Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What do you make of this?

Hey Everyone,
I could have sworn I would be in a flare right now with Brian leaving and all, but I haven't gone into one, and actually, feels like I don't have much inflammation going on right now...if any at all. What's up with that?
I still have pain and stiffness from fusing and damage that's already been done, but I am not waking up so stiff, and the stiffness that I do usually feel in the morning is gone so much sooner than normally. My days are slowly but surely being filled with much more activity too.
My pain meds are now cut in half except for my MSER, which I have to keep in my system if I don't want to have the fish out of water syndrome caused by nerve damage. And I am now lowering my prednisone... I usually go up on my pred when I try to lower my pain meds, which I did, but I am now thinking I didn't have to. Going to continue slowly going down on the pred to see if I can.
Could it be the antibiotic I am on doing this. It's the only thing I can think that I am doing differently. Guess I won't know for sure until it's time to stop it. Only other thing it could be is the disease actually giving me a break. Wouldn't that be just the most awesome thing!? Well, not the most awesome thing...that would be the disease giving all of us a break.
So, what do you all make of this? Have you ever had times when the disease just lets up and do you think I am actually experincing that, or are you thinking more along the lines of the antibiotic doing all of this?
I am trying not to let my wishful thinking run away with me in case it is the antibiotic...knowing I will have to get off from those someday soon.
But for now I can't tell you how good it felt to actually be up and ready to play by the time my grandson got here today. Usually he waits around with me on the couch until gramma's meds kick in and some of the stiffness wears off before she is ready to get up and do things with him. But today...gramma was already up, ready to make cookies and play, which is what we did. He already left to go home because he has a cold and his cough was really getting bad . But since then I have done the dishes, cleaned my stove and fridge and started on my closet (what a mess!). My mom wouldn't be too happy with me if she knew I have been doing all this. She says I don't know when to stop and get too carried away... having the habit of over doing it when I am feeling good. It's just that it feels so good to feel good and I like taking advantage, because who knows when it'll stop and/or happen again. I am sure you all can relate to that right?
I just now decided it was time to take a break, because I did notice that my lower back is starting to get a little aggravated, but I don't think it's from inflammation. I think it's just because of the fusing, which is bound to get sore after awhile, because it's so stiff there. See...I do know when to stop!
Ok, now I am starting to get carried away with this post. Just wanted you all to know what's going on and get your opinions on what you think may be happening.
Wish all of you could post posts like this, but hope this post at least finds you having a nice weekend without too much pain.
Hugs,
Lisa

Wow Lisa,... this is awesome news!

It just feels so nice to sit here and read that you've been getting a little reprieve from your pain! I'm so happy for you! Your post has left me smiling.

I suppose there could be many possible reasons behind this turn for the better, and the antibiotic sounds as good as any to me, but regardless, I sure hope it lasts for you for a nice long while!

Sending off more positive thoughts for Brian's continued safety.
Hugs, and thanks for the smiles!

mig

Hi Lisa

I don't really know what is causing this break for you But I do know that you do deserve to have a break from all the pain. Maybe it is the start of a nice remission for you. Enjoy it. It is nice to hear some good news.

Take care
Valerie

Oh my GOD! Wouldn't that be great if I was going into remission?!
I am not going to let myself get my hopes up too high just yet for that, but hey, it doesn't hurt to wish.
I just know that the last few days have been the best I have had in a long long time. I was just talking to my mom and she said she remembers when she was put on antibiotics that the same thing happened to her, so chances are that's what is going on. I'll take it though for however long it lasts and you can bet I am going to make the best of it.
I remember we had a discussion in the past in the forum regarding antibiotic therapy and I also remember me saying that I didn't quite agree with it, but I am now starting to think differently HA HA Now that I see what can happen.
I know my doctors don't agree with it though, for the same reasons I disagreed when we discussed it. So, I know there is no chance of this happening long term if it is the antibiotics causing this break.
I've had breaks in pain before, where I have felt better and could do a little more than I was, but never anything like this.
I am turning my neck more than ever, my shoulders feel loose, my hips and groin aren't aching as much etc... I did try pushing it and tried walking on my own, but that didn't happen. I did better with my walker though, so maybe I can leave my chair in the corner for a little while and try using my walker as much as I can.

