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Sangye
02-04-2011, 02:48 AM
I started my third round of rtx yesterday. (1st was Oct '09, 2nd was Mar '10). It went exactly the same as the others-- got extremely pale and weak within an hour, could barely stand the rest of the day due to extreme weakness.

I'm happy to say I still tolerated the rtx just fine, though. We pre-treat with benadryl and 100mg solumedrol (equiv 156mg oral pred) to prevent allergic reaction.

I don't feel bad today other than being very shaky. My rtx notes from prior treatments say I always felt much better the day after, but 2 days after the infusion things get awful for 4-6 weeks. At 6 weeks I had improved energy and decreased pain. I also saw that many of the Wegs symptoms (eg pain) worsened during those 6 weeks before getting better. I totally forgot all of that, other than I felt better after 6 wks. This is why it's important to keep notes!

Also, I had minimal sweats and swelling from the big hit of solumedrol because I took my usual 20mg lasix (diuretic) morning and night and an additional 10mg when I got home from the infusion. Really makes a difference.

I've been having such bad joint pain lately. The 100mg solumedrol didn't even touch it yesterday!

This round we're only doing 2 infusions, 14 days apart. In the past I've done weekly infusions for 4 wks.

Jack
02-04-2011, 02:53 AM
Fingers crossed for you Sangye. I hope it does the trick and that perhaps you don't suffer as much this time around.

Sangye
02-04-2011, 03:26 AM
Thanks Jack. I was so excited this morning when I got up feeling not so bad. Then I read my notes and saw it always does that. But I'm hopeful that the 2 week break in between infusions will make things better. If not, at least I know it'll all be better in 6 weeks.

ScreaminMeanie
02-04-2011, 04:45 AM
Fingers crossed that this really knocks down the WG without knocking YOU down!

Palmyra
02-04-2011, 05:00 AM
Good luck to you Sangye...and hey, if you feel better than you thought you might, thats a plus, right? Only one more to go!

DEE
02-04-2011, 05:06 AM
:hug3:HOPE TOMORROW BETTER THAN YOU THOUGHT DEEx :hug2::hug1:

BrianR
02-04-2011, 07:14 AM
This is going to work for you Sangye. I know it!

NicShaf
02-04-2011, 08:02 AM
Best of luck sangye!

pwc51
02-04-2011, 06:01 PM
Best wishes Sangye.

What is the experience of others with rtx? I thought it was more 'benign' than cyclophosphamide although equally effective? It is possible I might be switching to it!

Fran
02-04-2011, 08:38 PM
Thinking of you and hoping for much better times for you - you deserve it !!! http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)


Fran

elephant
02-05-2011, 12:15 AM
Sangye, glad you got the infusion! You will get better!

Sangye
02-05-2011, 02:19 AM
Thanks everyone. The good thing is that I know rtx works well for me so it's just a matter of toughing it out for the next 4-6 weeks.

pwc51, Dr Seo told me people either react to rtx infusions as if they were given a saline IV or they get very weak like me. There seems to be no way to predict which reaction someone will have. I'd sure love to have the "non-reaction" thing, but at least I know this is finite. Rtx doesn't do the same collateral damage as ctx though, since it isn't chemo.

Brooke
02-05-2011, 02:25 AM
Good luck Sangye! Stay positive and hopefully you will not feel awful this time around. For others, I had no problems with the Rituxan! When I went in for my infusions last year, the nurse said she hasn't seen anyone yet have any problems/reactions to the Rituxan.

julia
02-05-2011, 02:33 AM
Thinking of you. Hope you are feeling better soon.

Sangye
02-05-2011, 02:41 AM
Good luck Sangye! Stay positive and hopefully you will not feel awful this time around. For others, I had no problems with the Rituxan! When I went in for my infusions last year, the nurse said she hasn't seen anyone yet have any problems/reactions to the Rituxan.
Thanks Brooke. I'm guessing the nurse meant allergic reactions to rtx? They wouldn't necessarily know how it makes someone weak in the days and weeks afterwards.

Allergic reaction is always a possibility, especially the more often rtx is used. That's why Dr Seo orders 100mg solumedrol for me--higher than what some people get-- along with benadryl. I don't have any other drug option so I can't become allergic to rtx. He does have one patient who developed an allergy to it though, and has no other treatment options. That was last year. I haven't asked him how the patient is doing, but his facial expression was very somber when he told me. I suspect it wasn't good. Those of us who have any treatment options left-- even just one--are incredibly fortunate.

