Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Can't believe this... what next?

In Dec, when I saw my rheumy, I let him know it was definitely time to switch from enbrel to remicade, because enbrel isn't doing squat for me - not for some time now.

And when I'm not on a drug that actually works for me (like enbrel when I first went on it, or high dose prednisone), I get vertigo and sciatica, with a dash of numbness in there for good measure.

When I told him this, for about the 50th time, at my Dec apt, he acted as if he had never heard of this before, and said he was going to refer me to a neurologist before starting remicade, because he thought enbrel might be CAUSING the vertigo/sciatica. (I thought we had already established I had autoimmune inner ear disease, but when I asked him about this, he said he HAD NEVER HEARD of such a thing. Apparently he's never heard of Meniere's disease either. Glen and I just about fell over in our seats. I'm SO glad Glen was there to witness all this.)

I again explained, it's when I'm NOT on an adequate dose of enbrel or prednisone is when it happens, but he insisted that I have to see a neurologist first. Ok, fine. Fast forward to last week, when I'm informed the earliest apt with a neurologist is August, and that's an URGENT apt. Great.

Then today, rheumy's nurse phones me and says GREAT NEWS! Dr. Rheumy says he only needs to see you once a year now!, he's cancelled your June apt!, and he's rebooked you for Jan 2010! I again explain how I am in BAD BAD pain because enbrel is not working, and keeping me on 50mg of pred a day, plus NSAIDs is NOT A SOLUTION WHEN I HAVE AN ULCER. (Do I seriously need to explain this???) I said I need an apt NOW. LIKE, TOMORROW. WE HAVE A PROBLEM. BIG PROBLEM.

I'm basically told tough cookies. 2010 it is.

My GP explains that he talked to Dr. Rheumy, and Dr. Rheumy says that I don't make the "criteria" to even PRESCRIBE remicade to me because my AS isn't severe enough. Apparently, my last MRI (1.5 yrs ago) showed my SI erosions actually healed, so now I must be all better, right? Who needs remicade?!?!? He said that no rheumy in CANADA would be able to prescribe it because I'm not a severe enough case. Yet, I'm told I have to continue enbrel, which doesn't do a [**BLEEP**] thing for me. Forget COVERAGE for remicade. I can't even get it PRESCRIBED.

My rheumy only will see me once a year. I have a script for enbrel, which is no longer working for me. Between this, and dealing with shingles pain, I am at my wits end here.

It's a very good thing my hair is all falling out, because otherwise I would be TEARING IT OUT.

Megan megan megan (sigh)

Why do these same stories keep cropping up over and over again?? Doesn't it get frusterating having to tell your drs. the same things over and over again. Do they listen??? Do they know how to take notes?? That statement from your dr, about not being able to prescribe Remicade is a bunch a hooey. It says right in the pamphlet or brochure (forget which) at a dr's discretion Remicade can be perscribed OFF LABEL. I forget the percise wording but it's there. Maybe things are different in Canada as far as rules go but in my industry the label is the label and can not be deviated from. Gosh, I wish I could be of more help to you.

What a maddening tale, I'm so sorry to hear about all this nonsense you're being subjected to. Are you still planning a trip abroad? I appologize for not being more up to date on things.

I was referred to the local Pain Clinic, did a bunch of tests for them and then I find out I won't get to see them for another 18 months? As bad as that is, I can't imagine my rheumy telling me to get lost and not to show my face until 2010. Maybe you would do well to find another rheumy? That doesn't sound like the kind of medical care you need right now...hell, nobody needs care like that!

I'm hoping for the best for you Megan.

Hi Megan. I don't know if you remember me but [**BLEEP**] this rheumy sounds like a real @$#%. I have gone from Remicade to Humira and now to Enbrel with no problem at all. Not getting a script for Remicade is outlandish. Maybe time for a new rheumy....

Good Luck, Scotty...

Nooooooooooooooooooo!

Megan, this is ridiculous. I almost cried reading your post.

I wish I had some suggestions for you, but I don't really understand how the Canadian system works.

You deserve some relief from this pain and the system is not working for you.



Karen

I have no idea how it works in Canada either.

If there are any Canucks out there who can advise me on this, please do, thank-you!

My vacation was cancelled, because of this. Can hardly get out of bed, let alone get on a plane.
18 months to get back to the pain clinic? So they did tests on you, and then said "thanks for coming, toodles"? Aren't we supposed to have one of the best health care systems in the world? lol It's great if you break a leg or something, but chronic illness? yep, you're up the creek.
I've been asking for a referral to the pain clinic here for yeeeaaars. Maybe it's just all in my head. I'm actually beginning to wonder if I'm crazy.

I'm not sure of any of this is going to make sense, I added gapapentin to the mix starting last night, and now I remember why I quit taking it the first time around. I'm sooo loopy, and not in a good way. It makes me so nauseous. Nice that I've resorted to self-medicating with old scripts now. Seriously, I'm desperate.

Scotty! Of course I remember you! It's great to see you back here.... well... I mean it's great to hear from you, but I'm guessing that means you popped in because you're not doing so well? Oh dear... I sure hope that's not the case. I know you were doing quite well for a bit..

The first time I requested a biologic change was 1.5 years ago. Dr. Rheumy had NO problem with it at all. He put me on Humira, but it had no effect, so he said to go back to enbrel until we found funds coverage for remicade (it's not covered by any of my plans). At that point, I'd say enbrel was working at about 50% for me. (And I thought that was bad!!)

And now all of a sudden, he can't get me onto another biologic? He was all for it 1.5 years ago? It's like he forgets everything. I would LOVE to get a copy of my file. He's probably written none of this down and just said I was crazy.

I've been toting Glen around to all my rheumy appointments for over 2 years now. Thank god for that. I have a witness to everything, so at least Glen can back me up.

I would get a new rheumy if I could, but the wait list is YEARS long here.

Thanks Karen.
Apparently I don't understand how the Canadian system works either.
If I could get a new rheumy, I would.
Glen is convinced when we move to the US, it's going to be SO much better, but I'm not sure. Seems like there are probs with the health care systems on both sides of the border. It doesn't seem to be doing you any favors either, does it.
I suppose, if you're paying out of pocket, at least you could shop around for a new rheumy in the US, if you needed/wanted to. Can't do that here. But then, you're paying out of pocket.... I don't know....sorry, fragmented thoughts... too many meds.

Hi Megan,

I really can not comment a lot on this due to personal reasons.

If you feel your standard of care is not being met by your doctor, you are entitled to pursue this legally and also through college of physician in your province.

From reading your post, it appear to me that your doctor is not going to help you and politely is giving you the door.

Unfortunately, this is the problem with our death care system in Canada, there is no accountability unless if you decide to purse this matter legally and make it as public as you can to embarrass the health provider.

You are on preddy and Enbrel, who is doing your blood work on monthly basis? Shingles is common when your immune system is weak and the drugs that you are taking does lower your immune system. Your RA doctor who I presumed have ordered these meds is responsible to deal with your side effects and your issues. There is complete negligence on his behalf with respect to expected standard of care that every Canadian are entitled to under the health charter.

Where is Michael Moore?

Ali