Set back, can't seem to get off Prednisone

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Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 11/30/2007 5:56 PM (GMT -7)   
I have been feeling so awful. Found out I was anemic some time back but my insurer really dragged its feet okaying the full treatment course. I finally begin getting the injections tomorrow morning; once a week for five weeks.
 
Last Monday I had to call my husband to come get me and my grooming van and drive home as I nearly fainted after I brought my first groomed dog back inside to its owner. This past Wednesday I was at my GI and we were still waiting on the iron injection pre-authorization and discussing options when he left the office for a bit and I fell asleep! He suggested I pop back up to 40 mg of Pred for a few days and see how it goes. So Thursday morning I took the 40 mg and within a few hours I felt better than I had in weeks. Can it do that so fast? Still bleeding and lots of urgency, but still not much "production" (anemia makes you constipated, with UC you're never completely poopless, but it's uncomfortable for sure). The daily pounding headaches stopped and the fatigue lifted a bit, I can also eat again after losing about 20 lbs in two months.
 
So far it seems the only thing that has been able to give me any relief is the Prednisone, and obviously I cannot stay on it much longer. GI recommends surgery, but for several reasons I can't do it for quite some time. My daughter, who turns 18 in the spring, is in a residential treatment center 50 miles away. Most of the cost is covered by Medicaid, but we need to still pick up $1,350 a month, obviously not a good time to shut down my business while I recover and then have to build it back up because I will no doubt lose some clients to other groomers in the area. We do have some money behind us, we're not going paycheck-to-paycheck, so that's not the big issue, the major issue stopping me from the surgery now is if I am in the hospital I can't participate on her therapy which is once a week, visitations and the treatment meetings. Even while trying to keep up my work schedule I am back and forth to the place two or three times per week (oh yeah, in an 18 year old car yet!).
 
I also think that the whole stress of the situation may have a lot to do with the persistence of the flare up so I'd like to get through this issue with my daughter (if it ever will end!) and get that behind me and see what happens before resorting to something as permanent as colon removal.
 
What is considered the maximum length of time one can be on Prednisone?
 
Meesh

Diagnosed UC April 27, 2006
Remicade: 1st infusion 7/21/07; 2nd infusion 8/18/07; 3rd infusion 10/13/07
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off back to 40 mg; 9 mg Entocourt EC; Xanax as needd; Lexipro, Rowesa; Asacol; Colazal three 750 mg capsules 3X day;
[2/22/07 started Imuran, off within two weeks due to bad reaction]


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/30/2007 8:29 PM (GMT -7)   

There is no maximum time you can stay on prednisone but it's recommended that if you are declared prednisone dependent and all other medical options have failed, that you consider surgery.  The problem wiht prednisone is that the longer you are on it the more potential for developing long lasting side effects.  Often the damage that prednisone causes is not realized until one is successfully weaned from it.  In that now is not a good time to consider surgery you might want to do a couple of things to protect yourself.  First, try to get down to the lowest dose that will keep you from flaring.  Ideally that would be below 10mg.  The other thing you can do to help yourself is engage in regular weight bearing exercise.  Whether that's regular walking or lifting weights, you need to protect your bones.  Also, you might consider taking calcium citrate.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 11/30/2007 9:11 PM (GMT -7)   
Sorry to hear about your troubles. As was said by suebear, there is no maximum time that a patient can be on steroids. It is up to the doctor and patient to decide together, by considering the costs versus the benefits. I'm not sure what other medical options you've availed yourself of. Have you yet tried Remicade, or Humira, or Imuran, or 5MP (to name a few treatment options)? I also understand what it's like to have difficulty coming off of prednisone.

If I may ask, am I correct in understanding that your specialist is recommending a colectomy? I assume your entire colon is affected by UC? I'm just curious. Also, what is the story with your daughter, she also has medical issues?

