DVD 'You Are Not Alone' | Arthritis Information

 

Yesterday on the 12 May 2010  the DVD  ' You are not Alone' was launched in Newcastle upon Tyne UK.

www.pmr-gca-northeast.org.uk - and click on the DVD link you can read all about it. The rest of the site is informative as well.

25 patients and one Professor met in March 2008 the result was a National Charity called PMR&GCAUK launched March 2010.  (they have a website)

Support groups Tayside, Southend and East Anglia existed previously and Tayside has a website. 

Two of us who resided in  the North East met a third lady and formed PMR&GCAUK North East Support

The result is a DVD made by people with PMR and GCA, with Consultant Rheumatologists, Opthamologist, Pharmacists, Dietician, Physio and PATIENTS and our website link above and quarterly meetings.

We in the UK are determined to raise awareness.   Join in.




Way to go Mrs UK.  Thank goodness the poly people have you on their side.  Great work.

Is the DVD available to persons who live in the U.S. ? I looked at the order form and it doesn't appear to be...payment must be in pounds sterling, etc.
I'm new to the Forum.
thanks!

Freesia

Yes it is available to other countries,  but first of all you need to check that your DVD player is multi regional or it may not play. £5 postage and packing mentioned on the website applies to UK only.

If you wish to order you will need to pay £7 sterling - your bank will be able to supply you with an order in sterling. Download the order form and post it with the money order.

Sorry to see you are new to this forum, I assume you have PMR and can also tell you that a website, called Patients Experience, located in the UK, also has a forum and quite a few who post here, also post on that forum.  Some questions are different to the ones asked here and also we are busy raising the profile, and looking for cause and cure.

Good Luck on your journey.


Freesia and Mrs. UK,

I live in the U.S. and have already received my copy of "You are not alone". I emailed the site that sent it to me. She had me download the form, fill it out and send it with a check for .22, U.S. The DVD didn't play on my DVD player, but I was able to view it on my computer. I found it to be really informative. As we have no support group in our neck of the woods, it helped me to see other folks out there with PMR that are coping. I have never met anyone with PMR other than on this website, so it really did help me to feel "not alone".
Thanks for all your hard work,
JannieMontanawoman

Jannie.

I know you sent it with a US cheque as you were told.  However, we discovered that is would cost us more to bank the cheque from you than what it was worth.

So your cheque won't be presented.

I am so glad you were able to view it on your computer,  as  again, I did not realise the DVD would not play on all machines.  Trust manufacturers to make life difficult.

You were our first order from the States, so we learnt how to deal with international orders from yours.

Not bad going for three silver surfers, one 72, and two in their sixties.  Yes I am the one on overdraft time  (three score years and ten). 

I am so pleased you found the DVD helpful.  And if you ever want to visit another forum, Patients Experience UK is so lively, helpful and funny.  Google it.


Thank you, mrs UK and montanawoman, for the information about the DVD and about the other support group.

Yes, I'm 63 and  was just diagnosed in January 2010 and I can't figure out why I got this disease.  But then, I guess no one knows why or how they got it.  I just wish I knew how to cure it! It seems as if prednisone only helps one to live with it, but doesn't get rid of it. (?) Is that right, from what you have experienced?

Right now I am taking 10 mg of prednisone per day.  When I was diagnosed I started on a fairly low dose compared to what I've seen people report here--only 12.5 mg, dropping to 10 mg after 2 days.  I felt lots better after taking the 12.5 mg, but haven't ever gotten to the point where I have no pain at all.  I had an episode where I passed out from dehydration after a few days on 10 mg ( and I was drinking plenty of water so how did that happen? scared the heck out of me), so my doc had me drop to 7.5 mg. I found that I was still very crippled in the morning and only felt more limber in the afternoons.

 I started seeing a rheumatologist early on because my doctor didn't feel totally comfortable with the tapering off....at least, we thought there would be a successful tapering off... NOT !! I got down to 5 mg but I was crippled all day instead of just from morning til early afternoon.
So I went back up to 7 mg but that still was not enough and now I have back up to 10 mg. for two weeks, and feeling lots better.  What a long and complicated journey! Not to mention tiring.

My rheumy suggested taking methotrexate but I am afraid to take it.  I worry about side effects with the pred and I'm afraid I'd be worrying all the time if I took methotrexate. 

I've never liked taking any kind of medications, so this is like my worst nightmare, being in a position where I have to take a medication for an undetermined amount of time, with a lot of possible side effects.  I had GERD before I started the prednisone, but it was in remission. The pred got my GERD back into gear, so I have to take Zantac (ranitidine) twice a day. 

I have so many questions about pmr. I may write them down and post them in an individual post.  Thanks everyone, it's good to be in a place with people who understand! That's the other thing...people think I have "arthritis" etc--and I can't explain to them what it's like!  If I didn't have this disease myself, I wouldn't understand it !

Thanks and take care.
freesia
freesia

visit www.pmr-gca-northeast.org.uk  = diagnostics, people's stories and loads of information and links.

Fast drop if just diagnosed in January this year.  Click on Useful Information on the Home Page and then read up on the diagnosis and management of PMR guidelines issued by the BSR June 2009.

Come back here with questions that you may still have and you will have some I assure you.
Thanks so much for your help, mrs UK, I will check out the links you posted!

freesia
Mrs. UK,
I'm sorry that my check was not able to be cashed. Would you like me to pay in some other way for the DVD? If so, let me know and I will do so. I'll do whatever to support the cause. It seems that the UK is way ahead of the U.S. as far as support and research.

Thanks so much,

JannieI went to my bank and asked them about a money order in U.K. pounds sterling and they said they can't do it! They can only issue orders for U.S. currency.  What about a bank order in the dollar amount that equals 7 pounds sterling? Would that work?

freesia
Montanawoman

Do not worry about the cheque, I have framed it.  We don't mind, just glad it helped you.

We might in the future be able to use paypal or some other way.

Our bank said we would have to charge something like 15 dollars, but that is just not on - in this day and age it seems outrageous that banks etc can just add charges like nobodies business.

Next year in May 2011 the group in Scotland (PMR & GCA Scotland) is holding the first conference for PMR & GCA Patients, run by patients for patients.  Can't wait.

Just enjoy and wish us all the best.  By the way the NMR Foundation in USA seem to be making some progress.


bumpThis is not spam.  It is information for people who have polymyalgia.Montanwoman

Do not worry, I posted somewhere else and told you just to forget it all.  We are just pleased the DVD reached you.

It was a learning curve we now how that unless you can get a US Bank to issue a sterling cheque, then it would be up to 15 dollars to cover the costs.  Pretty hefty charge for a DVD.

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