update on Lisa Marie

[LisaMarie]

ok...i just got my packet from my second visit to Mayo...I go back in August...I am in the R....but have to stay on 10 of pred and must take RTX as soon as my B cells return...my IGg is sloway returning but still below normal...Since it has effected my bronchioles....Dr Specks does not want the beaat to wake up....so even if I will never be who I was over a year ago i can adjust to this...when i take RTX this tim:w00t:tom of a lake somewhere....i will remain on prophlaytic bactrim ds and acyclovir daily for a long while...lasix and potassuim...calcuim with d and a prenatal vitamin along with my nexuim,zantac and clonazapam....hope everyone else is well...i am allowed to excerise now...starting slow ...like a turtle:w00t:

[LisaMarie]

i meant i hope the mack truck remains at the bottom of a lake while i take the RTX...lol...one day i will type right...pray the beast stays sleeping

[pberggren1]

I hope the rtx works out for you Lisa. Did Dr. Specks say if he knew how long before your b cells start to return again?

[Psyborg]

Sounds like good news Lisa. I hope things continue to improve for you.

[elephant]

Hang in there Lisa, take the exercise program real slow. I had to start from rock bottom, but it was worth it.

[LisaMarie]

Phil,
I have to have them checked each month...he expects them to return any time..so I have to be careful.
I am starting 2 days a week for 30minutes...my goal is target heart rate of 130 and to build up to 5 days a week by December....so i will take it slow...i am only allowed walking,swimming,and bike riding.....light weights or bands...so maybe by christmas i will shed some of this weight....i would love to be drug free but it does not seem to be in my future so i will take what i can get......gotta

[vdub]

I will never be who I was over a year ago
Isn't that a bummer?! I think we are all in that situation. I try not to think about.

I don't think I could do much exercise. My arm and shoulder muscles/joints hurt too much. Knees and calves hurt, too, but walking is one thing I can do. I always preferred running to walking and for years I ran 6 to 8 miles a day. I have garbage bags full of race and marathon t-shirts. I actually kind of enjoy walking now.... Good thing, too, because running is definitely not ever going to happen again....

You hang in there and I hope everything goes well with your exercise program....

[LisaMarie]

Ok Guys...sent my blood off to Mayo to see if my B cells have returned...if so it will be rituxan again....I am hoping they are still gone ..I really want to enjoy the 4th of july with my family...we are finally geeting the pool opened...yeah....still running temp under 101...so atleast I am holding steady...Hopefully Sangye has found a home for the mack truck so it will not come out and visit any of us ...have a great day yall

[Sangye]

I hope you get to enjoy the holiday, Lisa Marie. The Mack truck is still parked on top of me so you need not worry. :wink1:

[LisaMarie]

Sangye,
We neeed to find a lake to park it in...or maybe all the flooding around me can wash it away to parts unknown...hoping it leaves you soon.....I do have a question can WG cause gout like symptoms...one of my toes is swollen...but not red or bruised ...i can not bend it and it hurts like h*** ....so either I hit it and do nor remember or it is just anothe one of my wierd things......should know by the end of the week what my b cells are.....:wink1:...Hope you get to feeling better soon

[Sangye]

That was one of my earliest symptoms of Wegs. Of course you can still have gout, but if your labs are normal it's Wegs.

[LisaMarie]

Ok heard from Mayo...they think it is WG waking up...I have 3 lonely B cells....so may I Can wait till June..I will find out tomorrow...I am still fatigued and continue to run temps and my WBC is up to 11.3 which is high for me since I have been sick...so I will wait...keep ya all posted

[Sangye]

I hope you get on it as soon as possible. You've already experienced how quickly Wegs can become a problem.

[vdub]

That is really too bad.... Seriously hope they can get a quick handle on it.... Good luck and keep us informed...

[LisaMarie]

So much for the Big R lasting a long time...guess I will be one of those fickle pickle types:glare:

[maria garcia]

In a blood panel how whee would I find B- Celll? Is it called something different? I was looking at my daughters blood work and I didn't find B cell or IGg.

[Sangye]

Maria, unless your daughter is being given rituximab, they won't order a B cell count. IgG isn't a standard test, either.

[LisaMarie]

For whatever reason when I took RTX and Imuran I killed all my B cells and my IGg...not just my B cells....Like I said I am a fickle pickle and WG never treats any of use the same nor do the treatments.....still waiting on Mayo

[LisaMarie]

Ok Mayo called...had 2 choices ..head up there to be evaluated or be seen asap by physician here..So i am being seen at 1530 today my Wbc has jumped to 16.1 sed rate 21 crp 3.5 and I have a left shift on my CBC test...so hopefully it is an infection and not WG waking up...will have my doc call mayo after he sees me...ughh I hate this roller coaster:mad1:

[marta]

I hope it's an infection LisaMarie. Funny how things change and getting an infection is the prefered option.... at least it doesn't involved puffing yourself up on pred and killing your cells off with chemo. Your sed rate and crp aren't that high relatively speaking, so hopefully you're right and this is something that can be taken care of pronto with antibiotics.

Hey, people pay lots of money to go on rollercoasters, so we get this ride for free.... :unsure:

[vdub]

Hey, people pay lots of money to go on rollercoasters, so we get this ride for free.... :unsure:
<snicker> Great quote, marta....

[Sangye]

For whatever reason when I took RTX and Imuran I killed all my B cells and my IGg...not just my B cells....Like I said I am a fickle pickle and WG never treats any of use the same nor do the treatments.....still waiting on Mayo
IgG can fall with any of the drugs or with Wegs itself. Sometimes they give IVIG treatments if it goes very low.

[LisaMarie]

Ok went back for check up on Monday after being seen on Friday...B/P on Friday was 80/52...low for me ...assumed it was part of infection since i had a left shift on my cbc...then Monday I was 90/48...still fatigued and tired coughing uo thick yellow junk...no green ..thank God...I have been on levaquin since friday...cxr clear ...so who knows what is going on Dr Specks is out of town so dealing with one of his partner...My B/P is still running low but all of this I can deal with...suppose to hear back from Mayo today...so we will see...and just for the record...I HATE ROLLER COASTERS...LOL....give me a water slide any day,...hope you all have a great day