the cancer aspect. Earlier on this year I had a bone cancer scare, which happily was ruled out by nuclear scan, and which, subsequently was found to be a parathyroid problem for which I'll be having an operation on 28 January BUT had it been cancer, who would have made any connection with long-term methotrexate medication !! I'm guessing no-one would have wanted to make that connection.

I hope all goes well with your coming off medication (in the Spring ? ) and your op' will be a complete success.http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Meanwhile, my Rheumy is going to wonder where this wised-up old great-grandmother (well perhaps not so old) has sprung from.http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Thanks again - Fran

[me2]

Maybe I'm too late, but here goes. Is there a point where being conservative in treatment results in a lesser chance at remission? How do we balance the goal of remission with the desire to be conservative in drug use?
( Uh oh, thats two questions.Oh well, Sangye is smart and can turn my bumblings into one question.)

[Sangye]

Okey dokey, I saw Dr Seo today and got some answers to your questions and mine. (I'll update how my appt went in another thread)

1. Are there any new drugs coming down the road?
Nothing to compete with ctx or rtx. For mild to moderate Wegs, abatacept is being studied and may have some potential. Dr Seo also mentioned IL-6 (interleukin 6), but I can't remember if he said it didn't look good. The reason I can't remember is that when he said "IL-6" I thought he said "Aisle 6" and I got the giggles. You know, like "Cleanup in Aisle 6." Sorry about that! :blushing:

2. Is IVIG being used for Wegs?
Not really. It's used when there are no other options (ie, can't take ctx or rtx) or for immunoglobulin-deficient patients. It's given over 5 consecutive, day-long infusions each month, so patients wind up in the hospital for 5 days every month. Its effectiveness is only temporary, like a blood transfusion.

3. How does alternating pred dosages work, and how is it possible to do it without freaking out the adrenals?
There are 2 methods of alternating pred dosages. The first is what many of us do-- alternating between two similar doses as we taper (eg 3.5/ 3/ 3.5/ 3). This method is fine for anyone to try and can help you taper easier.

The other method is alternating pred one day and nothing the next (eg 60mg/ 0 mg/ 60 mg/ 0 mg). The purpose is to force the adrenals to wake up and work on the zero pred days, so they don't shut down altogether. This is great for preserving adrenal function (if they haven't been shut down already) but Dr Seo believes it cause more Wegs flares. He never recommends it because of that. He said that Giant Cell Arteritis (a vasculitis) used to be treated that way but it resulted in too many flares. This method is NOT okay to try if you've been on pred for awhile because the adrenals will not come back online on the zero pred days. You have to taper very slowly to let them come back online gradually.

He said the type of pred taper you're given depends on where you're being treated. Cleveland Clinic uses alternating doses more because that's where it was started. JHU doesn't because they don't have that history of doing it. Isn't that interesting?

4. Pediatric Issues
* Pred is given at much higher doses for kids-- 2mg/ kg and they typically use the second type of alternating doses to taper it, forcing the adrenals to function. The reason for the higher pred doses is that it's much harder to get Wegs under control in children-- they have to hit it very hard. But when they do, kids bounce back faster.

* Much of adult Wegs treatment cannot be extrapolated to children. (BTW this is true of any illness. Children are not just small adults.) He really stressed this.

* Dr Seo will treat children if they're in "double digit ages" because they are more like adults at that point.

* There IS a VF pediatric doc at CC who treats little Weggies-- Dr.Phil Hotchkiss (check the spelling). I figure this will be very good news for our parents of wee Weggies.

5. What's the difference between the 2 protocols for Rituximab infusions?
The 2 protocols are:
1) 4-infusion protocol= Once a week for 4 consecutive weeks. Total of 4 infusions in a month.
2) 2-infusion protocol = One infusion, then another two weeks later. Total of 2 infusions in a month.

Mayo has been doing the 2-infusion protocol and getting the same results as others who've been using the 4-infusion protocol. When I asked why different vasculitis centers used different protocols, he basically said it's just what they each tried, and both worked well, so they kept doing what worked.

It really demonstrates how many unknowns there are with rtx and how they figure things out by trial and error. Because all the VF docs want to use the least amount of drugs, and because the more you use rtx the more likely you are to become allergic to it, more of them are starting to use the 2-infusion protocol. Dr Seo said he is definitely leaning that way now.

6. Does remission mean absence of symptoms?
No. Even with good disease control, you may continue to have some Wegs symptoms. The trick is in making sure they are truly mild and stable. And as we all know, Wegs (or the drugs) can cause lasting damage that often mimics symptoms of active disease.

7. Have results from the NIH study on CTX vs RTX been published yet?
(This question from a member puzzled me at first because I thought I missed a major study) Yes, this was the RITUXVAS study from last year. Like the RAVE study, it showed rtx to be as effective as ctx in inducing remission.

Dr Seo has a very good sense of humor. His first answer to the question was "Yes. Rtx is good." LOL

I'll post if I remember anything else.

[ScreaminMeanie]

Apparently, my google-fu stinks! I have not been able to find anything reporting the results of that study. Thank you so much for being our ambassador!!

[Jack]

Great info Sangye.

I found No6 interesting since I consider myself to be in remission, but still have the ear thing going on which seems to be Wegener's related. Sounds like this may well be the case.

[elephant]

Sangye thanks again for getting our questions answered. I too was thrilled about number 6. Cause I still have mild symtoms of eye,ear and sinus stuff.

[Sangye]

Yeah, I told him I finally understood that just because I'm having some symptoms doesn't mean Wegs is active and that we have to treat. The fact that I wasn't understanding this has created a lot of frustration for me. I thought he either didn't believe me or wasn't taking me seriously sometimes when I'd mention symptoms.

When I saw him yesterday I began by listing symptoms, which I categorize as New, Continuing or Returning. At one point he said "I'm listening for something that tells me we need to re-treat (with Rtx) now." Ohhhhh....! :blushing:

[elephant]

Ditto to what you said Sangye. NO wonder why I got those looks...."What are you complaining about!"

[Sangye]

I know!! Sometimes I'd be describing a worrisome symptom, and he'd say things like "I'm not concerned about that" or tell me how much worse things could be. It was crazy-- the more he'd say it, the more I felt he wasn't getting it, so the more I tried to explain it, which made him insist even more that it wasn't a problem, etc.....

Understanding this has totally transformed our working relationship. My appt yesterday was much less stressful and much more productive. We were on the same page. Whew!

[drz]

I found number six also most interesting. I was wondering if I would ever get remission, but this definition gives me more hope and understanding of what it means to manage the disease.