Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I really am still here

Hi Liz

It was great to here from you!! You are so sweet. I am so glad you are doing well on the remicade. I know how you feel about the prednisone. It is a heck of a drug to get off of. I couldn't get below 30mg for 3 years. 29 didn't even work. Isn't that strange that 1 mg can make such a difference. The good thing is that at 5mg there are much less problems with osteoporosis and other S/E. I have been on 40 mg and started taking myself down too fast. I was going down by 10mg a day, my rheumy had a fit when I saw her this week. She said when you have been on a high dose for a long period of time you should taper by 1-2mg a week. She said the rule of thumb was if you missed a dose for 24 hours then you needed to receive it intravenously. I didn't know it was that serious so I am back up to 35mg. My face is getting all mooned shaped again, I hate that!!!!

CONGRATS on your loft that sounds absolutely beautiful!!!!! Isn't it wonderful when you feel well enough to accomplish dreams like that. You really learn to treasure everyday.
When are you going to see the King and I? We are seeing it on Thurs Aug. the 14 or 15th, it would be too cool if that is when you will be there!!!!!!


Anyways it is great to hear from you, you sound so happy and full of life!!!!

Lots of love

Simone

Hi Jade

I have missed you also. I am a travel freak and want to see the whole world. Norway is also on my lists of places I would love to go to. It looks like a beautiful country!!! It is good to be back at Kickas with all my friends!!! I really missed reading the posts and seeing how everyone was doing. Thanks for your kind words.

Love Simone

Welcome to kickas Nina. I think you are new here, but I was in such a fog before I left that maybe not. Anyways this has been a God send finding kickas. With AS you feel so alone and now for the first time I can talk to people like you who know exactly where I am coming from. It really does help on an emotional and physical level. Anyways thanks for the good thoughts and good luck on enbrel!!!

Hugs

Simone

Hi Simone

I glad to hear you are doing better and you have been able to make the trips you are making. Someday I hope to make some of those trips and see alittle more of this world but for now for me that is only a Dream. I'm sorry you can't make it to Ottawa but maybe some other time you will. Keep up your fight with AS you will beat it. ((((HUGS))))

John

Thanks John

I so wish I could come to Ottawa!!!! I would love to meet you and everyone else!! It seems like you came through your surgery really well. You are an inspiration John!! So happy things are looking up(no pun intended)!!! Keep up the progress and then you can follow your dreams.

Love

Simone

Yep, I'm pretty new, so I found one of your old posts in the archive on how you were doing before Humira. If Enbrel stops working, I'll start Humira too, so I'm very interested in how it works in AS.

Btw, you've already welcomed me once a couple of days ago when I posted my introduction but thanks anyway!:)

Nina