Osteoporosis Community

If it's a once-off injection I wouldn't worry about it too much; I think it is a common treatment and not a high dosis.

The red flag for steroid use is >5mg for longer than 3 months

Good morning, I was reading your comments about Steroid use. I, unfortunately, HAVE to rely on Steroids, to keep me alive. I have "Adrenal Insufficiency", which one can not live without the hormone "cortisol", which is produced there. The steroids are the ONLY thing scientists can come close to re-producing anything closest to this hormone. Anyway, I have to take 20mgs./a.m. & 10mgs./p.m. everyday! I also have Severe Osteoporosis, not caused by the steroid, but also, it doesn't help by any means! Recently, I had to have an Inscisional Hernia w/mesh repaired. To my surprise, @ my 1st follow up surgical visit, it was discovered I have formed a pocket of "fluid" in between the "mesh" & the last layer of tissue-skin. I thought my surgeon could just asperate it. NOPE! It appears, Steroids have another side-effect! Thinning of my skin! I guess, anyone's. But, my Dr. is more concerned with the begnning of an infection around the inscision, where my skin is literally, rolling off my body! So, I am in a "holding pattern" right now. Washing my skin, 3x/day with a anti-bacterial soap, then the anti-bacterial ointment, then covering with sterile gauze! Sounds fun, huh? None ever told me that STEROIDS could do such a thing! I am angry! Although I MUST take these d--- things to keep breathing, they are KILLING ME! Someone help me! What can I do?? What would any of you do?? I am sooooo upset....periwinkle

I'm so sorry you're having such a rough time. It must be so easy to get discouraged.

Unfortunately, some choices we must make are between two or more not so good options. Steroids are literally life savers, but they do come with risks. The same with chemo.

I would do what I could to stay relaxed and otherwise become as healthy as possible so that when you do have something like this pop up, you will have the resources to fight it. We do know that people in good health and with a good attitude recover more quickly and completely than those who just give up.

Your choice is made - steroids or not breathing. I'd have made the same decision. Now you have to figure out a way to manage the effects of the steroids because going without them is not an option. Maybe relaxation tapes, a support group, yoga for the stress and some gentle exercise to get your immune system working at top effeciency.

Whatever meds you need to take for the osteoporosis, take them. A fracture for you could turn deadly quickly. Make sure you're getting enough calcium and Vit D to give the meds something to work with.

Here's wishing a speedy recovery from the infection and no more health surprises.

WOW! Thank-you soooooo much, for following my troubles with this disease, I am fighting! And you certainly, hit the nail on the head, about trying to keep my emotions, in check. It's very hard to do! I NEVER know, what is coming next! Is it another broken bone? Surgery? Or, the ever favorite, has it moved on to another gland! Each & every move this illnesss takes, effects more parts of my body. Being an Endocrine disease, it's almost impossible to avoid, anything! Most people don't have a clue, exactly just how much, our Endocrine System's, have to do with controling our whole bodies! Just about every function! It's maddening! The pool is a great stress reliever, along with helping my bones. I get a blood draw, every 2 weeks, then my Endo, controls my meds, from there. The most aweful part about this illness, is, depression, forgetfullness, moodiness, ect... So, most people don't know, on a day to day visit, which one of me, they are going to deal with! Honestly. my family lives 750 miles away, and wants NOTHING to do with me! I think that, is the hardest pill, to swallow! Only because, I was the only one, of 5 children to inherit it! So, they truly do not involve themselves in "my problems". I think, one of them, has been with me thru 2 surgeries, out of 25, to date. And they wonder, WHY, I have an attitude! Then, here you are, showing more concern, and you don't even know me! God Bless You, & Thank-you, from the bottom of my heart....periwinkle

O.K. folks, Yesterday, I went for my "post Forteo" follow-up, bone density screening. I'm not exactly sure what the exact results were, (my Dr. will have today), but the woman whom did the test, when I questioned her, "How does everything look?" she kinda had a sorryful expression on her face. So, I pleaded, for an answer. She told me, these are not the exact results, but, "It;s obvious, the exam is going downward on the scale." I looked over & it was like a sliding scale, up & down. My results, after 2yrs. of injections of Forteo, definately WERE NOT improving! She explained, she had a-lot of figures to add in & what not, but it was obvious. MY BONES ARE GETTING WORSE!!! So, What would y'all do? What are my options? I ran out, crying, as I was SURE, everything had to be getting better! I spend so much time on bone builing, low impact exercises, take ALL my meds, & now I'm LOSING this battle! What do I do? What would you do? I seriously, feel like driving to the closest bridge, and jumping! It's like I'm beating my head against the wall!! I sure pray, my Dr., has some answer's, in his back pocket, cos I'm @ the end of my rope. Sorry to sound so depressed, but, I am...periwinkle

