Prednisone Induced Osteoporosis

[theend2]

Well I am feeling down today. Found out I have Osteoporosis and just turned 40. Prednisone has to be the cause of this. Not good. Even with the Vit D and Calcium I still got it. Did this happen to anyone else?

 

[Fruitcake]

Hiya

It happened to me at 23!! I'm 34 for now and still suffer with pain and now arthritis, although it took last until last year to get my bone density as good as having just osteopenia.

I had a bad back for a while but the docs just brushed me off for ages, it turned out I had crush fractures in 9 vertabrea and was stuck in bed for months once I had a bone density scan. Then it took me another year to walk properly without any help. I still have to take painkillers everyday.

If you have osteoperosis they should give you some kind of bisphosphonate which strengthens bone. I was given Actonel, a daily tablet. I did try Fosomax, a weekly tablet but it cause crazy hallucinations !!Funny for everyone else but not me lol. They are ususally given to women who are menopausal so some have hormones in, being young I avoided those ones..

I hope you get some treatment soon, I wouldn't wish any fractures on my worst enemy!

Lyndsey xx

 

[Astra]

Hi Lyndsey and theend

This is a bit worrying! How long were you on Pred to get osteo?
I'm tapering off now, hopefully to 10mg on Monday, then down to zero.
Whatever happens in the future, I will not take Pred again, I will be 47 this year and there's no way I'm ending up crippled with osteo.
But as a matter of interest, I'm on HRT (8years now) and rather hoping this is gonna ward off any bone density loss or osteo
lotsa luv to you both
xxx

 

[Fruitcake]

Hi Joan

I was on 60mg Pred for about 2 years, tapering off here and there but never completely off it until I changed to Azathiaprine and needed my first bowel surgery.

I was on daily calcuim injections at first but they made me sick every time and didn't improve my bones. I don't understand why they dont offer bone density scans to more people, I've accepted I was always going to end up with a stoma but it winds me up when I know there was no need for my back problems.

Nobody at work knows about my back, I just take pain killers every day and see a physio to improve my posture. I've lost 3 inches in height, people think I'm joking! Luckily I was 5'6 so being 5'3 now isn't too unusual haha.

It's probably a good thing you're on HRT Joan as it's said to help prevent osteoperosis.

Lyndsey xx

 

[theend2]

My goal is going to be first to stop the progression of the osteoperosis and then hopefully try to reverse it if I can. Its really just mind boggling to me how this happened. I am a 40 year old man with Ulcerative colitis and I have tried every drug out there to get this under control except cimzia due to insurance issues. The only drug that works in prednisone I have been on anywhere from 60mg to 20 mg for 2 1/2 years. So yes Joan this is very worrying. This should be a eye opener to all that read this and are in my situation. I just still can't believe it I thought for sure I was fine. My GI said seeing I had been on this prednisone for so long no stop that I should have a scan done well I am glad I had it done, now I can at least try to counter this osteoperosis. Crazy stuff. My back has been bothering me lately also but for most there re no sysmtoms until like you said there is a fracture or something. We thanks for your posts at least I know I am not alone. Just had some blood test done today to see if I am having issues with absorbing calcium and vit d which could also be why this happened so quick to me. I will keep you posted.

God Bless you all.

Scott

 

[Colt]

It took me all of 6 months at 24 years old (went as high as 60mg but probably averaged 25). But, things are a little tricky. It's so extreme and we lack a DEXA from before those 6 months that it's possible I had osteopenia even before the pred.

I also have terrible problems with vitamin D deficiencies regardless of supplements. Something endocrine is being mildly considered and I have an appointment with an endocrinologist. Frankly it's probably just a matter of poor absorption of fat soluble vitamins.

 

[theend2]

It took me all of 6 months at 24 years old (went as high as 60mg but probably averaged 25). But, things are a little tricky. It's so extreme and we lack a DEXA from before those 6 months that it's possible I had osteopenia even before the pred.

I also have terrible problems with vitamin D deficiencies regardless of supplements. Something endocrine is being mildly considered and I have an appointment with an endocrinologist. Frankly it's probably just a matter of poor absorption of fat soluble vitamins.

Hello Colt ya I just had blood test to see if I am deficient in Vitamin D and Calcium. It possible I got an absorbtion issue also but I am also going to work that angle as well. Thanks for your story. It helps to know all the angles that can get you on this one. So at this time I really do not know much but that I have osteoporosis. I said to the nurse your kidding right she said now you need to come in right away and go get these blood tests right away shes says like today. Still can't believe it. I hope this is good ammunition to send to the insurance company who denied me Cimzia.

 

[Daisy]

Same here. I am on long term prednisone because my adrenal gland now depends on it. I was put on actonel a few years ago and had to go off because of bone pain. Right now I'm on calcium and was thinking of asking the doctor if a once a month bisphosphonate would give me less side effects then a daily one. Weight bearing, strength and balance exercises are important, so are calcium rich foods in the diet, among other preventative measures. The good news bone density can improve so you all hang on to that.

 

[Fruitcake]

Hi Daisy

I tried one called Fosomax which was weekly,the daily one drove me crackers not being able to eat and just drink the water for so long after the tablet. But Fosomax gave me really bad hallucinations!!

