Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Update and wanted to say Hi

Hello All

It has been some time since I have posted. Just wanted to say Hi and hope everyone is doing well. As before, every time I go to the doc, I get more bad news. I had blood work done a couple of months ago and I am not scheduled to go back to the doc until September so I went and got a copy of my labs. My Gfr is 57, didn't know what that was, so I started reading again. I just feel doomed. That is another problem to deal with. I am not sure if I had posted this before but I was told a few visits back that I had lupus symptoms, Not lupus..whatever..my ANA was 288, and was put on plaquenil. Does anyone else have all these problems? I don't know anyone around me that does. I feel so alone and no one really understands what my body feels like.

This website has been a Godsend. I wish you all well!
Dana

Hi Dana! I was on plaquenil for 18 months. It helped me but I had to quit due to appetite and weight loss. I lost 30 pounds in 18 months. I guess it is an unusual side effect. I would still like to be on it. Oh well. I know what you mean about others not knowing what our bodies feel like. We just need to hang on for awhile. There are a bunch of new exciting drugs coming out soon that should be very effective with AS. I wish you all the best!

Craig

Hey Craig,

I am trying, the last couple of years have been hard. I have lost 30 pounds since October of last year. I feel better with this than any other drugs I have been on. I just keep finding out I have so many other problems. I just hope they don't change, my levels have not improved much at all.

Thanks for your reply
Dana

Welcome back! I'm sorry for the stresses you are experiencing but I understand I too have been told I have lupus then I don't, then I do, then I don't! My understanding is that once you have an auto immune disease you quite possibly can continue to get them. I have AS, diabetes, hoshimoto, sjogrens, raynauds blah blah blah!!! Just keep ur head up! I now just tell them that I don't want to know what I have I just want to know I can be treated! When I go to a new dr I just bring my files! And seriously how can you possibly remember all the names! They are wacky crazy names! Best of luck!

Hey Zannia,

I am becoming accustom to getting more diagnosis. It's just so overwhelming sometimes. I don't think this next visit will be a good one. But I am trying hard to not let it get to me.. Oh and I file is getting thick..lol

Thanks for the post and I apologize for the late response
Dana