Prednisone - Long term effect

My apologies for starting a topic that has probably been discussed a million times. I've been on and off prednisone since I was diagnosed 1 and 1/2 years ago. It's usually a vicious cycle of 60mg tapering 10 mg every 2 weeks until im down to 10mg and then that's where all the problems start. I'm not asking for advice on other drugs or therapies, I'm well aware of them all. I'm just starting to get concerned about my bones and other long term side effects. I don't feel them yet. I feel the short term ones, mood swings, acne (when tapering and getting near a low dose), fatigue, moon face. My doctor does blood work on me every month and no problems so far. Should I be going for a bone density scan at this point? How many people here have used prednisone for 2, 3, 4, 5 years without any significant problems? I know everyone is unique, but I need some hope. I unfortunately have to keep the steriod use going until I can find something that works right now.

I think a bone density is a good idea. And definitely taking calcium supplements with vitamin D. Some doctors now even start people on Fosamax or other medication to prevent bone demineralization when starting Pred.

I can't say anything in favor of long-term steroid therapy, I'm sorry. Didn't work out well for me.

Hi follyism. I've been on pred now for 2 years. I was on 60mg for a year before we were able to start tapering it down. The wonder drugs for me have been Balsalizide (http://en.wikipedia.org/wiki/Balsalazide) and Orencia (http://en.wikipedia.org/wiki/Abatacept) as it appears I have an allergy to traditional 5-ASA drugs.

You also might want to discuss Remicade with your Gastro specialist.

As for pred side effects, it completely stripped me of any libedo, I had no desire to eat, severe depression and paranoia, and the usual bone de-calcification. I also found that getting off the stuff after so long was very hard. Getting under 10mg has been a very very slow and painful process. I am now on 3mg/day. I find each time its reduced my body plays up for a week or so, but it does settle down again.

And with regard to the bone density thing. Drink milk if you are able to, and/or a decent calcium + glucosamine suppliment otherwise. I had trouble with milk till I got on the pro-biotics. I found a probiotic that helps break down the lactose for me and stopped the gut upset I had been getting.

Husband has had very similar situation.  On and off the prednisone and steroid dependant.  He was put back on 40 mg last May when the Imuran was started.  He was put on a very very slow taper schedule once it appeared the imuran was beginning to make a noticeable difference.  The taper is by 2 1/2 mg.  He is soon to start 5 mgs then 2 1/2 then zero.  I was thinking myself it should be even slower and longer from this point but the Dr is so sure this is the way to go.  The only bad thing is the "withdrawal" type effects.  Very tired and bad acne (roseacea) outbreak.  Hopefully in another month or two the most when the prednisone is totally out of his system he will rebound from these two issues.

He is still needing the pain meds due to the lower end of things still uncomfortable.  The remission is in process and slow but he has not regressed.  On a scale of 1-10 he says he is about an 8 having been at zero for quite a few months at his all time worst. 

He had the bone scan done and needs fosamax weekly plus daily calcium supplements due to some osteopena.  It is a wise idea to get a baseline established so you can treat it accordingly.  As I understand even though it is slow it can be reversed and corrected and keep it from getting worse.

I hope you can successfully taper - the other 3 times it was too fast a taper for my husband and he just couldn't stay off it once he got to 20 and 10.  Having read posts from some other people here when he was put back on in May I requested that we try this time to make it longer and slower so it would not happen again.  Maybe it would not have due to the imuran being started but all I could think of was here we go again.....

I wish he didn't need to be on so many meds but they are what gave him somewhat of a life back.  In time we will work on the pain meds being eliminated, less reliance on the rectal meds regime currently on and possibly the asacol dose lowered and imuran too.  That is a long range goal and will take quite awhile but it will be nice someday to maybe be able to rely on less medication overall to keep a good balance.

This is an overview of what ended up helping and making a difference for him.  Good Luck.

Thanks everyone for the stories and advice. I bought some calcium supplements today and will force my doctor to schedule a bone density test. I might even start getting my lazy self to hit the gym again.

princesa, what type of teeth problems did you have? My dentist told me I have hypo-calcification and that I need to use ACT mouth wash. That was about 6 or 8 months ago. I never had a doctor tell me in my life that I had hypo-calcifacation. You're making me paranoid that it might be the prednisone now. Is that the problems with your teeth you had? Has anyone else had teeth problems because of prednisone?