Meredith
02-05-2011, 03:18 AM
Going to the doctor today to discuss switching to this - wants to pull me off the cytoxan. I am going for it but want to wait till I get back from my cruise March 1st. Little worried about what kind of reaction I am going to have. he wants to do one treatment then another 2 weeks later. We are waiting for insurance approval.

Sangye
02-05-2011, 03:19 AM
Why does your doc want to switch to rtx?

Meredith
02-05-2011, 03:23 AM
Been on cytoxan to long and I have had issues with my eyes. Have been on predisone drops for a month.

Sangye
02-05-2011, 03:30 AM
Is there any way you can get to a Wegs specialist or get one to consult on your case?

ScreaminMeanie
02-05-2011, 03:42 AM
How are you feeling today, Sangye? Has the truck hit yet, or did it maybe pass you by this time?

Sangye
02-05-2011, 03:48 AM
I'm in a good mood, which helps. But I'm noticing that even typing is extremely exhausting. It's like there's no blood in my extremities, and I'm super shaky. Just walking across my little basement is taxing. So yes, the rtx truck has arrived at Sangye's house. :rolleyes1:

DEE
02-05-2011, 03:57 AM
Sangye take care of u DEE x:hug1::hug1::hug1::hug1:

Brooke
02-05-2011, 04:09 AM
Hope you feel better sooner rather than later Sangye.
Yes, maybe the nurse was just talking about allergic reaction rather than how they start feeling at home.
I was not aware you can become more allergic the more times you get it? Good to know in advance I guess.

marta
02-05-2011, 04:21 AM
Hope the rtx truck thinks it's on the Autoban and flys by at ridiculous speeds and leaves you in it's dust. Take care Sangye. Hope you feel like a million bucks in no time.

Brooke
02-05-2011, 04:43 AM
I just spoke to the nurse at Mayo Clinic. She called me back because I had a question about traveling.
Anywasy, she said they usually do 4 infusions of Rituxan if the patient has an active flare going on. She said sometimes with the second infusion and after if the patient is doing pretty good they do 2 infusions spaced out 2 weeks apart. She said it is still the same amount of Rituxan you receive.

drz
02-05-2011, 06:31 AM
Hope you feel better sooner rather than later Sangye.:hug2:

Palmyra
02-05-2011, 06:34 AM
Best wishes Sangye.

What is the experience of others with rtx? I thought it was more 'benign' than cyclophosphamide although equally effective? It is possible I might be switching to it!

pwc51,
my daughter has a 'typical' infusion reaction to rtx (an allergic responce...can be a bit scarey, but seems to be highly individual), especially with the first infusion of a series. They address this with a pre infusion cocktail of lV pred, benadryl and tylenol. They slow down the infusion speed until things are smooth, then speed up. She reports being very tired that day, and a bit fatigued for the next few days.

She has had remarkably quick results with reduction in Weg symptoms and good test results. She has had three series over four years, and is technically due for her fourth. She is somewhat a newbie, and young, so she was never treated with cytoxin. Adverse side effects have only been infection due to immunosuppression, that we are aware of so far.

We would all hope you may not need it, but it is nice to have another heavy hitting drug in the Weg arsenal, and possibly one with fewer side effects.

Brooke
02-05-2011, 06:49 AM
Effectiveness of Rituximab in Severe Wegener?s Granulomatosis: Report of Two Cases and Review of the Literature (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2705845/)

You may have come accross this before, looks like over a year old but I noticed a couple of familiar dr's names. Including the doctor I see at Mayo Clinic in Rochester, Karina Keogh.

gurinbasra
02-05-2011, 01:35 PM
Hi Sangye,

Hope you're up and on your feet real soon and more importantly that you feel much better. Be assured that I am feeling the same weakness! I've had round 2 now, first in March 2009 and now I just completed #2 Jan 27 - I've always had the two infusions two weeks apart. The first time I had it, I was really, really sick so everyday I felt better and better. This time, I wasn't that sick from relapsing and as per the first time, I had no reactions, just pretty much slept my way through the infusions with the benadryl, but for about the first 3 days, I felt like I'd run a marathon! My legs are like deadweight, I've slept for 8 hours and yet feel so tired, but this was for about 3 days after each one, and I am now back at work, but there are moments in the day when I can do no more.

So far, I've noticed my ears have sure been ringing an awful lot - don't remember that from the last time, but then my ears were infected the first time. Anyway, been reading about everyone's bruises and here's from someone who doesn't have vein issues, I still got a really bad bruise on my hand - told my kids it was my bravery badge!

