prednisone dependance....???

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super8
Regular Member


Date Joined Oct 2010
Total Posts : 55
   Posted 1/10/2011 7:48 AM (GMT -6)   
I only feel better and have no blood, pain  and mucus when on prednisone but the side effects just about kill me. Could I just be dependent on this stuff now? What can I do out it? I said I would never take it again...and here I am, I get so depressed, anxious, irritable, full body acne, brittle bones nono I really want to be done with this stuff.
pancolitis diagnosed 2002
cortifoam and suppositories when I get a chance...
asacol 400mg X 3 daily
multivitamins & fish oil
celexa
prednisone

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 1/10/2011 8:11 AM (GMT -6)   
The general rule of thumb is that if you have been on prednisone continuously for 4 months or longer, and cannot taper off without flaring, then you are prednisone dependent. If this description fits you then I would suggest you meet with your GI to talk about the next steps of treatment.

Sue

Ugh Just Ugh
Veteran Member


Date Joined Jan 2010
Total Posts : 1004
   Posted 1/10/2011 9:43 AM (GMT -6)   
I couldn't get off pred without going on something stronger. So, I started Remicade and was finally able to get completely off pred. What it might mean is that at this point Asacol and suppositories might not be a strong enough maintenance med combo for you. ;o(
Jennifer
Current Meds: Remicade (5mg/kg), Imuran (50mg), Rowasa (4g nightly).
Past Meds: Canasa, Hydrocortisone Enema & Supp. Oral Mesalamine Intolerant.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15137
   Posted 1/10/2011 9:53 AM (GMT -6)   
I agree with Ugh. I don't think because you've been on pred for a while that you will never get off. Sometime it's going to take a while to find what works for you. I've seen some people on here who were on pred for LONG amounts of time, much longer than 4 months and have gotten off but it usually requires adding more medication. You could try imuran/6mp or Remicade or cort-enemas. Hopefully your GI has mentioned some of these options to you. Imuran/6mp can take a a while to be effective so you would want to start ASAP so you can get off prednisone sooner than later.
Co-moderator: Ulcerative Colitis
03/07: Mild Proctitis | 08/08: Pancolitis! | 09/08: FLARE & Anemic Asacol (9) + Canasa | 01/10: FLARE AGAIN!! Asacol + Prednisone + Canasa | Currently: doing OK - Asacol + Canasa + Rowasa + 6mp + Allopurinol + Prednisone (tapering again...) + Ponstel + Klonopin + Ambien

Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 1/10/2011 10:22 AM (GMT -6)   
Well I wonder is does your adrenal glands basically just quit working after so long on pred?

Ugh Just Ugh
Veteran Member


Date Joined Jan 2010
Total Posts : 1004
   Posted 1/10/2011 10:26 AM (GMT -6)   
Zippy, I was on for 7 months this year and got off with not problems. I feel fine! :o)
Jennifer
Current Meds: Remicade (5mg/kg), Imuran (50mg), Rowasa (4g nightly).
Past Meds: Canasa, Hydrocortisone Enema & Supp. Oral Mesalamine Intolerant.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 1/10/2011 10:48 AM (GMT -6)   
What happens when you try to taper? If you can't even start to taper w/o symptoms, you might have to move to a stronger maintenance drug, like Imuran, 6MP, or Remicade.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 1/10/2011 11:15 AM (GMT -6)   
When hubby was on and off the prednisone (became steroid dependent) one thing I learned from this forum was INSISTING on a long slow taper and that is how he successfully weaned off it and that was over 3 years ago. OMG the prednisone took a very mild mannered easy going guy and did a 180 with his personality, couldn't sleep, constantly jittery and anxious...etc.

(The taper we did was by 5 mg increments and then as low as 2 1/2 increments when we got to 15 mgs (12 1/2 , 10, 7 1/2, 5, 2 1/2)...splitting those pills into 1/2s and 1/4s seemed kind of silly but it worked for him to finally get off it)
64 yr old male --suffered with UC & in May 06 severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision in 6/10 to have surgery which was on 12/17/10 and no longer in pain.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5915
   Posted 1/10/2011 12:36 PM (GMT -6)   
     I was prednisone dependent for two years prior to my surgery.  I now have full blown osteoporosis.  Every time I tapered down to 7.5 mgm..boom...flare. 

