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Prednisone For Too Long

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Ulcerative Colitis
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Posted 1/2/2013 5:24 AM (GMT 0)
I was diagnosed with UC a year and a half ago. I was put on 60mg of Prednisone for two weeks, and then it was dropped down to 40mg. The doctor tried to take me off of it several times, but each time I would flare back up (I was having trouble finding a medication that worked for me). In the end, I ended up being on Prednisone averaging 30mgs daily for a year and five months. Then about a month ago, my blood tests showed that the Prednisone was causing a decrease in bone density, and it was hurting my liver. The doctor tapered me down from 40mgs to 0mg in a week. A few days later, I start to feel depressed, anxious, can't sleep, have cold sweats, and get the shakes. My doctor said it might be withdrawal from the Prednisone, and that it can take anywhere from 2 to 10 weeks to get over. I have been experiencing it for 4 weeks now. I had to drop my semester in college. Please, has anyone else ever experienced this? I really need help. I am feeling really alone and scared right now. Oh, and all the people who keep saying, "It will get better," but have never experienced anything like this before are really starting to get on my nerves. :(
Posted 1/2/2013 5:57 AM (GMT 0)
I'm sorry but your doctor needs to have his license revoked for tapering you down that quickly. You are absolutely lucky that your body did not go into adrenal shock. Tapers need to be really slow and most GIs will typically do 5 mgs per week -- yours should have been much slower since you've been on it for a while.

Are you still flaring? What other meds are you on? What other symptoms are you experiencing? How's your blood pressure?
Posted 1/2/2013 6:31 AM (GMT 0)
I'm currently on 150mgs of Imuran and 30mgs of Dicyclomine. I have tried a bunch of other meds, but I have had a lot of negative reactions to them. I'm also completely missing some enzymes that help me metabolize medications, so even though I'm on 150mgs of Imuran, my body reacts as if I am only taking 50mgs. I am still flaring, but not as bad as when I first got sick. I think the longest I have gone without a flare was three weeks. My blood pressure is low, but not so low it is concerning. I check it daily just to make sure. There really aren't any other new symptoms. I mean, I still have no appetite, get nauseous frequently, and go about 14 times a day, but that has just become my normal.

I'm also not upset with my doctor for taking me off so quickly. I was admitted into the hospital for the quick taper so that way they could keep an eye on me in case of something like adrenal shock. I get my blood done every two weeks, and within a two week period, about a quarter of my liver seemed to have shut down. My doctors are looking into the possibility that I might have some other sort of immune system disease, which might explain my lack of metabolizing and the sudden ill effects.
Posted 1/2/2013 7:08 AM (GMT 0)
No matter what the pred was doing you should have still tapered slowly. All that extra stress from the withdrawal wont be helping your flare. Stupid part on the doctor, unless this is a situation where another week of pred would kill you but I doubt thats the case.
Posted 1/2/2013 11:17 AM (GMT 0)
Prednisolone has done nothing but give me a rash on my face. I don't have more energy, I'm still bleeding everyday and pooping like a poop machine and for the last couple of days my chest has been very tight and sore like I've got a chest infection. Back at hospital later today so I'm going to see wgat my options are.

Started on 40mg tapering 5mg every 2 weeks and im now at 30mg. i Feel like I'm on a placebo because I feel no different (worse if anything)
Posted 1/2/2013 2:12 PM (GMT 0)
Sorry but your doctor is an idiot. Major idiot. First, prednisone is not meant to be taken for long periods. It will really mess up your body if taken too long. It is only meant to be a quick fix and then use another med to attain long term remission. If the pred cannot be tapered off after a couple of months a new treatment should be administered and you should taper off then, not wait a year and a half. Second, you should never taper off pred that fast, not even in the hospital. The adrenal shock can sometimes cause death. Did you feel better knowing they had paddles ready to bring you back?
Posted 1/2/2013 3:15 PM (GMT 0)
I agree with all the above. I only took Prednisone for just a couple courses in less than 1.5 years time and it gave me Avascular Necrosis of both knees. Prednisone should not be taken long term and it definately shouldn't be withdrawn that fast! Your first order of business should be finding a new GI as soon as possible. If you cant get in to a new GI immediately, you should go to a GP so you can be under a Dr.'s care now .
Posted 1/2/2013 3:17 PM (GMT 0)
I agree with the others, there is something wrong with a doctor that allows his patients to take a high dose of pred for such a long period of time. You should have had instructions to taper the first time you were given the prednisone. A lot of people have trouble tapering off without seeing symptoms and that's why there are other medications, like Imuran. Did your GI mention trying allopurinol with the Imuran? I wasn't able to get into the theraputic range and I was able to with a combo of these drugs. I had to be monitored really closely because it can cause neutropenia but I battled through and I've been feeling okay. It doesn't sound like you GI knows what he's doing considering he left you on that high dose and he had you stop nearly cold-turkey, please see someone else. Have you tried mesalamine?
Posted 1/2/2013 5:22 PM (GMT 0)
I will get another GI. I have tried allopurinol and mesalamine, but neither of them worked for me. I have really bad luck with medications. :/
Posted 1/2/2013 8:25 PM (GMT 0)
Wow - I could not agree more with every one of the reactions here. New GI Fast!!

