CANADIAN WEBSITE

[Ryliefew123dogcat]

Is there a Canadian web site for PMRGCA as l live in Canada?

[DorsetLady PMRGCAuk volunteer]

Don’t think so, that’s why you’ll find fellow Canadians on here.

[Ryliefew123dogcat in reply to DorsetLady]

Thanks Dorset Lady.

[DorsetLady PMRGCAuk volunteer in reply to Ryliefew123dogcat]

This might help you understand your illness a little better -

healthunlocked.com/pmrgcauk...

[Soraya_PMR]

I don’t believe there is. But you’re very welcome here, we’re very international 😊

[jinasc]

There used to be run be Arthritis - it was the first site I used 11 years ago and I live in the UK. arthritisinsight.com/archiv...

Ragnar (Swedish) entered my life, through a Canadian website, Ragnar was on the 'Good Ship GCA&PMR' he was Captain Bob, I was the Donkey Man.

I don't know if the site is still up and running.

However it has been said, lots of Canadians and others outside of the UK use this site and Patient.info.

Just make sure when you are asking a question you put in that you are Canadian it helps and what you have and what meds you are on.

[Ryliefew123dogcat in reply to jinasc]

Thanks all for the quick replies.l am so happy to be on this site.Diagnosed 6 weeks ago with GCA it has all been a shock. Still trying to absorb it all. My face is now ballooning and my moods go up and down a lot. Hard for other people to understand my problem. Thank goodness l am retired and can rest and not commit to to much.l will be using this site a lot. Can't understand why there is not as much information as in Britain. I was born in Britain but have lived in Canada for 40 years.

[alvertta in reply to Ryliefew123dogcat]

Welcome. Feeling the same as you. Diagnosed in October 2018. Went from active healthy 71 year old to couch potato. Started at 60. Now down to 25. You will find this site very helpful. I post questions and many people jump in with great info. I read it daily and learn so much. Many people on here have years of experience.

[Ryliefew123dogcat in reply to alvertta]

Hi alvertta l live in Ottawa. Thanks for the reply. I was also an active 74 year old until a couple of months ago and now excaused all the time. I started out on 50mgs and this week l am down to 35mgs. My main worry is having to stay on this stuff for many months.

[alvertta in reply to Ryliefew123dogcat]

How about years ! There is a great article from the Edinburgh medical journal that PMRpro posted that recommends how to successfully taper the prednisone. Really worth a look. I am following their guidelines. If you privately message me your email, I can send it to you ... I have reviewed it with my family doctor, rheumatologist and neurologist and they all agree it is a good plan. Slow but successful.

[Ryliefew123dogcat in reply to alvertta]

Just received your emails. Thanks so much. Lots to read. Very helpful.l am sure l will be asking more questions. Had a good day today.

[alvertta in reply to Ryliefew123dogcat]

Enjoy the research.

[Ryliefew123dogcat in reply to Ryliefew123dogcat]

Thanks for the tip.Still getting used to the site. How do l take it off

[Ryliefew123dogcat in reply to alvertta]

Thanks again Alvertta. Just deleted my email. Got it!

[alvertta in reply to Ryliefew123dogcat]

I live in Meaford.

[Ryliefew123dogcat in reply to Ryliefew123dogcat]

Forgot to he mention within 2 weeks of starting the Presnosone l got Shingles,just getting over it and wondering what other hasty things l well encounter on my journey.

[alvertta in reply to Ryliefew123dogcat]

Yuck! I had the shingles shot and so far so good. Looking forward to getting outside when it warms up tomorrow.

[Cairocat in reply to Ryliefew123dogcat]

Welcome. I was also born in the UK but have lived in Canada since 1957 and finally retired to Fernie BC in July 2017. I was diagnosed with pmr in July 2018 and started off on 30 mg and needed to go up to 35 and stayed there until August 31st. When my gp (who'd been on holiday) returned to work he had a fit so started to taper and now I am alternating between 8 and 7 this week and plan on sticking to 7 for 3 or 4 weeks before dropping down. Slow and steady, slow and steady..... I have standing blood work and went yesterday and all the markers are within the "range" so there is light at the end of the tunnel. Fortunately my rheumy is a brilliant woman and I see her every 3 months and she is so positive that I have accepted the fact that I have put on weight because I could eat a horse (in between thick slices of butter dripped bread) every evening and I look like Moonface from Enid Blyton's Enchanted Wood. She tells me one step at a time so I am exercising, eating better and find I am not nearly as exhausted. This disease will not go away overnight and the support from very knowledgeable friends on this forum is marvellous. And....it is spring, finally!!! Cheers!

[Ryliefew123dogcat in reply to Cairocat]

Thank you for that Cairocat, it is hard to see a light at the end of the tunnel when you are told you will be on this drug for many months. I am having a good day today but it all changes so quickly. I am now on 35 mg and should be going down 5 mg a month. Long way to go.Thank you for your insight

[alvertta]

I live in Ontario. I follow this site. Great info. Here since October 2018. GCA

[PMRpro Ambassador]

There was an attempt by the North Americans generally on this site a few years ago to get a site up and running but it didn't ever take off. You need a critical mass to keep a forum active and get it listed on google for potential new members to find it and so it becomes a small group that struggles to grow. It is much the same there with regard to support groups - the geographical distribution means it is hard to get people into one place.

