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.