From US?

[preith17022]

Is anyone on this forum from the US? I notice UK and Australia more than not.

Just wondering.

Have a great day

[PMRpro Ambassador]

There are probably more from the US and Canada than from Australia, The preponderance of UK members is because this is a UK-based charity. But it is a totally international group.

[DorsetLady PMRGCAuk volunteer]

Quite a lot from US…it’s is a UK based charity, but we have members from many different countries … Australia , New Zealand, Europe, North America…..

Do you have PMR or GCA- can’t see anything in your profile/bio to say you do.

[preith17022 in reply to DorsetLady]

My husband has PMR and I am his caregiver

[DorsetLady PMRGCAuk volunteer in reply to preith17022]

Sorry to hear about your hubby -but anything we can help with, please ask.

[piglette]

We are international and welcome everyone, but we were Made in UK!

[moonieboy9358]

I am from Connecticut

[Kittymom7]

From Texas, US

[GrandmaPirate]

And I live in Belgium. The exchange of thoughts and treatments originating from different parts in the world is very helpful and makes me realize that PMR patients are everywhere but rheumatologists and treatments are not everywhere available in the same way. I have been lucky with my rheumy and our health care system.

[Birdfriend]

Yes, from Chicago ,Illinois

[sidra1968 in reply to Birdfriend]

I am from Chicago, too! Live down in Mackinaw IL now between Bloomington and Peoria (in the country) Hello!

[Birdfriend in reply to sidra1968]

Hello!

[Miacaro45]

I am from the US

[SLCR]

St Louis Missouri

[MrsMarigold]

New Orleans, Louisiana. Don’t have PMR.

I have lupus and other AI diseases. Ladies and gentlemen are keenly kind and knowledgeable. 💜

[PMR2011]

From Maine I’m the US. Yes, forum is very knowledgeable and supportive. Differences between treatment in various countries is frequently mentioned when folks post. Best to you and your husband.

[papadapadoo in reply to PMR2011]

Also a Mainer! Very good healthcare in this area, fortunately. I have PMR and am taking low-dose naltrexone along with the prednisone.

[VOTSODsurvivor]

North woods of Michigan. PMR for nearly 4 years now. Still on prednisone but trying the tapering plans from my friends here. This group has been a HUGE encouragement and source of quality advice.

[perceptual63]

Living in Saint Petersburg, Florida but originally from New York.

Have also lived in New Jersey and Texas.

I've had PMR since January 2022 and currently holding steady on 12 mg of prednisone.

[Chicama]

Bucks County PA. Welcome to you and your husband. This is kind and experienced group. I joined last year , read daily for tips and ask for feedback at critical junctures. You might consider giving to the charity. They are a blessing.

[preith17022 in reply to Chicama]

Thank you. I will

[montebello]

Montebello, VA

[Sdsd70]

From Canada. Have found this group very helpful. Got pmr in Nov. started on 15 mg of prednisone and now down to 1. I credit diet and daily supplements with helping. Or - just lucky - so far.

[singingloud]

I’m from Michigan. I wish we had support groups to meet with here.

[DorsetLady PMRGCAuk volunteer in reply to singingloud]

You could always start a zoom or messenger group. Ask the question on the main forum and get interested members to send you a chat message so it’s private and they can add email address…

… it’s a start!

Although you can add 10 people to the chat facility it’s not very satisfactory-and you can’t see others whereas the other ways I’ve suggested you can.

[singingloud in reply to DorsetLady]

Great suggestion DorsetLady.

[DorsetLady PMRGCAuk volunteer in reply to singingloud]

Give it a go - worth a try… always nice to be able to see and talk to others

[Wizards in reply to singingloud]

I'm from Ontario canada. Many years ago another pmr suffer from Florida and i started a site similar but our IT person left after 1yr so it ended.

However many of us stay in touch. As for local I have twice met people personally through this site and we meet up regularly.

8 yrs on prednisone, remission January 2023

[Cofab2 in reply to singingloud]

I am in mid Michigan, cannot say enough good about this forum. It saved my sanity, knowing I wasn’t alone with this.

[nallufl24]

I have GCA and from the Pittsburgh PA area. I have learned a lot from this site. The Ambassadors here are very knowledgeable unlike many on the Facebook support group.

[singingloud in reply to nallufl24]

This is my favorite support group. I quit the Facebook groups.

[Joseph14612]

New York.

[Seal49]

I am too.

[Maltesemama]

I am. Living in beautiful Florida

[GCAinCarolina]

Live in North Carolina. Appreciate the information and commentary on this group.

[fmkkm in reply to GCAinCarolina]

Hi! I’m in Raleigh, NC.

[GCAinCarolina in reply to fmkkm]

I live in Raleigh also.Diagnosed with GCA about 20 months ago, lost vision in one eye,spent 3 days in Rex Hospital,got positive biopsy. On prednisone for 14 months,weaned off & now on Actemra.

[fmkkm in reply to GCAinCarolina]

I’m more accurately in Apex. That’s great you’ve gotten off prednisone. I’m on 3 mg down from 40 in 2016. Can’t seem to get below 2.5.

