Latest appointment with Dr Seo

[Sangye]

I had my quarterly visit this week and thought I'd update. I've been having really bad non-stop fatigue and weakness since June-- worse than my usual. I don't recover at all by resting. I'm also having joint pain that flashes on and off in different joints. My gut feeling is that it's smoldering Wegs-- that the rtx just isn't able to take care of all of it. Dr Seo didn't agree. However, no one (including Dr Seo) thought I had smoldering Wegs for the entire 2 years I was on Cellcept. It was only in retrospect that he saw it. Neither of us wants to treat these symptoms right now anyway, so it doesn't matter.

The plan is still for me to make it one year to the next rtx in May and repeat it annually.

He's okay with me tapering the hydrocortisone as slowly as I want but doesn't want me to keep tapering until the holidays are over. He said holiday stress messes up many peoples' pred tapers, and they get into trouble. He freezes pred tapers during the holidays. Heads up for some of you!

He suggested doing another sleep study because of the fatigue. I've already attempted 2 and will think about doing another in the new year. Ironically, I'm too exhausted to do it.

Current research:
- The abatacept trial seems to be going well. It's a "Me Too" drug, which means it isn't a new line of thinking, just a variation of other drugs currently used. It'd be used like mtx, imuran and cellcept.
- The trial comparing rtx and ctx/ mtx over 18 months show that rtx is as good as the ctx/mtx combo over a longer period.

I asked about plasmapheresis putting people into longer remissions. I've seen that happen in our group several times. He said that isn't true in the larger scheme-- that after the first year of treatment the stats for plasma'd people are the same as for anyone else.

[delorisdoe]

I had my quarterly visit this week and thought I'd update. I've been having really bad non-stop fatigue and weakness since June-- worse than my usual. I don't recover at all by resting. I'm also having joint pain that flashes on and off in different joints. My gut feeling is that it's smoldering Wegs-- that the rtx just isn't able to take care of all of it. Dr Seo didn't agree. However, no one (including Dr Seo) thought I had smoldering Wegs for the entire 2 years I was on Cellcept. It was only in retrospect that he saw it. Neither of us wants to treat these symptoms right now anyway, so it doesn't matter.

- .


This has been where I have been for the last year, getting progressively worse. It is only recently that I have found myself wondering when the pain is bad enough to start to treat it as a major symptom. How will you know when it needs to be treated. My labs always fluctuate with my pain yet I can go months with no other symptoms. I think maybe I will take this weg dog back to the pound.

[Dirty Don]

I think ANY time you have pain you think is not normal or affiliated with WG, you get your butt into the doc...no waiting, no fretting, get advice asap! And keep at it! This dog don't let go so easy, honest, mean little bugger it is!

[delorisdoe]

I do get my butt in. My appointments have been every 3 months at least and my blood work is monthly but nothing changes-more pain = lab results increasing but nothing else.

[Dirty Don]

mmm, sorry then for the tests...they should show pain centers easily enough. Glad you take care of yourself Leigh, so many people don't or don't know where to begin, so I operate on that principle when I hear of someone struggling in any situation.

[delorisdoe]

well you are not way off. My appointment is december 15th and if I let him know at that point how bad the pain gets at times it will be the first time that I will really be forcefull in a long time. I say if because i tend not to speak up and if I feel good that day then who knows what I will say...

Sangye, how will you know when you need to treat the pain?

[Dirty Don]

Ha! Dec. 15th, while you're in an appt getting what YOU need, I will be in surgery....Mayo finally decided that correction of some of my previous sinus problems may help the 'wind tunnel' effect I'm getting in my head...jeez...what next! I'm having the surgery at Mayo's behest/suggestions cuz I was vocal about what was bothering me...they examined me up and down and thru, am now in ongoing and corrective treatments! Anyway Leigh, wasn't yipping AT you, just putting opinionated knowlege out there...best of luck to you on 15th!

[Al]

...I asked about plasmapheresis putting people into longer remissions. I've seen that happen in our group several times. He said that isn't true in the larger scheme-- that after the first year of treatment the stats for plasma'd people are the same as for anyone else.

Sangye, what did he say about the "short term"?