Take care
Gurinder

Sangye
02-05-2011, 02:13 PM
The first time I did rtx I was in a severe flare and had been for months. I had just tried ctx but it was destroying my bone marrow. So by the time I began rtx I was already in terrible shape. The second round was only 5 months later, in order to get the Wegs fully under control.

This time, the Wegs was starting to wake up but I wasn't as bad off as in Oct 2009. And we're only doing 2 infusions instead of 4. I'm hoping all of that means I'll recover faster!

Sangye
02-06-2011, 03:50 AM
Man, I'm waaaaay worse today. The truck has officially run over me. Ugh. :sad:

DEE
02-06-2011, 04:08 AM
Thinking of you :hug2::hug1::hug2:DEE x

drz
02-06-2011, 06:40 AM
Man, I'm waaaaay worse today. The truck has officially run over me. Ugh. :sad:

Sorry to hear you feel so bad. Hope it isn't parked on top of you.:sad:

marta
02-06-2011, 08:01 AM
Here's what to do with that truck.
837

ScreaminMeanie
02-06-2011, 08:15 AM
Aw, that sucks. I hope the truck moves on quickly this time.

elephant
02-06-2011, 08:38 AM
Ugg, and it will pass Sangye, it always dose. Rest and take care.

Brooke
02-06-2011, 09:17 AM
Get well soon, rest up! It will get better :hug1:

Sangye
02-06-2011, 09:27 AM
Thanks guys. Marta, that was hilarious.

Brooke
02-07-2011, 03:16 AM
How are you feeling today Sangye?

Sangye
02-07-2011, 03:27 AM
The same.... Pretty sure the truck is parked on top of me! :thumbdn:

elephant
02-07-2011, 03:41 AM
Need a tow truck to remove it! Maybe a couple tow trucks, hopefully tomorrow it will be all clear!

Brooke
02-08-2011, 01:46 AM
Shoot, any better today? I hope it gets better and better for you Sangye.

Sangye
02-08-2011, 01:53 AM
I bumped up the pred to 3.5 (from 2.5) yesterday because I had to be at our temple all day. It helped. I was not that bad if I stayed sitting but anytime I stood up I got shaky. But I managed to have an enjoyable day anyway. Today I'm totally shot--predictable. I don't have to do anything today or for the next few days so I'm hoping I bounce back some. I lowered the pred back to 2.5mg.

Palmyra
02-08-2011, 02:50 AM
Sangye, your reaction to rtx is of concern to me..:sad:..is Dr Seo aware of how hard this drug hits you? I know this is not your 'first rodeo' with rtx, but do take care, and I hope your docs are listening carefully to your symptoms.

~Momma Palmyra

Sangye
02-08-2011, 03:00 AM
Yeah, he definitely knows about it. He said some people just react that way to rtx and there's nothing they can do about it. I don't have any other options. Ctx caused bone marrow toxicity and didn't work. Rtx has worked great for me. It's "just" a 6-week period of feeling like this. But it'll be interesting to see if having only 2 infusions vs 4 changes how that 6 weeks goes.

elephant
02-08-2011, 03:02 AM
Sangye when is your next infusion?

Palmyra
02-08-2011, 03:03 AM
OK...Momma P is soothed. Just sorry for your discomfort, and I hope things are easier for you this time:hug1:

Sangye
02-08-2011, 03:07 AM
My next infusion is Feb 16. I can't believe I only have to do one more--it sounds too good to be true.

drz
02-08-2011, 04:00 AM
My next infusion is Feb 16. I can't believe I only have to do one more--it sounds too good to be true.
We hope it does the trick for you and that you feel better soon! I posted some jokes to help cheer you up!

DEE
02-08-2011, 04:01 AM
Sure is true Sangye hope all goes well for you DEEx :thumbsup:

02-08-2011, 10:33 PM
Hi Sangye. I hope you won't be feeling so shakey today. Take a lot of rest! :smile1:

LisaMarie
02-09-2011, 12:41 AM
Sangye...i remember the truck ...mine was affectinatly called mack cause i felt like a mack truck ran me over every day....unfornately for me after the six weeks when i was suppose to be feeling better i ended up in the hospital...i hope this spacing out works better for you...I go to Mayo in 2 weeks to see Dr Specks...wish me luck....had to go off the cellcept as it made my liver enzymes triple....ughh what next!!!!

