Pred Reactions - Advice?

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

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/10/2010 3:40 PM (GMT -7)   
Hi
Although my doc said I had CD a month or so ago, I  was confirmed via pill cam and my doc immidiatly put me on Pred and Pantasa about a week ago. Prior to this I had about two weeks of feeling really good. I attribute this to fanatical compliance to SCD (but who knows). Now I am back to the D and feeling poorly again. I of course can not sleep (never could at the best of times). In fact the other day I went to sleep at 10:30 and awoke for the first time at 11:30. One solid hour of sleep YEA!. I am taking the med in the middle of the night (after 3 cause I will not sleep anyway) as I feel really spacey for about 5 to 6 hours after taking the meds. My short term ememory is shot and I struggle to concentrate. Is this normal? Can I expect this for the next 72 days? I thought the meds were supposed to make us feel better, not worse.
Your experience and any advice would be greatly appreciated!
Thank you
David
 
 
Definative diagnosis June 5 2010, 25 years with syptoms, Kapidex 60mg, Prednisone starting at 40 mg, Pentasa 4,000 mg, Amitripyline 10 mg, SCD


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 6/10/2010 4:30 PM (GMT -7)   
Prednisone at the dose you are taking is notorious for causing insomnia. I've been there. How long is the doctor keeping you at 40 mg? If it is going to be for a couple weeks or longer, I would perhaps ask for a medication to help you sleep. Your short term memory loss and inability to concentrate is likely from lack of sleep.
Moderator Crohn's Disease, IBS, and Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, pulmonary hypertension, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/10/2010 5:34 PM (GMT -7)   
interesting. I am going to be on 40 for about 3 weeks then one day 40 one day 30.... untill off after the 72 days.
I am taking both Melitonin and a very light anti-depressive med. This was to help sleep before the Pred. I have a prescipt for Lumina or another knock out drug and this does not work either. This will knock me out for about 5 hours then I toss and turn and feel dosey for the rest of the day. I can not take this. maybe I should start taking up booze. I have heard a bottle can really help a person sleep Ha ha
QQ did the pred make you feel better in the guts? If so how long did it take? As per my last note I was feeling better and now i feel sick again. I do not know but it feels like all these strong drugs are making me feel sick. If I need to expect that I will feel sick for the next couple of months I would rather know it.
Thank you
David
Definative diagnosis June 5 2010, 25 years with syptoms, Kapidex 60mg, Prednisone starting at 40 mg, Pentasa 4,000 mg, Amitripyline 10 mg, SCD


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14146
   Posted 6/10/2010 6:10 PM (GMT -7)   
I have to take sleeping pills to get any rest while on a higher dose of prednisone. Maybe under 10mg, I could get some sleep without pills but since having to go back up to 40, I have not gotten a good nights sleep. Even with the pills, I will go to bed at 12 and wake up at 1:30, 2:30, 4:30... I never get a good nights sleep.

I've tried the booze, it doesn't help. I got some anxiety medication from my doctor and he thinks it will help me sleep. I haven't tried using it before bed yet but I think tomorrow evening I will give it a go. He said to take it morning and night. I feel like such a ball of stress. I think I am going to taper my prednisone tomorrow, probably just to 35 but it's a start. I would like to do bigger drops but I've had so much trouble eliminating the symptoms, I don't want to risk the return of this flare.
March 07: DIagnosed with Mild Proctitis - Canasa as needed.
August 08 - December 08: FLARE & Anemic - Started Asacol!!
January 09 - December 09: REMISSION!! Asacol (9) + Canasa 1g AM/PM
December 09 - January 10: FLARE!! Asacol + Prednisone + Canasa
February 10 - April 10: Colazal + Prednisone + Canasa
May 10 - June 10: Lialda + Cort Enema + Prednisone
Current: Mild / Moderate Active Pancolitis: Prednisone, 6mp, Canasa, klonopin


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/10/2010 6:13 PM (GMT -7)   
How exactly are you feeling sick? Nausea, diarrhea, pain?

Are you eating differently? Prednisone usually makes a person hungry, and it also raises your blood sugar levels. If you're eating a lot more carbs, that could make it worse. Also, prednisone can increase yeast levels in your body, so again, if you're eating a lot of carbs, that could make things worse. Are you taking probiotics?

Prednisone always gave me insomnia and heartburn. Other than that, it usually made me feel pretty good. The last time I took it though (a few years ago), it didn't help my gut at all :-(.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/10/2010 10:40 PM (GMT -7)   
my wife calls them my ****** pills. i'm on 40 right now and hating it...i get insomnia pretty bad also...my doc gave me xanax to take while i'm on it- that seems to help...i hate taking one pill to "counter" another but sometimes you've gotta do whatcha gotta do.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 6/11/2010 4:24 AM (GMT -7)   
Mtgman - glad to hear the xanax helps. I'm having the same prednisone problem and am going to call my md today
Official dx September 2007.
[i[ currently flaring (June 2010) with colitis
Medications: Pentasa, Omeprazole, Prednisone, 6MP
History of hypothyroid (dx 2004, take Levoxyl), and gall bladder surgery (1997).
47 years old; single mom to three wonderful kids, ages 12 to 18.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 6/11/2010 11:19 AM (GMT -7)   

Prednisone makes me slightly more manic than usual, which is why I think it makes sleep harder - just think of all the things you can get done when you're awake at 2 am!  I really do love prednisone, but after a while the no sleeping thing can really suck.

So I agree with the other posters - ask for a sleep aid.  Ambien works for me, but maybe not appropriate for you, nor do I have any clue whether it's ok to take with steroids.  You can also talk about upping the melatonin, but that's really short-acting and probably won't do anything about KEEPING you asleep once you get to sleep.

