Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group one thing I haven't tried

I don't care to discuss this any further. I'm at peace with the choices I've made and I don't need to defend them.

Karen

My layman's understanding of this is that steroids are a big category of medicine, and that we should be careful to make distinctions among them. The type and the amount used being a big factor!

As an example, it seems to me that the illegal steroids that the athletes took for sports performance are a far cry from the taper treatment that Marsha took for treating poison ivy while gardening (which definitely helped)

Your right. It doesn't make sense that changes in your thyroid levels could be the cause of all this. It sounds like you have been dealing with the tendon issues for longer then the thyroid has been acting up.

I know how frustrating all of this is for you. I have a family member dealing with mystery symptoms at the moment. Because of the strong family history of spondylitis, we were sure that AS was the answer. I am now wondering if our focus on that distracted the doctors from seeing the real problem.

Not knowing the cause can sometimes be more difficult then dealing with a diagnosis - even a serious diagnosis. That is partly why I followed your "Chronicles of Mayo" posts. We have been considering the Mayo option - probably for the same reasons that you did. I mean, they are supposed to be the best. I am sure that it is disappointing that you did not get better answers. (But gratifying to know that you are doing so many things right.)

Best of luck in finding answers...

Hi Karen,

Just to clarify a little, I was referring to glucocorticoids of course and not anabolic steroids, as I think we all were. Sorry for abbreviating. (anabolics don't get much mention on KA.)

This article seems somewhat relevant and I think may be of interest, from the Journal of the American Board of Family Medicine:
http://www.jabfm.org/cgi/content/full/16/3/209
Physician Prescribing Patterns of Oral Corticosteroids for Musculoskeletal Injuries
Kimberly G. Harmon, MD and Chris Hawley, MD
"Among physicians who used corticosteroids to treat musculoskeletal injury, severity of injury was the primary factor in decision to prescribe. Among physicians who do not use oral corticosteroids, lack of medical literature supporting efficacy was the primary reason given for not prescribing"

My intent wasn't to over state concerns about possible side effects of a short course (important to discuss but I hope not to be alarmist and really hope that is not how my words came across)... yet I wanted to voice the idea that just to begin balancing risk vs benefit depends on context. In a context where the indication for use doesn't seem entirely clear, there can't be the same predictability of results, or expectation of benefit. This would seem (to me) to shift the whole weight in determining risk vs reward. Struggling with past injuries which refuse to heal would differ a bit, for example, from a new onset tendon injury(s) in acute stage where a favourable response might(?) be more predictable. My (limited) understanding is that steroids can't be used with the hope to prevent injury... but then, who knows, I could be wrong. Couple that with the potential side effect of mood swings.. well, I just wanted to express my concerns.

I am glad you are not in serious pain Karen, and realise whatever you are dealing with is negatively impacting on your quality of life and clearly very upsetting... just wanted to offer my 2 cents (which has now morphed into 4!) in case it might help offer objectivity of perspective.

Good luck in your decision-making and my apologies for taking so long in reply.
mig

Mig, Stormy and Dow.
I appreciate all of the additional input and explanation regarding the use of pred for my issues.

The bottle of pills is still sitting on a shelf and I still haven't even gotten as far as calling the doctor at Mayo to ask about the option.

Frankly, I've been too worn out this week to do anything about anything except get through the day.

I'll keep considering this matter... and the pills will continue to sit on my shelf.

Karen

Hi Karen,
My oppinion, well you asked, been there done that
It's a roller coaster ride. The first few days you feel wonderful By the time you tapper off, you feel as bad or even worse than before In short, it's a very temporary fix.
How do you like the group at Mayo? Where is it? and how did you get a referral?
Cindy

Karen,

I just want to let you know your in my thoughts and prayers.

Kim

Thanks for the input, Cindy. It's still sitting on a shelf.

You don't need a referral for Mayo, but they prefer one. My family doctor did a referral for me and wrote a letter to them.

I thought Mayo was excellent traditional medicine even if they couldn't give me an answer. That's the short answer. If you want the long answer, read my posts from last week, Mayo Blog I though Mayo Blog VI.

How are you doing, Cindy?

Karen

Thanks so much, Kim. I appreciate it.

Karen

My Rheumy and GP are insistant that I not give up on this knee replacement and are sending me to University of Maryland Hospital next month to talk to the head of Orthopeadics there. He has done research on the immune responces to medial debrie from joint replacements and thinks this could be one of the problems with the 2 failed knee replacements. Keep your fingers crossed that I may have some answers. As it is now, no one will replace anymore joints on me because we have no answers to why the surgeries fail with me. Other than that, I guess I'm just treading water, one flare after another, hopefully things will calm down now that it's getting warmer and thankfully every morning when I get up and can walk another day.
Been a loooonnnnggggg winter and glad to see green!!!!!
Thanks for thinking of me
Cindy