Sangye
02-09-2011, 02:18 AM
Biiiiiig truck on me today. It's only 10:00 and I'm wondering how I'm going to make it through the day. Oy.

Lisa Marie, I'm so glad you're going to Mayo. I don't think I've ever heard of cellcept affecting liver enzymes. Any drug can, of course. I hope he can figure out a good treatment plan for you.

elephant
02-09-2011, 02:29 AM
Looking forward to your trip too LIsa Marie.

RCOSSIO
02-09-2011, 02:46 PM
Sangye is this how u felt yesterday....

http://carsmedia.ign.com/cars/image/article/813/813500/batman-monster-truck-20070817113430022-000.jpg

Sangye
02-09-2011, 02:49 PM
LOL And today too. I actually took a THREE HOUR NAP today. Holy tamales.

pberggren1
02-09-2011, 05:03 PM
That would be my truck, since I am Batman!

Brooke
02-10-2011, 02:07 AM
My 4 yr old boy would love that truck!!! He is a superhero fanatic! Sangye, glad you are getting some rest, hopefully that will help you feel better sooner :)

Sangye
02-10-2011, 02:24 AM
I feel a bit better today. Before the nap yesterday I could barely stand and I was really irritable, too. After the nap I was in a great mood and could function the rest of the night. Usually a nap doesn't have such a powerful effect on me. It was definitely a "power nap." LOL

drz
02-10-2011, 03:40 PM
I feel a bit better today. Before the nap yesterday I could barely stand and I was really irritable, too. After the nap I was in a great mood and could function the rest of the night. Usually a nap doesn't have such a powerful effect on me. It was definitely a "power nap." LOL

More power to you.:thumbsup:

Brooke
02-11-2011, 04:24 AM
Keep taking naps!! I hope you are better today!?!

DEE
02-11-2011, 04:54 AM
No power nap for me today :biggrin1:hope you took yours Sangye :hug3:

LisaMarie
02-11-2011, 04:59 AM
Naps are hghly recommended...i try to get one in daily...but if i skip a day or two ....my body lets me know it and i end up sleeping the day away///so yes Sangye take naps and I hope you are feeling better soon:thumbsup::hug3:

LynnG
02-16-2011, 06:52 AM
Hi, TommyG's wife here...this forum is so great for family members too, I finally got my own signin! Sangye, are you still on for rtx tomorrow 2/16? I wanted to wish you the best with it and hope that you skip the truck this time.

Sangye
02-16-2011, 07:27 AM
Hi Lynn, nice to meet you. I'm glad you joined also.

Yup, last one is tomorrow. The truck is parked on me big time today. I still have to get to the grocery store and cook something that'll last the next few days. I'm so shaky and weak. I don't even know how I'm gonna get into the shower, much less the rest. That's what is so hard about the rtx infusions for me-- they have a cumulative effect. So tomorrow's will be piled onto this one.... Oy. :sad:

Meredith
02-16-2011, 07:32 AM
Waiting on approval to start this - do you know the percentage of people that get shaky/weak? Wondering how I will be able to keep working if that occurs with me. Do you work full time? Still trying to keep this confidential at work.

drz
02-16-2011, 07:46 AM
Hi Lynn, nice to meet you. I'm glad you joined also.

Yup, last one is tomorrow. The truck is parked on me big time today. I still have to get to the grocery store and cook something that'll last the next few days. I'm so shaky and weak. I don't even know how I'm gonna get into the shower, much less the rest. That's what is so hard about the rtx infusions for me-- they have a cumulative effect. So tomorrow's will be piled onto this one.... Oy. :sad:

Do you have anyone to help you with these tasks? I wish I could loan you my helper since you said they don't have those services in your area. It sure sounds like you could use them today. My home helper aid would go shopping for me, cook some meals, and help me shower if I need such assistance. Be real careful and take your time if you have to do it alone.

We also order a lot pre package meals to help since we are not strong enough to always do much cooking. Is that an option for you?

LynnG
02-16-2011, 08:05 AM
ditto! I know I am coming into this discussion after several years, but I hope you are asking for & accepting any help available. When Tom was first diagnosed I had real trouble with this, but I have gotten much better about it!

Sangye
02-16-2011, 09:10 AM
LOL After 4.5 yrs of this, I've learned to ask for help. Since moving to Maryland, I live far from most of the sangha so it's not always easy to get help. Two of them who lived around the corner have now moved. A big part of the problem is that I might be chugging along just fine, with enough energy to get groceries, cook, etc... Then the floor falls out and I can't even get out of my chair. It's not always possible to get last minute help with things like that.

