Whitfield,

That is scarry that you hit the nail right on the head. I had a over active immune system when I was around 18. Basically my body started to eat itself. Sounds fun! Anyway, I had my immune system attack my muscles were I could not walk, I could not speak, I had sores and other problems with my skin. My lungs collapsed several times. I had every test in the world done to me. I was in a whelchair for many years and on oxygen 24/7. There is a ton more to the story, but I would have to write a book. Basically the auto-immune problem started at about 18 and went in to remission around age 23. I was on HUGE doeses of prednisone. In my eyes the Killer drug. It basically will melt you internally. As Whitfield and many other long term prednisone people can attest too. Anyway, Whitfield, I too am destroyed internally just as you. Not as much hip involvment, more ankles, knees, ribcage, spine, and wrist. I am tore up. Now at age 35, I am dealing with the after math of prednisone. It basically kills every bone in your body and makes them brittle and useless. Can you imagine that pain! Take every joint you have and take all the cartilage and soft tissues and rip them out. Now put bone to bone and walk and move. Then after a few year of the dead bone rubbin each other, you basically get bone fragments and flat spots and again tons of pain.

Tell me more about you!

California Chris

Which will be in Florida for 2 weeks at the end of January.

California Chris
Jusr read your post--I am not/nor are Dr's sure if the predisone caused this--It is certainly one possibility. I also went through 10 Day Intensive Cytoxen Chemo-therapy while an in-patient at Jackson Memorial in Miami--Then on Interferon Alpha injections for 2 years etc. etc---Any or all of these could have caused my problem with pancreatitus,MS.ADEM--who knows? Point is that we have to deal with the issue of pain--chronic pain--which I why I joined this forum--to learn about types of meds out there, how people respond to them---now it seems like I know more than my Dr. I am stable but not looking forward to the other hip replacement--I of course had complications--adema,DVT(Clots) etc--royal pain--1 week in hospital--10 weeks re-hab--Happy New Year--
Roger

Roger,

Every doc I went to see basically pointed right to steroids (prednisone). Any time I get my MRI read, the comments back from the guys that read the MRI always says, large lesions characteristic of steroid (prednisone) use. There was never a question. High doses of Pred will cause fat cells in the bone to enlarge. When the fat cells in the bone enlarge, the blood restricts, blood restriction causes bone death, bone death causes lesions, causes joint death and destruction etc, etc, etc.

How old are you? I was so interested to hear from you after I red your post. I have absolutely no ankles left. They are as broken up and thrashed as someone who could have been in a car accident and had there ankle smashed between 2 cars. My knees are also thrashed. Again two knee replacements are in my future, but at age 35, they want to hold off. My hips like I said were the least effected. My spine, rib cage and wrists also suffered bone death.

I basically have bones of a 60 year old as far as the osteoporosis goes. I am one step away from being sever osteoporotic. The most amazing part of all of this is I can still walk, and pretty good. The major thing is just all the pain and soreness. None of this will ever heal or go away. It will only stay the same, but most likely with use and age will get worse. So for me, I am set for a lifetime of pain care. I can not get ankle replacements, the replacement would not take. If they try and drill into my exsisting bone, they said it will fall apart like brittle concrete or clumps of sand. Same with the knees. When it ever comes time that I cant walk because of my knees, they would asses the option of knee replacements. THey also have said they dont think they will be able to get them to hold in the brittle bone. The rest of the bad stuff I will just have to live with.

This is why I have read the board and heard about people talking about wanting to quit pain killers and wanting to get off of them. I would love that, but I don't ever see how that could happen. How about you?

What part of Florida are you in?

I love Florida. Going on a cruise end of January!

Cheers and Happy New Year,

Cali Chris

Hey Guys, I'm not sure if your talking about steroid induced ostero perrosis, but that can be reversed. My wife had over 30 fractures and had both ankles reconstruction in 18 months. One of her briliant docs finaly did a bone density test and we learned the cause of all the fractuires from things as simple as sreping off the porch and breaking ankles or breaking bones in her feet, not to mention compression fractures of the cervicle and thoracic spine.

She responded very wel to The current osteo P treatments like Niacalcum, Fosamax, Boniva and the other once a week med, Actonil I think. She also takes Vit D and a calcium supplement, At her two year follow up bone density test, She hadn't had a fracture in 2 years and her numbers were no longer in the negative and apropriate for her age.

