Remicade update - responding but still unable to taper pred

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/15/2008 7:33 AM (GMT -6)   
After two infusions in a few weeks I have definitely responded- no more blood and consistently formed stools for going on two weeks.  However, after my second infusion I started to taper prednisone and in turn, pain started to increase the past couple days and bowel movements (still formed but softer) increased from 0-2 to 3 a day, so I am going back up to the 20 mg or so where I had settled on before.  Just trying to gage if a relatively quick response combined with tapering issues (steroid dependent a long time now, usually flaring full bore when I get to low doses eg 5-7.5 mg but the past 6 months even at 10) is a sign for better or worse.  If I can't get a real taper going and get to zero pred eventually, I am looking at surgery so I am interested in the experiences of others who have been steroid dependent on Remi.  I guess I will give this process at least a couple more months and see if I can find some adjunct alternative treatment to help get off the Pred, but I have tried just about everything over the years.
 


Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 mg pred, 100 mg Imuran
TCM, Probiotics (Primal Defense and others), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 11/15/2008 7:46 AM (GMT -6)   
Probiotic, after two infusions the Remi may well not gave shown its full effect yet. I'd suggest trying the taper again after another infusion or two. Are you on the usual induction schedule of infusions at 0, 2 and 6 weeks?
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 11/15/2008 7:46 AM (GMT -6)   
How are you taking the Pred, just once a day? I had to divide my doses up throughout the day or I would start getting symptoms as I got closer to when my once a day dose was due. I even went to so far as to split my dose up into 4x a day. You might give it a try and see if it helps. I'm not on Remicade but that was how I've always had to take Prednisone. Good luck!!!
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 11/15/2008 7:49 AM (GMT -6)   
I have been on Remi for 8 months now. When I started I was at 15mg pred with slight symptoms, and if I went below that I would flare. The intial response was ok, and I was hell bent on getting off of steroids. They tried 6mp with it, but it made me toxic at low levels so they discontinued that treatment. Now, the remi every weeks makes me sicker than a dog for a week post infusion but other 5 weeks...no pred.....are not bad but not remission. The biggest comlaint I have are the middle of the night mucus events...no stool or blood...just mucus....stools are formed most days, but I still have very low rectal inflammatin I guess causing the mucus...it is really maddening to go througha whole day with one or teo formed bowel movements and then have to get up three times a night to go and let the mucus out.....I wish ther was a magic bullet for it but I have tried a bunch of thingsw to no avail....the docs say it might be IBS.....I keep telling them that IBS would not wake me up in the middle of the night.....I have tried an antispasmodic the last two nights to no avail...oh the gas comes at night to......by 3 am its over and I usually sleep until 6 sometimes. It is a mind crushing experience to get so close but yet be so far...the pictures say my colon is 95% healed and that whatever I have is termed mild....If I could take the 5asa that would be nice, but they make me worse....I am at wits end but Im really not that sick so I guess I have that to be thankful for......its been a weird experience for my docs as well as they never have someone get worse the week after remi but i do.....so they are probably going to forgo the next infusion to see what happens....Last time I had not seen blood in ttwo weeks and was almost sleeping throughthe night and the morning after my remi it looked like the alamo in the toilet...too strange and too coincidental docs say......so we start over....been over a year in this flare....like I said not sick sick most days...just the constant reminder...I think the brain can be so impacted ny this disease its hard to shake sometimes....good luck

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 11/15/2008 9:23 AM (GMT -6)   
Currently I am in the process of tapering my pred. from 40 mg- I am down to 35 mg. I find that by the end of the day ( I take the pred in the morning) I start having symptoms again. I am going to split up the doses. I think this may work- many people have mentioned this as helpful.
 
I find it weird that pred works so quickly and then the effects wear off quickly. At least that has been my observation.
 
 
Jackie, 43

Pancolitis, DX Jan. 07

Lexapro, colazal 3x3, Sythroid, Protonix, Rowasa suspension

10 infusions of Remicade- doesn't work
tried 6MP - taken off because of health concerns

Prednisone and Levaquin added- October 30th


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 11/15/2008 11:10 AM (GMT -6)   
I started Remicade in July of 2007 and I wasn't able to successfully taper off the Prednisone until April 2008 -- just this past April. I was responding to the Remicade, but I had to shorten the interval between infusions from eight weeks to six weeks. If our steroid dependent it can a long time to taper. Go very slowly and try to be patient.
Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
11 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


invisible reflections
Regular Member


Date Joined Nov 2008
Total Posts : 23
   Posted 11/15/2008 11:10 AM (GMT -6)   
I don't have any experience with Remi, but I do with prednisone. I've found that splittling my doses of prednisone up throughout the day helps. I usually split it into three doses and use my pill cutter to split the pills. This really helps to limit the side effects like headaches that I tend to get when tapering prednisone. I carry a little pill holder in my pocket too so that I don't lose the pills.

