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USA Posters.

Posted , 6 users are following.

lodgerUK_NE
lodgerUK_NE

Virtual Support and to talk via phone calls.

 

How good it would be to have PMR people to communicate with and compare notes here in the US.  It would also be nice to know if individuals are interested in email exchanges or actual phone contact.  I suppose that would depend on each individual's preference. 

If anyone in the USA is interested and would like the email address of both Mary and Audrey whom I have put in contact with each other.   They would love to hear from other people form over that big pond.

Just send me a pm with your email address and name and I will send you both email addresses. 

You never know the outcome of contactssmile.

The National Medical Foundation located in Arizona used to be run for PMR & GCA people and did a lot of good work, we have made enquires and find they are no longer in existence which is sad. 

That does not mean you give up coming to this site either.

 

0 likes, 4 replies

4 Replies

  • lodgerUK_NE
    lodgerUK_NE

    Posted

    That was a quick PM  and another two people are in touch with each other.  smile
  • linda06830
    linda06830 lodgerUK_NE

    Posted

    I'm in the he US and would welcome an exchange of dialogue with people dealing with PMR.  I think there is a very great need here.  Saw at the doc office this week that there is a GCA support, but nothing for PMR.

     

  • Dave-California
    Dave-California lodgerUK_NE

    Posted

    Hi Lodger,

    I'm another PMR 'Brit' (family in the Lake District) living in the US and have been PMR'd for over18 months – (almost 70 yr old male – but young at heart !)..

    I have a good Internist and a fairly good Rheumatologist - but "Patient" and all the knowledgeable folks in the Forum have given me more guidance than my doctors. In fact, on each of my three monthly visits, I chart out on Excel how I have been feeling and how this relates to the medication dose levels, any changes I have made, and I lay down the plan on Excel spreadsheet for the next three months - the doctor almost always fully agrees ! I think is very beneficial to show the doctors in a graphic format how you have been feeling on a daily basis as there is no real oral way to do this. I think all PMR patients should keep daily diaries for the doctors to review - simple graphics showing the overall period between visits. Anyone who wants a copy of my Excel diary format and chart is welcome.

    I am 'crawling' down to 4.5 mg of pred and am also taking 25 mg of MTX once a week and I seem to be doing OK - extending my tapers of 0.5 mg as long as 2-3 months each, based on my 'feelings'.

    It would be great to have a US branch of Patient or just personal communication via email as there is a 'huge' difference between the knowledge of doctors in the US and Northern Europe when it comes to PMR.

    Thanks to you, Eileen and others for your knowledgeable input that is a strong benefit for all of us PMR'ers worldwide.

    Best - Dave

    • lodgerUK_NE
      lodgerUK_NE Dave-California

      Posted

      Dave if you want to get in touch with the others, I need a PM with your email address on.

      This acts like permission to pass on details which would not normally be passed on.

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