Any Canadian PMR/GCA sufferers out there?

Try as I might I have not been able to find any support networks in Canada. PMR/GCA UK was my support and source of broader information. My medical professionals have been great, but it is a lonely business getting through the diagnosis, treatment and life changes that these diseases have brought about.

[PMRCanada]

I'm here fellow canuck....in Tillsonburg, Ontario (about 2 hours southwest of Toronto).

I too am seeking fellow PMR/GCA "club members" to connect with organically to compliment all of the great support and information I've gleaned from this forum. I'd be willing to share email/cell phone number via a private message on this site if you are interested.

Where in BC are you? I used to live in Smithers for a couple years, now I have two aunts that live in Vancouver whom I visit yearly. Beautiful province!!

I read somewhere recently that PMR effects 1 in 2000 people, so not sure how many other fellow Canadians will respond. There is at least one other active member from Nova Scotia (I believe).

[Hidden in reply to PMRCanada]

I'm on Vancouver Island. I think it's something like 1 in 10,000 who get PMR/GCA. I've done lot of searching for statistics wanting to write an article about these diseases in Canada, and while everyone was helpful the stats were all from the USA. But I found a research study out of Mount Sinai Hospital, Toronto where they are looking for participants. I submitted my name, completed various questionnaires and blood samples (no cost) I know they want more participants so if you're interested the contact is:

Dr. Kathy Siminovitch, Department of Medicine, Mount Sinai Hospital, Room 778D, 600 University Avenue, Toronto, Ontario M5G 1X5. Their results won't necessarily help me but it's something I can do towards a solution. I think just knowing there is someone else 'out there' in Canada with what I have is comforting so I'm glad you got in touch.

[HeronNS]

Also in Canada - Nova Scotia. We appear to be geographically challenged. I have briefly been aware of a couple of other people from NS on this site, but they must not have been interested in any kind of support group, as they disappeared quite promptly never to be heard from again, or maybe they just changed their avatar name? Not unsurprisingly there seem to be more individuals posting from more populous provinces, like British Columbia and Ontario, but they are both so huge geographically. We did try to get an online group up and running a few years ago but it perished from lack of contributions.

[Hidden in reply to HeronNS]

I'm on Vancouver Island. I think it's something like 1 in 10,000 who get PMR/GCA. I've done lot of searching for statistics wanting to write an article about these diseases in Canada, and while everyone was helpful the stats were all from the USA. But I found a research study out of Mount Sinai Hospital, Toronto where they are looking for participants. I submitted my name, completed various questionnaires and blood samples (no cost) I know they want more participants so if you're interested the contact is:

Dr. Kathy Siminovitch, Department of Medicine, Mount Sinai Hospital, Room 778D, 600 University Avenue, Toronto, Ontario M5G 1X5. Their results won't necessarily help me but it's something I can do towards a solution. I think just knowing there is someone else 'out there' in Canada with what I have is comforting so I'm glad you got in touch.

[Cairocat]

I live in southeastern BC and was diagnosed with PMR in mid July. Shocked, simply shocked at how quickly the illness attacked me and how the day to day roller coaster ride is developing.

Lots of information on this site to wade through and it is all a bit frightening so I would appreciate some sensible Canadian contacts....

[Hidden in reply to Cairocat]

Apart from the fact that nobody seems to know what PMR/GCA is (me too before I got it) it is hard to explain it all to someone who asks "how are you" the response seems to turn into a lecture and they just zone out. I wanted to get the word out (I'm a writer) as there are a lot of women in the Boomer age group that could become victims of these diseases. One of the problems is being able to explain it when information comes under so many different headings: Vasculitis (there is an organization for this in Canada, very small), Rare Diseases (a good website and organization in the USA) and Rheumatology. Of course, that doesn't really encompass the fact that you can get headaches (or not, as was my case) and could go instantly blind if not diagnosed in time with GCA and treated. I want to do is try to explain how a pain in the hips and shoulders could lead to blindness. But, there are many more 'top of mind' diseases out there with higher numbers of victims than PMR/GCA so it's a hard sell. Anyway, sorry for going on … it's been a lonely and frustrating journey and I'm relieved I can talk with others about it.

[Cairocat in reply to Hidden]

Exactly... friends ask how I’m feeling and I have always hated those people who smother everyone with too much information.... but all of a sudden I’m stunned when I realize I’m doing it as well.