super8
Regular Member


Date Joined Oct 2010
Total Posts : 55
   Posted 1/10/2011 2:14 PM (GMT -6)   
I was on pred since May till december and did a long slow tapper and still got sick when I stopped completly even though my Dr thought my body would not notice if I stopped at 2.5mg...I have no GI right now, he moved and we're in a small community...if my primary can't put me on something else I'll have to fight to get to one in another city...most of my care this year is from ER docters and my primary when I can see him, he's in his 70's and has a large patient load :(

pancolitis diagnosed 2002
cortifoam and suppositories when I get a chance...
asacol 400mg X 3 daily
multivitamins & fish oil
celexa
prednisone

journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2818
   Posted 1/10/2011 5:58 PM (GMT -6)   
Zippy 123, the adrenal function should come back, if not affected at all. Things take awhile after you've tapered off.
In remission--pancolitis. 8 Asacol, Rowesa every other day- with symptoms daily - adding Canasa daily and Psyllium husk.
Align probiotic. Vitamins. Avoid greasy, fried, spicy, citrus, dairy (except yogurt), caffeine, alcohol. Bipolar/anxiety/depression: lamictal, Lexapro; Sleep-zinc magnesium B6--Zyprexa, klonopin if sleep regime fails.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5915
   Posted 1/10/2011 6:02 PM (GMT -6)   
     I was afraid I would have no adrenal function after being prednisone dependent for two years.  However, I was able to taper off the prednisone within a month of my surgery.  My family doctor sent me for a blood test for my adrenal function and it is perfect...yaaaaaa wink

super8
Regular Member


Date Joined Oct 2010
Total Posts : 55
   Posted 1/11/2011 7:01 AM (GMT -6)   
I'm going to try and see my primary Dr this week and kick this prednisone habit!
pancolitis diagnosed 2002
cortifoam and suppositories when I get a chance...
asacol 400mg X 3 daily
multivitamins & fish oil
celexa
prednisone

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23547
   Posted 1/11/2011 7:44 AM (GMT -6)   
That is one of the reasons we recommend a long slow taper of pred....especially if one has been on it for a long time. It is to help the adrenal glands start producing on their own again. If one is on pred for long periods of time and if you stop too quickly, it can pretty much "shock" the adrenal system. Also, too a long taper can help stop a flare from coming back.

Super, I am steroid sensitive so I know how horrible it is to be on steroids. Once I was given an extremely low dose for my arthritis and I couldn't even go to three days before I had to quit. Even on steroid enemas I get side effects almost instantly. If you go see your doc, ask for Rowasa (if you don't already use them or have them) and use them nightly until you can successfully get off the pred. Using rectal meds in conjunction with pred gives you a higher success rate of stopping the pred.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
~Left sided Uc-'92**Unable to tolerate ALL mesalamines**
Colazal(9 daily)/6mp(50mgs)/Bentyl-Prilosec~allergies-Singulair/Zyrtec~Reynauds Syndrome~OA-Tylonel Arthritis~Scoliosis~Sacroilitis~Dry eye-Restasis/GAD - Klonopin (.25mgs)

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 1/11/2011 8:44 AM (GMT -6)   
Super,

If you are being treated by a primary doctor, I recommend you get your care moved to a GI. GI's are trained in treating IBD and have more knowledge and experience on drug treatment.

Sue

super8
Regular Member


Date Joined Oct 2010
Total Posts : 55
   Posted 1/11/2011 9:27 AM (GMT -6)   
there is no GI doctor here and my primary has to decide if he wants to try and advocate GI's in other cities for me...Arg

pancolitis diagnosed 2002
cortifoam and suppositories when I get a chance...
asacol 400mg X 3 daily
multivitamins & fish oil
celexa
prednisone

shaddiegirl
Regular Member


Date Joined Dec 2010
Total Posts : 21
   Posted 1/12/2011 4:06 PM (GMT -6)   
Another UC wife said...
When hubby was on and off the prednisone (became steroid dependent) one thing I learned from this forum was INSISTING on a long slow taper and that is how he successfully weaned off it and that was over 3 years ago. OMG the prednisone took a very mild mannered easy going guy and did a 180 with his personality, couldn't sleep, constantly jittery and anxious...etc.

