Questions for Dr Seo

[Sangye]

I see Dr Seo on Wednesday so if anyone has any questions you'd like me to ask, post them here.

Here are two questions I've already got on my list:
1) Info about low-dose naltrexin and use for Wegs

2) Why are some Weggies on rtx also kept on mtx, while others are only given rtx?

Please keep your questions general (ie, not specific to your case). I'll do my best to get them all in.

[elephant]

How long does someone stay on maintence dose ( average)?
What's harder on the body staying on Bactrim DS or prednisone for life to keep Weg in remission?

[pberggren1]

those are good questions.

I would have to say that the pred would be harder on the body long term.

[beeinformed]

Hi!

I am not sure if this would be considered a general question but what immunosuppressant (cytoxan, cellcept, imuran, rituxan,etc) drugs are used to prevent further neurosensory hearing loss in Wegener's? Thanks! :smile1:

[Sangye]

Elephant, I bet it's pred hands-down. Even from a holistic perspective pred is far more problematic than Bactrim. (A holistic perspective takes into account the gross imbalances and more subtle ones, too)

At my last visit I told Dr Seo how someday I'd like to be able to stop lasix, the diuretic I take for my leg edema. He said "Of all the drugs you take, it's the least harmful." I said "No, it's harmful." He had to repeat at least twice (!!) "I know. But of all the drugs YOU take, it's the least harmful" before I got what he meant. LOL :laugh:

[Sangye]

beeinformed, that's a good question. I'm not sure I can ask it though since I've never had Wegs-induced hearing loss. I can only squeeze in questions that could somehow apply to me. Dr Seo is great about answering tons of my questions at each visit.

[Sangye]

I should also say that I always ask about current research, use of new drugs, etc....

Along those lines I'm going to ask if Cellcept is falling out of use. I've been on it before and wonder if it would be considered again.

[drz]

I should also say that I always ask about current research, use of new drugs, etc....

Along those lines I'm going to ask if Cellcept is falling out of use. I've been on it before and wonder if it would be considered again.
Have you asked as to what residual symptoms are normal or typical even after a person attains drug induced remission? It seems that many of us still have some mild symptoms like nasal stuff or joint pain or fatigue even after we are 90 % improved and considered in remission.

I also wonder why many of us have trouble walking. I know mine is partly due to inner ear damage (balance issues), neuropathy (nerve damage to both sensory and motor nerves), and some muscle weakness from muscle wasting; but i wonder if that is true for every one else.

[Sangye]

I've asked about residual signs/ symptoms in the past-- quite a bit, actually since I have so many remaining problems. I don't think it's a one-size fits all answer. Even in my own case it's taken a long time to figure out what's causing several symptoms, and for some we still have no answers. For example, the ongoing and often overwhelming fatigue many of us experience can be due to Wegs, drugs or other damage. I was shocked and pretty depressed by how lousy I still felt once I got into remission!

I would say the same thing with trouble walking. It can have such a wide variety of causes.

[gurinbasra]

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.

[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.

[pberggren1]

Awesome work there Dr. Sangye!

[Sangye]

Thanks, Phil. I give Dr Seo a lot of credit for taking the time to answer all my questions. He's unbelievably busy and always answers my questions thoroughly. He and I share an appreciation for quality research and for evidence-based medicine.

[pberggren1]

My doc is the same way. He is very compassionate and always anwers all of my questions and we e-mail back and forth as well. He is a researcher himself. This okra sounding drug may be what we need. I hope it works but it will be years before any of us could go on it.

[chrisTIn@]

I give Dr Seo a lot of credit...
...He and I share an appreciation for quality research and for evidence-based medicine.

I appreciate quality research too.

Thank you very much for asking the question about LDN
and reporting dr. Seo's answer here, Sangye.

[Sangye]

Phil, like I said in my update thread, the okra-something drug is probably only going to be used for those of us who don't tolerate rtx very well. He was very reluctant to give many details about it.