I have found that I get pretty quick response from steroids.  The one time I took them for more than a week it was for joint pain, and it took a good month to resolve all of that, plus another month on a taper.


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 6/11/2010 11:30 AM (GMT -7)   
about 1 out of 20 people have an adverse reaction to the 5-ASA meds (such as the Pentasa you started) where they get an *increase* in symptoms such as diarrhea, instead of the improvement they expect. If your diarrhea and general GI symptoms have gotten worse, you could be one of those people.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 6/11/2010 3:40 PM (GMT -7)   
Prednisone is best used twice a day but it doesn't have to be that way, take the full dose in the morning that will help you sleep at night. Or half in morning, half late afternoon. It ususally works very quickly, for me within 24 hours. It depends though on how bad the inflamation it's trying to reduce is, if there's lots then it will take longer. Welcome to the devils drug, now you know a few of the reasons why we call it that. Rob
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/11/2010 5:53 PM (GMT -7)   
i don't know why but the sleep aid s like ambien scare me-- considering i'm taking remicade and prednisone that's kimd of funny but...
the xanax helps and if i really need to sleep i'll pop a benadryl...they help knowck me out pretty fastr most of the time.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/12/2010 4:43 AM (GMT -7)   
One of the things that is so positive about this forum is knowing that you are not alone and that others have experienced the same thing.
I have been doing 40 mg for a week now and things are getting better. Although I am not sleeping, somehow I am not as dragged out. I am taking the meds in the middle of the night when I wake up so I am "stoned" early and the rest of the day feel pretty normal. I talked to the pharmacist and she said the D could be for this dose level of Pred. I am not sure I trust this much as I have not heard others say that here.
beave - I will keep an eye on the Pentasa. The D is back but the cramping is down. I hope it is not Pentasa as I just ordered a $1,000 worth from Canada.
spooky – When I feel “sick” it means D and cramping and generally feeling poorly. I am lucky no nausea. I am doing SCD. I try to be fanatically compliant. I eat mostly the same thing. Well cooked veg and protein. I am not doing beans yet and I also took out honey for now. I have not changed anything and before the drugs I was 2 weeks feeling good every day. I do not “think” it is diet. I have heard others say they struggle with SCD. Not eating some stuff is really no issue for me if it helps, so I would make additional changes if I thought it would help. For now I “think” I am doing all I can on that front but if you have any suggestions I would always appreciate.
Last week the drugs were really playing on my mind, that and seeing the pervasive ulcers for the first time.
This week I am trying to be more positive and accepting. Some of the good things so far are
1)I got really stoned but did not do any illegal drugs
2)My Sudoku skills are getting really high as I have lots of time sitting in one place
3)I continue to lose weight, without even trying
4)If you need any info about late night commercials, just ask me
I could go on but if I did everyone would want to get in on all our fun
Thanks again
David
Definative diagnosis June 5 2010, 25 years with syptoms, Kapidex 60mg, Prednisone starting at 40 mg, Pentasa 4,000 mg, Amitripyline 10 mg, SCD


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/12/2010 4:58 PM (GMT -7)   
David, how long have you been eating SCD? Most people experience a flare up of symptoms at around 3 months, when it's suspected that a large number of bacteria suddenly bite the dust and cause more problems. It happened to me, and I think I felt kind of lousy for about 2 weeks.

I love Sudoku! It's especially fun to play it on an Nintendo DS.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/12/2010 8:06 PM (GMT -7)   
Spooky, that is so encouraging. It would be great to think that what was happening was a good thing. I am right at about 3 months right now. Wouldn’t be great if the new meds and the three month shake out just happened to fall at the same time.
Now my fingers and toes are crossed that this flare is a sign of good things to come. You have no idea what an encouraging thought that is. THANK YOU! Your encouragement is a gift 

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone starting at 40 mg (moving to 30 soon YEA!!), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/12/2010 9:28 PM (GMT -7)   
one thing that just hit me again pretty bad over the past couple of days is the darn moonface...puffed up like a darn cotton ball...oh well.
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 6/12/2010 10:30 PM (GMT -7)   
David, glad I could help :-). Hopefully that's what you're dealing with, and it will be over with before long. The usual recommendation for the 3 month flare is to drop back to foods you know are safe, and just wait it out. Epsom salt baths can be helpful too.

mtgman, I was just reading some tips for dealing with moon face. First, avoid salt (especially be wary of pre-packaged food that can be loaded with the stuff). Prednisone causes sodium retention and potassium loss, which in turn can lead to fluid retention. Try to eat a few more foods with potassium as well, like bananas. Second, avoid sugar. Prednisone tends to make you crave the stuff, and it's easy to overeat and gain weight.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, Calcium, CoQ10, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 6/12/2010 10:33 PM (GMT -7)   
thanks Spooky- i have been trying to avoid the salt- it's TOUGH!
36 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently on 30 mg prednisone.  still taking Asacol.  Just had 3rd Remicade infusion 3 weeks ago
In the middle of a bad flare now for over a year...lost almost 30 lbs. -- gained most of it back now.


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/15/2010 9:09 AM (GMT -7)   
Quick update - 2 days in a row no D or cramping. YEA!!!! Feeling much, much better mentally and physically!!!! Struggling to sleep like most on the Pred but that is nothing compared to where I was a week ago.
As always thanks for the support
Cheers
David

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone starting at 40 mg (moving to 30 soon YEA!!), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 1:27 AM (GMT -7)
There are a total of 2,732,865 posts in 301,064 threads.
View Active Threads


Who's Online
This forum has 151217 registered members. Please welcome our newest member, antknight.
194 Guest(s), 4 Registered Member(s) are currently online.  Details
Nick_69, Albannach, docktahkay, celebrate life


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer