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Posted 5/19/2008 12:55 AM (GMT 0)
Hi, has anyone out there been on prednisone for over a 2 year period? I am feeling really angry at my GI for letting me be on pred for so long without advising or alerting me as to how serious this medication is. Is it common to be on prednisone this long? Help, looking for words of support and wisdom.
Posted 5/19/2008 1:17 AM (GMT 0)

Over 4 monts is considered long term prednisone use.  What type of mgs have you been on? 

I was on varying dosages 5-40mg for 2.5 years.  My GI told me that he didn't like keeping his patients on pred longer than one year due to the side effects.  At about 6 mos he put me on 6mp and we waited for that to kick in.  I was able to get my dosage down but anytime I got lower than 10mgs I would flare again.  At the 2 year mark I opted for surgery because I had run out of options.  This was in the day when 6mp was the last available drug for treating UC.

I guess you know you need to get off this drug no matter what it takes.  I came out of my experience with no long term consequences but my GI credits all the weight bearing exercise I did during the years I took that drug.  As for pred users I have met UC patients who have been on prednisone for 10-20 years.  I hear those stories and it makes me cringe.  Prednisone is definitely not a maintenance medication for UC.

Sue 

Posted 5/19/2008 4:40 AM (GMT 0)
I've been trying to resist pred for a long time. My bro was on it for 10 years and it wreaked havoc on his bones. Now when my GI mentions taking a "short course" of pred, I'm always skeptical. I think you should discuss other options with your GI. Good luck!
Posted 5/19/2008 8:45 PM (GMT 0)
Thanks for the responses. I have been on 80 mg of prednisone to begin with and then tapered down to 20mg. I also begin to flare up when I am at a lower dose than 10mg. I am now also taking prilosac and calcitrate to possibly offset some of the side effects. I am also on Remicade and my GI will be doubling the dosage. I am seriously considering surgery, an ileoanal anastomosis, which removes the colon but preserves part of the rectum. Does any one know anyone that has had this type of surgery?
Posted 5/28/2008 9:05 PM (GMT 0)

Hi Luis,

Your thread caught my eye because of your long term pred use...and am replying because my daughter has been through the jpouch surgery that you asked about.  She's almost two years now from her surgery and doing great digestive wise...can eat anything she wants and goes to the bathroom about 4-6 times a day.  She does take a heavy duty probiotic (VSL #3 DS (double strength because our insurance will pay for it)) once every other day or so to maintain good intestinal flora, but that's it for medications.  I'd be happy to answer any questions, and I'm sure she'd be happy to talk to you about it if you'd like. 

However, she was recently diagnosed with avascular necrosis/osteonecrosis from the pred use.  It's in her right shoulder, both elbows, both knees, and both ankles.  We were never told that this is a risk and are angry beyond words that she now has bone death and countless joint replacement surgeries are in her future.  We've contacted an attorney and if anyone else has a similar situation, I'd love to hear from you.

Posted 5/28/2008 9:10 PM (GMT 0)
I was on Prednisone, then on Entocort. I will never take steroids again. I also have avascular necrosis, and have had two shoulder surgeries for that. I also had a stress fracture of the leg that required very major surgery. Not everyone will have such bad effects, but if you're unlucky enough to be a person who is sensitive to steroids, they can do a lot of damage.

Hope you can kick them to the curb soon, Luis.
Posted 5/28/2008 9:11 PM (GMT 0)
WOW, Luis! I would say you definitely have been on it too long. I was on and off prednisone for several years, usually with no more than a month in between, and after 4 years I was diagnosed with osteopenia. And I was not on prednisone continuously as you are. I would definitely suggest asking for a bone density scan and doing what you can to get off the prednisone. I too am steroid dependent when I get on it and if I drop below 10mg I start to flare. Then I started taking azathioprine/Imuran which helped me to finally stop taking prednisone. Now I tell my doctors I refuse to take it unless it's life or death!!
Your GI really should have advised you about potential risks and side effects and the fact that he would let you use it as a long term therapy raises a red flag for me! If I were you I would consider probably looking for another doctor. Good luck!
Posted 5/28/2008 9:50 PM (GMT 0)
Luis,

If you have UC you cannot or should not entertain the idea of an ileorectal anastamosis. UC will just return to the rectum and you will continue on your cycle of meds. If any surgeon or GI were to propose this for UC I would run fast to another doctor for a second opinion.

