Anybody have experience with taking steroids long term?

[Marisa6826]

I went through four rounds of progressively stronger doses of prednesolone for asthmatic bronchitis over the past several months. I think the last dose I took was about four weeks ago.

The pulmonologist had me on a pretty high oral dosage (32mg/day) in addition to two types of inhaled steroids for about three weeks toward the end. The only other alternative was hospitalisation. He mentioned that I should be taking calcium supplements, since apparently, steroids leach it from your bones. So, I dutifully took my twice daily dosage, and thought all was fine.

Until Saturday morning when I stepped down onto my porch from my front door -- all of 4" in height -- and broke my right ankle. My GOOD ankle (the other one just went through two consecutive surgeries).

I can't help but wonder if the steroids have something to do with this. I broke the end of my fibula off. Right now, they're not sure whether or not I will need surgery to put a pin in the bone. I won't know till next week.

Now, to make things even more complicated, I've been wheezing. I REALLY REALLY don't want to go back on steroids now. And I know that's what's going to happen if I call my pulmonologist. The wheezing isn't bad, so much as it's annoying.

Anybody BTDT? Suggestions?

The bottom line is that this just sucks. *sigh*

-m

[Lynnie]

what a nightmare ! I am so sorry, I don't know anything about long term usage, since it only took me a little over a month or so to kick my episode last fall/winter, but I just wanted to send you my sympathies.

This may be a silly suggestion, but have you tried any dietary changes or alternative/natural medicines ?? There may just be things out there that you could do to minimize your chances of it reoccurring.

As far as your ankle - ugh. Hang in there !

[caleymama]

Oh no! I have not BTDT and have no suggestions, but just wanted to send some good thoughts your way. I really admire the way you've dealt with all of this and I hope you get some good advice. Feel better!! You'll be in my thoughts :).

[schums]

Were you on calcium supplements (like the OTC chewable things) or were you on a "bone building" medication, like Fosamax? If you weren't on something like Fosamax before, you might want to ask for it now. DS's preschool teacher broke her ankle, was in a cast for a couple months, then shattered it about 1 month after she got out of the cast. The Dr. said it was because she wasn't on Fosamax (or something like it) and the bone became super brittle without normal usage. Since you're looking at cast time, I'd definitely bring it up with the doc.

Sorry about your ankle -- that totally sucks!

Sarah
Mom to Alex (3/2002) and Catherine (8/2003)

[Fairy]

I got nothin'. Except a big huge hug. I'm so sorry you're going thru all this. Ugh! I have to tell you, if you're bronchitis isn't better, you might want to consider a trip to the Mayo Clinic. I know it sounds silly, but these huge rounds of steroids with little or no effect just kills me. I'd be aching for another opinion completely away from your state and network of doctors. I wonder once your ankle is travel-bound if you might want to consider trying to get into the docs at Mayo for a consult. I'm thinkin' about you!

[Marisa6826]

Just basic Target calcium tablets. Maybe I should have a script written for the Fosamax.

I'm always thinking in the back of my head that too much calcium can be a bad thing since J had that horrible experience with kidney stones. I guess I need to get over that phobia (I do drink milk, eat cheese, etc.)

Thanks for the heads up.

-m

[trumansmom]

I second this idea. Especially since it's only a few hours away from me and I would come play. :)

Jeanne
Mom to Truman 11/01 and Eleanor 4/04

[Aunt to sweet baby boy]

No experience with being on steroids the way you have been M, but i wanted to say how much i hope your ankle heals quickly.

I hope that after your ankle is healed you have a few months of health!

Ilana, aka Nana to my sweet nephew Avi

http://lilypie.com/pic/061128/V76Q.jpg[/img]http://b3.lilypie.com/wYA-m8/.png[/img][/url]

[shilo]

oh, wow. that does just suck! big hugs. sorry this is so long, but i hope it helps...

there definitely are some not insignificant side effects from long term steroid use (generally considered to be >4mos, definitely considered longterm use by 6mos and at your dosage, i think there have been studies to show some affects in more like 2-3 mos in some people). i'm sure you can find plenty of lists googling, but generally, the one's we're taught about are increased risk for osteoporosis, insulin resistance (can tip someone who is borderline diabetic over into diabetes - often resolves when the steroids are tapered), immuno-supression (decreased ability to fight off infection), skin changes (thins/drys out, easily bruised, etc) and redistribution of body fat (especially to the face and back of the neck - lovely, huh?). all that said, with the exception of antibiotics, there are probably few other classes of drugs that have such a broad ability to save lives/affect disease in our bodies.

as far as the osteoporosis goes - things like wrists, shoulders and hips as well as spinal compression fractures are more commonly associated with bone loss/calcium depletion, but an ankle wouldn't be outside the realm of possible correlation either.