Al

[Al]

well you are not way off. My appointment is december 15th and if I let him know at that point how bad the pain gets at times it will be the first time that I will really be forcefull in a long time. I say if because i tend not to speak up and if I feel good that day then who knows what I will say...

You've been through quite a wringer, Leigh. But that is no reason that you need to be polite. As I keep saying, and it is still true, the doctor gets paid good money to deal with your carping. That is, in part, his or her job. Rant, girl!

Al

[Sangye]

Leigh-- severe pain is Wegs and can't be ignored, no matter what the lab tests show. You gotta push for that.

My pain is not severe right now and isn't constant, like when the Wegs dog is awake. Our plan is for me to try to make it to one year between treatments. If the symptoms increase to where I can't handle it then we'll re-treat sooner. I'm not waiting as long as we did last time though. I lost a lot of ground by toughing it out for 5 months and still haven't gotten back to where I was as far as physical function. The Wegs dog woke up last Thanksgiving and I'm still nowhere near able to do what I could do then.

Al-- short-term is just hang in there and wait and see. Rtx is my only option, so we can't overuse it. My CD19 count is still zero, so there's no point in re-treating with rtx right now anyway.

[Dirty Don]

I should've listened bettter in chemistry...nothing like a little field practice! Take care to all of you...be persistent, stay patient!

[Psyborg]

Sangye, I hope everything holds out till May for you. Just don't wait if it isn't...:) We worry about you.

[Chris G]

Hang in there, Sangye. I keep hoping things will improve for you.

Leigh - 15th eh???? What's the game plan gonna be?

[Sangye]

Don't worry, I told Dr Seo there is no way I'm going to wait as long this time if the Wegs dog starts waking up. Last time my labs looked fine so no one but me thought it was Wegs. Now I know better and so do they.

[ArlaMo]

So...how do you really know if the pain is Weg pain or just, well, pain I guess? I'm in remission, labs are all good, I feel pretty good - much, much better than I did the last two years for sure. But...my knees hurt all the time and my feet hurt all the time. I keep going and pushing, exercising and hoping that will help. But should I be more concerned about the pain? I just don't know...

Sangye - hoping all is well with you and that you make it til next summer for your next treatment!

[Sangye]

Wegs pain feels very different to me. It's a combo of stiffness and pain. When it's really fired up, I can't move the joint at all. It often feels like the joint has been crushed with a hammer-- not just broken, but smashed. I also will get a sensation like it's going to explode. It's not just throbbing, it's like a pressure building. That can happen to a joint or even a tooth. Unfortunately, there is no way of knowing what it's like for someone else.

One of my telltale signs of the Wegs dog waking up is feeling like I'm walking on the bones of my feet. It's different than the other types of foot pain I have. Others have described it, too.

In your case ArlaMo, it may be that your pain is coming from background inflammation, even with Wegs in remission. Try adding 2,000-3,000 mg fish oil a day. It's anti-inflammatory and good for us in other ways. I can definitely tell the difference when I take it or not.

[freakyschizogirl]

I should've listened bettter in chemistry...

Thats what i shoulda done too. An awful lot of this disease is too technical for me!

Sangye, Leigh - good luck to you both and hope you improve/ feel some benefit soon x

[Al]

Thats what i shoulda done too. An awful lot of this disease is too technical for me!


Yes, it is a very complicated business. And, as it turns out, it is too complicated for a lot of people in the medical profession who, presumably, took their chemistry classes very seriously. But that complication is at the molecular level. At the human level, well, we hurt. That doesn't sound too hard to comprehend. Does it...?

Al

[JanW]

Sangye that's an excellent way of describing the foot pain I had before I was diagnosed. I would say to people that I felt as though I could feel every pebble on the sidewalk -- worse that walking barefoot. It was one of the first symptoms that disappeared when I got treated.

[freakyschizogirl]

Yes, it is a very complicated business. And, as it turns out, it is too complicated for a lot of people in the medical profession who, presumably, took their chemistry classes very seriously. But that complication is at the molecular level. At the human level, well, we hurt. That doesn't sound too hard to comprehend. Does it...?

