Update, Hubby's GI Appointmen

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RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 1/25/2008 4:44 PM (GMT -7)   
Well GI appointment went well today.  In the past, we have really felt a personality hiccup with this guy and have been talking about finding someone else. Today was very, very different.  We asked some intelligent questions, and we let him know that we've been really trying to educate ourselves and become informed and blah, blah, blah.
 
Suddenly this guy opens up and becomes a wealth of information and and explanations, showing his pictures, reports, notes he made, etc!  We know now exactly where DH's problem areas are:  defninate ulcerations at end of lower GI (isn't that the terminal ileum?) and lower portion of left colon.
 
Doc finally says "this is still out of control" and now we need to try prednisone.  So, we started that today.  Schedule is 40mg for 2 weeks, then 30mg for 2, 20mg for 2 and 10mg for 2.  Does that sound about right?? I assume this is considered a slow taper?
 
GI seems confident that this will knock the Crohn's into remission, take care of the fistula, and also relieve him of his pain (acknowledging that the pain is related to the Crohn's).  He says he sees no need to go to a rhuemy yet, that the prednisone will do the trick.  YAY!  Never thought I would be cheering for the steroids, but he needs something for this excruciating pain he is in constantly.
 
GI also upped his pentasa to 9 pills per day from the current 6.
 
OK, so, please tell me the good, the bad and the ugly about the prednisone!  I don't want to know what I can already read in printed material: I want real life stuff.  What did you experience, how did you cope with side effects and was it worth it?  Did you get the relief you were hoping for so that the side effects made it a fair pay-off? Hoping here to not regret requesting this meeting with GI to ask for prednisone in the first place!
 
Thanks and be well.
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


stkitt
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Date Joined Apr 2007
Total Posts : 32602
   Posted 1/25/2008 4:55 PM (GMT -7)   

Hey Good for you, sounds like you were pleased today with your Dr.

My hubby has been on the Prednisone several times.   Yes it works, and he soon developed a moon face which he hated but it always goes away after he is off the med so  he has lived with it.  Also he had trouble sleeping, late to bed, early to rise. 

Our one major problem was when he fell off the ladder and cut his lower leg over the shin bone.  Very difficult to heal so we had some issues with that. Not a lot of skin on that part of your leg and we struggled to get the wound to heal, but made it with the help of a great Internal Med Doctor at the time.

I am sure you will receive a lot more input from the members. :)


 
Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
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petittarte
Veteran Member


Date Joined Apr 2006
Total Posts : 686
   Posted 1/25/2008 5:41 PM (GMT -7)   
I'm the odd duck. Prednisone always gives me bad D and horrifically foul gas.
Jodi

Remicade and 6MP


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 1/25/2008 5:50 PM (GMT -7)   
I am also a little odd. I love Pred!!! On a short term basis of course. I don't get the moody tempermentalness that some people get and don't gain weight on it. I feel 100% better in six hours. I do have to take it first thing in the morning though or I don't sleep well. The dose and taper you describe seems moderate. Once you get to 10mg he may have you go down slowlly from there rather than just stop.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/25/2008 9:01 PM (GMT -7)   
Personally, I don't think that the pred. will heal the fistula. It actually slows healing.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 1/25/2008 9:09 PM (GMT -7)   
I haven't had a fistula, so I don't know about that. For me the worst problem with the Prednisone is the insomnia. I was always a great sleeper, so it really threw me. My doc gave me .25 mg of Xanax, which does help, but then I worry about getting addicted to the Xanax! Second, I notice that every time I taper down, I'm extra tired that day. I have had some jittery feelings and weepiness too. In the past when I took Pred. it helped my diarrhea and cramp symptoms right away. This last time it didn't work at all, and then I found out I actually had Salmonella, and the steroids made it worse! It took over a month to figure out what was going on,,,,but I doubt that will happen with your hubby. I would also advise that when he gets to 10mg, that he then taper to 5mg, and then 2.5. It makes it easier to tolerate
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares


CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/26/2008 11:38 AM (GMT -7)   
Prednisone threw me into my first full on remission I've ever had. I was so excited: my crohns symptoms were completely gone. I had complete control of my bowels, no cramping, nada. My arthritis was also completely in remisision. No joint pain at all. I didn't even need to take Celebrex. Two rashes that I had had for over ten years completely cleared up. I was in heaven.. or so I thought. Then the side effects kicked in. I became so angry, and I just had zero control over it. It was a full-blown case of "roid rage". Then shortly after that, I became severely depressed. In spite of all the great results, I had to discontinue the pred.