Sangye
02-16-2011, 09:13 AM
Waiting on approval to start this - do you know the percentage of people that get shaky/weak? Wondering how I will be able to keep working if that occurs with me. Do you work full time? Still trying to keep this confidential at work.
Meredith, I have no idea how many people get this type of reaction from rtx. I do know there's no way to predict it. I haven't been able to work since dx in 2006. Some people don't seem to have any side effects at all. I hope you don't either.

LynnG
02-18-2011, 12:56 PM
so Sangye, how did the rtx go yesterday? Have been thinking of you and hoping for good things.

Sangye
02-18-2011, 03:00 PM
Thanks Lynn. It went the same as usual-- whatever I walk in with, I'm a gazillion times weaker when I leave. I was already pretty weak going in, but not as bad as when I'd done 4 infusions in a row.

The day after is always much better (though still pretty bad). If it goes as usual, tomorrow will be awful. Now there's something to look forward to!

DEE
02-18-2011, 04:15 PM
Thinking of you Sangye DEE x :smile1:

Sangye
03-10-2011, 10:20 AM
I saw Dr Seo today for a routine visit. Still feeling pretty lousy-- tons of joint pain, weaker than "normal." My cough is way better though.

Today is 5 wks into this round of rtx. My notes from last year said many symptoms got worse until week 6, when I suddenly felt better. Dr Seo said he was probably seeing me 1-2 weeks too early. He's confident the 2-infusions will work just as well as 4 (I expressed my anxiety over that!). Mayo has always done 2 and has tons of data to support it.

We discussed manipulating the rtx treatments to improve my quality of life. I started getting symptoms within 7 mos. of my last round and had to tough it out for another 4 mos. By the time we re-treated I was barely able to function. He said we should just schedule rtx every 6-7 months. Many people do best with getting rtx every 6 mos. as opposed to waiting for B cells to return and/or symptoms to appear. So September is Round Four.

Apparently very few people react like me to rtx (ie, get extremely weak for weeks). He feels it's due to the way rtx is manufactured and that another drug is coming down the pike for us rtx weenies. The name sounded like okra-something. It'll be at least 2 years before it's in use. I think it isn't being considered as a treatment for everyone. He didn't want to say too much about it but reassured me that I might not have to spend the rest of my life feeling like death every 6 months.

I asked about tapering pred once I feel better. He said, "I think you should surrender gracefully and stay on 2.5 mg." LOL He said I can taper if, when and how I want. Neither one of us thinks I can get below 1mg. He feels there's not enough difference between 2.5 mg and 1mg to worry about it. He repeated "Surrender gracefully" several times, which was hilarious.

He agreed that the wedge pillow is decreasing my leg and ankle edema, at least for part of the day.

I think that's everything! :laugh:

aewaustin
03-10-2011, 11:34 AM
Sangye, sorry you have such a hard time with this, but sounds like there was some positive news today. Thinking good thoughts for you :)

Meredith
03-10-2011, 12:54 PM
Start my rtx starting March 18th. On top of that my subglottal stenosis (sp) has flared up, going in for surgery for the 3rd time for this. It has been 3 years so I really should not complain. My insurance company will probably have a heart attack when these bills start rolling in.

Sangye
03-10-2011, 01:00 PM
Thanks. I feel okay about it. Of course I'd love to go into drug-free remission, especially since the rtx takes me out for at least 6 weeks each time. But I'm grateful at least it works for me.

elephant
03-10-2011, 01:09 PM
That sounds like a good treatment plan Sangye, I was wondering what is better for our body taking cellcept daily for the rest of our lives or doing IV infusions of RTX every six months?

Sangye
03-10-2011, 03:31 PM
They work the same, so it might be a draw. I don't know if Cellcept eliminates all B cells like rtx, or if it just reduces their numbers.

pberggren1
03-10-2011, 03:50 PM
At least we have drugs to keep us alive.

Brooke
03-11-2011, 01:15 AM
Sangye, that sounds like a pretty good plan. Will you have to do Rituxan for the rest of your life? Or can you spread treatments further out if you are feeling good? I didn't realize cellcept worked the same as the Rituxan, is that a pill form?

RCOSSIO
03-11-2011, 02:35 AM
Funny how Cellcept has been brought up again...BTW I just increased my Cellcept by 1000mg this week. I been having some minor joint pain and my Rheumy did not want to take any chances. I also increased my pred from 2.5mg to 5.0mg.

