Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My first flare

Hi everyone,
Well, I'm living through my first flare. I started having a burning sensation in my glutes and my right ankle (already vulnerable due to a bad sprain about a year ago) started to swell a little. My doctor put me on 10 mg of Pred for about 9 days. It works for the most part. I see him on Thursday. I have absolutely no idea what he will say. Just thought I'd write.
Thanks,
Adrienne

Hi Adrienne,

Flares are not fun. I think I have been in a perpetual one for about 6 months now. I am wondering if your flare is connected to the prednisone. Last time you posted you were thinking of going off it . Did you? I know everytime I decrease my dosage I go into a major flare. It makes me scared to decrease it. But I am working on it slowly. Anyways hope it gets better for you. This is not a fun disease to deal with. Keep me posted on how you are doing.

Deborah

Sorry to hear you are experiencing a flare. I never was a big fan of prednisone. Glad to hear it works for you though.

Don't go into see Doc unprepared. Get a list of questions for him or else you'll get a quick lookover, a script for a sed rate and a pat on the back as he shuffles you out the door. Well at least that became my rheumies m.o. whenever I didn't grab him, so to speak, and pepper him with questions about alternative options and his next plan if the curent one doesn't work out.

 
stevec-they also serve who stand and wait

Hey Adrienne,

Hope you get straightened up. That Prednisone is some nasty stuff if you have to stay on it very long. We're all here for you. Take Care.

Keep Kickin'AS
Chris

Adrienne, burning in the glutes? Could be sciatic nerve action. I would go to a massage therapist for that one. If nothing else, it'll feel good which, when you're flaring, means a hell of a lot!

Hugs,

Kat

Hi Deborah,
Thanks for the words of encouragement. My dr. is the one that is decreasing off the Pred. Personally, I would like to be off of it all together. The weight gain has really done a number on my self-esteem. As much as I would like to be off the pred, I'm not sure if I'll get off it by Thursday when I see my dr. I hate the weight gain!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I also hate the uncertainty of this disease. It's a learning process that's really burning my butt (no pun intended or mayber pun intended). I just want it to go away. I want to be normal again or at least do what I was doing before all of this crap was brought to my attention. Ever since being diagnosed, I've noticed a change in my personality. I'm more reserved and less assertive. I've become more assertive over the last few weeks, but it's like I have to learn it versus just taking stuff for granted anymore. I've been considering starting the low starch diet, but I don't know if I'm ready to do that just yet. I want to be able to exercise again like I used to. I want to have days when I don't think about this. I worry about having children and the effects of the meds on them and passing this on to them. I get so angry sometimes and wonder what in the world did I do to deserve this. Before all of this stuff, I was so active and felt as if I had no limits. I'm learning that I have limits and I have to work within them (like every other human being.) Posting here has really helped to dispel the isolation and the confusion and the anger. Thanks again.
-Adrienne
P.S. How many mgs of Prednisone are you on? Any side effects? I think my flare may be in response to a pretty bad head cold I had a couple of weeks ago.

Inanna,
Stretching really seems to help and massages help too. I had several last year when I thought I had just a chronic cramp in my glutes. Is the sciatic nerve action the same as a flare? If not what is it? Thanks.
-Adrienne

Hi Adrienne,

I know just how you feel. I feel exactly the same way. What did I do to deserve this? Must have been pretty bad. Will I ever get my life back, my job back, my pre AS activities back? Will I ever be normal again? Will I ever be able to plan anything without wondering how I am going to feel that day. Basically I think it is just the luck of the draw. I have started the NSD but have not noticed a difference yet. You do have to be mentally prepared for it I admit. But I try to think of it this way, it is better than taking drugs (prednisone especially) and if it will help me get off them then that motivates me to go No starch. I am on 5mg pred a day. I don't even think it is helping that much but I am sure I'd notice a difference if I went off them. I have been taking prednisone since Jan1/03. Sure didn't think I would still be on them. Some say gradually work your way into NSD by starting LSD and gradually work your way into it.
Others jump right in and go NSD right away. When I posted that it didn't seem to be making a difference someone said it might be because of all the drugs I am on. So I am going to try and get off at least prednisone as see what happens then. Anyways Adrienne you hang in there. Something will work for you sooner or later. Don't be too hard on yourself especially about the weight gain. You have bigger things to worry about right now. Not to take away from what you are going through but it could be worse. Just look around this web site and you'll see people in the same boat and they are coping somehow. A lot of wonderful people out there. If it makes you feel any better I am going through the same thing as you and feeling not too happy about it.
Take care. Deborah

Hi Adrienne,

I know just how you feel. I feel exactly the same way. What did I do to deserve this? Must have been pretty bad. Will I ever get my life back, my job back, my pre AS activities back? Will I ever be normal again? Will I ever be able to plan anything without wondering how I am going to feel that day. Basically I think it is just the luck of the draw. I have started the NSD but have not noticed a difference yet. You do have to be mentally prepared for it I admit. But I try to think of it this way, it is better than taking drugs (prednisone especially) and if it will help me get off them then that motivates me to go No starch. I am on 5mg pred a day. I don't even think it is helping that much but I am sure I'd notice a difference if I went off them. I have been taking prednisone since Jan1/03. Sure didn't think I would still be on them. Some say gradually work your way into NSD by starting LSD and gradually work your way into it.
Others jump right in and go NSD right away. When I posted that it didn't seem to be making a difference someone said it might be because of all the drugs I am on. So I am going to try and get off at least prednisone as see what happens then. Anyways Adrienne you hang in there. Something will work for you sooner or later. Don't be too hard on yourself especially about the weight gain. You have bigger things to worry about right now. Not to take away from what you are going through but it could be worse. Just look around this web site and you'll see people in the same boat and they are coping somehow. A lot of wonderful people out there. If it makes you feel any better I am going through the same thing as you and feeling not too happy about it.
Take care. Deborah

Hi Adrienne,

I know just how you feel. I feel exactly the same way. What did I do to deserve this? Must have been pretty bad. Will I ever get my life back, my job back, my pre AS activities back? Will I ever be normal again? Will I ever be able to plan anything without wondering how I am going to feel that day. Basically I think it is just the luck of the draw. I have started the NSD but have not noticed a difference yet. You do have to be mentally prepared for it I admit. But I try to think of it this way, it is better than taking drugs (prednisone especially) and if it will help me get off them then that motivates me to go No starch. I am on 5mg pred a day. I don't even think it is helping that much but I am sure I'd notice a difference if I went off them. I have been taking prednisone since Jan1/03. Sure didn't think I would still be on them. Some say gradually work your way into NSD by starting LSD and gradually work your way into it.
Others jump right in and go NSD right away. When I posted that it didn't seem to be making a difference someone said it might be because of all the drugs I am on. So I am going to try and get off at least prednisone as see what happens then. Anyways Adrienne you hang in there. Something will work for you sooner or later. Don't be too hard on yourself especially about the weight gain. You have bigger things to worry about right now. Not to take away from what you are going through but it could be worse. Just look around this web site and you'll see people in the same boat and they are coping somehow. A lot of wonderful people out there. If it makes you feel any better I am going through the same thing as you and feeling not too happy about it.
Take care. Deborah