There is so much in the UK because a set of ladies met on a UK medical support site which has the original PMRGCA forum somewhat more than 10 years ago. They got together and started a charity - with websites and support groups and now this forum. There was already a Scottish charity before all that happened.

But fear not - there are plenty of Canadians here and a couple who drop by occasionally on the other one! Where are you?

[Pongo13 in reply to PMRpro]

Lol! I’m a critical mass! Cool x

[Marilyn1959 in reply to Pongo13]

[Ryliefew123dogcat in reply to PMRpro]

Thanks for the reply. I am in Ottawa.

[PMRpro Ambassador in reply to Ryliefew123dogcat]

Been there years ago, really liked it.

[HeronNS in reply to Ryliefew123dogcat]

Live in Nova Scotia, but spent a year in Ottawa at graduate school - me at Carleton, hubby at U of Ottawa. Great experience living in the capital city. At the time we also experienced one of the worst winters on record although sure it's been surpassed several times since then. It was the year of the FLQ crisis and I remember the day soldiers were posted on campus, and we students milling around a very uncomfortable looking young soldier standing to attention all by his lonesome on steps to one of the buildings. My husband and I had one of our few political disagreements at the time as I was in favour of democracy showing it had an iron fist inside its velvet glove and he thinking the government was totally overreacting.

And, no, I haven't found a local support group although I do hear from time to time about someone who has PMR (usually, however have to make sure my informant isn't confusing it with fibro). After an initial very bad experience of over a year undiagnosed my new doctor diagnosed me within a week and has been very good and supportive.

[alvertta in reply to PMRpro]

I asked my neurologist in Owen Sound Ontario about a support group. He knew none. I put out a notice on the Meaford community site. No replies. So I love this group. Best replies and info. ❤️❤️❤️

[Mikb]

Welcome! I'm a fellow Canadian and have not found a Canadian support group anywhere. There are a few of us on here. 4 of us I know are in Ontario. Where are you? I too have GCA and have been a member here since Oct 2017.

[Ryliefew123dogcat in reply to Mikb]

Hi Mikb, l an from Ottawa. Very pleased to be on this site

[alvertta in reply to Mikb]

I am in Meaford

[Mikb]

I'm in Toronto but was in Ottawa/Gatineau for my nephews wedding not so long ago. My brother lives in Arnprior which is pretty close.

[Ryliefew123dogcat]

Wow good to meet a few Ontarians. Makes me feel welcome. Thank you.

[Telian]

Think an attempt to start one was futile so no - looks like your stuck with us for now!

[Ryliefew123dogcat]

Sounds like a great group.Thanjs

[PMRCanada]

Welcome fellow Canadian. I'm from Tillsonburg, ON (small town in southwest part of province). I had the same question you posed when I first joined the forum. Looked high and low, no "in person" support groups. I still would like to connect with folks organically somehow, and would offer to facilitate a PMR/GCA peer support group if there were enough folks in this region. As our country (and province) is so large, this becomes a challenge as travel can be difficult for us.

Ottawa is lovely! Enjoyed the Byward Market. Glad to see another member from Ontario on the site.

6 weeks are early days, often filled with shock, worry, and adjustment. I too was so worried about long-term pred use and side effects. Now that I'm about 10 months into my PMR journey, I've come to accept I have a chronic condition for which I must make adjustments (to my lifestyle, my activities based on my abilities, my relationships, and my outlook). Thus far I'm able to manage my PMR quite well, despite have an awful rheumatologist that put me on a textbook taper and I flared. Now I'm overseen by a wonderful GP and an ortho surgeon re an upcoming total knee replacement.

I have changed the things that I can control, adjusting my diet resulting in a 30 lb. weight loss and lowered blood pressure medication. The only side effects I've had from pred thus far are mood swings (or intense emotions good and bad), some mild hair thinning, and skin that easily bruises. Not everyone gets all the listed side effects, and I've come to understand how pred allows me a "new normal" life by reducing the inflammation that went unchecked for 6 months before diagnosis.

I do hope that you will find the folks on this forum helpful and supportive.....that has been my experience, especially during the early days. Remember you can ask us anything, and we will "get it" in ways other won't given our lived experience with PMR/GCA.

If you're ever in my neck of the woods, send me a direct message and can possibly connect.

xx

Leslie

[PMRpro Ambassador]

Are you sure you want your email out in public on social media? Please use the chat function to share such personal information. Yes, we are a closed community - but pretty much anyone can join. From anywhere in the world. We do get trolls - and there may be silent snoopers no-one can do anything about.

[Ryliefew123dogcat in reply to PMRpro]

Ok how do l take that off. It was a mistake. Still getting used to your site. Thanhs

[PMRpro Ambassador in reply to Ryliefew123dogcat]

Click on the box with the downward pointing arrow and you will get a menu that offers Edit and Delete. Use edit and remove the email bit.