One more thing...my blood work for the last 2 1/2 years was normal until last week. My ANCA came back higher.

Sangye
03-11-2011, 02:45 AM
Sangye, that sounds like a pretty good plan. Will you have to do Rituxan for the rest of your life? Or can you spread treatments further out if you are feeling good? I didn't realize cellcept worked the same as the Rituxan, is that a pill form?
I don't even ask about the rest of my life or further down the road than the next treatment. I don't think there are answers. We do know that rtx seems to work well for me for about 6 months, and after that I go downhill. This occurs even though my B cells don't start returning until about 11 months.

Cellcept doesn't work exactly the same as rtx, nor is it nearly as powerful. I shouldn't have phrased it the way I did. What I meant was that both target the B cells specifically. Other drugs don't. Cellcept is used to maintain remission once a stronger drug has induced it. It's a pill.

Sangye
03-11-2011, 02:49 AM
Funny how Cellcept has been brought up again...BTW I just increased my Cellcept by 1000mg this week. I been having some minor joint pain and my Rheumy did not want to take any chances. I also increased my pred from 2.5mg to 5.0mg.

One more thing...my blood work for the last 2 1/2 years was normal until last week. My ANCA came back higher.
I'm glad your doc is on it, Richard! So how much Cellcept are you on? Also, remember that the new dose won't kick in for 4 weeks. If you're only having joint pain you probably increased the dose in time (ie, the cellcept will start working before the Wegs dog wakes up).

You're one of the few whose ANCA moves with disease activity. Do you feel special? LOL :flapper:

RCOSSIO
03-11-2011, 02:54 AM
I started at 3000 and about 9 months (i think) I went down to 2000mg...now I am back at 3000mg. Thanks for the 4 weeks, i did not know that, I guess sometime we are wishing for a faster miracle.

BTW my love affair with ANCA is something I am devoutly fond of...PLEASE DON"T TELL MY WIFE!!! :w00t:

Sangye
03-11-2011, 02:58 AM
ROTFL We won't tell your wife about your little secret. :wink1:

The 4-week thing is what forced me onto ctx (and then rtx) to stop my severe flare in 2009. By the time we increased the Cellcept to 3,000 the Wegs dog was already chasing me down the street. :laugh:

Sangye
04-15-2011, 05:45 AM
I emailed Dr Seo today because it's been 10 wks since I started this latest round of rtx and I'm still not feeling that great. My lungs feel okay, but I still have tons of joint pain and low energy. He said it might take a bit longer for the rtx to kick in, and if it doesn't improve within a month I should let him know.

I hope the 2-infusion protocol I did worked as well as the 4-infusions I did last year. I have my doubts. Within 10 wks of my last round of rtx in 2010 I was in much better shape than this. However, I trust that Dr Seo knows the drug much better than I do.

delorisdoe
04-15-2011, 05:59 AM
You're one of the few whose ANCA moves with disease activity. Do you feel special? LOL :flapper:

This is very true for me as well...am i special? i have tried to be special all of my life.

leigh

Brooke
04-15-2011, 06:24 AM
I really hope the Rituxan kicks in and starts working Sangye!! Keeping fingers crossed!

pberggren1
04-15-2011, 08:13 AM
I hope your joint pains go away soon Sangye and that Dr. Seo is right.

Sangye
04-15-2011, 10:29 AM
Thanks you guys. I hope you're right. This is how I felt when I was on too low a dose of Cellcept. Not good.

pberggren1
04-15-2011, 11:18 AM
Give it 3 more weeks and if it has not improved I would want a response from Dr. Seo ASAP.

gurinbasra
04-15-2011, 11:45 AM
Sangye, I really feel for you because I think I had my Rtx around the same time as you and it frustrates me that with this disease, everyone is just so different! I remember how helpless I felt when I didn't respond to the chemo, and I was so sick and tired of being sick and tired! I guess time will tell and I certainly hope that's what it will take, hang in there - we're all keeping our fingers and toes crossed!

Take care!

Sangye
04-16-2011, 01:13 AM
Thanks Gurinder.

Phil, he said to wait a month. He generally gets back to me within a few minutes of emailing his receptionist.

pberggren1
04-16-2011, 03:01 AM
I'm glad to hear that Sangye. It is good he gets back to you very soon like that.

Meredith
04-18-2011, 10:00 PM
Had round 1 of Rituxan last Friday - did great. Had no problem taking it and instead of 6 hours it only took 4. Round 2 this Friday. Felt good all weekend. I would not think it would work that fast but had a lot of energy.

