2nd Opinion Report/Update

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/21/2008 8:50 AM (GMT -6)   
So I was super prepared for this and left my notes in the Dr's. office.......DOH!
 
It went really well, spent about an hour or so.  Went to the Chron's and Colitis Center in Boston at MGH.  The Dr. I saw also has knowledge of the Kidney's and will be speaking to some kidney Dr.'s.
 
For my UC, at this time he feels that I am doing well and is more concerned about my Kidneys.  I am at 10mg of pred and not flaring, he says that I can get on Remicade, Humira or Cymzex (I forget the spelling) there if needed.  He agree's w/my other Doc's that it would not be good for me to try 5ASA's again (b/c that may have caused my MCD) and not sure what would happen to my Kidneys if I did.
 
He did say that he has not had someone like me before with UC and MCD and would be interested in doing a case study on me w/my Nephrologist to see if Remicade would put my MCD into remission.
 
This all hinges on what my next lab's say on 9/8, if I am in remission or headed that way, then I will stay on the same course I am now.....the azathioprine.  I am not completely confident that aza is working for me (I am doing well now on 10mg of pred.).
 
There are 3 options:
1. If my MCD is in remission - stay on aza and see how it goes.
 
if MCD not in remission
2. Go on Cellcept and off aza - possible flare up
3. Go on Remicade and off aza - possible flare up and do I really want to be on this, instead of aza (which I don't even know if it's working or not).  I'd prefer to take pills than get infusions every 8 weeks, I think???  Also insurance wise, if I ever lost ins. for whatever reason it would be easier and cheaper for me to be on aza.
 
Also, I emailed him to get clarification on a couple of questions I had but forgot what he said.  If I go on Remicade and then I stop the Remicade, can I go back on it?
 
He was very good, did not rush me, really listened, confirmed a lot of things I already knew and is my key to Humira and Cymzex if I need it.  I feel good to have that connection established.
 
We talked about pregnancy and surgery, pretty much stuff I knew already and what others here post.  Pregnacy, could be good, bad or in the middle.  Surgery, could be a possibility but there are other meds I can try.  I brought the pic's from my last colonoscopy on 4/08 and he was very pleased with those and thought my colon looked really good.
 
I am still trying to remember it all.  Thanks again everyone for all your help!
 
 
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 8/21/2008 12:01 PM (GMT -6)   
Beth, I am going to the Chron's and Colitis Center at Mass General on Monday for a 2nd opinon/treatment options. My current doseage of Pred and Lialda are doing nothing for me. All though I was recently diagnosed with UC, i'm going through my first really vicious flare. I have to start school in two weeks, i'm hoping there is light at the end of this tunnel.
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
Lialda 4.8gm/Day
Prednisone 60mg/Day


quincy
Elite Member


Date Joined May 2003
Total Posts : 31006
   Posted 8/21/2008 1:34 PM (GMT -6)   
Awesome to hear Beth....love the case study part! I want an autographed copy of it..lol!

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/21/2008 2:36 PM (GMT -6)   
sure Quincy! I wonder if they would put a picture of my bum on the cover??? he did mention that I was phenominal........i'm sure he meant me and not my two diseases of course!

Apetro - glad you are going there, what I really like was that we sat down in his office and he made me feel like I had all the time in the world, really listened and we even had a couple of laughs and I got to say everything I wanted to. My friends Dad suffered for 20 years and finally went there, he is on Humira and loving it and life! Unfortunately the pred he was on really damaged him and he is looking at hip replacement surgery.

I brought with me a one page history about 5 mini paragrahs of the history of my diseases, he really liked that and asked me to email it to him. That was also good b/c when I got there and sat down I was starting to go all over the place and then was like wait a sec I brought a brief history, it really helped me stay focused and he appreciated it too. I also printed out a med list, med/dosage/start date/ any questions I had.

I am so sorry you are flaring, and hope you can get it under control soon. Let us know how the appt goes. I'd be curious to see if they recommend Imuran/6-MP, Remicade or Humira.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 8/21/2008 5:32 PM (GMT -6)   
Glad to read that your appointment went well & you got time to be heard. I think that's the big difference with IBD subspecialist gastros-- they really LISTEN because they are interested in these bloomin' ailments we have, and God bless them for that. My own subspecialist sat with me for 45 minutes at my 1st appointment & took copious notes on what I was saying. It did so much for my resolve to fight the awful flare I was in at the time & achieve remission. You really have come a long way from the pit you were in last fall & hopefully, this consultation will lead to even better treatment. MitzMN will also be happy to find out that you went for the subspecialist's opinion-- remember, she wanted to drive you there! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/22/2008 8:33 AM (GMT -6)   
thanks Old Hat! Yes, you are right, having him understand made me feel so much better, it's so complicated. I do remember Mitz was ready to drive me there!!!

thanks for being there for me since my hell flare last Oct!!!
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 10mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5191
   Posted 8/22/2008 10:45 AM (GMT -6)   
You're very welcome. It was terrible that you got a double whammy between the kidneys & colon. Actually, you did us all a huge favor by bringing to our attention the fact that UCers can develop such complications as MCD from Rx meds! Better to be informed & aware, just in case side effects crop up that should not be ignored. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 648
   Posted 8/22/2008 1:43 PM (GMT -6)   
Hey, Beth:

I'm so pleased you've gotten in to see a specialist at Mass General (???) and that he's exceeded your expectations about what you SHOULD get from a doctor. It is sometimes amazing when you feel like your doctor actually heard and understood what you said instead of thinking about his/her next appointment. I have great docs here (mostly) and they wouldn't do that, and I'm helping my 77 year old mom now with her doctor appointments and was very impressed with the gastro she ended up with and I will soon be making an appointment with him as well.

Anyway, back to you. I hope the Aza works for you. I've found it to be just so wonderful for me. Because of your kidney problems, I worry about you. Wouldn't it be great if you got on Remicade and it fixed both of your problems?

You're on the road, Beth. You're on the road to better health and a functional life. I'm so darn happy for you, by golly, I have goosebumps and tears in my eyes!

I don't hang out here much anymore. There was a few months I never stopped by, and lately, I've bopped in about once a week. I'm glad I stopped by today and read about your good news!

Hugs,
Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri

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