You're right about the exercise too, I still see a physio 10 years later who gives me good exercises.

Lyndsey xx

 

[violetcreams]

Hi all. I've got my first bone density scan next week to see if the budesonide is turning my bones to crumble!!!

 

[theend2]

This is crazy. I saw my primary care doctor to talk about the osteoporosis and he also drop the old oh by the way we have to talk about your sugar level it shows that you are diabetic. I am losing it here I just can't believe it anymore.

 

[butt-eze]

When it rains it poors. I'm sorry that the news continues to get worse :/

I thought I had arthritis pain associated with Crohn's and long term steroid use. Turns out I have avascular necrosis. This is thanks to the prednisone I was on for two years.

My bone density scans are actually normal.

I'm 30 years old and trying to take this all in stride but its tough! We're all here supporting each other.

Thanks for sharing your story. Please keep us informed on the new diabetes diagnosis.

 

[theend2]

When it rains it poors. I'm sorry that the news continues to get worse :/

I thought I had arthritis pain associated with Crohn's and long term steroid use. Turns out I have avascular necrosis. This is thanks to the prednisone I was on for two years.

My bone density scans are actually normal.

I'm 30 years old and trying to take this all in stride but its tough! We're all here supporting each other.

Thanks for sharing your story. Please keep us informed on the new diabetes diagnosis.

Wow I can't believe you got avascular necrosis from 2 years of prednisone usage. Thats crazy. Well this is all so crazy I just turned 40 and its been down hill I need to climb out of this hole and treat all this and get better. If I could only find a drug that would work for for me instead of this prednisone. Thanks for posting your story and hang in there also.

 

[LadyVik]

I'm 20, 21 in November and last August I got diagnosed with "Crohn's related arthritis" (I still haven't a clue apart from my joints hurt but don't swell or look any different). I was in hospital last week and got put back onto Pred about 3 weeks ago after taking for ever weening myself off. Now I'm back to 40mg daily and it's killing me! Nothing else seems to be working, but anyway, this morning when I woke up I couldn't move because of the pains in my knees, ankles, hips and wrists... nearly had an accident I couldn't move that fast :O! Do you think I can ask for a bone scan as I am starting to worry. I have been on and off Pred for 3 years going from high to low doses but I haven't been strickly off them for 3 years. I did get given a weekly drug called something acid for my bones and daily calcium tabs but the weekly one gave me an allergic reaction and i just can't suck on the daily ones, they taste vile! I am getting very worried as my mum has rheumatiod arthritis due to her Crohn's and I have very nearly all other symptoms/side effects from the Pred (Bad teeth, eczema, mood swings etc..) so do you think I could ask for one if the pains continues? It is getting a bit unbearable not being able to walk around, it feels as though my ankles and knees might break if I stand a bit funny or walk a bit too hard??
Isn't it strange how you just can't just have Crohn's/Colitis, you got to have some other fandangle thing with it.. like arthritis, eczema, eye problems etc..
Arn't we all blessed!! Lol!
Hope all is well!
x

 

[theend2]

I'm 20, 21 in November and last August I got diagnosed with "Crohn's related arthritis" (I still haven't a clue apart from my joints hurt but don't swell or look any different). I was in hospital last week and got put back onto Pred about 3 weeks ago after taking for ever weening myself off. Now I'm back to 40mg daily and it's killing me! Nothing else seems to be working, but anyway, this morning when I woke up I couldn't move because of the pains in my knees, ankles, hips and wrists... nearly had an accident I couldn't move that fast :O! Do you think I can ask for a bone scan as I am starting to worry. I have been on and off Pred for 3 years going from high to low doses but I haven't been strickly off them for 3 years. I did get given a weekly drug called something acid for my bones and daily calcium tabs but the weekly one gave me an allergic reaction and i just can't suck on the daily ones, they taste vile! I am getting very worried as my mum has rheumatiod arthritis due to her Crohn's and I have very nearly all other symptoms/side effects from the Pred (Bad teeth, eczema, mood swings etc..) so do you think I could ask for one if the pains continues? It is getting a bit unbearable not being able to walk around, it feels as though my ankles and knees might break if I stand a bit funny or walk a bit too hard??
Isn't it strange how you just can't just have Crohn's/Colitis, you got to have some other fandangle thing with it.. like arthritis, eczema, eye problems etc..
Arn't we all blessed!! Lol!
Hope all is well!
x

Hello LadyVik I most certainly would go and get your bones checked. I would not think though at your age you would be suffering from Osteoperosis the pain you are feeling I think is completly from the crohns. I have that crohns arthritis also and it can really hurt bad to the point where you just cant move it sucks big time. Where you are so young I dont think you are feeling pain due to bone loss yet, But I could be wrong. I hope you can find relief from your pain. What do you do for the pain?

 

[Astra]

Hi Vik

I've posted somewhere else to you, can't remember where now, (pred memory loss) lol
Just about getting a second opinion, you shouldn't have to put up with this,
Anyhoo, noticed you're on codeine phosphate, mention this to your doc, this med can cause uncontrolled muscle movements and rigidity, and is also highly addictive long term, dont just stop them, you need to taper slowly.
hope you get some peace soon
xxx