(The taper we did was by 5 mg increments and then as low as 2 1/2 increments when we got to 15 mgs (12 1/2 , 10, 7 1/2, 5, 2 1/2)...splitting those pills into 1/2s and 1/4s seemed kind of silly but it worked for him to finally get off it)



You know, I read this and my doc has me on a weekly taper of 8mg, TOO MUCH TOO SOON. I m going to insist she slow me up so I don;t have to go back to square one

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15137
   Posted 1/12/2011 4:11 PM (GMT -6)   
I've been decreasing at a ridiculously slow pace since I got below 10mg. I think even 2.5mg could be too quick if you've had problems tapering in the past. I also think trying to do a weekly taper doesn't make sense. You shouldn't go down after a week if you're not feeling well. If you taper and you're unstable, chance are you will become more unstable and you could possibily have a full relapse that will cause you to have to go back up to a high dose - it happened to me!
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien

super8
Regular Member


Date Joined Oct 2010
Total Posts : 55
   Posted 1/13/2011 1:40 PM (GMT -6)   
I'm down to 20mg and starting to feel symptoms of UC again but I really want off the prednisone...I know I have to be patient but the side effects make me want to kill myself...literally..I don't want to go back to crazy town I want off this drug. can't see any Dr. till Monday...so I guess I'll stay at 20 till then

pancolitis diagnosed 2002
cortifoam and suppositories when I get a chance...
asacol 400mg X 3 daily
multivitamins & fish oil
celexa
prednisone

journey2health
Veteran Member


Date Joined Oct 2009
Total Posts : 2818
   Posted 1/13/2011 1:48 PM (GMT -6)   
Are you on some type of anti-depressant to get you through the prednisone course? You might want to use sleeping pills if you are not getting enough sleep.
In delicate remission--pancolitis. 8 Asacol, Rowesa every other day- with symptoms daily - add Canasa sometimes, Psyllium husk, Align probiotic. Vitamins. Avoid greasy, fried, spicy, citrus, dairy (except yogurt), red meat, caffeine, alcohol. Bipolar/anxiety/depression: lamictal, Lexapro; Sleep-zinc magnesium B6--Zyprexa, klonopin if sleep regime fails.

super8
Regular Member


Date Joined Oct 2010
Total Posts : 55
   Posted 1/13/2011 1:51 PM (GMT -6)   
I take two anti-depressants and was useing trazadone to sleep...as soon as the prednisone goes down in my system the darkness pretty much lifts...for my mental health I just really really can't take that stuff anymore imo...now to convince my doctor...he's sent me to a few psychiatrists lately too
pancolitis diagnosed 2002
cortifoam and suppositories when I get a chance...
asacol 400mg X 3 daily
multivitamins & fish oil
celexa
prednisone

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15137
   Posted 1/13/2011 1:57 PM (GMT -6)   
It's really awful. Many of us understand what you're going through. I feel hopeless sometimes and it's especially hard because I've put on some weight and weight was never concern of mine, now it is. I hate worrying about weight, I have enough problems. I hate how I look and I've lost all of my confidence. I guess it's good that I am not feeling depressed right now. I am trying to stay positive. Have you been decreasing at 5mg a week or what? Ho long have you been on 20mg? I know the feeling of just wanting to stop.
Co-moderator: Ulcerative Colitis
03/07: Diagnosis: Mild Proctitis | 08/08: Diagnosis: Pancolitis - FLARE & Anemic! Asacol (3600mg) + Canasa (1000mg morning/night) | 01/10: FLARE! Prednisone + Cortifoam + Asacol + Canasa + Rowasa | Currently: stable - Asacol (3200mg) + Canasa (nightly) + 6mp + Allopurinol + Prednisone + Ponstel + Klonopin + Ambien

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 1/13/2011 1:58 PM (GMT -6)   
How often are you flaring? Do you generally have to resort to pred to get into remission?

If you are flaring pretty often, you should consider using a different maintenance medication to see if it keeps you in remission longer.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 

super8
Regular Member


Date Joined Oct 2010
Total Posts : 55
   Posted 1/13/2011 2:04 PM (GMT -6)   
I've been flaring almost non-stop since may and the only thing that puts it in remission so far is high doses of pred...I've been going down 5mg a week and thought at 15mg I would start going down by 2.5mg but I'd also really like to just stop the whole thing...
pancolitis diagnosed 2002
cortifoam and suppositories when I get a chance...
asacol 400mg X 3 daily
multivitamins & fish oil
celexa
prednisone

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 1/13/2011 2:10 PM (GMT -6)   
If that's the case, I think you need to seriously consider a change in medication.

How far away is the closest GI? You really need to be seeing one.
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 
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