Anyone in the USA?

[kenb]

I need to talk with someone about PMR. This really sucks!

[PMRpro Ambassador]

I'm sure there are a few US contributors on here but there are quite a few on this forum which is independent of the UK support groups:

patient.co.uk/forums/discus...

But we aren't xenophobic here - we'll talk to anyone with PMR or GCA wherever they live! I live in Italy for example.

So go ahead and tell us a bit more about yourself - I have been involved in all 3 UK forums for a long time and I haven't come across any US contributors who live close enough to meet yet so what difference does it make? The nearest so far is Vancouver WA and Spokane WA and they are hoping to meet sometime. But they chat on the forum a lot. The internet is a wonderful thing!

[Zoesquare1]

Hi Ken,

I'm in the US - Lexington KY. Like PMRPro says (and she is!), there's a few of us this list that are in the states, but not many.

Where are you? If you want non-virtual support, you can call some of the rheumatologists in your area to find out if anyone knows of a local group. Someday, maybe you can start one, when u feel a better!

I'm going to ask my rheumy if she will support me in starting a group in my area. It's so helpful to talk (either live or virtually) to others - especially those "seasoned" folks who are managing well and/or gone into remission (there's hope!)

The UK seems to be way ahead of the U.S. when it comes to PMR/GCA support groups....

[kenb]

I am in arizona. Just like to ask some questions.

[Zoesquare1 in reply to kenb]

Let em fly!

[jwb43 in reply to kenb]

Kenb I am in Gilbert AZ. Are you still batteling the PMR beast?

[Celestee]

here!! California

[DeliaGray in reply to Celestee]

Celestee, I am in San Francisco with PMR and GCA. Where are you?

[kenb in reply to DeliaGray]

Im in Arizona.

[Celestee in reply to DeliaGray]

Stockton

[kenb in reply to Celestee]

Does enbrel work for PMR?

[DorsetLady PMRGCAuk volunteer]

Hi kenb,

As PMRPro says, you'll find us Brits quite friendly! Despite our reputation as being aloof and reserved, we're not really, deep down.

I can understand you want to find people close to you to talk to about this strange illness called PMR, but there are lots of folk on here who have loads of experience of it! Too much, many would say.

Anyway, welcome to the forum, and feel free to ask any question you like, no matter how trivial it may be. If it's causing you a problem, then don't bottle it up, that only makes it worse! Good luck, DL

[Zoesquare1]

I love this group and I'm a yank. Members of this group are great at getting right back w really good info. Many have been around the block more than a few times w this disease.

[tkoeh405]

I have a very good Dr in Sarasota, Florida. He is a Rheumatology.

[SweetSue]

I'm in Spokane, WA and don't know a soul here with PMR. I felt so lost & alone in this illness that I got diagnosed with in Sept. 2014, UNTIL I found this forum. What a wealth of information and support from people who live no where near me! I only read posts for many months, trying to glean as much information as I could about what was happening to my body. I've learned more here than I ever have from my doctors. If there's anything you want to know, Ken, ask and I bet someone here will know the answer.

[Charlie1boy]

If you haven't already done so, I strongly recommend you get yourself a copy of Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide". You can get it on Amazon, and it is not expensive. I'm sure you will be able to identify with a lot that she writes. I would expect you can get it in the USA.

Meanwhile, I can but endorse all of the replies that you have had. I was diagnosed with PMR at the end of last year, and this forum had been a source of immeasurable help and encouragement.

Good luck!

[Judyta]

Mornin! I'm from New York. I belong to two groups. They are all great supports and friendly people. I have PMR it'll be a year in August. Any one else with sensitive teeth but only on one side . Checked out with dentist and he didn't find anything wrong. To me, as I'm thinking this is weird... There is a cap on that side??? Could there be something from the cap? Going to ask dentist again

Take care, all

[Sheilamac in reply to Judyta]

I have sensitive teeth too, but not just on one side. Was told it was a side effect of the Prednisolone... Hoping it will go as I reduce.

[Sandy1947 in reply to Judyta]

I live in northern NJ and have an apt. in NY for weekends. Where are the support groups you attend? Times? Please send info. New to the PMR dance! Thamks

[Celtic PMRGCAuk volunteer]

Whether or not your tooth sensitivity is due to steroids, Sensodyne Pronamel toothpaste can help.

[Judyta in reply to Celtic]

Already use it. Not sensitive to hot or cold.... Something else is going on.....??????

[1Purplecrow]

Hi, Bellingham Washington here. Another person on this forum lives just South of here. We are growing in numbers.

[Hidden]

Hi, live in small town outside of Des Moines, Iowa. Have got some great info from this site. Also looking for people to talk to

[Skrtjg]

We live in Farwell, Mi

[Skrtjg]

We live in Farwell,MI. He has both PMR and GCA

[Asbeck]

Hi Kenb! Miami, FL here

[PMRpro Ambassador]

Well - that dug you all out of the undergrowth didn't it!!!! I think we should all have little flags to show where we are

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I don't need a flag! Bet you can't guess where I live?

[kenb in reply to DorsetLady]

No idea, where

[DorsetLady PMRGCAuk volunteer in reply to kenb]

Hi kenb. Sorry - did my British sense of humour fail to cross the pond! Dorset, England

[PMRpro Ambassador in reply to DorsetLady]

Er - Devon? Scotland?

[kenb]

Is there anything other than prednisone that will work? I hate this crap.

[DorsetLady PMRGCAuk volunteer in reply to kenb]

Short answer - not as well! That why no drugs companies are interested in researching a replacement. Plus it's cheap. So stick with it, things do improve as you get to lower doses.

