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So here's the deal

Posted , 12 users are following.

elizabeth53956
elizabeth53956

I'm mad at my doctor. REALLY mad. REALLY REALLY mad. Is that enogh REALLYS? She and I talked in her office for an hour or more. She was wonderful, let me vent. let me say it all. Gave me the secret code if I need to talk. But I'm still mad.  I'm a nice person, but I'm holding onto this anger. I realized yesterday that I'm actually counting up grievances against here. It's like the worst disagreement with your husband, and you have to look at him across the table over the corn flakes in the morning. So yesterday I started comparing this to Elizabeth Kubler-Ross's paridigm in her book Death and Dying, and the stages. There is denial, depression, bargaining, anger, resolution and acceptance. I think with her, my doc,  I got stuck in the Anger stage. So I have to either give up my anger at her (but I want to hold onto it) LOL, and allow her to be my doctor as she was pre PMR or find another doctor. You gals who said I'm nice don't realize that I can also be controlling and stubborn. Someone said something yesterday on here that got me thinking about this. I have such an edge even if I have to call the office. This is not helping me at all. It was so helpful yesterday because it made me think about my attitude toward her.  My hubster and I talked about it today when we were in the car, and I was really acting like a spoiled brat about her. Time to grow up Elizabeth. But even being able to act it out with him made me realize that it's decision time. Grow up and move on, or change doctors. I think that I'll actually be a grown up, and get over it.  LOL.  I have a friend and when she's acting like a contrite child she'll call and say that she was actually a grown up today. And she'll tell me what she did. Then we laugh about it. So it's time for me to act like a grown up.  If I don't then I have to let her off of the hook, and find a doctor who can help me. I think not calling about the med decrease was part of my acting out. I don't know 'cause I'm just trying all of this out, but it seems like I do need to talk with her. So I called yesterday, and she won't be back until Monday.  Drat, and I go to 5 mg. tomorrow. Way too low.   So I have to call and talk to the covering physician, and I want her. I want my Mommy. Grow up Elizabeth, or reduce your pred and suffer.   Then I can blame her. LOL. Thanks for letting me vent.

0 likes, 35 replies

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  • artfingers
    artfingers elizabeth53956

    Posted

    I really don't understand why so many doctors have regimes that reduce the dosage of pred way too quickly and at leaps of 5 mg.  It is too fast.  I can barely tolerate a reduction of .5 mg and do that with Eileen's slow reduction rate (Dead Slow).  I'd get mad too!  Eileen you need to publish a blog/website and then we can send all the docs to it! 
    • lodgerUK_NE
      lodgerUK_NE artfingers

      Posted

      Eileen, was a major contributo ta booklet called 'Living with PMR & GCA'. written by Patients for Patients.  The booklet costs £5 (very little profit - we just covered costs).  it can be bought from pmr gca uk north east. A very small charity run by volunteers.

      Alternatively, you can join as a member, an out of area email  member and if you do so, you get a whole package which includes the booklet, a DVD, a Steroid Medication Record Booklet and an Alert Card.  You also get up to date information and two newsletters a year (take a look at back editions on the website - loads of info and articles.

      Take a look at the website - well worth 10 minutes of your time. 

      Follow this link to another part of this site.

      http://www.patient.co.uk/forums/discuss/pmr-gca-website-addresses-and-resources-35316

       

    • EileenH
      EileenH artfingers

      Posted

      It is purely because that is how pred is used in other illnesses in short or longer tapers. If the disease has inflammation then the pred reduces it quickly and something like antibiotics or asthma medication prevents the return. It's the same in many forms of arthritis - a patient has a RA flare and pred is used to relieve the flare until the usual DMARD medication takes over the job. There is another medication contributing to the anti-inflammatory action. That doesn't happen in PMR - every morning a new source of the inflammation is shed in the body because of the autoimmune disorder and pred is the only version of a "DMARD" there is. They just don't get the idea that for us the pred is the maintenance drug, they are too terrified of it.

      No clinical studies have been done in the past about optimum ways of using pred - we are doing it, but we aren't doing it scientifically. We're just providing anecdotal evidence. There are doctors who use it - a rheumy in the US somewhere has something very similar on his website. Other rheumies have approved it for patients who found it here - others have sneered but come round to the idea when faced with a self-confident patient for whom it has worked.

      And a group in the north of England ARE now using it in a clinical study. I should be able to tell you more in a few weeks after they've presented the progress they are making at a meeting I'm going to as a Patient Research Partner. Whether they find it makes a difference or not though - more and more patients are finding a SLOW reduction works for them because we tell them about it.

      Me blog/have a website? What am I doing here wink  ?  But listen to what patients say on the forums - one lady said today she'd spoken to her first rheumy of what she'd read on another forum which is backed by the PMRGCAUK national group. Basically it is the same you read here. The doctor looked down his nose and sent the nurse to get the hospital leaflet about GCA "THIS is MUCH better". But it wasn't written by patients with personal experience and she'd already seen it anyway. 

      There are very few doctors who are comfortable with the well-informed and expert patient. The others rank us here alongside all the other stuff found via "Dr Google" and Dr Oz and co. We in the charities are in contact with some who DO appreciate what we do - and they are spreading the word. We will get there - and as lodgerUk says - the situation is FAR better than it was. Follow her link - and think about what she says.

    • linda17563
      linda17563 EileenH

      Posted

      Can`t imagine my Rheumy listening to any evidence from patients....she certainly dosen`t listen to me.  I told my doctor and her, I only look at "Patient Uk" and that`s what I believe to be true with steroids, because we are the ones taking them, doctor agreed, but Rheumy gave me withering look....came out with "roidrage"....rolleyes
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