Al

Brilliant Al - i love it!

[ArlaMo]

Wegs pain feels very different to me. It's a combo of stiffness and pain. When it's really fired up, I can't move the joint at all. It often feels like the joint has been crushed with a hammer-- not just broken, but smashed. I also will get a sensation like it's going to explode. It's not just throbbing, it's like a pressure building. That can happen to a joint or even a tooth. Unfortunately, there is no way of knowing what it's like for someone else.

One of my telltale signs of the Wegs dog waking up is feeling like I'm walking on the bones of my feet. It's different than the other types of foot pain I have. Others have described it, too.

In your case ArlaMo, it may be that your pain is coming from background inflammation, even with Wegs in remission. Try adding 2,000-3,000 mg fish oil a day. It's anti-inflammatory and good for us in other ways. I can definitely tell the difference when I take it or not.

Hmm, interesting. That's pretty similar to what I feel in my feet, especially when I first wake up in the morning, or when I stand up from sitting for awhile. I actually cringe inwardly when I know I'm going to have to stand up.

And fish oil, definitely in my daily regimen, but my dose isn't that much, so I will add more and see if that helps a bit. Thanks again for taking the time to reply!

[me2]

Sangye,
I'm sorry that you are not out chasing rabbits, or whatever it is you would do if you felt great. It seems your chart and mine are fairly similar in recent times. I am not doing as good as I was since my last Rituxan infusion. I too suffer from great fatigue and wandering joint pain.
It helps me to know that someone else has the same thing - I'm sorry its you. It helps in part because the doctor kind of treats me like I'm nuts, or a complainer - my labs look fine. Well golly , I'm real glad to hear that but I don't feel well.

He asks me what I would do if I felt better. Fishing around to see if I'm just some guy that has no goals. Hmm I have enough plans and aspirations for three other people but I can't pursue them if I am exhausted. Some times I wonder if some of these doctors have ever been sick a day in their lives.

Well, thats a pretty good dose of complaining. I'd like to talk about so much more but I have to get moving. I hope my access problems to this site get fixed. If I can only get on here once every couple of months its going to be mostly complaining.

I have thoroughly enjoyed reading how y'all are doing. I wish I had more time this morning to join in some of the fun.

[Al]

Sangye,
I'm sorry that you are not out chasing rabbits, or whatever it is you would do if you felt great. It seems your chart and mine are fairly similar in recent times. I am not doing as good as I was since my last Rituxan infusion. I too suffer from great fatigue and wandering joint pain.
It helps me to know that someone else has the same thing - I'm sorry its you. It helps in part because the doctor kind of treats me like I'm nuts, or a complainer - my labs look fine. Well golly , I'm real glad to hear that but I don't feel well.

He asks me what I would do if I felt better. Fishing around to see if I'm just some guy that has no goals. Hmm I have enough plans and aspirations for three other people but I can't pursue them if I am exhausted. Some times I wonder if some of these doctors have ever been sick a day in their lives.

Well, thats a pretty good dose of complaining. I'd like to talk about so much more but I have to get moving. I hope my access problems to this site get fixed. If I can only get on here once every couple of months its going to be mostly complaining.

I have thoroughly enjoyed reading how y'all are doing. I wish I had more time this morning to join in some of the fun.

Kirk, we've had a major influx of complaints about 1) fatigue and such, and 2) internet problems. I wonder if it is the upcoming solstice, climate change, of what? Might have to nap on that on.

But the fact is, your doctor probably has never had WG--am I right? And, sure, he must have been sick on some day of his life, but not the day he sees you. So how can he be empathetic? People are not built to really understand someone else's problems unless they are having the same ones. Yes, doctors are trained (in theory) to be "understanding", but they are also human. Just because you hear about something in a class doesn't make you feel something foreign to you. I think the trick is to actually make it personal for the doctor. Make your situation reflect on him as your employee (which he is). As I have suggested elsewhere, tell him calmly (as any boss would), "I am disappointed in your answer, Please try harder." That should get his juices flowing.

Al

[me2]

Hey, I got onto the site and it only took about twelve tries. Things are looking up. If the powers that be read this please know that my offer to help in any way possible fix the access problem still stands. Just let me know what I can do.