Brooke
04-18-2011, 11:12 PM
Awesome, Wonderful, Great, Yahooo for you Meredith!!!

Sangye
04-19-2011, 12:58 AM
That's great, Meredith. :thumbsup:

Sangye
05-04-2011, 12:35 AM
I've continued going downhill with increased joint pain, weakness and fatigue. I've even started getting the odd type of insomnia I only get with active Wegs-- extremely sleepy at bedtime but as soon as I go to bed I'm wide awake. I've noticed that when the Wegs dog is waking up it follows the exact same pattern with me: first joint pain, then increasing fatigue, then this odd insomnia, then lung symptoms, then nose and ear symptoms. It's happened so many times this way. I feel fortunate to have such a predictable pattern, since uncertainty causes the most anxiety for me.

I still have to do the stool tests that my PCP ordered. I'll go to JHU tomorrow for that.

I emailed Dr Seo all this and he said that if those tests don't show anything, then I need to do another round of rtx-- 4 infusions this time. I'm shuddering at the thought and also bummed because it's gonna mess up some scheduled things. I have tickets to see His Holiness the Dalai Lama in DC on July 6. The infusions take 4 weeks and it takes another 2-3 weeks for me to feel human after that, so I have to time it right. There is no way I'm gonna miss that. Ironically, the last time I saw him was in 2009, 4 days after my very first rtx infusion.

As much as I'm dreading going through 4 infusions of rtx so soon, I'm also really sick and tired of being sick and tired. Of course, there is the possibility that the stool tests will find another explanation for all this and I could skip the rtx for now.

ScreaminMeanie
05-04-2011, 12:40 AM
Oh dear, I want so badly for you to get better! And I don't want you to miss out on a much-anticipated event, either!

Sangye
05-04-2011, 12:50 AM
Thank you. It's such an amazing thing to see the Dalai Lama in person, I can't describe it. And to sit among the other Buddhist monks and nuns from all traditions is just glorious. July 6 is the Dalai Lama's birthday, making this an especially precious time to be with him. I don't care if I have to be pushed in a wheelbarrow, I'm not missing it.

ScreaminMeanie
05-04-2011, 12:56 AM
I would feel that way, too! I really, really, really hope you and Dr. Seo can figure out what's not working the way it's supposed to and get you to a much better place, healthwise.

Chris G
05-04-2011, 12:57 AM
I'm so sorry you have to go through more rtx rounds, knowing it will make you sick before making you better. But, you have just enough time to squeeze the treatments in before going to DC!! Hurry hurry! Maybe that trip will be just what you need to keep you going. :biggrin1:

Sangye
05-04-2011, 01:01 AM
LOL Fortunately I live in the DC suburbs so I don't have to travel far to get there. :biggrin1:

Brooke
05-04-2011, 01:05 AM
Oh man, so sorry Sangye. Why do you have to do a stool sample?
Hopefully it can be something easily treated and it's not Wegs.
If it is the Wegs (sounds like it is since you know your pattern), would they treat you with Rituxan this soon? Even with zero B cells?
If so, hopefully you could start them next Tuesday and be finished by the end of this month and then you would have all of June to start feeling better.
I had my last Infusion just last Thursday and I felt really tired and achy afterwards and did not feel good at all on Friday, then on Saturday and Sunday I felt better as far as tiredness and achiness goes but I had a stomach bug and had diarrhea and stomach cramps really bad, starting to feel better today.

Sangye
05-04-2011, 01:18 AM
I have to do a stool sample because I've been having diarrhea and abdominal cramping with anything I eat. I've gotten it to slow down by taking digestive enzymes and probiotics, but it's still not normal. It's been going on for several months. It might be some sort of GI infection which could be stressing my body and causing the Wegs to increase.

I'm glad you're starting to feel better! It's weird that you're also having GI issues. Do you think you had the bug before the rtx?

Brooke
05-04-2011, 01:55 AM
That is strange Sangye, us both having GI Issues. I did the 4 infusions, so it was just after this last one that I started feeling crumby. The morning before my last infusion, I was crabby, emotional, annoyed, stressed (probably because close to that time of month)..... Or I guess just starting to a bug or something. Sorry if TMI but I don't remember having diarrhea like I did, basically felt like water coming out.
I don't think I had a bug prior to my first infusion though.
I hope you get some answers really soon.