Robert

Post Edited (Robert.K) : 11/30/2007 9:13:08 PM (GMT-7)


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 12/1/2007 7:35 AM (GMT -7)   
Hey meesh- sorry to hear about your issues- I too feel like i'm "stuck" with pred... right now am at 15mgs, & I have a remi infusion this coming Monday. I've been dropping my pred dose 5mgs every 2 weeks, which seems to be awfully slow, but my GI doc wants it to "trickle" out of my system. Plus, I figure/hope that the remi infusion will help- I've been doing ok, but have become slightly more symptomatic since going down to 15mgs. I wonder if you could up your remicade dose? Or increase the dosing frequency? It may be worth talking with your doctor about it- prior to me going up to the maximum remicade dose & getting the infusions more frequently, I was totally flaring. And my GI doctor didn't even realize one could get the infusions as frequently as every 4 weeks, at a high dose. I got that tidbit from a specialist at one of the major Boston hospitals! SO- just hoping things smooth out for you! And maybe see what dose you are getting, on the Remicade, & if need be, suggest increasing it! Good luck!!!!!!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 15mgs/day
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/1/2007 11:55 AM (GMT -7)   
Meesh said...
So Thursday morning I took the 40 mg and within a few hours I felt better than I had in weeks. Can it do that so fast?
In my experience, yes. When I was put on 40mg of pred recently to stop a mild to moderate flare, I felt dramatically better the next day. It was like a switch had been flipped.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/1/2007 12:01 PM (GMT -7)   
Well, the nurse said the iron injections should start making a difference after the 2nd one, so maybe next week I can start working to gettting back down with he Pred, if not down to 5 mg every other day than at least maybe down to 10 mg or 5 mg daily. Don't really want to go the surgical route and have to shut down my business for 6-8 weeks! And then again for the other surgeries.
Diagnosed UC April 27, 2006
Remicade: 1st infusion 7/21/07; 2nd infusion 8/18/07; 3rd infusion 10/13/07
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off back to 40 mg; 9 mg Entocourt EC; Xanax as needd; Lexipro, Rowesa; Asacol; Colazal three 750 mg capsules 3X day;
[2/22/07 started Imuran, off within two weeks due to bad reaction]


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/1/2007 7:59 PM (GMT -7)   
I noticed you're on both Entocort and Pred. That's two steroids at once, and pretty hard core. I was on Pred for most of a year, then my doctor changed me to Entocort because it supposedly had less bad side effects. Despite that, after three years I had severe osteoporosis (mis-stepped and broke both the bones in my lower leg,) anoxic necrosis in my shoulders, diabetes, moon face, awful skin, etc. etc. etc.

You do still have Remicade to try if you wish before surgery. I hope that if it quits working for me some day there'll be another new drug to work for me.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/2/2007 8:49 AM (GMT -7)   
I was put on the Entocourt when I was down to 5 mg of Pred every other day to try to get off the Pred altogether. The day I was in at the GI things were so bad I think we just neglected to go over what I was still on. I intend to call tomorrow to verify the Entocourt and see when I can try to get down off the Pred again. Started the iron treatment yesterday so that should prove helpful soon I hope.
Diagnosed UC April 27, 2006
Remicade: 1st infusion 7/21/07; 2nd infusion 8/18/07; 3rd infusion 10/13/07
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off back to 40 mg; 9 mg Entocourt EC; Xanax as needd; Lexipro, Rowesa; Asacol; Colazal three 750 mg capsules 3X day;
[2/22/07 started Imuran, off within two weeks due to bad reaction]


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/2/2007 5:29 PM (GMT -7)   
Hi Meesh - sorry to hear that you're in a rough spot. My first thought, given that you don't want to think about surgery right now, is to just focus on what you need to feel better now. If you are certain that right now your priority is to participate in your daughter's treatment, and put your own on the back burner, then I would personally try not to worry too much about the pred and just focus on feeling well enough to be around for your daughter. The bottom line is that it sounds to me like you're in a tough spot and all decisions will have some negative consequences, so you just have to decide what is most important for you at this time, and it sounds like you have already made that decision. so, perhaps you should just decide that you will not worry about the pred for XX months, and just take those XX moinths to focus on your daughter, but then promise yourself to get off it after that, even if it means surgery. and, in the mean time, do as sue suggested with the calcium and definitely the weight baring activities. make sure your do upper body acivity as well.

that's my two cents. good luck. oh and yes, pred works for me within 24 hours. the difference is night and day.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent)
Various vitamins, a probiotic and fish oil.