Just be aware that the mental side effects *are beyond his control* if he experiences them. If he gets mad, let him get mad. Don't get mad in return, and bite your tongue if you have to. He doesn't mean anything he says, it's just the steroids talking. But hopefully, this nasty potential side effect won't hit him. It doesn't happen to everyone. Just be aware that it *could*.

I sure hope your hubby finds some relief.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 1/26/2008 3:42 PM (GMT -7)   
CrohnsDaddy said...
Prednisone threw me into my first full on remission I've ever had. I was so excited: my crohns symptoms were completely gone. I had complete control of my bowels, no cramping, nada. My arthritis was also completely in remisision. No joint pain at all. I didn't even need to take Celebrex. Two rashes that I had had for over ten years completely cleared up. I was in heaven.. or so I thought. Then the side effects kicked in. I became so angry, and I just had zero control over it. It was a full-blown case of "roid rage". Then shortly after that, I became severely depressed. In spite of all the great results, I had to discontinue the pred.

Just be aware that the mental side effects *are beyond his control* if he experiences them. If he gets mad, let him get mad. Don't get mad in return, and bite your tongue if you have to. He doesn't mean anything he says, it's just the steroids talking. But hopefully, this nasty potential side effect won't hit him. It doesn't happen to everyone. Just be aware that it *could*.

I sure hope your hubby finds some relief.

Hmmm.  This concerns me a bit.  He is also currently weaning off of anti-depression meds that we felt weren't really doing anything for him, so he figured why take 5 more pills than necessary.  He has suffered some depression over these last months that he's been dealing with all of this.  I think though that if the meds aren't making him feel better, why take them.
 
The insomnia might be a concern as well for him; he has been taking ambien for a while now but has noticed that that isn't helping much anymore either!  So he is already having insomnia! 
 
Yesterday he tried taking the pred. 2 pills x twice a day--he noticed that for him, he was peeing more than normal for a few hours after the first dose.  Second 2 pills then he spaced out, and has spaced them out today.  Not noticing the peeing more often today.
 
So far, I think it is starting to ease things; but he is also still taking the percocet. He's trying not to get his hopes up too high at this point I think.  I can't say that I blame him--he has been dealing with this pain for almost a year now!
 
Thanks for the replies and I keep y'all updated!
 
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 1/26/2008 5:00 PM (GMT -7)   
I hope he responds quickly to the prednisone - with me it works very well, very fast. I have a love/hate relationship with this drug. I love it because it works for me when many medications don't, it's just I always have trouble with the taper. I start showing symptoms again at around 15-20 mg. Before I went to remicade, I was steroid dependant. Hopefully this will not happen to your husband. I too have trouble sleeping and need sleeping pills when on prednisone. I also gain weight (which is not a good thing for me, as I'm one of those fat crohnies). My mood also is affected, and that bugs me (and my husband too I'm sure!).

Wishing you both the best of luck. Many people use prednisone with minimal side-effects. Hopefully that will be your husband!!

Bev

CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 1/26/2008 10:53 PM (GMT -7)   
Newcrohnswife, your hubby might want to consider staying on the anti-depressants as long as it's ok with your doctor. Also, he might want to consider taking all four of the pred all at once in the a.m. That's what my doc recommended to help reduce the insomnia. Also he said the overall anti-inflammatory effect of the pred is better if it is all taken at once.

I had become completely immune to the effects of Ambien, as well. I'm currently taking Lunesta, which helped *alot* with the prednisone insomnia. In fact, I slept very well while taking prednisone. It was due to the fact that my arthritis pain completely went away, so the back pain wasn't keeping me from sleeping. I'm sure I would have had very bad insomnia from the pred, though, had I not been taking it early in the a.m., and the Lunesta helped alot. The frequent urination got better for me after the first two weeks.

*Most* (but not all) people only have a short-term benefit from steroids. If I was you, I would ask your hubby's GI to consider a long term treatment; after he's done his course of steroids, there is a very, very good chance that his symptoms will return. If I would have known then what I know now, I would have asked to start a biologic (Remicade or Humira), or possibly even an immunomodulator (Imuran, methotrexate, etc) at the same time I started the prednisone. Both the biologics and the immunomodulators take quite a while to have any noticeable effect on Crohn's symptoms. If he starts the prednisone (usually given as a month or two course) at the same time as a bioligic or immunomodulator, they would start being effective about the time he finishes the steroid course. Which, of course, would allow him to stay in the remission he will hopefully get from the prednisone.