"I think the trick is to actually make it personal for the doctor."

I think this is good advice Al. I hear you saying that I should make his life miserable until I get to feeling better. It makes sense.
Thank you. I'll do my best Marlon Brando 'Godfather' impression to let him know "I'm dissappointed in what I'm hearing. I give you more money than my favorite Nephew and this is the best you can do? "


Seriously I do understand the difficulty in finding empathy here. The doc sees me on the best day of my last week right? I rest ahead of time , my energy is 'up' to get the most out of my visit, and then I come home and collapse for a few days. To make it worse like everyone here I can be very ill and look just fine. What is the poor doc supposed to think? My blood work looks ok, I LOOK ok. Well, he is put in the uncomfortable position of having to listen to me. To try and understand me.

And most difficult of all... drum roll... to trust what I am saying.
The problem is that if I come on too strong I get labeled a problem patient and a complainer.
I am one of the unfortunate, like Sangye and others, whose blood work looks like an 18 year old football star during the time I am practically at deaths door (which is not right now, I count my blessings).
But now I am stuck in a limbo of not being sick enough to hammer with the big guns but not well enough to feel like I'm making progress. (We don't have much except big guns on the WG firing range.)
Thanks for you suggestions. Have a great day in the beautiful Great Northwest.

[Al]

I think this is good advice Al. I hear you saying that I should make his life miserable until I get to feeling better. It makes sense.Thank you. I'll do my best Marlon Brando 'Godfather' impression to let him know "I'm dissappointed in what I'm hearing. I give you more money than my favorite Nephew and this is the best you can do? "


Love this, Kirk!

I agree that it is a continuing problem that the tests (and your mien) do not show how you really feel. But, look: Don't worry about being labeled a problem patient. he doctors get paid great money to hear your complaints, so get your money's worth and let them hear you! And, frankly, it make 'em better doctors to have to think about things, so you are doing them a great favor--guiding their careers, in fact.

Here's the deal. The best thing you can do for yourself and your doctor (and, generally, everyone you have to deal with in life) is to get them off script. I cannot overemphasize this. Teachers/students, lawyers/clients, retailers/cutomers. deities/supplicants: All relationships are more productive when the scripts are tossed.

Okay--there is my daily homily; I assure you it is not canned!

Al

[Sangye]

Hmm, interesting. That's pretty similar to what I feel in my feet, especially when I first wake up in the morning, or when I stand up from sitting for awhile. I actually cringe inwardly when I know I'm going to have to stand up.

And fish oil, definitely in my daily regimen, but my dose isn't that much, so I will add more and see if that helps a bit. Thanks again for taking the time to reply!
ArlaMo, try drinking 1-2 tablespoons of apple cider vinegar in a glass of water every day for a few days. The reason for ACV is that when your pH is off calcium can precipitate into the joints and cause stiffness with inactivity. ACV corrects the pH within a few days.

If you still have the foot symptoms after sitting, then it could be Wegs. It might be that you're overexerting with exercise and waking up the Wegs dog just enough to cause some symptoms.

[Sangye]

The doc sees me on the best day of my last week right? I rest ahead of time , my energy is 'up' to get the most out of my visit, and then I come home and collapse for a few days. To make it worse like everyone here I can be very ill and look just fine. What is the poor doc supposed to think? My blood work looks ok, I LOOK ok. Well, he is put in the uncomfortable position of having to listen to me. To try and understand me.


That is EXACTLY what happens to me! Because JHU is 2 hours away, I have to rest up for a couple days before I go. And my appt with Dr Seo is always the first thing I do there. So he sees me at my best. He doesn't even see me after I've walked back to the parking lot and fall into my car from exhaustion.

[ArlaMo]

ArlaMo, try drinking 1-2 tablespoons of apple cider vinegar in a glass of water every day for a few days. The reason for ACV is that when your pH is off calcium can precipitate into the joints and cause stiffness with inactivity. ACV corrects the pH within a few days.

If you still have the foot symptoms after sitting, then it could be Wegs. It might be that you're overexerting with exercise and waking up the Wegs dog just enough to cause some symptoms.