I've never been on oral steroids but steroid enemas for about a year. And even though not much of the steroid actually goes into the blood stream from the enemas, my primary still sent me for a bone density test. I think mainly because I have several risk factors already for osteoporisis (thin build, family history etc). The scan was probably the easiest medical test I ever had to take! And it was cool watching the outcome of the scan on the computer screen. But I'm glad to report that I have absolutely no thinning of the bone. So definately ask for the test because it's best to catch any possible thinning of the bones before it gets out of control.

follyism said...
princesa, what type of teeth problems did you have? My dentist told me I have hypo-calcification and that I need to use ACT mouth wash. That was about 6 or 8 months ago. I never had a doctor tell me in my life that I had hypo-calcifacation. You're making me paranoid that it might be the prednisone now. Is that the problems with your teeth you had?

I had pretty much perfect teeth - only one or two cavities - until I was diagnosed with UC and had been on a couple of extended rounds of high dose pred. After that, I began to get soft spots and cavities pretty often. One tooth was so bad, it had to be crowned and I've got another that's cracked that we're keeping an eye on. I've had people tell me this is normal as you get older, but I disagree. My brother is almost five years older than I am and still doesn't have a cavity in his mouth. It only makes sense if pred causes bone loss, it would affect your teeth, too. I noticed tartar seemed to build up faster, too.

After several years of remission, the decay seems to have slowed or stopped, much to my relief. My husband, who has pretty bad teeth and gums and only agreed to see a dentist after we married, had the Sonicare toothbrush recommended to him by his dentist. It has turned his situation around, gums are healthier, etc., so I've started using it, too. I'd highly recommend it to anyone who's having issues with their teeth.

P.S. to Addam: I have recurring nightmares about my teeth crumbling in my mouth and me having to spit pieces out. Weird, huh?

Adoubledg said...

follyism said...
Thanks everyone for the stories and advice. I bought some calcium supplements today and will force my doctor to schedule a bone density test. I might even start getting my lazy self to hit the gym again.

princesa, what type of teeth problems did you have? My dentist told me I have hypo-calcification and that I need to use ACT mouth wash. That was about 6 or 8 months ago. I never had a doctor tell me in my life that I had hypo-calcifacation. You're making me paranoid that it might be the prednisone now. Is that the problems with your teeth you had? Has anyone else had teeth problems because of prednisone?

Hey you asked if anyone has had problems with their teeth from predisone besides princesa and I'm here to say ive had major problems.

I was diganosed with UC at the age of 17 and was put on a high does of predisone because nothing else worked.I was on and off it for almost two years.The 2nd time I was on it I noticed strange things happening to my teeth,brown spots forming on them which was clearly decay.Whats sad is right before I got sick with UC I had my braces taken off and my teeth had never looked better.

Things got worse even though I was going to the dentist all the time.They would fill in my teeth/bond them and a month later some random tooth would start breaking apart/they were crumbling apart *the stuff of nightmares* or I would need a root canal.The dentists *it was a team of two* I went to said the predisone had stripped my teeth of all it's calcium/protection.

It was hopeless,scary and painful till after 4 years of not being able to stop it,they sent me to a cosmectic dentist who completely shaved down all my teeth and capped them all with Porcelain veneers,which cost a darn fortune.Ive only had to have a couple of root canals in my teeth since ive been going to him and it's seemed to stop the decay because he bascially got rid of all my teeth except for the roots.

My former pediactric gastro doctor didnt warn me of any of this and frankly if I could sue him I would.

And to top it off the steroids have given me Osteoporosis in my hip and osteopina in both my wrists and I just found out about that 3 months ago.My first scan a few years back showed nothing was wrong.

I'm probably the extreme cause all this horrid stuff happened to me and some people dont have any of these issues.Truthfully Ive only read online maybe two or three other people complaining about teeth issues from the drug,it seems pretty rare.

I'm sure I kinda scared you and Im sorry if I did,I just dont want anyone to ever have to go through what I have and am stiill dealing with cause of the predisone.

The only plus to come out of this for me is my teeth look better now than even after the braces :P

edit- princesa,I'm also curious as to whats happened to your teeth.