i'd ask for the following - you need to get a baseline measurement of your current bone density. this is called a DEXA scan. it's a painless xray that looks at your hip and spine, and given your history, i can't see why your insurance wouldn't cover it. your pulmonologist or any specialist dealing with long term corticosteroid use should be on top of this, but if not, if you have a good primary care physician, they should be looking out for your overall health picture - so i'd express your concerns to him/her and come up with a plan of attack. if not, ask your orthopedist, given your recent history, i don't think they'd think it unreasonable.

the DEXA will tell you two things. how your current BMD (bone mineral density) compares to the norm for your age/sex (in standard deviations). this can help determine 1. if you should consider going on a 'bone building' drug like fosomax (see next paragraph) and 2, it also gives you a point from which to begin measuring how the steroids are affecting your bones over time - definitely something anyone who's been on prolonged steroids should be keeping track of with their PCP.

as far as drugs like fosamax, the 'bone building' bit is really a misnomer... these drugs really don't help you build new bone so much as they inhibit the normal 'disassembly' part of the bone regeneration process that is always taking place. basically, you have what are called osteoclasts (bone disasseblers) whose job it is to break down old bone and osteoblasts (bone assemblers) that lay down the new minerals that calcify into new bone. some of the new drugs are also thought to be able to help stimulate some osteoblast function as well, but for the most part these drugs really just keep you from loosing additional bone by inhibiting some of the osteoclastic process.

the main way our bodies (via osteoblasts) lay down new bone is thru weight bearing activity. it's called wolff's law - basically, the bone responds to an increase in stress thru it's structure by laying down additional bone to support those stresses, over time. your body can only do this if it has the calcium and vit.D available to it, so that's key. a drug like fosamax can help you keep taking steps forward by limiting the body's normal 'disassemble' part of the action, but without the weight bearing exercise, you can't really make any forward progress. once this new fracture is healed, if you do have some osteopenia/porosis going on, consider asking for a referal to a physical therapist to get you started on a safe regimen that will help you towards the goal of increasing the bone mineral density.

other ways to reduce the risk of developing further osteopenia/porosis which are just good for us in general are to limit smoking/alcohol and eat foods rich in/take calcium + D (your body needs the vit. D to make use of the calcium correctly). also, there are some pretty interesting new studies showing a strong correlation between decreased BMD and soda, cola's specifically. they think it's probably the phosphoric acid associated with the caramel color, but some studies have also pointed to caffeinated cola's worsening the effects. 'clear' sodas don't seem to have the same effect, but if you're drinking those instead of a glass of milk or fortified OJ, it may be just as bad.

anyway, i hope this at least gives you more info for when you talk to your md about it. it's a tough line to walk - important to have the asthma/wheezing under control, but definitely want to keep tabs on the side effects of the steroids. i'd consider switching pulmonologists if your current one isn't on top of this, if this wheezing is something you're going to be dealing with regularly, and steroids are the only thing controling it, your pulmonologist needs to be an active partner with your PCP and you in keeping on top of the side effects.

more hugs, lori.
Sam 5/19/05 How lucky I am that you chose me.

[almostamom]

There's a Mayo where I live too, you know! ;) She could come here and play. Of course, you do have better weather where you are and that whole Mall of America thing! Crud, I lose again! ;)

[o_mom]

I would call immediately and insist on a bone density test. A fall from less than standing height that causes a fracture is a sign of osteoporosis. I would be seriously concerned. There are medications for osteoporosis beyond just calcium that can help.

I don't mean to scare you, but my family has a strong history of this disease and I know how debilitating it can get very quickly if not treated.

[chlobo]

Wow. This is really great information. Thanks so much for the explanation of fasomax. My mom takes it but I've always tried to encourage her to do weight bearing exercise as well, which she's been resistant to.

[Moneypenny]

Ditto to everything she said! My mom has to take steroids fairly often for a chronic lung disease (sarcoidosis) and has bone density issues. Unfortunately for my mom, she is unable to take Fosamax, Actonel or any of the other osteopenia/porosis drugs because they cause gastric bleeding in her, so she just loads up on as much calcium as she can and trys to engage in lots of weight bearing exercise. Luckily, she hasn't yet broken any bones, but she gets a bone density scan every year and hers keeps going down so she now officially has osteoporosis. :(

Good luck to you and big hugs!!

Susan
mama to my cutie pie, Avery
http://www.gynosaur.com/assets/ribbons/ribbon_sapphire_24m.gif[/img][/url]

[o_mom]

There are other meds available that aren't GI issues - Evista and Forteo are two that she could ask about. My Grandmother is on Evista because she has a hiatal hernia and can't use the bisphosphonates (Fosamax, etc.).

[caleymama]

Ditto - word for word!

[Marisa6826]

Can I just say how much you rock, Lori?!

Thanks so much. You, as always, come through with great information.

Big hugs

-m