So sorry you[ve gone through this and I hope your liver gets back to normal.
Posted 1/2/2013 8:57 PM (GMT 0)
     I had a girlfriend who suffered with Crohn's Disease.  She was diagnosed in 1984 at age 37.  That was the first time I ever heard of Crohn's.  Apparently, her GI doctor never told her she had to taper off the prednisone, or, if he did, she did not follow his advice.  She took herself off cold turkey and developed Addison's Disease.  Not to scare you, but she is now deceased.

     I was diagnosed with UP (proctitis) at age 52 in 1998.  The diseases are quite similar and it took a few colonoscopies before my GI doctor was satisifed it was not Crohn's.  Long story short, I became prednisone dependent.  Seems like each time I suffered a flare, the only medicine able to help me into a remission was the prednisone.  It gave me full blown osteoporosis, uncontrollabe high blood pressure and type 2 diabetes.  He placed me on 6MP back in 2002.  That was the medicine that played havoc with my pancreas and liver.  I also tried Remicade and then Humira, all to no avail.  After being prednisone dependent for two years straight, I consulted a colorectal surgeon and had a total colectomy with end ileostomy in June of 2010.  Soooo happy to be off all those meds.  I am sure I would not be here today had I not had the surgery.

     Not recommending surgery to you, but it was the best thing for me. 

Posted 1/2/2013 11:08 PM (GMT 0)
Hi Shy - I have a different take on your situation. I was on prednisone for a year. I was dx'ed in summer of 2011. Put on Pred in Nov of 2011. Then I went through the med roller coaster (sounds similar to what you are experiencing). I would start a new med, wait for the med to kick in while on Pred, then try and taper....and then flare. I got off completely a couple of times but would be back on in a week's time. If I didn't get back on pred, then I would have been in the hospital in a couple weeks on steroids anyway.

All told, during 9 months I was probably on 25 megs average. No, it's not good to be on that much prednisone for that long. The potential of AVN freaks me out. I had surgery because nothing else worked but during the flare I felt stuck.

It sounds like you have alot more going on than just your colon, so I'm not pressuring you toward surgery. Just letting you know that I understand what your pred roller coaster was like and let you know that another GI did the same thing.

Also, your GI might have had you withdraw from Pred so fast because you were facing having your entire liver shut-down or have it be permanently damaged. You had a really fast taper, but if your body did not react well then they could give you intravenous steroids that would kick in in short order. I think what your GI did was dangerous, but so was continuing to give you pred and possibly completely destroying your liver.

I have experience the side effects you mentioned while I was on prednisone. I honestly considered going to the ER one night because of a freak out. But I didn't have these symptoms when I tapered.
Posted 1/3/2013 3:53 AM (GMT 0)
I think remicade or humira would be better, less risky, than big doses of prednisone for such a long time.
Posted 1/3/2013 3:12 PM (GMT 0)
     Peety...that is what my GI told me.  He said if his child developed UC he would go right to the biologics and avoid prednisone.  Prednisone is much worse on the system than Remicade.   I often wonder why he always prescribed prednisone for me.. rolleyes ..  Giving him the benefit of the doubt, back in 1998 prednisone was the go to drug for UC.
Posted 1/3/2013 6:11 PM (GMT 0)
Hello fellow UC'ers. I had been on Prednisone for a year. Was going to a 5* GI. He would put me on 40mg and in a month wean me down to 10. This went on almost monthly. Also had me on 4 Lilada a night. I was getting worse. Could not take Mesalamine either. After a year of this I decided to see if all these things had a comon denominator. YES! Sulfa and I cannot take Sulfa. Weaned off of everything and guess what? The UC improved so much! Here is the new problem. For a month now I have had the effects of going off the Preds. I am so nauseous I can only have liquids, have Diarhea, chills, have lost 16 LBS in 3 weeks and immense fatigue. Have been to Urgent Care, ER and my GP. All Docs feel it is from the Pred. What I want to now is how much longer can this go on? Best of luck to all of you. I have a whole new respect for those with UC.
Posted 1/3/2013 6:38 PM (GMT 0)
Lainy, I'm very confused with your post. What Sulfa were you taking? Nothing you mentioned in your post is sulfa. Prednisone is not sulfa and Lialda is not sulfa either - it is mesalamine. You say you got off everything and your UC improved but then you say you have nausea, diarrhea, chills, weight loss, fatigue, and you can only eat liquids. These symptoms for the most part as a whole more related to UC relapse than prednisone withdrawl. I think your UC is back. Most responsible 5 star doctors would not have you on prednisone for a year. I personally think your other doctors are all wrong when they say your current problems are due to the pred.
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