[DorsetLady PMRGCAuk volunteer in reply to fmkkm]

3- 2.5mg is a fairly benign dose, so hopefully nobody should be getting too stressed about you being there…But are you using a slower tapering plan we are always suggesting on here when you try and reduce?

[fmkkm in reply to DorsetLady]

Hi there, you know my problem has never been the taper, I follow your advice and go slow. My problem is life itself, the stress seems to clobber me. Last week for instance, I had to take my husband to the ER and it ended up being a pulmonary embolism. Not much sleep, a few stressful days etc., etc….. So this week I’m having a minor flare. My good Rheumatologist retired a couple years ago and they assigned me to a physician assistant (PA) who doesn’t instill confidence. So I’m thinking until life stops throwing punches or I learn to handle stress better, I may be on a low dose. I’m okay with that and yes at some point a doctor might insist I get off.

[PMRpro Ambassador in reply to fmkkm]

Sounds very much as if - like me - your dose of pred is enough for day to day living but not the life events that need a spike. I had to get through to my bank in the UK today to find out how to do something, The keypad-led choices don't work from here so that starts the whole thing off on a bad foot as they insist on telling me that it is sooooo much easier online!! Eventually I get through to a person - by which time I am almost in tears!

[Rachmaninov2 in reply to PMRpro]

Hope you are OK now. I really do empathise, when something like that happens to me it knocks me for six for the rest of that day. It happened yesterday and left me feeling quite unwell.

[fmkkm in reply to PMRpro]

Yes, that’s right. And, unfortunately, most doctors don’t believe how much life events contribute to the disease.

[DorsetLady PMRGCAuk volunteer in reply to fmkkm]

Sorry to hear about your husband.🌸

Unfortunately life doesn’t stop throwing punches -ever -and whilst healthy people can deal with those more easily (won’t say easy as it’s never easy). However for those with an underlying illness especially when adrenals have been affected by long term steroid use it really knocks them for six. Not helped when medical people don’t fully understand how theses illnesses really affect their patients.

As you say, if you need a low dose to give you a decent quality of life, then so be it.

All the best.

[PMRpro Ambassador in reply to DorsetLady]

I mentioned it to the Pain Clinic doctor on Tuesday - no questions, got it in one!

[Chris_1236 in reply to GCAinCarolina]

Dunn-Benson area in NC.

[LIVEORDIEHEREIAM]

I am. Michigan is home.

[Cofab2]

Hi, preith, I am in the USA, in the Mid West. I found this forum shortly after the PMR diagnosis in 2015. When finding this forum, it was a life saver. I found the help, and seeing others with it, and different effects. At the time here in the US it appeared there wasn’t a lot information available, not just to patients, but also to the Drs. I helped to educate my Rheumatologist with things I read on the forum. But, it was my PC Dr. who researched my symptoms and diagnosed it. I had many side effects from pred., but the benefits outweighed those. I am down to 5mg, and Dr. says that’s my dose for rest of my life, as trying to go lower, I flare!

[Fiesty]

From Nashville Tennessee. Had PMR/GCA for 6 years now.

[sidra1968]

I am! Central Illinois here. Welcome!

[Plantingwithfaith]

Arizona

[jls93]

Massachusetts

[Janetknit]

Minnesota, USA

[brenda1207]

Yes, I am from the US..Texas. I have PMR and GCA since 2018.

[Navelex]

Yes - Lincoln, California.

[BlueBigfoot]

Northern California. PMR since March 2021.

[tmar4949]

I'm in Upstate NY

[Sunnyday365]

Upstate NY and thankful for this site especially tapering advice not matter what country!

[Darkchocolate1]

I am in the US. Thankful I am able to have access to this wonderful forum. So helpful, kind and knowledgeable.

[singingloud]

I went to Mayo in fall of 2020. Excellent experience.

[Jandm778]

From Abington, Pennsylvania

I have PMR, and have gotten lots of good information.

[Karenjaninaz]

I live in NJ.

[benhemp]

I follow this forum and am from the US (NY state). I have found this group to be the best source of information for PMR and am very grateful for it. One area where I'd like more info is how to find a good rheumatologist in my area. Being a UK-based forum, there seems to be a lot more helpful info about finding a good rheumatologist in the UK than finding one in the US.

[DorsetLady PMRGCAuk volunteer in reply to benhemp]

The difference in the size of countries doesn’t help, nor probably the differing health systems etc, but there’s nothing stopping you asking the question in a post.

Nothing lost in asking…

[preith17022 in reply to benhemp]

Exactly

[preith17022 in reply to benhemp]

Exactly

[COCOGEE]

I live in MISSISSIPPI , USA

[Preacherball]

Yes, suburb of Minneapolis.. GCA for 2 years now treated by U. of MN. rheumy

[ab58sf]

Yes, I am from the U.S. Have had PMR since April, 2021. On Prednisone. 2.5mgs per day. Skin is the worse side effect. Bruise easily.

[marvalusxoxo]

Yes, I'm from GA USA