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 12/2/2007 6:22 PM (GMT -7)   
Thanks UCinNYC, that makes a lot of sense. Luckily my job involves weight-bearing activity (lifting dogs, holding clippers and othe equipment all day, being on my feet a lot), but the gym has been on the back-burner because I just have not felt up to it, quite frankly. I do miss it and haven't canceled the membership though ;-)

I just HATE the Pred. It's making me feel better now, but at this dose soon the sleepless nights and b****y moods will return, then the acne, I recently lost a lot weight because I was feling so il, but today it was TOUGH to not eat too much. Some of that's the Pred and some of that is just needing food after losing almost 20 plbs in about 6-8 weeks. Lost all the previous Pred weight, plus some extra.

But yeah, I just have to do what I have to do to get through the next year I guess.

Meesh
Diagnosed UC April 27, 2006
Remicade: 1st infusion 7/21/07; 2nd infusion 8/18/07; 3rd infusion 10/13/07
Lialda, 4 tabs in the morning; Protonix; Prednisone 4/27/06-present, was almost off back to 40 mg; 9 mg Entocourt EC; Xanax as needd; Lexipro, Rowesa; Asacol; Colazal three 750 mg capsules 3X day;
[2/22/07 started Imuran, off within two weeks due to bad reaction]


monidad
Regular Member


Date Joined Jun 2007
Total Posts : 54
   Posted 12/3/2007 7:01 AM (GMT -7)   
There is some light at the end of the tunnel. I was in a similar situation. I was very symptomatic, on prednisone, and each time I tried to taper, I would have problems. During this last taper in the fall I was also put on Imuran and Remicade. I was discouraged because after a few infusions I still was not feeling much better as I decreased the prednisone. All of a sudden after my fifth infusion it was as if something kicked in and my symptoms started to improve. I have been at 0mg prednisone for over two weeks, and am feeling better than I have in a very long time. Sometimes it takes a number of infusions for the Remicade to start to kick in. I see that you have only had 3 infusions so there is still the chance that the Remicade will work. For me, 3 infusions was not enough.

Glenn
UC diagnosed 2004

Asacol 9 tablets daily

Canasa PRN/ Currently 1x in evening

Prednisone- 30 mg as of 6/8/07, Increased to 50mg 6/18/07, 0mg as of 11/12/07!!!! Finally!!

Lialda 4 tablets daily

Multi vitamins

Azathioprine 50mg

4th Remicade Infusion 11/21/07


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/3/2007 8:40 AM (GMT -7)   
Meesh said...
Thanks UCinNYC, that makes a lot of sense. Luckily my job involves weight-bearing activity (lifting dogs, holding clippers and othe equipment all day, being on my feet a lot), but the gym has been on the back-burner because I just have not felt up to it, quite frankly. I do miss it and haven't canceled the membership though ;-)

I just HATE the Pred. It's making me feel better now, but at this dose soon the sleepless nights and b****y moods will return, then the acne, I recently lost a lot weight because I was feling so il, but today it was TOUGH to not eat too much. Some of that's the Pred and some of that is just needing food after losing almost 20 plbs in about 6-8 weeks. Lost all the previous Pred weight, plus some extra.

But yeah, I just have to do what I have to do to get through the next year I guess.

Meesh

Your experiences with prednisone really mirror some of mine. I also had sleepless nights for extended periods of time during a couple of timeframes when I was using prednisone to control severe flare-ups .I am currently on prednisone again, unfortunately, at 40 mg/day due to a severe flare. I'm on my fifth day of prednisone. Surprisingly, this time around I'm not feeling the same degree of excitedness and sleeplessness or that sensation of burning up on the inside. I also experience hair loss when using prednisone: in the shower after I massage shampoo into my hair, I see more hair in my hands than I know I should be seeing! This is also my fourth trip with prednisone in less than two years, while I was for some approval for govermental assistance to help me pay for the portion of Remicade (20%) that isn't covered through my insurance. Keep us up-to-date :-)
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