My neurologist is back in my good graces, but my GI is not

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Regular Member

Date Joined May 2008
Total Posts : 61
   Posted 7/9/2008 6:44 PM (GMT -6)   
Hi All,
My neurologist called me back today, as he has been out of town until today, and he upped my seizure meds.  So, I feel good about that.
I called my GI yesterday and asked for a faster taper schedule and to see if I could start supplementing with the steroid enemas because I read that very little gets into your bloodstream with the enemas.
Yesterday, the nurse told me she talked to my GI about the steroids and the seizure and they really don't think they are related.  She asked me what my neurologist said about it, and I told her that I hadn't talked to him yet.  I explained to her that it's for my peace of mind that I get off of them quicker than the scheduled 6 weeks.
And I shared my point-of-view about the irony of not having a seizure for three years and then having one now.  And I also told her that my UC symptoms are very minimal, etc.  I just wanted to get on the enemas to keep it that way because I am afraid of going south again since I am tapering off quicker.
Anyway, she went on to say that if the steroids caused it, she thinks I would have had one within a couple of days.  Okay, my opinion on that is that I am on medicine for seizures, and it probably took a while for the steroids to build up in my system.  Then she said that I would have had another one by now.  My opinion on this is that I started tapering down. 
So, the nurse was going to talk go my GI again yesterday and call me back today.  Guess what?  NO PHONE CALL FROM MY GI TODAY!!!!!!!!!!
You can bet that's the first number I dial in the morning!
Thanks for listening!
40 mgs of Pred
50 mgs of Imuran
3 Lialda
1 Canasa at night

Regular Member

Date Joined Jun 2005
Total Posts : 213
   Posted 7/9/2008 6:59 PM (GMT -6)   
Sorry - there is nothing worse than feeling like your doc isn't on top of things. Hope they get ya taken care of soon!
34 year old female, Diagnosed Ulcerative Colitis 5 years ago
Current Meds: Remicade every 6 weeks, Prednisone 10mg (tapering), Prevacid, Sustenex, Lialda, Lexapro (anxiety), Synthroid, Iron, vitamins, Fish Oil
Expecting first child 12/08 via gestational surrogate!!!!

Veteran Member

Date Joined Dec 2005
Total Posts : 3238
   Posted 7/9/2008 8:03 PM (GMT -6)   
Hey Beth. Sorry you are going through this. Are you in remission? The reason we have to taper slowly is so our bodies can get adjusted to a lower dosage of the steriod. Too quickly and our bodies can freak out (for lack of a better term). Are you still at 40mg? Are you supposed to be tapering 10mgs every 5-7/days?

I would definitely call the doctor back. I hate when they don't call you back! Keep us posted.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium
Co-Moderator UC Forum

Regular Member

Date Joined Apr 2008
Total Posts : 499
   Posted 7/9/2008 8:56 PM (GMT -6)   
Don't you wish they would just listen to you? Keep calling constantly and politely leave messages. Call all of the numbers you can, like the nurse, the appointment desk, etc. Leave messages with everyone, but be polite. Call every 20 minutes until they return the call. What is it they say? "the squeaky wheel gets it done?" I can't remember the exact saying. I think they should do what you are asking. I hope you have better luck tomorrow. Take Care, 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!"

Regular Member

Date Joined Feb 2005
Total Posts : 369
   Posted 7/9/2008 9:16 PM (GMT -6)   
sorry to hear you are dealing with this. I agree with the previous poster. Call every 30min. tomarrow, do it in a nice manner, but be persistant. Someone who has had such a serious concern,should get a call back that same day!!! Good luck!
2003, dx moderate UC
2000, dx selective IGA deficiency w/ anti IGA antibodies
2000, dx Antipholipid Antibody Syndrome
1999-current, chronic hemmoragic ovarian cysts, w/ partial ovary removal
1977, complete reconstruction of foot after lawnmower accident (chronic pain)
6mp 75mg, prednisone 40mg (just starting meds again)
percocet 5mg 3x day
potassium 3x day

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