Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I'm still kicking, I think..

Cheryl,

I asked the doctor for a body transplant, and he said they weren't available at this time. What a disappointment! But I have to love the guy, he is the first doctor I've ever met willing to really help me with pain control. The nice part is my blood pressure is down to normal just by taking a muscle relaxer and Vicodin 750's.

Hugs,

Cindy

Life may not be the party we hoped for, but while we are here we might as well dance.

Hi, Betty,

This was a study/rheumy visit(s). They are extending the study another 6 months, and have requested FDA approval of Enbrel for AS. The release forms were not available yet, but will be soon.

My study coordinator seems to think that I'm just in a flare. And Enbrel is not a cure; we were told that from the beginning. So flares could happen anyway. I'm still stiff in the mornings, but it's not like the rigor mortis stuff I had before starting Enbrel. So maybe the Enbrel is still helping me. It's hard to say. I seriously considered dropping out, but I know that if I do, I can't go back. There really are no other meds that fit my allergies and my budget. I've already tried them all, dozens of different NSAID's, sulfasalazine, methotrexate. And they didn't think I would be a good candidate for Arava, because of my allergies. So hopefully this is just a flare.

Got another rx for the vicodin 750. And taking that and the muscle relaxer has made my blood pressure drop to normal. If I can keep my pain at tolerable levels, I think I can tough it out for a while. I'll probably not be doing the 6 month extension, unless I get out of this flare within the next 3 months. I've not had any side effects to speak of, and that is also something to consider. And I hate to make this kind of decision when I'm in pain and so emotional.

I'm glad you're doing better, now it's my turn.

Hugs,

Cindy

Life may not be the party we hoped for, but while we are here we might as well dance.

Flares/pain (and getting run over) all make us feel so vunerable.

Cindy, it would totally make my day if I logged on and found you posting in the NSD forum. Even if you chose to start as low starch, it is so worth giving the diet a decent (and fair) trial. Besides the positive effect it has on pain and stiffness (and improving life in general! ) one of the most common things NSD'ers find is that iritis stops.

You have absolutely nothing to lose.

(except pain)

(and stiffness)

(and iritis)

(and lack of sleep)

(and lack of energy)

Go on! Come and join us!!

Take care,

Jan

Your vision will become clear only when you look into your heart ...
Who looks outside, dreams.
Who looks inside, awakens - Carl Jung

Whoa!!! I vote right now that when the new free body replacements are finally introduced to we ASKickers you should get the first one for the type of winter you just made it through.

Sorry you had to give up the classes. It seemed like you were enjoying them. THe thought of even being in a low speed fender bender makes my whole body ache let alone an accident with the force to shatter windows.

I suggest instead of using you're favorite bad word when something like that happens you use my favorite phrase. "Hi this large quite hairy no-neck handsome chap next to me is my dear friend Bruno." of course it works better if Bruno is next to you. {wink}

 
stevec-they also serve who stand and wait

Gosh Cindy...
you poor thing...it's hard enough with a nasty flare of AS...but a UPS run in???? I hope that you will be feeling better soon. I've had a few car accidents in my life...and one of them was really bad. Sometimes you dont feel it until a couple of days later and it takes weeks to shake it off and heal right.

You are a pretty tough cookie with a warm heart...hopefully this flare will pass you soon too....
perhaps if I toss you some easter bunny chocolates your way...that might help ease the pain???

hugs]]]


Buggy

Greeat, another 6 months. My appointment is in three weeks. I will keep you posted. Do they do x-rays everytime?
They only did them the first day of my study and that was over one year ago.

Betty