What questions would you ask for 2nd opinion?

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/18/2008 10:20 AM (GMT -6)   
going for my 2nd opinion this Wed at the Chron's and Colitis Center.
 
here are my issues:
1. I can't take any 5ASA's for now b/c of my kidney problems
2. I am not sure Azathioprine is working for me
3. I am tapering down pred and am at 10mg currently
4. b/c of my kidney disease, my Nephrologist may want me to get off the azathioprine and get on cellcept.....but don't know if the azathioprine is helping me or not at this time.  I don't think it is but......don't know for sure.  (cant be on two immune suppressors at the same time).
5. If I end up on remicade and it does not work for me, what is the likelyhood of being able to get on a Humira study or what is the FDA approval status?
6. Will ask about children
 
I have other questions I am going to ask as well, they are all bouncing around my head, I will put them down tonite.
 
Just wanted to see what some of you would ask, given the chance to sit down and really talk to a Dr. at a top hospital, it may help me with my questions. I really want to use this opportunity for all it's worth and dont want to leave, thinking, DOH!  shocked   should have aksed that.  I will be writing all my questions down in my trusty little notebook and bringing along my own copy of my medical records (they already have a copy).  And pic's from my last colonoscopy Apr 08.
 
Please let me know, TIA!!!
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!
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/18/2008 11:17 AM (GMT -6)   
Beth,

You probably won't like this question but I would ask the consult at what point should you seriously consider surgery and if you had surgery is it possible your kidney condition will improve? I can't tell byyour signature line how long you have been on prednisone but your primary goal (which you probably know by now) is to get off prednisone for good. I would ask them for a timeline on that and if you can't successfully taper off prednisone how long would they be willing to leave you on it before recommending options?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/18/2008 11:31 AM (GMT -6)   
Hi Sue,

Nope, not freaking out......yet, lol. I have kind of come to accept that surgery is a real possiblity for me, so hearing it does not send me into a tizzy like it did before.

I will definitely ask those questions, thank you. Mainly I am on pred for my kidneys, though I did up it to help me deal w/my last flare. I should be going down to 5mg and then 5mg every other day, not sure how long for that. I have a small pain in my lower back and am hoping it is non pred related but will definitely ask!

I am scared to go off azathioprine and onto cellcept and flaring up and having to up my dosage/stay on pred, but it may be what I have to do to get my kidneys into remission. I am hoping there are other alternatives for me.

UUUgh, I hate pred! now that I am down to 10mg, my face has cleared up a lot in the past couple of days, thank goodness! I am supposed to go down to 5mg tomorrow, but I am going to wait a week and then go down to 7.5 for two weeks, then down to 5mg, to do a verry slow taper.

btw, coming up on my one year pred anniversary, was at 60mg for one month, then 60/40 alt days for 2 mos, then 40mg a day for 4 mos then tapered down to 5mg over a month or so and was at 5mg for 1 month then up to 40mg for 3weeks, then tapered by 5mg and now at 10mg.


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!
 

Post Edited (Beth75) : 8/18/2008 11:36:54 AM (GMT-6)


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/19/2008 10:28 AM (GMT -6)   
bump.........
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!
 

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