GCA Second opinions Ontario Canada : Hello Ontario... - PMRGCAuk

PMRGCAuk

20,119 members37,702 posts

GCA Second opinions Ontario Canada

alvertta profile image
16 Replies

Hello Ontario. Have you tried to get a second opinion ? I feel awful. Tired. Weepy. Taking Actemra and reducing prednisone 2 per week. Tried to talk to my rheumatologist for her advice. January 25 is first date. So basically “get lost”. Assistant said if it’s that bad go to emergency. Not a great option as I need advice. This is not an emergency.

Spoke to the pharmacist who is dispensing my Actemra and he says stick it out one more month. The fatigue and depression probably caused by prednisone reduction not the Actemra.

Which leads me to thinking I need a second opinion from a rheumatologist. Is that possible in Ontario??

Written by
alvertta profile image
alvertta
To view profiles and participate in discussions please or .
Read more about...
16 Replies
PMRpro profile image
PMRproAmbassador

Did you mean this to start a new post/thread? Or should it have been a reply to an existing thread?

alvertta profile image
alvertta in reply to PMRpro

New. Please. Did I do this wrong?

PMRpro profile image
PMRproAmbassador in reply to alvertta

Not at all in that case - I was just a bit confused.

SnazzyD profile image
SnazzyD

What Pred dose are you on now?

alvertta profile image
alvertta in reply to SnazzyD

I am on 19.

SnazzyD profile image
SnazzyD in reply to alvertta

So not adrenals then. The pharmacist may have a point though about withdrawal and giving the body a chance to settle with Actemra. Although the Actemra is dealing with the inflammation, it doesn’t cover for the multitude of other effects that Pred has that the body is accustomed to. It will notice the 2mg per week I’m sure and the lower you go, the bigger impact it’ll be. At some point it’ll come round to the idea but once you get below 10mg, see if you can negotiate a much slower descent so your adrenal function gets half a chance to put its lights on.

alvertta profile image
alvertta in reply to SnazzyD

Thanks. I am hot on the trail of a second opinion at Mt Sinai Hospital in Toronto.

alvertta profile image
alvertta in reply to SnazzyD

The rheumatologist said she wanted me to slow down at 15.

SnazzyD profile image
SnazzyD in reply to alvertta

Even better I’d say

PMRpro profile image
PMRproAmbassador in reply to alvertta

I'd have to ask why wait that long! 2mg per WEEK is a massive amount - 8mg per month. Your body never has a chance to get used to a dose before you are changing it again.

alvertta profile image
alvertta in reply to PMRpro

Good to know.

PMRCanada profile image
PMRCanada

I concur with others regarding tapering too quickly. I’ve sent you a direct message with a short list of rheumatologists my GP and I compiled together (best of the best), that we had on hand in case I needed to be referred one day. One is from Mt. Sinai in Toronto.

Do hope you get some relief soon!

alvertta profile image
alvertta in reply to PMRCanada

Thanks!! I am going to slow down reducing.

Mikb profile image
Mikb

My rheumatologist is at St. Michaels in Toronto. I really like him. Seems to me that if your GP gives you a referral, you could have a second opinion. I don’t think many specialists will see you without a referral. Aren’t you closer to Windsor than Toronto?

alvertta profile image
alvertta in reply to Mikb

Hi Mikb. I am in Meaford so Toronto or Hamilton are good for me. Trying to get into the vasculitis clinic at Mt Sinai. My family doctor has the name and fax. She just had to send it. Fingers crossed. Thank you.

alvertta profile image
alvertta

The last week has been instructive. The only person to speak to me was the pharmacist. Rheumatologist has no interest in becoming involved. The future seems brighter. Plan in place.

You may also like...

looking for a second opinion

always happy to speak to me . I just feel a second opinion would help me be in a better mindset...

GCA Vancouver Island BC Canada Introduction

after a biopsy and a crp of 111 and began 60 mg prednisone which alleviated most of my symptoms...

Actemra at 3mg prednisone for GCA

specialist is referring me to a rheumatologist for advice regarding Actemra. I’m wondering how it...

Second opinion in Missouri USA

I need some referrals for a rheumatologist in central Missouri. Someone up on current literature,...

35mg Pred after a year of GCA,PMR

GCA and PMR for a year. I'm on Actemra and prednisone. I was reducing and got down to 12.5mg three...