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Just returned from seeing Rheumy! Oh dear...

Posted , 12 users are following.

linda17563
linda17563

Have just had my much awaited for appointment...well, we did not agree at all...Feeling ill, with blurred vision and very drained, practically house bound to cut a long story short...I had in the meantime split mt my dose since last week.  She told me I MUST get off these steroids, because three years is far too long, I went up to 15mg xmas gone, because of the blurred vision, she now says I must come down 1mg per month, so I suggested when I get to 10mg, that I do it slower....no way, (but I am!) she says the report which I quoted was rubbish, about less relapses....I have had a blood test, and I`m to have another if I get a flare, but whatever happens, I must come off them.  Because of having Fibromyalgia as well (20years) and not being able to tolerate any bisphohonates (?) bone thickeners as I call them, I`m to have a yearly injection, I would welcome any comments from anyone who has had this....All I can say is she would not budge from what she believed, and certainly wouldn`t listen to me.  She ended by saying dosn`t worry, you`ll be off these awful steroids soon!....( I hope so one day, my way, it will be......SLOWLY)

2 likes, 29 replies

29 Replies

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  • snapperblue
    snapperblue linda17563

    Posted

    Hi, Linda:  What an infuriating experience.  

    Did you give your rheumatologist a copy of the articles?  It might be harder for her to dismiss them out of hand if she sees that they are written by specialists for doctors, rather than just giving her your summary of the results.

    In regard to the annual IV infusion to protect against osteoporosis, I did this when I faced being on a relatively high dose of pred.  In the US it is called Reclast.  However, I already HAD osteoporosis.  For me, I decided it made sense. I did not have any noticeable reaction to the infusion.  It certainly makes sense to have a bone density scan before you start this; if it is OK now, you can monitor over time and see whether protecting your bone density is needed.

    Does this doctor offer an urgent, compelling reason to get off the prednisone?  We’d all like to got off the stuff, but not if it is serving a purpose.  I don’t know what your symptoms and side effects are, so I don’t know whether her advice is outrageous, but she does not seem to be open to information you provide or sensitive to how YOU are doing, rather than expecting you to meet her expectations.

    I recently expressed concern (in an email) to my GP about having to go back up to 25 mg following a PMR flare after traveling.  He replied, “Every individual is different with pmr.  People speak about dosing in ‘averages’.  We must treat the patient.”  It is a mystery to me why some doctors do not follow this pretty obvious philosophy!

    I hope you can work things out with your GP or with another doctor and follow a reasonable course that reduces the steroid (a good thing) but does not lead to flares (a really bad thing!)

  • EileenH
    EileenH linda17563

    Posted

    Time for a different rheumatologist who isn't so full of themselves. Any doctor who won't listen to and work with the patient isn't worth your time.

    And oh dear - I'm obviously going to self-combust. i've been on pred nearly 6 years now. Not likely to stop any time soon as far as I can see.

    • linda17563
      linda17563 EileenH

      Posted

      I did ask my doctor if I could see someone else, but she said if you`ve already been seen by one, you`ll probably be sent back to her....I`ll have to find out how to change toanother one!  I have asked on another post, how to find out about the injection she`s insisting I have for osteopenia, I want to make that decision my self....she wouldn`t allow me to "wait and see"  well I`m going to decide!  I must say when I left her room, and being told off for being on steroids for three years, I felt like I was leaving rehab!wink
    • EileenH
      EileenH linda17563

      Posted

      Is a single private consultation an option? Am I remembering correctly - you are in Devon? I have yet to "meet" anyone with good experiences there.
    • linda17563
      linda17563 EileenH

      Posted

      NO, I`m in Norfolk, and go to the Norfolk and Norwich Hospital....Only thing I can say, I never have to wait long for an appointent, and her secretary will speak to you as well...I have thought about a private consultation, I have "Spire" near me, so I suppose I would have to go there?
    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Eileen, a comment like "you've been on preds now for 3 years" might make you want to combust, whilst it puts the fear of God in me. I've been on preds since dec 2013 and am presently on 8.5 following a flare in December last year. So given that info and a timeline I will definately not be off preds in 3 years!

      as you say this condition is different for every single one of us so to treat us all the same is nonsense and a throw away comment like that is very destructive. Just like most sufferers of PMR I want to be off the preds ASAP, but I also don't want PMR. Well I've both, I've accepted both the condition and the preds and that's the way it's going to be. I'll be better as soon as the condition burns itself out and in the meantime I'll keep taking the preds reducing slowly and surely. All the best, christina 

    • EileenH
      EileenH linda17563

      Posted

      Private you can go anywhere YOU like and I would suggest a day trip to t'other side of London to one particular private person...
    • EileenH
      EileenH tina-uk_cwall

      Posted

      I didn't mean it made me want to combust - I meant obviously as far as this particular rheumatologist is concerned that is what is going to happen to me after being on pred for such a long time...

      For the last 5 years I have been "meeting" patients who are terrified of being put on a moderate dose of pred anyway and to meet then with a doctor with that sort of attitude just makes it all so much more difficult. They try to force the patient off pred quickly, cause flares and relapses and each time getting the symptoms under control is more difficult. If they aren't going to allow the patient to use the pred to give them some QOL as required why do they bother giving them pred in the first place? Not enough pred is the same as no pred - so don't bother at all. Leave the patient in pain, immobile and unable to have a decent life...

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Hi Eileen, I couldn't agree more. Nice to have you back, I understand you've had a few days off, r & r. You deserve it. Regards, christina 
    • Susanne_M_UK
      Susanne_M_UK EileenH

      Posted

      Hope you enjoyed a few Aperol Spritz while you were away.:-)
    • EileenH
      EileenH tina-uk_cwall

      Posted

      Few days on Lake Garda where keeping up with the forums was easy. Just had to take our camper for its "habitation check" for the guarantee - is there water ingress? No, and it was the last one...

      I was ill the night before we went and didn't clear the in-box before leaving and then getting internet has been a bit variable. I have just sat down to 91 unanswered notifications! After 2 days! God help me when we go to China in the summer...

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