[PMRpro Ambassador in reply to kenb]

Then you have to decide which you hate more: the PMR symptoms and disability or the pred. You don't HAVE to take pred - you can opt to stick with the PMR although it would leave you at risk from the effects of long term inflammation on your body which include peripheral vascular disease and cancer. The immobility will lead to possible weight gain and increasing your risk for osteoporosis. The constant pain leaves you at risk of depression.

This isn't just theory - I had 5 years of PMR without pred, not my fault, I didn't choose it, I simply wasn't diagnosed.. Nothing would induce me to go back. And contrary to popular belief amongst many doctors - I still have PMR after over 10 years. It would have been a long time being in pain...

[knit1purl2]

I'm located in Pennsylvania. When Doctor first diagnosed with GCA, I found very helpful info on the Mayo Clinic website. I also have the sensitive teeth on both sides and have resorted to using a straw for very cold drinks. I also switched to Sensodyne when the sensitivity started.

I'm glad I found HealthUnlocked - very friendly, supportive forum and always ready to answer questions.

[cassey1879 in reply to knit1purl2]

Thanks, my teeth have been sensitive too, thought it was from the thrush from the high dose prednisone.

[Sha9rons]

I'm in central Virginia and have dealt with this for about 6 months now, no end in sight and from researching, it will be a long road of year or more to recover as I also has GCA.

Now tapered to 25mg of prednisone from initial 40+mg but still have fatigue, leg pain and weakness and deteriorated vision. First appointment with rheumatologist is next month and hoping for lots of answers....

[kenb in reply to Sha9rons]

I have learned not to expect much from the doctors. We know more than they do about this. Sad but true.

[Stormy87]

I live in North Carolina. Are there any "meetings", "conventions", either here in the U.S. or in Europe?

Robin

[PMRpixie]

Hello. I live in Lake Oswego Oregon. I was Diagnosed January 2015. Is a difficult illness to describe to people. Is hard for people to get a feel for how disabling and painful it is. Is odd that there doesn't seem to be a support system here in the US. Found one forum but no one ever responds. Let me know of any of you out there in the USA. Am thankful for UK angels who are active in their generous support of anyone - especially us across the pond.

[PamelAnneCT in reply to PMRpixie]

Hi Alison......Connecticut here. Diagnosed last month, horrible experience. Feeling mildly better, but not good. Quite a learning experience! I highly recommend Kate Gilbert's book, read it twice already. Have a good day.

[gailmax1 in reply to PMRpixie]

Hi Alison! I'm in Mulino, Oregon...10 mi S of Oregon City! you are the closest so far!!!

I'd like to make a comment to the group across the pond. Each and everyone of you are incredible. I have learned so much. Not just about my symptoms but the whole gammit of PMR/GCA. Absolutely invaluable information. I thank you for your frank suggestions and opinions. I thank you for your kind words and your sincere comments. Everyone on this sight is the best in my book! Best Regards, Gail

[PamelAnneCT]

Connecticut here. It's sad how little support is available here. I'm going to try and get a 'live' support network/group going. I now know of 4 people in my little town who have autoimmune diseases, I imagine in our area there are many more. Talking to others who are experiencing or have experienced the effects has made me feel hopeful. So glad I found this forum!

[DeliaGray]

I am in San Francisco Ken if you have questions. I was diagnosed in July of 2014.

[kenb in reply to DeliaGray]

Hi Delia, im down to 5 mg pred. I also give myself an enbrell shot in the gut every sunday. I dont think the enbrell works for pmr, but my reumy doesnt seem to believe pmr is a real thing.

[DeliaGray]

HI Ken,

You are doing well down to 5 mg. I have GCA and PMR and a month ago I tried going to 8 from 9 and had another flare-up. When were you diagnosed? I have had to go back up to 10, but had all my blood tests done last week and they were perfect. I am very pleased about that as I am about to take a 5 week trip to visit family in England. I will stay at 10 until I return as I do not want problems whilst traveling. I am actually feeling very good now . Crazy that your rheumy doesn't think there is such a thing as PMR. He should try having it. !!!! I haven't had enbrell so have no knowledge of how it works. The one i hate is Alendronic Acid. I have just taken my weekly dose this morning, but if it stops osteoporosis ( and I am borderline ) I will continue taking it. I just remind myself that there are many people with more challenging things going on. Have a great day today.

[kenb in reply to DeliaGray]

I was in the hospital, pretty much couldnt move. A lady doctor seem to recognize my symptoms, thank god for her. Gave me 15 mg of pred, I was waliking the halls that night. That was in march. My current doctor doesnt seem to think pmr is a thing. Wants me off of pred, has me taking enbrell shots.

[Reneej]

I live in West Palm Beach, Florida in the winter and New York in the summer. Diagnosed in April 2015, started on 20 mg. Pain free so decreased 10% and got down to 7.5 mg beginning of this month. Just travelled to Vietnam and Cambodia and had to increase to 10mg because of all the walking, getting up early AND the 24 hrs of travelling! Will start the decrease again when I return to Florida. Only pain I still have are in my wrists and hands which go away within a few hrs of taking the pred. BTW, I split my dose....half in the morning and then 12 hrs later. My rheumy said the pred lasts 12-16 hrs. Originally took all in the morning, but by 2am I was woken with arm, wrist and hand pain. Splitting it seems to work.

[Hidden]

Yes it does! PMR since May 2015 and live in Az. Have done holistic approach - mostly vegetarian diet, organic foods and no processed foods. No medication except Advil. Just happened upon new Bemer technology - electromagnetic therapy! Unbelievable results, mobility improved immensely! Taken pain from sometime high of 10 to 2! Let me know if you are in Gilbert, Az area and you can give it a try.