Sue
Posted 5/28/2008 10:26 PM (GMT 0)
Sue,

Is the ileorectal anastamosis not the same as a J-Pouch? What is the difference??
Posted 5/28/2008 10:40 PM (GMT 0)
Hi Edie
Here is a good link with explanations and diagrams that will help explain the differences and some other surgical
options. Hope this helps!

http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease4&organ=6&disease=38&lang_id=1
Posted 5/29/2008 12:26 AM (GMT 0)
Luis:

Yeah, it sucks......I"ve been trying to get into drug trials to get off of prednisone.  I tried Entorcort, and the first time it worked for about a year and a half...then things turned bad and I went back on the pred...tried Remicade..no go...went back on Entocort and it lasted about 6 months (strange medicine)...and, went back on pred..so, now I go on pred/entocort/pred/entocort/etc.

I've got cataracts now..and, will have my left lens replaced within a year..looking on the good side, I've got astigmatism and 20/400+ vision, so that surgery, though not wanted, will at least let me see better....funny, huh?!

I do have thinning bones, but I exercise daily and take lots of calcium, D, and the general vitamin regimin..... 

I read somewhere that after much research, Dr's discovered there are four kinds of multiple sclerosis..I'm wondering if UC has different causes/cures for different people as well?  I think that's why several of the drugs don't work on all of the people who need them.

Good luck with you Dr...I agree with the other posts..if he doesn't come straight with you, you should find somebody else who will help you "experiment" with other applicable UC drugs...me and my Dr. have been around the block a few times, but I've tried all of his and he allowed me to try my suggestions as well....a team we are!

smurf  Be Kewl!

Posted 5/29/2008 1:25 PM (GMT 0)
Hi Luis,

Do you also take Fosomax w/the pred? It is supposed to help w/bone density, I also take 500mg cal + vit D 3xday.
Posted 5/29/2008 2:32 PM (GMT 0)
Didnt a user on here "Bob shrek chewbacca the hunk" have to have his lower extremities amputated due to extended prednisone use?
Posted 5/29/2008 2:39 PM (GMT 0)
Beth,
Have you done your research on Fosomax? Prednisone and Fosomax are known to cause osteonecrosis(ON/avascular necrosis (AVN)...just wanted to let you know. I'm just trying to warn people since the drug makers don't...it's not on their label and the doctors won't tell you. Do a search linking the two (fosomax and AVN)and you'll see it all over the place. Like I said in my previous post, we didn't know what it was until it showed up in an MRI. If you have any kind of joint pain (or teeth pain as Fosomax general causes AVN of the jaw...not trying to scare just inform)...request an MRI since AVN will not show up on regular x-ray unitl it progresses. There are treatments if you catch it early.
Posted 5/31/2008 4:41 PM (GMT 0)
Hi All,
You all have some great advice. I did change my GI doctor to one at MGH. As soon as I saw him, his first concern was the long term prednizone use I have been on. It makes me so angry to think of my old GI and how laid back his approach on my treatment was. My wife always asked if I should be taking any type of supplements to try and offset or protect my body from the side effects of the preds and he would just say if you want to, but never recommended anything. At one point I thought my wife was just nagging me and the doctor with her concerns on the meds, now I see how wrong I was. I really trusted my old GI, boy was that a mistake. Now that my treatment is at MGH, they have ordered a bone density test.
Has anyone had serious problems with major headaches and bloody noses? I've heard of getting sores in the mouth if you suffer from UC, has anyone had one in their nose?

JD, is Entercort different than Humera? That is the one they might try next. I don't know if that might work for you.
Posted 5/31/2008 5:50 PM (GMT 0)
Yes! I used to have bloody noses all the time on prednisone, and sometimes when I'm not on it. I never had a problem with bloody noses before though. I'm not sure if I've ever had a sore in my nose; I know some people on here have; but I get sores in my mouth constantly. I currently have one on the inside of my lower lip, two inside my cheek by my back teeth, and I'm pretty sure there's one in the back of my throat because it hurts when I swallow. :(