[Sangye]

It might sound strange to some, but I woke up really happy today thinking about this new treatment plan. It brings me peace knowing that I don't have to continue to "crash and burn" for months before then losing another 6 wks to rtx treatments. I didn't realize how much anxiety I had over it-- always wondering "Is the rtx still working? Should we re-treat yet? Can I tough it out longer? How long should I hold out? Did I let it go too far and now the Wegs dog is fully awake?"

Thank goodness for Dr Seo. :thumbsup:

[freakyschizogirl]

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.

I had no idea about the Silica exposure. Did Dr Seo specify what sort of exposure it was? Like injestion or environmental?

I was also interested with the genetic links, epecially since i come from a family immuno-compromised as it were. My granddad had a form of Lupus, my mum has RA and then theres little old me, lol. :biggrin1:
Strange that Wegs is so indescriminate of who it chooses.

[Sangye]

I brought up silica, as I have seen it in the research. They mean industrial or environmental exposure.

[chrisTIn@]

Is this the kind of silica we are talking about?

CDC - Silica, General Publications - NIOSH Workplace Safety and Health Topic (http://www.cdc.gov/niosh/topics/silica/)

[Sangye]

Yes. :smile1:

[LisaMarie]

I have a question...if rituxan puts you in remission can you still be diagnosised with WG ? while you are still in remission?

[Sangye]

Why would you be getting rtx if you don't already have Wegs?

[LisaMarie]

I am just wondering if you have a diagnosis of WG by one doc then treated with RTX....if when you are re eval by another WG specialist they would question the dx....if RATX puts you in remission but the drugs you are taking give you flare like symptoms why question what was already Diagnosised?

[Brooke]

I am looking to get life insurance, I heard from the place we are looking into that I would need to be in remission before they would cover me. Maybe that question had something to do with getting insurance?

[JanW]

Lisa Marie - but then the doc should be able to test you for b cell activity to see whether or not there has been reemergence and your WG is becoming active again.

The other, of course, even simpler (although more risky thing to do) is get off the meds and see whether the issues persist.

[Sangye]

Lisa Marie, any doc who evaluates you will look at your labs and clinic notes prior to diagnosis and prior to rtx, in addition to your current status. That will usually tell them what they need to know as far as proper diagnosis and treatment. Some cases are still pretty cloudy though. If someone with an uncertain diagnosis improved with rtx my guess is it's a good sign that they have Wegs (or one of the very limited number of things rtx is used to treat). I don't know for sure.

[LisaMarie]

I am just soo fustrated...the docs here said I have WG and need ed RTX to prevent further problems with the disease. My CANAC was negative and no tissue sample was take when I had the my tracheal repair . I t was not til 2 months laterwhen I had a sinus infection that would not go away and my trach started closing off did I get the WG diagnosis....My WG specialist here is a newbie and never put me on Bactriim DS porphalatic prior to the RTX...so post RTX and Imuran I ended up in the hospital and almost died from asprigillous in my lungs...I only tolerated Imuran for 4 weeks...when they checked my labs my liver enzymes elevated so they stopped it ...2 weeks later I was hospitalized for 14 days(the same hospitalization menationed above)....every time I try to go down on my pred my joints hurt worst and I get resp symptoms .....my CRP rises periodically for no rhythm or reason.....I have the rashes and the other symptoms of WG.....I have to go back to Mayo in May and will be re bronch and have and ENT appointment as well as one with Dr Specks......I am just so fustrated that my Doc here did not talk to Mayo ...he sent a blanket letter with minimal info.....I just got my packet from Mayo and now it looks like they are questioning WG and think it may be something else..Only I can go to Mayo and have then scratch their heads....I am swelling more as I taper but the warmer weather feel a bit better...The RTX worked cause I have not B cell as well as almost no immunity...When I saw Dr Specks...he said the RTX should have put me in remission and my pred should have been reduced...but he did not look at any of my paper work that I sent cause he was snowed out......so I only got to see him on my exit day....now I go back in May to be re evaled again and hopefully get some answer.....I guess I am just so confused and scared...I plan on Dr Specks managing my care from now on ...but if it is not WG and I took all this destructive meds ...and may have something else ughh.....who do you trust????:predrage:....sorry I just hate this...I would love to not have WG ..but inside I know how i feel and it all points to WG...ughh:confused1:

[Sangye]

Lisa Marie, I can't imagine going through all that without a certain dx. Very anxiety-inducing!