Yes, I agree with you that women need to be informed as too often we just put the pain and stiffness down to getting old and decrepit.

[Mikb]

Hi Waterwise. I live in Toronto, or near enough to say I do. You will get a wealth of information from this site, however, if you want to connect with North Americans for the most part, there are Facebook groups that are mostly Americans and Canadians.

[aladymo]

Hi Waterwise. I am a fellow Canuck. Living In Montreal Quebec. Trying to learn and understand as much as I can about this disease. Let’s hope with us Canadians , the cold cold winters will chase away away the PMR 😱

This site is wonderful, the support , knowledge and compassion is just fabulous.

[Celebrant]

Cheryl, from Vancouver Island'

[Hidden in reply to Celebrant]

I'm on Vancouver Island too.

[Celebrant in reply to Hidden]

where are you--I am in Nanaimo and Dr Shariff is my rhuemy

[PMRpro Ambassador in reply to Hidden]

There is a lady who is part-time on Vancouver Island, Sooke I think. One daughter lives there and she provides childcare when Mum is away. She spends winter in central America and has just moved from Hay River to Calgary where the other daughter (?) lives. This sounds like the beginning of a Vancouver Island group! I have another friend just outside Vancouver - and they visit the Island quite often. There you are - 4 potential starters for an occasional meeting!!

[readingbooks]

I'm here in Toronto and find with the advice of my Rheumatologist, Family doctor, access to this forum and the occasional internet search I am pretty well informed now. it is very easy to get information and often contradictory overload about this disease. I am an RN and had never heard of it until struck down suddenly at 80 ! I am tapering very slowly and am trying not to let PRM take over my life. Not easy as well know. It is a life changing condition !! Good luck everybody.

[prospecter7]

Hi there: I am in Halifax, Nova Scotia. I came off Prednisone last December, after 4 years and 4 months. I had PMR, no GCA. I had never heard of PMR and when diagnosed by my GP, was told to "go home and read about it"! So after much trial and error I found this site and a Facebook site. I would like to find others who have gone into remission and how they are feeling, as I have not been feeling that great since achieving this. Lots of arthritis, attacks of Vertigo, spells of fatigue, "galloping" Carpal Tunnel in both hands, to mention a few. I am looking forward to the end of the year following cessation of long term Prednisone use, which is supposed to bring me back to normal. I follow this site fairly closely and I still get helpful info, even if I am off Pred. I will check out the research study that you mentioned.

[colmarin]

I am in Edmonton, Alberta. I too would love to tap into a network of folks with PMR here in my city and country.

[RheaV]

I'm from Bowmanville, ON, (about 45 min. East of Toronto), recently moved from Belleville, ON. I was diagnosed July, 2017,started on 15 mg Pred., currently down to 4.5 mg. 68 years old. I too had never heard of PMR before, but my Nurse Practitioner diagnosed it. When she talked about tapering the Pred, I asked if I could do it my way, since I had heard so much about tapering on this forum. Later she told me she had gone to a medical conference, went to the PMR seminar, and told me I was doing it correctly. Since I've been on the Pred, I have experienced nompain at all! Imwould like to find a new doctor here, but I can't get on a list here, if I am on someone's roster in my previous city! That's the way it works here in Ontario! But I need to see someone every 6 weeks or so! So I guess I'll just stay with my NP for now.

[Mikb in reply to RheaV]

Can't you get off the Belleville roster? Or drive to Toronto or GO train it in to see rheumatologist? Best of luck to you. Hope it gets sorted soon.

[RheaV]

I'm from Bowmanville, ON, (about 45 min. East of Toronto), recently moved from Belleville, ON. I was diagnosed July, 2017,started on 15 mg Pred., currently down to 4.5 mg. 68 years old. I too had never heard of PMR before, but my Nurse Practitioner diagnosed it. When she talked about tapering the Pred, I asked if I could do it my way, since I had heard so much about tapering on this forum. Later she told me she had gone to a medical conference, went to the PMR seminar, and told me I was doing it correctly. Since I've been on the Pred, I have experienced nompain at all! Imwould like to find a new doctor here, but I can't get on a list here, if I am on someone's roster in my previous city! That's the way it works here in Ontario! But I need to see someone every 6 weeks or so! So I guess I'll just stay with my NP for now.

[HeronNS]

Here's an idea:

help.meetup.com/hc/en-us/ar...

meetup.com/cities/ca/

[Hidden]

Thanks, I'll look into that.