Does the brand of ACV matter? I know my mom uses it to help with acid reflux as well. Aaack - so many things to know and do.

[pberggren1]

This dang disease can drive one crazy for sure. Way too much to know and understand. It is just the past 3 years or so that I feel that I understand the disease. And there is still so much to know. But my doc says I do quite well when it comes to understanding the medical part of it and also says that so much is not known or understood at all. He said treating Wegs is more of an art form that an exact science.

[Sangye]

The brand doesn't matter, as long as you get one that has the "mother" floating in it. Braggs is a brand that is easy to find. Don't get a supermarket food ACV like Heinz--taste is WAY more acidic and it isn't as beneficial.

I can only use ACV sometimes, since vinegar increases the Fire element in the body and mine is already too high. But it's a miracle food when I do use it.

[pberggren1]

I never really did understand what ACV really is and what this "mother" thing is all about.

[Al]

I understand the "mother" part. What I want to know is what if you can't take vinegar of any kind?

Al

[pberggren1]

Not sure Al. I take it u can't take vinegar? Why is that? Too acidic? So tell me about the "mother".

[Al]

Not sure Al. I take it u can't take vinegar? Why is that? Too acidic? So tell me about the "mother".
I Think Sangye is referring to something like "mother love". Vinegar of anything gives me an instant and horrible gag reflex. My father was the same way, a was my sister, and, to a lesser extent (they will sometimes use salad dressing, but never consume a pickle), my kids. Maybe it runs in the family...?

Al

[chrisTIn@]

The brand doesn't matter, as long as you get one that has the "mother" floating in it.

Would 'mother' not mean: the original source of which the vinegar is made? In this case apple/cider? :unsure:



He said treating Wegs is more of an art form that an exact science.

That's excactly what doctors in my 'Wegs-center' say, Phil...

[RCOSSIO]

Gosh darnit..."a nice way to say it"...Sangye,

Every 4th quarter of the year it seems to hit you hard...does the colder, wetter climate affect you more than when you were in Flagstaff a drier climate? And could you not combine a lower medication in combo with RTX.

I remember when we both joined the forum in 2008...you had experience some minor flares in the latter part of the year while on Cellcept.

Anyway...praying for a controlled 5 months until May when you can get your next dose.

[Sangye]

Al and Phil, that was a hilarious exchange! The "mother" in ACV is actually a floating gob found only in raw (unpasteurized), unfiltered ACV. It's composed of minerals, enzymes, good bacteria and a bunch of other good nutrients that we need. The mother is formed during the fermentation process. Pasteurized ACV has none of the nutritional value of raw ACV. Raw ACV is a famous remedy that goes back forever. Al, I wonder if you'd have the same reaction to raw ACV. It's much milder. You can also add some honey to the glass of water to make it taste better. That would also help decrease the excess Fire element.

[Sangye]

Gosh darnit..."a nice way to say it"...Sangye,

Every 4th quarter of the year it seems to hit you hard...does the colder, wetter climate affect you more than when you were in Flagstaff a drier climate? And could you not combine a lower medication in combo with RTX.

I remember when we both joined the forum in 2008...you had experience some minor flares in the latter part of the year while on Cellcept.

Anyway...praying for a controlled 5 months until May when you can get your next dose.

Thanks Richard. The humidity out here definitely makes me feel worse, regardless of the season. I do much better in the cold weather though--always have.

Dr Seo doesn't agree with me that I have chronically smoldering Wegs, especially since my labs look peachy in regard to inflammation. But the minute the rtx begins to wear off the Wegs springs to life full-force. I don't think that could happen unless it was already awake a bit. At any rate, I can't add more meds between rtx. My B cell count is zero so that rules out adding Cellcept. I'm allergic to mtx. And without any labs or diagnostic tests to support my theory, we have no real proof that it's Wegs at play. Judging by how poorly I do on the drugs anyway, I wouldn't want to add anything else.