Unfortunately steroids are the standard and most effective treatment for many auto immune disorders. It's the lesser of two evils. They aren't goiong to let you drown in the fluids of your own lungs but you do take the risk of early onset osteo penia or osteo perrosis and any other negative effect steroids have. Fortunately there are meds and supplements that are proven effective for these kinds of problems.

If there is any potential these meds can resore the strength of your bones hopefully at some point excercise becames another tool you use to prevent worsening of these problems.

Good Luck, Dave

Shoreline,

Thanks for the message. I have already been on Fosomax for a long time and also calcium and others. I have been to at least 12 doctors abou this (and that is only the ones I can remember). The first responce when they see me come in is usually a smile and they are typically not thrown in any direction when I come in as I walk in with no problem and I am young and have a great attitude. So they normally just think that this guy who walked in may have something small going on. When they look at my 40K in MRI's and other films, there mouths always drop. It is almost comical as almost every docs responce when they put up the films is identical. Me and my partner always chuckle as it's a little humerous (the Doc response). Anyway, eveyone of them basically said the same and identical thing. This is one of the worst cases they have ever seen. They usually pull in other docs in the building and show them too. They CANT believe I can even walk. I tell them it is very painfull, but I am young and very vain and don't want a walker, crutches, or anything else for that fact. I push my body probably farther than need be, but I can't help it.

So the responce again is, worst weve seen, and there really is nothing at this point that will help. Each one askes if I need pain meds, and I tell them I already have a PM Doc, they usually respond with "that's good". Anyway, I guess everycase is different. They did decide to see if Fosomax and calicium would help. They had little faith. My ankles are so destroyed, that not a single ankle doc said they would touch it. They usually say they will go in and try orthiscopically clean up the knees a little, but not sure if it is worth it. They say that it probably might help for a short period (6 months).

I have been to those 12 ankle and knee docs specialist and then add of course the 100's of docs I have seen from age 18 to 35. But again with pain med help I can walk and do almost everything any one else can do. I can;t do any sports but I can enjoy a day at the mall etc.

Thanks again for the responce. I still have mixed feelings about the drug Prednisone. I am not sure I could ever praise it. But again they sometimes go back and say "you probably would not be alive with out it".

California Chris.

Happy New Year.

My 2007 wish is for the board to have built in spell checker!:p

Happy New Year everyone--answering california chris, I am 53 years old and have been on the patch for several years--I do have avascular necrosis and had right hip replaced last August--now need left one done--am looking into the minimally invasive type procedure so I will only have to be in hosp for a few days--last hip was a week and then back with complications of blood clots--really want to avoid that--I do take calcium, omega 3 and a few other supplements hopefully to slow down the "bone death"--still walk ok, but sometimes use a cane at the end of the day--will need until left hip gets replaced--not looking forward to it--all the best to you
whitfield

A few pills of prednisone can cut off the blood supply to your hip joint and then it dies and you will need a hip replacement. You don't have to be on prednisone for a long time for this to happen.

RAKE--Yeah, I have read that stuff too--pretty sure it was the steroids--but as my primary doc says--what difference does that make? I have to deal with it--Still need hips replaced--did right hip in Aug 06--hated the experience--my gastro dr says that it usually only affects hips not other joints as badly--was already on opiates for pancreatitus--have not taken prednisone since 2002--although fairly high dose for 10 weeks--tapered off completely over final 2 weeks(to treat the exacerbation from MS was reasoning from Neurologist)Thanks for input though--Roger

Funny thing is that the prednisone totally wiped out my ankles and knees, part of my spin and my a little of my wrists, but did not effect the hips much at all. I wish it was my hips and not my ankles. You can do a hip replacement, but there are no real options for total ankle replacement. I am sure it is hell having you hips replaced, but I know a few people including my mom that had it done and had no complications. They are running, playing tennis and walking like it never happened. Me however can't ever get these ankles to work.

I still stand by the fact that prednisone is evil, but sometimes neccesary. It just what is the better of the two evils, the prednisone or the disease it's trying to slow down....

California Chris

Yes, when I first was having trouble with my hips, I thought it was a symptom of MS and that cannot be fixed--I was happy when I found out that they can be replaced--But, had no idea what to expect--Did the right side first because that was the side that hurt even though surgeon said left was actually worse--now dreading doing the left but know I have to--hope to avoid complications this time (Blood clots)--But as you say, I know I should feel lucky something can be done--just really hate hospital, re-hab and everything involved--Good luck with your ankles Chris--
Roger