Hugs,
Lisa

Thanks Mig! If it's making you smile like it is you can just imagine what it's doing for me
I guess if I was going to have some good days, now is the time to have them since Eric is having a tough time from his accident and can't help me out as much as he used to. He has to see a surgeon on the 27th for his shoulder and is going to PT for his hip.
He is understanding my pain a lot better now, but I don't like the fact that he has to feel it in order to understand it. Would rather have him not understand if that's the case.

Thanks for the positive thoughts for Brian.
I haven't heard from him since he left for Baghdad, but hoping to soon.
Hugs,
Lisa

(((Lisa))))!!!! I am so glad you are having such a good run. What dosage of Prednisone are you on? Are you on MTX or something else also? So did you cut your MSContin to 30? I guess I am full of questions but I want to be where YOU are. :o) I do feel so much better after the Medrol dose pack and I am down to 5 mg. of Prednisone but he is switching me from 5 mg. Prednisone to 4 Mg. Medrol because the dose pack helps me so much more than a Pred taper. I am still at 15 mg. MSContin 2xdaily with IR if needed but I don't like that because it puts me to sleep.

I am so glad you got to enjoy your grand and to get some house cleaning done? Awesome. Just remember to not overdo it.

I just want to remind you to take it easy because my flare didn't come until about a month later after our hard run in September with the deaths in the family. Don't want to take the fun out of your day, just want it to keep up so be sure and rest, etc.

I have been thinking of you.

I am so-o happy for you.

Joyce

Lisa,

wow sounds like something is working, whats the antibiotic? Cipro or Flagyl by any chance.

Take it easy, I find now when the flare lifts that's the time to watch out things getting stuck, and it;s the time to stretch and exercise gently.

Let us know how you are going?

David

IBD=It's Been Dreadful

Hey Lisa,

I used to experience similar episodes and would go off all my meds for months at a times. During those times I would have some stiffness in the mornings after actually being able to sleep most of the night. My regular back pain would still hang around and I had to be careful not to injure my back.

My doctors and rhuemy at the time called it being in remission. About a week or so before the periods of remission would end I would have a bout of colitis hit. I've always called my bouts of colitis my warning signal a flare is coming.

I am glad to here you are feeling and doing so well right now and hope it last for a while giving you a well needed break.

Have a good one,
Brent

Lisa,

Laissez les bon temps roulez

Best regards,

jcwinnie


Let the good times roll

Thanks so much Joyce. I so wish you were feeling this good too along with everyone else here.
Right now I am on 20 mg of pred, which is my normal dose I have been taking for a long time. When I lower my pain meds I raise it a little and then slowly come back down on it. Tomorrow I will try and drop it a couple mgs. I have some 5's and may cut them in half and do it little by little.
I still haven't had to raise my pain meds up. I was taking around 2, 30 mg IR's, 3 x a day, but I have been getting away with 1, 30 mg 3 x a day. My ER is the same though. I take 2, 30 mg at night and 1, 30mg in the morning. I am not going to push my luck too much and try and lower the ER, because like I said, I have nerve damage and nothing can be done about that whether it's the antibiotics doing this or it is some kind of remission. The nerve damage will still be there, which means the ER will be constant. It's good to lower the IR though.

I am not on methotrexate or any type of DMARD because of the liver damage I have which was caused by the metho a few years back. My liver is now full of fibrosis, which means I can't take anything that could possibly cause any trouble with my liver, and most of them do.
This is why I have been fighting in the past with my rheumy to put me on something, saying I am willing to take the chance, but she just isn't.
I was doing really well when I was on the metho injections and was really bummed when I had to stop it.
So, that's the scoop!
Today I am taking it easy for a little while. Hey, can you believe I actually slept in today? This was the first time in I can't remember how long. I am usually so stiff and sore by 4 AM and need to get out of bed and head to the couch or recliner..that's if I even go to bed. My bed always looked like such a trap to me.
I am going to dinner with my in laws and mom later on and I think I am going to try and use my walker
Hugs to you,
Lisa