Really need some advice on whether to increase the PRED

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taljones
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/12/2008 9:38 PM (GMT -6)   
Hi everyone!

I am really not sure how to proceed at this point. I was hospitalized in Sept/Oct, and when released, kept on
40 mg of pred, then we tapered down to 15 mg over several weeks. I had a minor flare, we increased to 20mg, had another minor
flare, we increased to 30 mg, and now I'm back at 40 mg since Tues of this week, with the big D - no form in stool at all.

It's the weekend, and my GI isn't in till Tues, but he did mention that if 40 mg does not work, then to jump up to 60mg.

I am concerned about taking a high dose like this, but at the same time I don't think this flare is responding to the 40 mg dose that I am currently taking for the last 4 days. There is no visible improvement. I am only going once a day, but it's all D.

Any advice from people with experience on pred - should I tough it out and see if it improves, or am I just letting the inflammation
get worse as more time goes by?

My other concern is that while the GI is waiting for the Imuran to kick (started it Mid Oct), he has begun steps to get the Remicade as well - but given how poorly I am responding to the pred at 40 mg, I am worried that I may not even be able to stretch it out, till after the holidays to see if the Imuran really takes hold. I have a funny feeling that I'm just going to wind up flared up again, and at the hospital.

Any advice would be greatly appreciated!
Male, 31 years old. Daignosed with UC in Dec 2007.
Had remission with Salofalk for 5 months, then began to flare
and switched to Lialda, which did not work.
Recently hospitalized.
Now on 40 mg of Prednisone and 175 mg of Imuran


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/12/2008 10:03 PM (GMT -6)   
Does your GI have anyone (a GI resident, for example) covering his phone line while he's out of the office?

taljones
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/12/2008 10:40 PM (GMT -6)   
Hi Charlotte!

He does not have a resident or anyone covering the phones. That's very frustrating, cause he always wants me to call him before
we make a decision about the meds, but he's never around when I'm flaring up!

He works the hospital on Mon and Thurs - very difficult to reach. And works the office Tues and Wed. So if I'm lucky and my flare coincides with his schedule, then perhaps I get a response. But times like now, I feel like I'm on my own.
Male, 31 years old. Daignosed with UC in Dec 2007.
Had remission with Salofalk for 5 months, then began to flare
and switched to Lialda, which did not work.
Recently hospitalized.
Now on 40 mg of Prednisone and 175 mg of Imuran


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 12/12/2008 11:05 PM (GMT -6)   
I say give the pred more time. I've been on and off of it many times. Sometimes it takes a week or two on one dose to see any improvements.
Age: 30
Sex: Yes please!
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day, Mesa rectal meds
Supplements: calcium, and multivitamin
No. of colonoscopies: 5
Last scope: 6/7/08-everything looked ok.
 
 


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/12/2008 11:07 PM (GMT -6)   
Ack. If you call his phone number now, no one picks up the phone at all? So weird.

I am not a physician, but in your shoes, I held it at 40 for a couple more days. Four days in "gastroenterological time" is not that many. On the other hand, I never had a flare bad enough to put me in the hospital, either.

It took three-four months for Imuran to really kick in for me, btw. Unfortunately (?) it did not prevent me from getting dysplasia, but my life is a lot better since surgery. If you start thinking about that, I'll have loads more advice! Take care of yourself.

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/12/2008 11:32 PM (GMT -6)   
As far as pred goes, I agree with jars05 that it can take up to a couple weeks, or even 3 in really bad cases, for an increased dosage to truly kick in. Can you stand the symptoms i.e. is it just D or is there still blood and terrible pain? If it was just D I would try sticking it out a bit more. Also, I find the more I distribute the pred out (eg morning and night vs all in the morning) the more effective the pred seems for me... that said, i know that for getting off pred, and for emulating the body's own cortisol production, having it mostly or even all in the morning is the official party line. But in bad flares my body can;'t stand going without any pred for that long. (Currently I am doing 10 am, 5 with dinner). Hopefully Remicade will start your pred coming down. It takes me around 4-5 days to notice remicade kicking in. Only time will tell if it gets me off pred though. Best of luck.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 15 mg pred, 100 mg Imuran
TCM, Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 

Post Edited (Probiotic) : 12/13/2008 1:22:09 PM (GMT-7)


taljones
New Member


Date Joined Dec 2008
Total Posts : 9
   Posted 12/13/2008 12:14 PM (GMT -6)   
I wish to thank all of you for your feedback!

I'll give it a few more days. It's just D at this point, no blood so far, but I've seen it like this before and the bleeding is usually not
too far behind.

Charlotte, may I ask you - how did you know that the Imuran kicked in? I've been taking it since Oct and it has not really helped me
notice any real change. There were weeks where I felt like I was coming down with the flu, and felt very tired, so I knew the drug was
acting on my system, but as for the colitis, I did not notice anything drastic.
How did you know it was working for you, especially if one is also taking pred in conjunction (which I am).
At which point does a person decide, "ok, this treatment is just not working for me?" With regard to the Imuran?
Male, 31 years old. Daignosed with UC in Dec 2007.
Had remission with Salofalk for 5 months, then began to flare
and switched to Lialda, which did not work.
Recently hospitalized.
Now on 40 mg of Prednisone and 175 mg of Imuran


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/13/2008 12:31 PM (GMT -6)   
     I have a question for you tal.  What is your diet like?  If you are drinking coffee that may be contributing to your loose bowels.  Have you tried any rectal meds?  How about probiotics?
      I can't understand a GI doctor who takes off for the weekend and can't be reached.  In my GI's practice there are three other doctors and you can ALWAYS get ahold of one of them, weekends, middle of night, etc.  I was hospitalized in May and my GI doctor was in contact with the ER physician at 2 a.m. on a Sunday morning.
     I am also on 6MP.  It does take about three months along with the prednisone to kick in.  I had to take prednisone for seven months this past year before reaching remission.  Doc not happy about it and neither am I but it finally worked.  Remicade is NOT an option for me.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


downs
Regular Member


Date Joined Dec 2008
Total Posts : 76
   Posted 12/14/2008 7:00 AM (GMT -6)   
you guys think the probiotics work>? i feel like i flared when i started them? unless it was a co-incidence
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