|
Forums33
Topics44,195
Posts519,910
Members14,165
| |
Most Online2,352
Sep 12th, 2025
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
|
Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
|
OP
Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
And I'm sure there's still skin there where it hit.
So, my rheumy sent me to see Dr. Inman, one of Canada's top AS guys. I'm so blown away I can barely type to tell you all.
First off, he told me outright that he does not feel that ESR and CRP are at all useful in gauging disease activity in people with AS. Not in the slightest.
Secondly, he knows about KA and thinks this site is amazing and so are the people here.
Thirdly ... this is where my jaw left skin scrapings on the floor ... he's recommending me for Enbrel or Remicade, whichever I can get. He says that, based on our visit, AS has severely impacted my life, regardless of the fact that I can still do things. We have to apply to my benefits company first, which is dicey because these drugs still haven't been approved for AS in Canada and my benefits company is one of the tougher ones to get approval from.
If jumping through those hoops doesn't work, he has an application in for a clinical trial of low dose Remicade on patients with AS. He's waiting on approval from Health Canada and the ethics commitee at the hospital, but anticipates it would start within the month.
If that doesn't work, he will go to bat for me with the Government of Canada to get me compassionate approval to take a biologic. And he has every intention of winning it for me.
I cannot tell you how I feel at this moment. OK, I can. And I'm going to. I've been on the verge of tears since I left his office. I've spent the last three years feeling like I'm never going to get the drugs I need to stop this thing, feeling like since I am still capable of living my life in a semi normal way I'm
I don't know how to finish that. I've felt so alone with this. You guys are amazing and I love you all. My mom and Kerry ... I adore them and they've been rocks for me and I am so grateful to them for everything they've done but they have their own lives to live and I can't expect them to drop everything to come to my aid when I don't have the energy to look after my house or do the htings I love. I live alone and the last man I was with couldn't have cared less about the AS. So, I have dealt with this as I have pretty much everything else, desperately wanting, eneding, someone to help me and holding ourt no hope for it. No expectation of it. Just doig the best I can to cope with life, good and bad. And now I'm in the middle of my office weeping as I type because someone has said he believes me and he's going to pull for me and fight for me.
And I feel so silly, because I don't cry about this. Almost never. What's the point, right. It is what it is. So I keep going. I don't even swallow the tears, they don't make it past my gut so there's nothing to swall. and here I am crying like a baby because this doctor has in one 45 minute appointment validated everything. It's dumb.
Anyway, I still have work to do and I'm not going to get it done if I keep this up. Just wanted to tel lyou the news.
Hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
|
|
|
|
|
Joined: Apr 2002
Posts: 3,607
|
|
Joined: Apr 2002
Posts: 3,607 |
Holy cow, girl!!! That is the best news!!!! I'm so happy for you! Isn't that a crazy overwhelming feeling when after years and years, someone finally seems to "get it" in one visit, and without a battery of tests? I can't tell you how excited I am for you. You've always been so great in giving me advice and support in the past. You're always so upbeat - I don't know how you do it. But it's so great to hear that a good thing is happening to a great person! I remember feeling that way when I saw my new rheumy - he said the same things about CRP and ESR. I've never even been checked for B27 either. He is a fantastic guy, going to bat for me, in whatever way he could to get me on enbrel. Sounds much like your doc. I think I spent an additional day crying when I got the call that my enbrel had actually arrived, and I could start injections. It just seemed too good to be true, and I didn't want to believe it until I actually had that syringe stuck in my leg.  I can't wait for my next appointment, when I can walk in. The first time he saw me, I was on crutches. You take care and I know you'll keep us posted on your progress! So happy for you!!! Hugs, Megan
|
|
|
|
|
Joined: Sep 2002
Posts: 1,763
Diamond_AS_Kicker
|
|
Diamond_AS_Kicker
Joined: Sep 2002
Posts: 1,763 |
that is great news im happy you are getting what you need and have a doc that really knows his stuff......oak
 my little angels
|
|
|
|
|
Joined: Aug 2003
Posts: 1,925
Captain_AS_Kicker
|
|
Captain_AS_Kicker
Joined: Aug 2003
Posts: 1,925 |
Wow, I am so HAPPY for you.
If this all goes through quickly, you will soon be feeling the benefits of what should be available for everyone in Canada with AS. It's a shame that we have to fight for everything that we get.
You do have a very good Doctor!!
big hugs,
George
|
|
|
|
|
Joined: Apr 2002
Posts: 12,465
|
|
Joined: Apr 2002
Posts: 12,465 |
|
|
|
|
|
Joined: Oct 2003
Posts: 986
Superior_AS_Kicker
|
|
Superior_AS_Kicker
Joined: Oct 2003
Posts: 986 |
WOOOOOOOOOW!!! That must feel so wonderful to get such treatment! With my doc i only feel i bother her so i dont really go to see her and here are not many to choose from so ... anyway, i really hope you get your meds soon with no problems  fingers crossed!!!
|
|
|
|
|
Joined: Apr 2004
Posts: 382
Fifth_Degree_AS_Kicker
|
|
Fifth_Degree_AS_Kicker
Joined: Apr 2004
Posts: 382 |
I am so happy for you. Just as Megan stated in her post, it couldn't have happened to a better person. You have helped me through so much within the past year and I really really appreciate it. Keep us posted as to how you are doing. In no time, you will be feeling alive again.  Shari
|
|
|
|
|
Joined: Sep 2001
Posts: 2,469
Colonel_AS_Kicker
|
|
Colonel_AS_Kicker
Joined: Sep 2001
Posts: 2,469 |
Thats great news Kat I am so happy for you....I'm hoping that your medical plan covers the new meds for you. Dan
 >>>>>>  We are kicking some AS*.
|
|
|
|
|
Joined: Sep 2001
Posts: 6,248 Likes: 5
Addicted_to_AS_Kickin
|
|
Addicted_to_AS_Kickin
Joined: Sep 2001
Posts: 6,248 Likes: 5 |
All I can say is that it is great to see you get such promising help and to read that you are so happy, even if it means you are sitting there crying at work.
Doc's do come in both flavors. Wonderfully good and unfortunately indiffierent.
|
|
|
|
|
Joined: Oct 2001
Posts: 2,576 Likes: 5
|
|
Joined: Oct 2001
Posts: 2,576 Likes: 5 |
Kat, that is awesome news! Congratulations! What a terrific doctor--and person--you have discovered.
He is the reason I hate to see people issue blanket indictments of the entire medical community. Certainly, there are not enough like him, not enough by half, but good, caring doctors DO still exist, and they can help us. Doesn't mean we shouldn't help outselves--that should always come first--but it also doesn't mean we should give up hope.
What a great day for you--I'm very happy for you.
Brad
Good lux
He who has a 'why' to live can bear with almost any 'how'.
--Friedrich Nietzsche
Sounds like everything takes time, discipline, and patience, and those are seven things I don't have.
--Jon Dore
|
|
|
|
0 members (),
668
guests, and
150
robots. |
|
Key:
Admin,
Global Mod,
Mod
|
|
|
|
Facts are facts.
) and experiencing great results. I do not believe I could feel better than I do, given more. So if this clinical trial is offered, I can't think of any reason not to jump in on it. Knowing that someone is going to bat for you is such an awesome feeling, eh.