Entocort is completely different than Humira. I didn't have any luck with it but I know some people do and it's supposedly less symptomatic than prednisone. But ultimately, the goal should be to get off corticosteroids altogether, perhaps by taking a drug like Imuran/azathioprine.
Posted 5/31/2008 5:54 PM (GMT 0)
Luis,
"they have ordered a bone density test. " This will be fine to test for bone density when checking for osteoporosis, but if you have joint pain specifically, you should put your foot down and demand an MRI since this will detect osteonecrosis and bone death. It's really in your best interest to take control of your health care and try to partner with a doctor that will listen to you. My daughter had a bone scan as we thought this would show what we needed to see, only to find out that the doctor that we've come to find out is the go to man for AVN/ON eschewed this test and requested MRI's of all of her major joints...and x-rays. I wish you all the best!
Posted 5/31/2008 8:07 PM (GMT 0)
Ive read all of your above comments and Im SCARED TO DEATH now! Im 16 and was just recently diagnosed with UC three months ago. My doctor immediately started a Remicade infusion the next day. I got my third infusion about two weeks ago and the day of my infusion they started me on a once a week shot of 25mg Methotrexate. It seems when I go below 20mg of Prednisone I start to flare. Should I talk to my doctor about taking me off Prednisone? My D is so bad that he doesnt want to put me on pills because they will just go right through me. I really dont think he wants to take me off the Prednisone but im really scared of being so young and taking the chance of having all those bone problems
Posted 5/31/2008 8:12 PM (GMT 0)
I second this...I just found out I have AVN after only two courses of pred. I'd warn anyone taking the drug that this is a serious issue, and never once did my doc suggest such a rapid bone disease could appear after only two rounds of steroid.

I'm now in a position of needing surgery of one or more joints and I was only diagnosed with UC 18 months ago... Oh and I'm just 24, what a bummer right?

If anyone experiences major joint pain with movement restriction then please go get it checked out asap.
Posted 6/1/2008 3:10 AM (GMT 0)
JG,
I totally understand where you're coming from...my daughter's 21. She was only on Pred for 4 months...granted, she was admitted for an acute attack of UC that was so out of control she had a colectomy and jpouch...but still....nobody ever mentioned the risk. It does mention osteoporosis in the RX handout and "bone loss," but in my opinion, that's a far cry from "bone death." I'm just trying to put information out there that I think is terribly lacking on the part of pharmaceutical companies and the doctors... But do ask them...see what they say. Then do your research... search for Prednisone and Avascular Necrosis or Prednisone and Osteonecrosis and see what you come up with. I guess in their mind, your bones are secondary to treating your inflammation.

Also, do yourself a favor and look at probiotics. I asked my daughter's GI for help with that and got nowhere. Now that she's had her colon removed, her surgeon recommends that she be on VSL #3 for the rest of her life to maintain intestinal flora to prevent pouchitis --- which is nothing more than UC in her jpouch....it all has to do with the bacteria in your gut. One packet of VSL #3 contains 450 billion bacteria. I didn't know how much to give her when she was in a flare and that's why I asked her GI for help, but he was "a science man" and wouldn't help me with "alternative therapy." And, if you ask your GI to give you a script for VSL #3, ask them to prescribe the double strength formula. We went round and round with our insurance company and found out they'll pay for the DS formula, but not the regular 450 billion formula...much like getting Motrin OTC, and getting a script for 800 mg from a doc by Rx.
Posted 6/1/2008 11:42 PM (GMT 0)
Harpo -- we don't really know the extent of Shrek's surgery at this point; part was from long term pred use and also from complications due to diabetes.
Posted 4/28/2009 3:19 PM (GMT 0)
My sister has crons and she was on Prednisone for 10 years.  She did not have any side affects that affected her bones.  My good friend however, developed Avascular Necrosis from Prednisone and steroids.  There is a great website that discusses Avascular Necrosis (AVN) and it's tie to steriods if you are interested here http://www.avnresources.org .  There is an account of someones story and how he developed AVN from steriods here Joels AVN story on that website.  Hope this helps you make a decision on whether or not to use Pred.

Posted 12/31/2013 8:34 AM (GMT 0)
Hello everyone I'm new hear but I have pan colitis since Christmas 2005 and I've been on preds for a couple year because no more options with medication which sucks. My last option is a j pouch surgery which I'm really scared because all the complications that could happen plus I have two kids that are 3 an4. I have a fracture pelvis from taking preds fo so long. I also have developed scalp psoriasis, ear psoriasis, finger psoriasis and patches on thighs all triggered from humira and remacaid. With both kids I was on preds had complications with both pregnancy.
Posted 12/31/2013 2:47 PM (GMT 0)
Californialove, welcome to the forum. You should start a new thread and introduce yourself - this one is really old.

I'm sorry you have had to stay on pred so long, and really sorry about all the problems it has caused for you. Seems like surgery is the best option for you. You might want to check out the ostomy forum for some specific concerns you might have regarding the surgery.
Posted 12/31/2013 3:17 PM (GMT 0)
Look at it this way: if you keep taking Pred, you WILL develop more and worse long-term side effects. If you have surgery, you MIGHT have complications. I think I'd take my chances on surgery if it were me.
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