Sangye
05-04-2011, 04:17 AM
Brooke, I found this (http://www.gene.com/gene/products/information/pdf/rituxan-prescribing.pdf) info about rtx side effects. It says more than 15% of Weggies got GI symptoms like diarrhea in one of the rtx studies.

pberggren1
05-04-2011, 05:21 AM
I have a colonoscopy next week on the 11th. Hopefully that will shed some more light on my case as well.

Sangye,I hope the tests and stool samples will show something that you do not have to take the rtx so soon again. I just wish that you could feel better and get out for walks with your dogs.

Sangye
05-04-2011, 05:28 AM
Me too, Phil.

Brooke
05-04-2011, 11:15 PM
Thanks Sangye. Man, scary to read about possible effects of Rituxan...

Sangye
05-05-2011, 10:21 AM
Yeah, all drugs are like that you know? When I start a new drug I read the detailed list and then don't look at it again unless something has gone wrong!

ScreaminMeanie
05-05-2011, 10:56 AM
Same here!

RCOSSIO
05-06-2011, 09:40 PM
Sangye...when you start getting better...I VOTE YOU CHANGE YOUR AVATAR WITH A PIC OF YOU AND THE DALAI LAMA. I know u love your two dogs looking out towards Tibet...but after this RTX infusion a new you and avatar should be in the works,

GET BETTER SOON :thumbsup:

Sangye
05-07-2011, 01:55 AM
LOL They're expecting several thousand people at the event with the Dalai Lama, so there's no chance of me getting a photo with him. I'm considering posting a photo of myself, though. Been rolling the idea around in my head for a few weeks. I dunno.

Brooke
05-07-2011, 02:15 AM
do it, do it, do it!!!

Sangye
05-07-2011, 02:19 AM
I'm funny looking. :ohmy:

Brooke
05-07-2011, 02:25 AM
No, I bet you are just lovely!

RCOSSIO
05-07-2011, 09:20 PM
Weggies look funny...plus this our forum. The H--L with the non Weggies. There I said my peace, BRING ON THE NEW YOU!

delorisdoe
05-07-2011, 09:37 PM
is that not a picture of you in your blog?

Chris G
05-07-2011, 10:53 PM
I'm funny looking. :ohmy:

We're all funny looking with our big distorted puffy pred faces!!!

Or am I the only one????:ohmy::ohmy::ohmy:

Sangye
05-07-2011, 11:22 PM
is that not a picture of you in your blog?
Yeah, that's why I haven't felt the need to put one on here! :biggrin1:

marta
05-08-2011, 01:41 AM
LOL They're expecting several thousand people at the event with the Dalai Lama, so there's no chance of me getting a photo with him. I'm considering posting a photo of myself, though. Been rolling the idea around in my head for a few weeks. I dunno.

I am a whiz at Photoshop, I can make it happen you know.... just say the word.

Sangye
05-08-2011, 01:52 AM
LOL! Nice of you to offer, but it would actually be unbelievably bad karma to fake a picture with the Dalai Lama. The result of that would make what I'm going through look like a lovely walk in the park!

marta
05-08-2011, 02:43 AM
I figured as much, which is why I didn't just go ahead and do it.

marta
05-08-2011, 02:44 AM
I can however make us all look thin and beautiful using Photoshop.:wink1:

ScreaminMeanie
05-08-2011, 03:17 AM
I could post a picture of myself from, like, 30 years ago! ;)

marta
05-08-2011, 03:22 AM
I could post a picture of myself from, like, 30 years ago! ;)

All the pix I post of myself are pre Wegs.... can't stand the ones from this last year.... although I was quite svelt looking just before diagnosis when I lost a ton of weight.

delorisdoe
05-08-2011, 04:09 AM
there is only one photo of myself i ever let people see. lol. it is me at my wedding and it is the back of me. my dress was perty from the back.

delorisdoe
05-08-2011, 04:38 AM
there is only one photo of myself i ever let people see. lol. it is me at my wedding and it is the back of me. my dress was perty from the back.

i just tried to make it my avatar and this site said it was not a recognized photo...ya i know, thats why i wanted to use it.

Sangye
05-08-2011, 05:02 AM
i just tried to make it my avatar and this site said it was not a recognized photo...ya i know, thats why i wanted to use it.
ROTFL!! :lol::lol:

elephant
05-10-2011, 10:40 AM
Too funny!

drz
05-10-2011, 11:19 AM
i just tried to make it my avatar and this site said it was not a recognized photo...ya i know, thats why i wanted to use it.

How did it know? Was your camera on? :wink1: