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

There is one thing I forgot to ask the doctors as Mayo.

I'm wondering if a one-time prednisone taper would help me.

Let me be absolutely clear about something:

I HAVE ALMOST NO PAIN RIGHT NOW.

What? Why in the world did you go all the way to Mayo and stay for a week if you aren't in pain, Karen?

It's because I keep injuring myself. I've injured myself breathing, praying, talking and getting my teeth cleaned by the dentist.

I have these nagging injuries all over my body which refuse to fully heal.

Oh, they don't hurt as long as I follow the rules.

The rules are:
Don't do anything that involves spreading the knees or that uses the hip adductors (pull legs back in) intensely.

Never walk barefoot. Always wear orthotics. Don't walk too much on hard surfaces.

Don't do anything that involves ankle instability.

Carry a pillow everywhere you go and never sit down anywhere without it.

Don't use your hands too much, especially for grasping or squeezing.

Don't use your wrists too much, especially in extension (pulling the wrists back).

Sleep with your ankles, wrists and spine in neutral, a pillow between your knees and the hips flexed less that 20 degrees.

Don't ever look up, down or to the side for more than 30 seconds at time.

Don't eat anything too chewy or crunchy.

Keep your jaw in neutral.

Practice good posture at all times.

Don't sit for too long.

Don't stand for too long.

Don't do anything high impact like running or anything else which would stress the SI.

And on and on and on.

Believe me, I know that many of you would be thrilled to be pain free if you just followed rules like these. And I know that I'm lucky to even have the freedom to avoid the things that flare up my sensitive body parts. I have a huge amount of flexibility in my job, so I never have to stand, sit, walk or use my hands more than I want to. I also have a supportive spouse so I can avoid what I need to at home.

But I'm still sick of worrying constantly about flaring up one of my sensitive body parts because if I do flare one up, it takes a few weeks to bring it back down.

So here is the question: Do you think a one-time pred taper might clear this stuff up? Please remember I AM NOT IN PAIN, I just want to get all of these injuries to heal. My gastritis is also a concern because I don't want to flare it up. I'm taking Prilosec.

I could call one of the doctors at Mayo and ask this question, but I'm still interested in hearing what others who have tried pred think. Can't decide if I should call the rheumy or the internist.

And even if I get these injuries to quiet down and shut up, that doesn't mean I won't keep spouting new ones.

Any thoughts?

Karen

hi karen,

i know, i feel like i spend more of my days remembering my rules than anything else, though after a while so much of it becomes habit, i don't relize how very strange til i have to start listing them as you've done.

with that said, i pulled a back muscle or tendon or something last night......sitting, properly by all accounts.

prednisone?

i really don't know.

on the one hand, it really couldn't hurt to try, so long as you stop if your stomach starts to hurt, or your problems seem to get worse, possibly because of edema. those are the two reasons my docs and i have decided not to go that route. or whatever other intolerable side effects there may be. but a lot of people tolerate short-term prednisone, and who knows, i may be being overly cautious. i think its certainly worth a try, especially since you do respond to NSAIDS.

on the other hand, who's to say that once you are done prednisone, the problems won't come back?

then again, i'm a lot better now than i used to be and i think its mostly because: back in the late 90s and early 2000s, i'd injure something and it would never get healed up and then i'd injure it again or something else and it would just escalate out of control. then my physiatrist and PTs helped me learn how to heal things up. so now, if i injure something, the recovery time is much shorter and i can actually have good times in between, or at least better times. so, maybe resetting the body would have some benefit.

so, there you go, i know i didn't answer your question, but hopefully i gave you some thoughts to mull over.

sue

Hi Karen,
I don't know the answer to your question, but I wanted to say how bad I feel for you going all the way to mayo and not having any conclusions. However I think your list of not-to-do's might help them better understand the problems you are having. most of your list could have applied to me at one time or another, except for the shoes part, I like to keep mine off as much as I can. I'm glad to hear you found a way to keep near pain free.

Take care,
James

i was on predi once it didnt agree with me. i got what the doc calls predinsone syndrome it aint good but it is a rare side effect that makes the body shake almost like parkinsons, memory loss like alzheimers, once i got off the predi the doc says no more unless my life depended on it...my case from what ive learned is extremely rare...most people have done well with it with no side effects...id say ask the docs at mayo and see what they say......oak

Karen, just a thought have you seen a Naturalpath. They test you things you would not normally think of. Within there appointments I found out I vitamin D deficient, and my Cortisol was over the board.

He is sending me to a special Rheumy who deals with Lupus, Psoriasis, and Connective tissue disorder.

As the money is in short supplies his many tests he wants to send me for. He is spreading out over months. He said he believes I am highly toxic. He is testing how much mercury I have in my system, all the vitamins. He just keeps adding more tests.

I have gotten much more answers since being with him. I am asking for one more test he hasn't suggested yet AAT Defciency (Alph1-1 Antirypsin level). I have mild COPD, and liver enzyme problem. My father I know by his disease had one gene. I don't know if my mother has a gene. If she did, then my siblings and I would be AAT Deficiency)

I don't know about the question you ask about Predisone taper, as I will never be able to have it. It is worth a try to ask your doctor.

Hugs

Gerri

Hi Mouse

How do you keep to these rules, what do you have left? And what did you mean about the dentist and teeth cleaning?? sorry was that part of the pain or was that just added in

rules........rules.......maybe i need rules, hmmmmm m m m...the first rule is there are no rules! , this doesnt work hey. I punish myself because I do not obey my own rules, I never set my rules or had a say in setting them. I am driving myself crazy with this.......and worse - everyone else!!

Karen,
I have been on the pred. taper, 3 times in the last two years. It did take away the extreme pain and stiffness so that I could get back to normal activities; which in turn made me very sore later.
When I am dong osmething- changing the oil in my car: I often have to stop for a bit, to let the muscles get used to the idea- like turning the nut on the oil pan.
Yes, I owudl take the taper again, but for me it was when I was nearly bed fast and wanting to die.

I called my dr. and asked for a taper a couple of weeks ago. It was so wonderful to have a lot of my pain gone and to have energy. I cleaned out a closet and some drawers, went to lunch with my daughter, shopped. I knew how many days that I had with it and I made the most of it.

I would take one every month if possible. I still am reveling in the wonderful week that I had as I gulp the pain pills again.

I have done so many tapers. My rheumie used to give me a script to just keep when I thought I needed a taper to just do it. I have enough Pred all of the time to do it and know how but I don't without calling him first.

I don't think my dr. would if I told him that I wasn't in any pain. I need to print off your list and try it all and see what happens. I do a lot of it anyway but I am sure I don't do it all.

I hope you are getting rested from your trip and are feeling better about it.

I didn't get any new answers when I went but I was kind of relieved to know that I am doing all I can do. As the dr. told me, all they will do is treat the symptoms anyway. I just hate it that new symptoms keep popping up.

I wish the best for you. I enjoyed your keeping up informed about what was going on with you. I went to Jacksonville and I would like to go back just to have another going over and being sure I am still on the right track.

Have a great week.

Possi

Sorry if I'm adding things that are redundant or if I've missed something along the way.

First, No Way would I subject myself or a loved one to a prednisone taper when they are suffering from something that is yet to be diagnosed. Particularly if you are not in pain.

It would seem counter-intuitive to me. You would like to reduce the variables. Adding prednisone only changes the factors affecting you and even if you started healing or not getting injured in day to day things I don't know that you could or should conclude the prednisone helped.

I try to minimize what I'm doing to minimize the variables. Not sure if this makes any sense or if my lousy typing articulated my point clearly.

As for the constantly injuirng yourself, I'm sure you've probably been down this road, but my lovely Diane along with some mysterious liver issues also injures easily and does not heal well.

All of these issues are now being tied to her blood sugar and either having hypoglycemia or diabetes although it doesn't maniffest in other ways. Probably an avenue they've alreasy looked into for you but I toss it out there just in case.

I sure hope you find answers.

Pred helps me when I do a small burst and taper!!