If it's any consolation, I don't think Bactrim would have protected you from getting aspergillosis since that's a fungus. It's not routine at all to put someone on bactrim along with rtx. They use it routinely only with ctx to prevent pneumocystis carinii-- type of pneumonia that mostly affects immune-compromised. For some reason ctx makes us particularly susceptible to that bug but rtx does not.

Regardless of the letter your doctor sent, didn't Mayo request your labs, surgery results, CTs, etc... prior to your visit? The major centers do not rely on doctors' letters alone. You might want to email Dr Specks with your concerns. He's your doctor and you don't have to sit on this until May.

[LisaMarie]

I sent over 300 pages of records 3 weeks in advance...I saw Dr Utz first since Dr Specks was detained by the weather and Dr Utz had no clue and was rude.......I also saw a Fellow Dr Maou who was awesome but when I read his dictation he did not really listen to me or I gave too much information for him to remember...I friend of mine told me to do a time line so when I see Dr Specks again he sees the who pick....I went from a CRP of 8 to 21.9 in 1 week while I was up there on 40 mg of pred...now i am 1 week on 20mg and my CRP is down to 2.0.....I plan on being on 10 mg for atleast a month prior to seeing Dr Specks again...I am to call them if I get too sick and they would prefer me to go up to Mayo.....I guess I am still mad at some point that I have WG and now confused on why it is being questioned....I know several people with limit WG that have negative CANAC and negative tissue samples..but tracheal stenosis and all the other symptoms......I guess I just need to vent.....I am not sure anyone can give me any answers...so I will mediatate more often and pray they know what they are doing:crying:

[LisaMarie]

I ment whole picture for doctor to see

[Brooke]

Just a note on the bactrim, I have been on it for over a year and did take it while receiving Rituxan. I might call her and ask if and how long she would like me to continue with it.

[Sangye]

I think you're still on it because of your sinus involvement, right?

[Brooke]

Yeah, maybe that is why they want me on it for a long time. I guess I wasn't even sure why I was put on it in the first place, my sinuses or lungs or airways or I suppose all of the above.

[Elena]

You mentioned that taking mtx while being on rtx is an outdated treatment. Is it the same for taking CellCept while being on rtx?

[LisaMarie]

my ID doc has me on bactrim ds 1 tab daily and now back on acyclovir daily to ward off any infections...been on bactrim ds since i was released from the hospital in ovtober....and just restarted the acyclovir cause the sores on my tongue returned...

[Sangye]

You mentioned that taking mtx while being on rtx is an outdated treatment. Is it the same for taking CellCept while being on rtx?
I can't imagine why they'd put anyone on cellcept if they're getting rtx, since both of them target B cells. I would check this out with a Wegs specialist. I've never seen it done in the rtx studies.

[pberggren1]

Actually only rtx targets the b cells and Cellcept is more of a chemo drug.

[Sangye]

Actually only rtx targets the b cells and Cellcept is more of a chemo drug.
No, Phil that is not correct. Cellcept is not at all a chemo drug. It specifically targets B cells without doing the collateral damage that chemo does. (Chemo doesn't target any cells. It's just so toxic that it kills all rapidly-dividing cells, including WBCs).

Even though both target B cells, Cellcept and rtx work differently and rtx is much stronger than Cellcept.

[Elena]

huh. Will put this on my list of things to ask about the next time I'm scheduled for a check-up. I just had my third round of rtx now, and I've been on CellCept for about a year.

