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

I am so sorry you are going through this. I have been one of the ignorant Americans. I thought Canada's health care was one of the best in the world. It is the one the younger generation here is trying to get. But after being on this site and hearing the problems you have. I think I'll stick with this country's broken system. If I don't like a dr, I will switch. With no major issues. I hope you can find some kind of relieve. Be careful with the gabapentin. I know it makes us loopy. I can't drive if I take my dose in the morning.

I get vertigo too when im under-treated!

I think there are many aspects of this disease that are poorly understood. We have connective tissue in our bodies everywhere, and the effects of chronic inflammation can be insidious and subtle. A friend of mine has AS, as does his father, both of them have vertigo. His father was diagnosed with meniere's.

cant your GP prescribe remicade? Someone your age cannot continue on 50mg of prednisone daily, that is unnacceptable, irresponsible, and frankly negligent provided there are other alternatives for treatment. And for you, there are!

Is anyone talking to their rheumy about Ustekinumab as an alternative? Its available in Canada now I think. It works in PsA and Crohn's after all. If the TNFs arent working, why not find a patch of dry skin and get a prescription?

Best of luck to you, I sympathize with you 100%. My disease, of which I was completely unaware until 8 months ago, is aggressive and widespread. It blows my mind to think about it.

Do whatever you must. In the US, a GP can prescribe remicade.

You really need to look at getting another rheumy. Being made to feel like you might be crazy and self-medicating? You deserve waaaay better than this! Have you ever heard of "Rateyourdoctor.com" or something like that? I bet you can find a doctor in your area who will listen to you and act as an advocate to help you get relief, if not improve your condition too.

I gotta run for now, off to the Arthritis Center...I'll check in again later on.

Take care of yourself Megan

Can't believe this either, Megan. What the heck is going on with rheumies? (No. Rhetorical - don't answer!) Sure is rotten news to read.

Can you change rheumies? Any chance of seeing Khan or Inman - prob half a continent away - but, IF you could? For this to happen to you, and you involved in medical research, I don't know. The whole scenario beggars belief.

Hope you can resolve - strong and positive thoughts for a way out of this impasse -

Hugs lass -

Molly C (France)

Hi Megan,
Wow, I don't know what to say about your doctor... but maybe it is time to start leaving pamphlets on his desk about certain medical conditions, or a medical dictionary if needed.

I'm sorry you have been having a hard time for a while now. If you must continue Nsaids because you don't have much of a choice, then please try asking for something in the lines of Carafate (a stomach lining protector), or Pepcid to help heal the ulcer. I used them both and they took the pain right out of my stomach. I can't do Nsaids anymore, but the only one I can take is Ecotrin because it doesn't hurt my stomach.

I don't like that part about him having you visit him on a yearly basis too, when you obviously need to get better treatment ASAP. That's just wrong. To me it sounds like he is brushing you off because he doesn't know what to do for you.

I hope you find something (or a new doctor) that works for you soon.
I can relate to having a doctor similar to this one.
Take good care,
James.

Oh no Megan,

I'm so sorry to hear this. I'll come beat up your rheumy for you. Stinkin MORON! Maybe you'll get lucky when you come to the US and get a good rheumy and find decent health insurance.

Hi Ali,
I know you have had more than your fair share of problems with the health care system here. What you say about accountability - that's exactly how I feel. There just is none here.

I think if I had the energy or brains to try to fight this, I would. But honestly, if I can get out of bed, that usually saps my energy for the day. And I'm supposed to be finishing up a degree by April, if I don't, I get thrown out of the program, because I've maxed out my time allowance - that's kind of my priority right now, especially after investing nearly six figures and four years into this degree so far.

I'm sure the reason I got shingles was from being at 50mg of pred for months. But try and convince my doctors of that! ha!

My rheumy is the one who gave me a standing order for bloodwork every month. He is also the one who never bothers to CHECK my bloodwork report when it comes back. I've had bloodwork done when I was sicker than a dog with an infection and on antibiotics, and he's never bothered to so much as give me a phonecall, that's how I know. Oh and maybe when I got an MRI and a bunch of uterine tumors showed up, as well as bone turnover markers for cancer, and he again, didn't bother to even mention it.

I'm just so tired of it, and just... so tired. Maybe one day, if I get my energy back, I'll pursue this, but not right now.

Hi Patti, yep, the gaba has me so loopy, I can hardly stand up. Not sure if I want to take a second dose of it....

Megan, sorry your Rheumy is an IDIOT, even I know what Autoimmune disease Inner ear disease is, and I also have asked to be checked for it.

http://www.american-hearing.org/disorders/autoimmune/autoimmune.html

To take a medication that is clearly not helping you, could this not cause you more harm. Is it possible the Enbrel is causing the shingles!!!!!! Is it not the doctors' Motto - "TO DO NO HARM".

Many Hugs

Gerri