[Al]

Al and Phil, that was a hilarious exchange! The "mother" in ACV is actually a floating gob found only in raw (unpasteurized), unfiltered ACV. It's composed of minerals, enzymes, good bacteria and a bunch of other good nutrients that we need. The mother is formed during the fermentation process. Pasteurized ACV has none of the nutritional value of raw ACV. Raw ACV is a famous remedy that goes back forever. Al, I wonder if you'd have the same reaction to raw ACV. It's much milder. You can also add some honey to the glass of water to make it taste better. That would also help decrease the excess Fire element.

Thanks for the education, Sangye, and I'm glad we could entertain you! Shows how much I know about fruit fermentation. That's what I like about hanging out with people--real or virtual: Everyone knows something I don't (yet), so, quite literally, you learn something new every day. Anyway, I still think "mother's love" makes a certain amount of sense for apple cider vinegar (I can hardly write the word with out my throat tightening up); after all, it works for apple pie.

Al

[pberggren1]

But why is it called "mother" though?

My B cells are still gone from the rtx I got in June and July but my doc thinks it is better to get me into a better longer lasting remission by using aza for at least 18 months. So that is what I am on now and will be for another year or so. Every case is different. I know my doc worries about my lung cavities and how another infection could just make it worse. And with each subsequent infection it can just get harder to treat until one comes along that will kill me. I don't think about that. I just try and live each day hoping that I can stay in remission. And hopefully the aza will do that for me. My doc said that trying to treat a flare and a bad infection at the same time can be deadly, so that is why he wants to see me in a long lasting remission with my lungs the way they are.

[Psyborg]

It's mother because it "births" the vinegar. I think it actually goes back to Latin if I recall correctly. It looks really gross, but it's harmless. Without the mother it's not "real" vinegar. They do produce some without but it's a chemical concoction rather than a natural process.

[Al]

But why is it called "mother" though?

My B cells are still gone from the rtx I got in June and July but my doc thinks it is better to get me into a better longer lasting remission by using aza for at least 18 months. So that is what I am on now and will be for another year or so. Every case is different. I know my doc worries about my lung cavities and how another infection could just make it worse. And with each subsequent infection it can just get harder to treat until one comes along that will kill me. I don't think about that. I just try and live each day hoping that I can stay in remission. And hopefully the aza will do that for me. My doc said that trying to treat a flare and a bad infection at the same time can be deadly, so that is why he wants to see me in a long lasting remission with my lungs the way they are.

The sick part, Phil, is that a nasty infection can trigger a flare. So keep the fire extinguishers handy....

Al

[pberggren1]

The sick part, Phil, is that a nasty infection can trigger a flare. So keep the fire extinguishers handy....

Al

Whisky??????

[Al]

Whisky??????

You talkin' oysters flambé, Phil? I'm certain that your Local Neighborhood Surly Waiter will bring 'em right out, on the half shell.

Al

[pberggren1]

You talkin' oysters flambé, Phil? I'm certain that your Local Neighborhood Surly Waiter will bring 'em right out, on the half shell.

Al

Nah, just straight wisky.........lol.

[delorisdoe]

I like oysters.

[pberggren1]

I like oysters.

prairie oysters?

[delorisdoe]

prairie oysters?

no. ocean oysters

[Sangye]

Ahem. I don't mind that some threads go way off topic, but I do mind that all of them seem to be lately. This makes it very difficult for newer members (or anyone else) to find info on here without wading through pages of side comments and one-liners, and it makes it laborious to catch up if you're behind on reading. This is page 5 of this thread and almost no discussion has taken place about the original comments I posted from Dr Seo. I'm not referring to my own case, but to the other info he provided.

[annekat]

Ahem. I don't mind that some threads go way off topic, but I do mind that all of them seem to be lately. This makes it very difficult for newer members (or anyone else) to find info on here without wading through pages of side comments and one-liners, and it makes it laborious to catch up if you're behind on reading. This is page 5 of this thread and almost no discussion has taken place about the original comments I posted from Dr Seo. I'm not referring to my own case, but to the other info he provided.

Thanks for that reminder. I went back and looked at your first post and Dr. Seo's comments that you relayed. I can really relate to the one about suspending pred tapers during the holidays. And I was interested to read the new info about the testing and comparisons of treatment drugs.