GCA Second opinions Ontario Canada

[alvertta]

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??

[PMRpro Ambassador]

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

[alvertta in reply to PMRpro]

New. Please. Did I do this wrong?

[PMRpro Ambassador in reply to alvertta]

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

[SnazzyD]

What Pred dose are you on now?

[alvertta in reply to SnazzyD]

I am on 19.

[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 in reply to SnazzyD]

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

[alvertta in reply to SnazzyD]

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

[SnazzyD in reply to alvertta]

Even better I’d say

[PMRpro Ambassador 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 in reply to PMRpro]

Good to know.

[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 in reply to PMRCanada]

Thanks!! I am going to slow down reducing.

[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 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]

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.