If I had it to do over again, I would have requested the Humira at the same time I started on the pred. But instead, I'm suffering a relapse of crohns and arthritis symptoms, as I have been off the pred for two weeks, and I just barely started the Humira four days ago. Ugh.

As I'm sure you know, your hubby will be battling this disease for the rest of his life. And it seems that GI's always think in the short term. You really might want to consider talking with your hubby and his GI about long term treatments like I mentioned. Steroids are nothing but a short term fix. There are some people that do take steroids for long term, but doing so is rare, and can be quite a bit more dangerous than other treatments available.

There's so much information out there, and so many hard decisions to make. I wish the best for both you and your hubby.
Just trying to be a "Regular Member".
 
Entocort 9 mg/day, Pentasa 4 gm/day, started Humira 1/22/08. I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 1/27/2008 1:05 PM (GMT -7)   
Hmmmm.  CrohnsDaddy, you've given us alot to think about.  I am pretty sure he will not want to stay on the anti-depressants he was on.  We do have a meds meeting coming up and he probably would be willing to try something different.  We are almost through with the wean (only a few days left) at this point.
 
I am thinking about what you said about biologics/immunosuppresants.  We have a follow-up with GI in 4 weeks--mid way through the prednisone course.  Perhaps we'll ask at that time.  He is on 9 pentasas a day now too.
 
We will also think about taking all the prednisone at once if the insomnia continues.  We called the doc about taking the 2, 2 times  a day and would want to check to see it the all at once is a good idea.
 
The GI doc does seem to feel confident that the prednisone + pentasa will do the trick.  I think we have one of the conservative type docs.
 
Thanks for all the input and advice.
Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


Mormor Vicky
Veteran Member


Date Joined Mar 2007
Total Posts : 684
   Posted 1/28/2008 9:42 AM (GMT -7)   
Newcrohnswife, I also had the awful mood swings so have lots of patience. But I also got steroid induced diabetes. I was probably pre-diabetic and right now I'm back to being pre-diabetic, so I still watch what I eat. I don't hear of too many people discussing this nasty side effect.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
 
Daughter (27) also has Crohn's since she was 12.
 
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 1/28/2008 10:17 AM (GMT -7)   
Drug manufacturers of the newer anti-depressants have had to acknowledge that these drugs don't work as well as we have been led to believe they do. Something that didn't come out in reports from clinical trials but have recently been reported in the NEMJ. If he doesn't feel they are helping, he may be as well off without them.

That being said, insomnia is the real problem. Lack of sleep is going to exacerbate the feelings of hopelessness and inertia that come from depression. Was he depressed before becoming ill? If not, then isn't his mood state an appropriate response to the anxiety and fear associated with his recent diagnosis? Maybe it's the insomnia -- maybe caused by his pent up feelings of fear and uncertainty -- that is driving his deptression? Prednisone may actually make the insomnia worse in the short term, so finding a sleep aid that can get him through this period (or finding another method of de-stressing (meditation, bio-feedback, eating, diet modulation, counselling) is going to be very important.

Sounds like you've made a great start in developing a partnership with his GI, though and that's going to be very important over time.

For me steroids have always been like a miracle drug, in that I get instant relief from symptoms. Unfortunately, we can't stay on them long term so i am thankful that immuno-suppressants are working for me.
Belleenstein:

30+ years living with Crohn's.


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 1/29/2008 7:54 PM (GMT -7)   
from the UC side of the street, that's a kind-of fast taper. we usually start at 40mg (or 60 mg or 80mg depending on the doctor and degree of illness) and stay there 2 weeks and then drop at 5mg per week, assuming no problems with the taper. I guess it is the same timeline as your taper, but dropping by 10mg may be dramatic and create withdrawl effects, depending on how your hubby tolerates the pred, especially in the lower range of 20mg or below.

for me, pred works wonders in 48 hours. but, then again, my body loves it so much I am steroid dependent..... anyway, he should feel better soon. don't rush the taper.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (used to be on 12 Asacol, don't think Asacol helped)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Various vitamins, bit of fish oil, a probiotic.

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