Right now I'm tapering and I'm at 10mg. I can always tell when I need to take my next dose because after maybe 7 hours I'll start to get a headache. But anyways, in about 2 weeks I'll be completely done with my taper and off of prednisone! Yay!
Recently gone into remission!

Currently tapering off of prednisone from 50mg, currently @ 12.5mg and suffering from withdrawal symptoms : (

Colazal(generic)= 9 pills
Immuran (Azathioprine)= 3 pills (150mg)
Multivitamin

Diagnosed 10/07

Flares on Feb 08 and Aug 08


19 year old female college student taking one day at a time...
A little optimism goes a long way.
"Look at the sun and your shadow will fall behind you."


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 11/15/2008 1:00 PM (GMT -6)   
Maybe that was my problem. I had three doses of remicade and was perfect so I tapered my pred quickly and in a week I started having problems. Now I am in the worst flair I have ever had. They moved my remicade up two weeks and doubled my dose so hopefully that will help. I am trying to avoid going back on pred. I was on it for 7 months of the last year. It just isn't safe to use that long.
Jessica 27/F
Remicade
Entorcort 9ml
Lialda 2.4GM
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/15/2008 9:46 PM (GMT -6)   
Thanks for the input, everyone.  I have been splitting my prednisone into two doses, one after breakfast and one after supper.  I got some partial relief from pig whipworm eggs (TSO) but not enough for remission.  Staryting to think I will have to spend a small fortune to keep some TSO maintenance therapy going along with the Remicade.  I am also thinking of other stuff like home brewed fecal infusions (a healthy donor's poop up my *ss) for example.  Maybe blas,ting up the DMSO again, which I used to use topically to take the dge of flares. But that stuff smells.  I tried Imuran before and it had no effect, and to add it to remicade is scary given that I hear it is what is associated with the lymphoma risk for Remicade.  LDN is out because you need to be off immuno-suppresants.  Anyways, will slow the tapering down a bit for now.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 mg pred, 100 mg Imuran
TCM, Probiotics (Primal Defense and others), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 11/15/2008 11:41 PM (GMT -6)   
Sorry, no experience in Remicade here.

But the advice I got from both my GI and my endocrinologist was that splitting up prednisone doses is markedly more likely to produce adrenal suppression, which is very, very bad. Their recommendation was to take all the prednisone in one dose at the beginning of the day, when it more closely matches the natural cortisone surge. I did have to take medication for anxiety for part of that time, which stank, but I seem to have gotten out of it without adrenal problems, so I'm satisfied. If folks here are splitting doses without consulting with an endocrinologist first, I'd urge them to check with one.

Probiotic, when I was tapering prednisone, I experienced exacerbation of symptoms at every dose reduction, and it almost always settled out after a couple of days. It may be worth checking in with your GI or his/her nurse to ask about whether your symptoms with the taper are within that normal range, or whether they really call for upping the dose again.

landcruiser
Regular Member


Date Joined Jun 2008
Total Posts : 80
   Posted 11/16/2008 7:54 AM (GMT -6)   
probiotic....I would love some more info on your usuage and success with dmso.....I use it in horses and have seen it work wonders for inflammation....I have read reports of using it for uc but never actually talked with anyone that has tried it....

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 11/17/2008 6:21 PM (GMT -6)   
Hi landcruiser... I wish I could say DMSO has helped me alot, but instead, what it has seeemd to do is provide some short term, temprary relief when flares are especially painful. Though I really have to slather it on to the point of causing some s;uburn' like rash on my belly, as well as avery foul (a sort of mettalic rottne fish smell!) breath effect about 8 hours after application, it does privide a few hours of pain reduction in the gut. Perhaps for that, acupuncture would be more effective. But I need to find something to add to remnicade, it seems, which is not enough. Or else, I need to put up with a much slower pred taper, which is tough when one has been pred dependent for a long time.
Pancolitis 20 years ago, full med-free remission 10 years,
Flaring/simmering on and off ever since, allergic to all 5ASAs
10 20 17.5 15 12.5 10 mg 8 7.5 20 17.5 mg pred, 100 mg Imuran
TCM, Probiotics (Primal Defense and others), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, June 20, 2018 7:06 AM (GMT -6)
There are a total of 2,973,511 posts in 326,104 threads.
View Active Threads


Who's Online
This forum has 161101 registered members. Please welcome our newest member, Falksi.
392 Guest(s), 8 Registered Member(s) are currently online.  Details
Froggy88, redskinsfan, Confused2910, GuitarGERD, Pratoman, OriolCarol, three 5's and a jack, iPoop