Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Introducing myself

Hi Rey

Welcome to the best support site on the net.

John

WELCOME TO KICKAS!!!!!!

It was such a relief to have a name to put to my pain. I was told that it was nothing for 27 years. As soon as I got a diagnosis, I called my sister, and told her I knew why she was having back and hip pain. (She had been told hers was caused by being too thin. I had been told for years, it was because I was too heavy!)

We both participated in the SAA genetic study. We live in separate states, but that was not a big deal. Just release of medical information, a telephone interview, and blood work. Made me feel like I was doing something for me, my children, my grandchildren.....

Good luck to both you and your brother. Invite him to join us, too.

Hugs,

Cindy

Welcome Rey!!

I can relate, as can many here, you have found a great place to share many things!!

That really blows about your compensation being cut when they found out about AS...good god...

That your bro has it may mean that you could qualify for a study....there have been some posts about an AS study involving family members, ask about it, maybe it could help!!

Peace, hang in there!!

Linc



Linc O'Brien

Rey,
I would like to say Hi and welcome this site has been a life saver for me. I am concerned about your brother be on predisone. When I was first diagnosed with AS, the doctor put me on 40mg of predisone and I was kept on it for 6 and half months until I took myself off of it. The side effects from predisone are horrible, I gained 50 pounds in that time, I also was so swollen that my face was round. People that hadn't seen me for awhile actually got scared by the way I looked thinking I was going to die. I also felt horrilbe even though it helped with the AS pain. I also broke out into sweats. I have been of of it for a couple of months now and the swelling has just started to leave. I have told my doctors that I will never take predisone again, no matter what is wrong with me. That if I would have been told what this drug would do to me I would have never taken it. So, Please warn your brother and tell him to keep an eye out for the side effects. I don't know what type of dose he is on, but I pray he doesn't have the same side effects that I had.
Welcome to the site again!

Bev

bev,

i must say that i am horrified that any doctor would prescribe predisone 40mg for over 6 months. if you really required that amount because of your condition, you should have been hospitalized. some people take low doses of pred (5-10mg) for long periods of times, but not 40.

i hope you have found a different doctor

-ken

Dear Rey,

Welcome and welcome, you come to the right place for AS sufferers.

Yeah, you're right about changing a lifestyle and you can manage it better if you have a great understanding for this disease.

About support, do not worry, you will have lots of support here and lots of information too, very useful.

Sorry about your job situation, I don't know about legal process in US but it's great if you can fight and get the voc rehab.

Take care,

Sinta

Hi Rey,
Just wanted to say to our KickAS family. Hope to see more of your posts!

Michelle

Hi Rey, Welcome to KA! It's a great place to be when you need to talk to other people who are going through the same problems.
Take Care....Hope

Hi Rey, nice to meet you and welcome to THE best site for support!

I can relate to that kiss him/kill him part, I spent a year being totally frustrated that my Rheumy wouldn't give me a Dx even when I asked her outright. When the AS started my GP was completely unhelpful, he made me feel like I was malingering, that the pain didn't exist (he thought the only thing I needed was a sicknote) but huh? why couldn't I walk then?? I lost my rag with him and got referred and it was such a relief to be seen by someone caring and who got treatment started but then weird that she wouldn't Dx. I think (hope) that she was trying to protect me because as a nurse and the one thing the Occupational Health Dr wanted was a report to say if I fitted into "disablement criteria" or not. From malingerer to disabled in the space of weeks??!!! No wonder I was freaked out!!! I never did get the answer but after I moved back home my new Rheumy went to great pains to give the Dx, obviously my new GP (a good one, thank the Lord) had put my concerns in the referral. There's been no more talk of disablement but my old OH Dr said she wouldn't put it in the report to the new hospital in case it stopped me getting a job but then warned me to get out of clinical nursing as soon as I could.

One of the worst aspects of this disease is the great big question mark it puts over your future.

This site is so supportive, friendly, funny, helpful. I am soooo glad I found it and am sure you will find it's the best thing you have done for your AS too.

Hope you get some good info and support about appealing, it's got to be worth a go?!!

Take care,

Jan

Hello Rey......welcome to the site.
Dan


Who knows what the drugs will do to us?