Wait for the final results. You can't look at the T-score and know if you're losing or not. It's about the BMD and the lowest significant change figure that is determined by the machine's precision test. Often we think if our numbers haven't improved, it was all for naught. Not the way it works.

Depending on the lowest significant change number, or margin of error, if your score falls within that area, you are stable, and that's a good thing. If your score is greater than that number, you are improving. If your score is lower, you have lost bone mass.

You have a lot of health issues that contribute to your current bone health and your response to medications. You say you've completed 2 years of Forteo. It may be that you can repeat that in a few years. We don't really know that taking Forteo for longer than 2 years is harmful. To date, it's just not been researched and validated.

You know, even if your bone density isn't where you'd like it to be, you could go the rest of your life and not break another bone. Body mechanics is certainly something you should make a priority. If you haven't gotten the booklet "Boning Up on Osteoporosis" from the NOF (www.nof.org ) order it now. It could head off a lot of problems.

Also stress, anxiety, depression release cortisol, which damages bones. You're pretty savvy and proactive, look into options for reducing your anxiety. A steady walk outdoors breathing in the fresh air is a great thing to do. I myself walk around the local lake here every day after work, weather permitting, just to regroup.

I hear your distress, just wait till the final results are in and go from there.

Thank-you so much for your kind words. One of my main issues is, My body does not produce Cortisol! THAT is why I must take all the Steroids, to keep me alive. It's all wrapped up in this genetic, Endocrine Disease I inherited. So, it's like, don't take the Steroids, I die. Take the Steroids, destroy, my body. Damned if you do, damned if you don't! I'm sure, my Endo, curses the day, I walked thru his door!! As for stress relief. I do walk everyday, twice a day, with my dog, whom also helps to reduce my stress. He's getting older & is beginning to experience, problems of his own, so it's kinda like The blind, leading The Blind! But, he has never left my side thru 10yrs. of surgeries, & somehow, always makes me smile! Even if I have to pick his lard butt, up on the sofa!! He knows when I'm sad, & depressed, and drags me outside! I know, God sent him to me, many yrs. ago for a reason! I try to focus on the beauty of the area I live in. I'm right on a tidal river & NOTHING makes me relax more than the sunrise, over the river! So, I am blessed with finding this place to live! It could be worse, & I constantly remind myself of other's that are in the hospital, suffering...And I also Thank God, for this site. The day I stumbled upon it, was one of my best! Thank y'all for all your input & well wishes. It truly, helps set my day in the right direction! Oh, and I also just purchased a DVD, on Tai Chi, as I understand it helps with stress, balance & strength! So, I don't think I can go wrong, there. Thank-you again, it really helps to read your inspirational words, periwinkle

O.K., I spoke to my Dr.'s office, (my appt. isn't util Feb.) and they told me, the Dr., reviewed my Bone Density results, and apparently he seems fine with it, as he put it in my folder til my follow-up appt. The nurse told me not to worry. So, with your advice & theirs I am trying to relax! I did find out another answer, to a perplexing problem that began several months ago! I started waking up, every nite, around 1:00a.m. to 2:00a.m. I pretty much chalked it up to anxiety & the fact that when I worked, I held down 2 jobs, starting @ 4:00a.m. til midnite or so! Well, I was watching a show on T.V. & a gal whom had cancer, on the show, made reference to being up all nite! Now, I thought, Peri, this is a T.V. show! But, reached for my computer & looked up, "Side Effects of Steroids". Sure enough, there it was! Insomnia! Along with a-lot of other things, I didn't really want to see! But at least now I know why I'm up all nite, on this site, shopping & writing e-mails to my friends, whom all think I'm crazy! I really try to not reach for my computer to "diagnose" myself, but when something is in your face, of course curiosity takes over! So, chalk up one more thing on my list of "Steroid Side-Effects!" periwinkle