I really don't know what to do now

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checkerjane91
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 7/10/2008 10:26 AM (GMT -7)   
Hi All,
 
My Gi's office called me back and they are determined that the Pred had nothing to do with the seizure.  They want me to stay on the 2 week at a time 10 mgs at a time taper.  I told them I wasn't comfortable with that, but the nurse kept telling me that they felt like if the Pred caused the seizure I would have had it few days after I started on the medicine.
 
I feel really frustrated and scared right now.  I told her, nicely and jokingly, they better think of a plan B because if I taper down to 20 and my colon freaks out I am not going back up in dosage.
 
Maybe it was just a fluke and it didn't have anything to do with it.  Who knows.
 
Thanks for listening,
Beth   confused
 
40 mgs of Pred
50 mgs of Imuran
3 Lialda
1 Canasa at night
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/10/2008 11:17 AM (GMT -7)   
I would call your primary and also get a second opinion, we have to be our own advocates. It took my doc's 7 years to figure out I had kidney disease and it took me telling them that the sulfasalazine I had been on for 7 years caused it (it's a side effect of sulfasalazine).
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 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


checkerjane91
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 7/10/2008 5:15 PM (GMT -7)   

Beth75,

Thank you for the reply!  That's a good idea on calling my primary.  He actually does LISTEN!

I don't know what it is with doctors not wanting to admit that an action they have taken had an adverse effect on a person.  Sometimes I think they get so wrapped up in looking for the scientific reasoning on everything it's hard for them to see the obvious as logical.

FRUSTRATING!!!!

Thanks again,

Beth


40 mgs of Pred
50 mgs of Imuran
3 Lialda
1 Canasa at night
 
 


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/10/2008 7:40 PM (GMT -7)   
I agree, then call your primary. I would consider a second GI opinoin. I'm frustrated just hearing about them not listening to you. Do you want me to call them and yell at them? Just kidding. Just remember, you know a lot about yourself and if you feel strongly about something, there may be a good reason for it. Keep us posted, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/10/2008 7:48 PM (GMT -7)   
well i started having seizures about three months before i got UC (i wonder if there is a connection?) and before surgery i had been on pred numerous times, very high doses for a long time, and never had any problems.

TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 7/11/2008 8:27 AM (GMT -7)   
I don't know if this will be helpful or not, but here it is: I refused prednisone after I took it once and had remission (after the side effects wore off) for a whopping 3 weeks. My reasoning is that I didn't want to become pred dependent and needed to find a maintenance drug that worked for me first. Anyway, I switched docs and the new one changed my meds (Lialda to Asacol- 12 pills/day). It took a few weeks (6?) but I'm not flaring anymore and I almost have a normal colon (just 5 more cm's to clear up!).

Also, could it be your other meds causing the seizures? What kind of seizures are they? I'm not sure how bad your UC is, but you may want to discuss changing or increasing your other meds with your doc. I hope you feel better soon!
Tressa 35 (F)
probably pancolitis, but almost in remission!
Canasa twice/day to get that last 5 cm
Asacol 12/day


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 7/11/2008 8:52 AM (GMT -7)   
A second GI opinion wouldn't be out of the question. Maybe your other doctor could recommend someone?

The frustration and stress certain isn't helping anything.

I hope you get some good answers soon!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
5mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


checkerjane91
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 7/11/2008 9:49 AM (GMT -7)   

Thanks for all of the support!  I don't know what I would do without this place.

Belski - would you mind calling them and yelling at them for me?  Maybe I should have my mom call - she's pretty hacked off at them right now too :) 

I am tapering off in 5-7 day intervals instead of every two weeks.  I am tired of taking chances.  Even on 40 mgs, I was still having symptoms so I don't this was the "miracle" drug for me anyway.  I will just suck it up and wait for the Imuran to kick in.  Or, I will call the doc and tell them that I am tapering, which won't be a lie, and that things are getting worse and that I need plan B.

I have checked on the possible side effects of my other meds and none of them list seizures.  I was checking again last night about Pred, and it lists seizures; numbness and tingling in hands, feet; and rapid/irregular heartbeat.  I have all of those!!  I never had a problem with them before I started the Pred two weeks ago.

Thanks Again!
Beth


40 mgs of Pred
50 mgs of Imuran
3 Lialda
1 Canasa at night
 
 

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