Hi Addam if you see this,,, I am 27 as well and been having problem with my teeth,,,, How much if you don't mind my asking was it to have your teeth done as I am steriod depentant and now on remicade...Thanks Rebecca

follyism said...
Has anyone else had teeth problems because of prednisone?

Wow...funny; you should say that...I was in the hospital nov 1st to 6th, and on very high doses of IV steroids.    Since that hospital stay,  I have had the WORST tooth sensitivity.   Just breathing in will hurt.  I order all my drinks in restaurants with no ice, and leave all my drinks out of the fridge.   I figured its the steroids (what bad side effect ISN"T the steroids?)     I am currently tapering, and was hoping the tooth sensitivity would improve after being off the steroids.   You think it might be permanent????  YIKEs! now i'm freaking out!

Hi,

I went to the dentist yesterday and found out I have two root cavities.  I was bummed.  I have had two teeth chipped (in the last year) which lead to both being capped.  I am very good at teeth upkeep (brushing, flossing, and using a floride treatment) but it doesn't seem enough.

I have been on Prednisone for over 5 years, and have been told I will probably always be on Prednisone.  As for pred side effects, it completely stripped me of any libedo, I have some depression, weight gain, moon face, and the usual bone de-calcification. My muscles cramp constantly and I have low thyroid now.  I regularly get blood tests to check everything.

I have found that getting off the stuff after so long is very hard. Getting under 10mg has been a very very slow and painful process. I am now on 10mg/even day, 5mg/odd day. This is the lowest I have been in years, I'm hoping that I have a good winter and am able to continue my downward trend.

I have to take 1500 mg of calcuim a day, with 400 mg of vitamin D.  I take B50 complex and enichenea to help my body fight off illnesses. I have to take numerous asthma meds (inhalers, nebulizer meds, high blood pressure (from the weight gain), and I have GERD.  So needless to say I was thinking I was the only one having these major issues.  It helps nowing others are out there understanding what I am going through, though I wouldn't wish these issues on anyone!

My Husband doesn't understand, though he does try. 

Prednisone ages the connective tissue. Much connective tissue is deep in the body. Sometimes the side effects go unnoticed.

For example, take the eyes. Glaucoma is an eye issue that generally occurs due to aging of the eyes. The eye doctor will give you an eye pressure test to test for glaucoma. If the test results show a number above a certain amount (>21 mm Hg), your doctor will tell you that you have glaucoma and treat your eyes for it. Now let's say you were prescribed pred for your UC. You were on it for three months. The highest dosage was 40mg. The average dosage was 25mg. Let's say that before you were on pred, your eye pressure measured 14 mm Hg. You go back to the doctor, and it's now 19 mm Hg. Clearly, it's gone up. However, your doctor will probably never mention it to you. Just like blood pressure, eye pressure can vary. Your doctor will most likely assume that that is the reason for the higher level. And besides, the number is under 22 mm Hg; so there is no reason to treat for glaucoma.

This is sort of what happened to me; only I don't know the before number, because I saw a different eye doctor. I do know it was low though, because he mentioned that to me. However, the last time I saw an eye doctor, after being on pred, it was 20 mm Hg. My eye doctor causally mentioned that it was on the high end. And then he told me not to worry, that some people have a naturally higher level.

I realize that pred isn't considered a so-called 'maintenance' medication, but would it still be as harmful if taken regularly in low doses?

Suppose 2.5 or 5mg is enough to keep flares at bay and the ONLY THING that seems to do the biz?

Just what (continued) dosage has the harmful long term damaging side-effects?

It seems to me that pred is a bit of an enigma. It's universally employed to 'rescue' us in a flare, and it usually does just "what it says on the tin" (puts us in remission). We breathe a sigh of relief and are thankful for it. Then we taper off of it and are supposed to hate it and spit on it with scorn, swearing to NEVER use the NASTY horrible stuff again EVER!

'Til the next bad flare.

Mackster said...
I realize that pred isn't considered a so-called 'maintenance' medication, but would it still be as harmful if taken regularly in low doses?

Yes. Most definitely pred is harmful if taken regularly, even in low doses. Pred can cause muscle weakness, osteoporosis, cataracts, increased blood pressure, high cholesterol, and bleeding of the stomach and small intestines. Like I said before, pred ages the connective tissue.