[Sangye]

Elena, it would make sense to me if they used Cellcept beginning around 5 months post-rtx and continued it until the next rtx treatment. B cells can start returning at around 6 months and Cellcept takes a month to kick in. So it would be sort of a cover for when the rtx isn't working well.

This is only a guess, though. I have nothing at all to base this on other than my own understanding of how the drugs work. I also question if it's a viable strategy because even though I have such a difficult case of Wegs Dr Seo isn't considering using cellcept in addition to rtx.

[pberggren1]

Well my doc told me yesterday that Cellcept is more similar to Imuran and does not target B cells.

[Daggar]

Cellcept disrupts production of both T cells and B cells - it also decreases activity of the entire immune system.

It's a possible option for Holly as she moves into the "maintenance" part of her treatment - that or Imuran.

[Daggar]

Lisa Marie -- did you ever have a biopsy? Invasive but that is the one test that really helps them nail down the diagnosis.

That's got to be very tough to not get that solid diagnosis.

[LisaMarie]

I had my first biopsies at Mayo in February...it showed chronic inflammation and inconclusive....so i go back on May on lower pred and more biopsies...I thought I had a solid diagnosis ...i trusted my WG specialist here and took all the treatment i can not tolerate cellcept or imuran...both increase my liver enzymes....i am hoping it is all those drugs and high doses of prednisone for so long is what makes me feel so bad and the RTX put the WG dog down for a long nap...i am on 20mg now and my joints ache worse and my voice keepa changing..but i will do what Dr Specks at Mayo says and deal...he needs me on 10mg to do further testing....He did not review all the records i sent over 300 pages so hopefully he will the next time i go...i don t think we have snow storms in May.I am going to print out a time line....so it is easier for me to explain to him what has happened....my Bronchoscopy from Mayo showed inflammation and narrowing of my bronchiles..right worse than left..so who know ....i will just have to trust Dr Specks:confused1:

[LisaMarie]

cellcept and imuran are used also as anti-rejection drugs and work as Holly's father explain...but if u have no b cells it does everything else

[Sangye]

Well my doc told me yesterday that Cellcept is more similar to Imuran and does not target B cells.
Cellcept is similar to imuran in 2 ways: 1) Both are used to maintain remission, and 2) Neither is strong enough to induce remission unless you have very mild disease.

You must have misunderstood about the B cells, Phil. B cells are the "trouble-makers" in Wegs-- they produce the antibodies that attack our blood vessels. Cellcept specifically targets B cells. That's precisely how it helps us.

Cellcept is classified as an immunosuppresant because it targets B cells (fewer B cells means decreased ability to fight infection). With transplants, Cellcept keeps the body from making antibodies that will attack the organ.

Cellcept also targets T cells, but those aren't involved in Wegs.

Cellcept does not target all rapidly-dividing cells or DNA.

All traditional chemo drugs (ctx, imuran, mtx) are cytotoxic-- meaning they deliberately destroy rapidly-dividing cells. Blood cells (including B cells) reproduce quickly, so they are among those killed. All traditional chemo drugs affect cell division and/ or DNA. Chemo drugs are not targeted therapy like Cellcept.

I don't normally like to use images of warfare and violence when describing treatments, but right now the only analogy I can think of is that chemo is like a bomb and Cellcept is like a sniper.

Cellcept
- immunosuppressant
- not chemo
- "targeted therapy"
- targets B cells
- no effect on DNA or rapidly-dividing cells such as gut lining and hair
- "sniper"

Chemo (ctx, mtx, imuran)
- immunosuppressant
- chemo
- not targeted therapy
- affects all rapidly-dividing cells and DNA
- "bomb"

[pberggren1]

Thanks Sangye. I must have misunderstood my doc but will ask him again about it next time. I think I may be going on Imuran after ctx this time as a maintenance drug.

[Sangye]

Yeah, cellcept didn't seem to keep you in remission very well. I hope imuran will work well when you're ready for it. :smile1:

[pberggren1]

Thanks Sangye. I hope so too. My gut feeling is that Imuran is the way to go.